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Sample records for family care givers

  1. The contributions of family care-givers at end of life : A national post-bereavement census survey of cancer carers' hours of care and expenditures

    NARCIS (Netherlands)

    Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn

    Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or

  2. Reported care giver strategies for improving drinking water for young children.

    Science.gov (United States)

    McLennan, John D; Farrelly, Ashley

    2010-11-01

    Care givers may engage in a variety of strategies to try and improve drinking water for children. However, the pattern of these efforts is not well known, particularly for young children in high-risk situations. The objective of this study was to determine care giver-reported strategies for young children with (1) undernutrition and (2) living in an unplanned poor peri-urban community in the Dominican Republic. Practices reported by care givers of young children from a community and clinic group were extracted from interviews conducted between 2004 and 2008 (n = 563). These results were compared to two previous similar samples interviewed in 1997 (n = 341). Bottled water is currently the most prevalent reported strategy for improving drinking water for young children. Its use increased from 6% to 69% in the community samples over the last decade and from 13% to 79% in the clinic samples. Boiling water continues to be a common strategy, particularly for the youngest children, though its overall use has decreased over time. Household-level chlorination is infrequently used and has dropped over time. Care givers are increasingly turning to bottled water in an attempt to provide safe drinking water for their children. While this may represent a positive trend for protecting children from water-transmitted diseases, it may represent an inefficient approach to safe drinking water provision that may place a financial burden on low-income families.

  3. The meaning of care dependency as shared by care givers and care recipients : a concept analysis

    NARCIS (Netherlands)

    Boggatz, Thomas; Dijkstra, Ate; Lohrmann, Christa; Dassen, Theo

    2007-01-01

    Aim. This paper is a report of a concept analysis to identify a meaning of care dependency that can be shared by both care givers and care recipients. Background. Care dependency can be perceived from the care recipient's and the care giver's perspective. To allow for comparisons, both sides should

  4. Investigation of General Health in Female Care givers of Elderly People With Alzheimer

    Directory of Open Access Journals (Sweden)

    Farideh Bastani

    2010-10-01

    Full Text Available Objectives: The purpose of this study was to explore the general health status in women as care givers of the elderly people with Alzheimer who attending to the Iranian Association of Alzheimer’s Disease. Methods & Materials: In this descriptive –cross sectional study as a introductory stage of a randomized controlled field trial, 150 women were recruited with a consecutive sampling method. The study population of this study included the women as family care givers attending to the Iranian Association of Alzheimer Disease. In this study, the inclusion criteria was consisted of women who had 18-60 years old, be a close relative to elderly patients with Alzheimer disease, as well as they have had direct caring with the duration of at least six months. Data collection regarding assessment of general health of the women was a questionnaire including 28 items of Persian version of the General Health Questionnaire (GHQ. For data analysis, descriptive statistics and chi square were used in the study. Results: The study findings showed that only 24% of the subjects had a good level of general health, but 58.7% and 17.3% of them had a moderate and weak general health respectively. There were significant relations between general health of the women as care givers and the variables such as age (P=0.016, occupation (P=0.008, type of relative (P=0.013, and economic status (P=0.049. However, there were not any significant relation between general health and the other variables of marriage situation (P=0.5, education (P=0.07, and duration of caring the elderly patients with Alzheimer (P=0.205. Conclusion: According to the findings, the considerable percentage of the female care givers of elders with Alzheimer disease did not pose optimum level of general health. As Care givers’ gender centered studies have seldom conducted in Iran, future researches should focus on different dimensions of health promotion among both male and female care givers.

  5. Perceptions of informal care givers: health and support services provided to people with multiple sclerosis.

    Science.gov (United States)

    Buchanan, Robert; Radin, Dagmar; Chakravorty, Bonnie J; Tyry, Tuula

    2010-01-01

    About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assistance. The data presented in this study were collected in a national survey of 530 informal care givers to people with MS who have greater levels of physical dependency. About 70% of informal care givers responded that assisting the person with MS perform daily activities or personal care took up the largest amount of their care giving time. Care givers also reported a range of home and community-based services that would make care giving easier or improve the care provided. However, informal care givers generally reported low satisfaction with health insurance coverage of these services, especially coverage by health maintenance organizations and other managed care plans. Lack of health insurance coverage of needed home and community-based services can reduce the quality of informal care provided, as well as increase the burden of informal care giving.

  6. Community- and family-level factors influence care-giver choice to screen blood lead levels of children in a mining community.

    Science.gov (United States)

    Moodie, S M; Tsui, E K; Silbergeld, E K

    2010-07-01

    Bunker Hill, in Kellogg, Idaho, formerly a lead mine (1884-1981) and smelter (1917-1981), is now a Superfund site listed on the Environmental Protection Agency's (EPA) National Priorities List. Lead contamination from the site is widespread due to past smelter discharges to land, water, and air, placing children at risk for both exposure to lead and resultant health effects of lead. Since 1983, the EPA has used child blood lead levels to inform the clean-up standards for the Bunker Hill Superfund site. This study was undertaken to examine factors that have contributed to the significant fall-off in the rates and numbers of children being screened for blood lead in Kellogg (number screened decreased from 195 to 8 from 2002 to 2007). The goal of this research project was to define community- and family-level factors which influence care-giver choice to screen blood lead levels of their children in this environment. This formative research study used mixed methods and was comprised of three research components: (1) preliminary interviews using community-based participatory research methods to define key research questions of relevance to community members, government and NGOs working in relation to the Bunker Hill clean-up; (2) a quantitative analysis of a cross-sectional household survey conducted with adult care-givers about child blood lead screening in Kellogg; and (3) ethnographic community rapid assessment methods formed the in-depth interview process and qualitative analysis. The survey showed the likelihood of blood lead screening that for children under the age of 18 years increases 34% with each one-year increase in current age of the child (95% CI, 1.08-1.67, p-value=0.009), and decreases 45% with annual household income greater than $10,000 (95% CI, 0.35-0.88, p-value=0.013). Sibling birth order increased the likelihood of blood lead screening by 61% (95% CI, 1.04-2.48, p-value=0.032) for each successive child. Female children were rated by their care-givers

  7. Care-givers' reflections on an ethics education immersive simulation care experience: A series of epiphanous events.

    Science.gov (United States)

    Gallagher, Ann; Peacock, Matthew; Zasada, Magdalena; Coucke, Trees; Cox, Anna; Janssens, Nele

    2017-07-01

    There has been little previous scholarship regarding the aims, options and impact of ethics education on residential care-givers. This manuscript details findings from a pragmatic cluster trial evaluating the impact of three different approaches to ethics education. The focus of the article is on one of the interventions, an immersive simulation experience. The simulation experience required residential care-givers to assume the profile of elderly care-recipients for a 24-hr period. The care-givers were student nurses. The project was reviewed favourably by a university ethics committee, and participants provided informed consent. Data from six postsimulation experience focus groups were analysed thematically and three themes were identified: the experience of vulnerability, dignity in care and the organisation of care. Findings suggest that the immersive simulation experience had a powerful immediate impact as participants described epiphanous insights relating to their care experiences. It is suggested that reflecting on and recording epiphanous events has the potential to sustain ethical care practices. Further research is required to evaluate the impact of different ethics education interventions in different cultural contexts. Exploration is also required regarding the meaning and significance of care epiphanies, those "most delicate and evanescent of moments," for the sustainability of ethical care. © 2016 John Wiley & Sons Ltd.

  8. Assessing care-givers' satisfaction with child immunisation services in Zambia: Evidence from a national survey.

    Science.gov (United States)

    Chama-Chiliba, Chitalu Miriam; Masiye, Felix; Mphuka, Chrispin

    2017-10-09

    The main aim of this study was to assess care-giver satisfaction with vaccination services in public health facilities in Zambia, and examine its determinants. This study used data from a recent population-based household survey, conducted from May to August 2015. Respondent satisfaction with vaccination services received during the last visit was measured on a five point Likert scale ranging from 1 to 5. We used an ordered logistic regression model to analyse the significance of perceived quality of vaccination services, immunisation delivery mode and a range of individual characteristics in predicting care-giver satisfaction. Findings show that one in five care givers were unsatisfied with the vaccination services that they had received, with rural populations showing a significantly higher level of satisfaction. Poor quality of care, defined by long waiting times, poor quality of communication between health staff and care givers, long distance to vaccination sites, mode of delivery, and personal characteristics were among major factors driving care-giver satisfaction ratings. We also find that receiving a vaccination at outreach mode of delivery was associated with higher odds of greater satisfaction compared to on-facility vaccination services. The odds of satisfaction were lower for respondents living further away from a health facility, which emphasizes the importance of access in seeking vaccination services. These findings suggest that major improvements in quality of vaccination and service organisation will be needed to increase client satisfaction and service utilisation. Copyright © 2017 Elsevier Ltd. All rights reserved.

  9. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers.

    Science.gov (United States)

    Philip, Rekha Rachel; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie

    2018-02-14

    The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged care-giver at home, 85% of these care-givers being female. The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a

  10. aggressive behaviour towards a care-giver: a case report of a ...

    African Journals Online (AJOL)

    FOBUR

    Results: Clinical features met the criteria for diagnosis of paranoid schizophrenia following a relapse due to ... Keywords: Aggressive behaviour, Care-Giver, Paranoid, Schizophrenia .... This act confirms earlier studies which considered.

  11. The knowledge and practices of primary care givers regarding home-based care of HIV/AIDS children in Blantyre (Malawi.

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    EW Zimba

    2001-09-01

    Full Text Available Knowledge is one of the major factors that promotes adherence to treatment regimens. With the current trends worldwide of home and community-based services for the management of HIV/AIDS patients, knowledge of care givers about the home care of these patients will determine the success of the programs. The purpose of this descriptive study was to explore the knowledge and practices of primary care givers of HIV/AIDS children in the provision of home care services. In this study an attempt was made to describe the factors which are associated with knowledge. Thirty-six primary care givers were randomly selected from three major home based care centres in Blantyre City, Malawi. A structured interview schedule was used to collect data. Data were analysed manually and by computer, using the Statistical Package for Social Science (SPSS. The findings revealed a gap in knowledge since in many instances taking a child to the hospital for the management of minor ailments was the action of choice, thus perpetuating the problem of overburdening hospital resources. Lack of prior preparation for home based care was found to be the major factor contributing to the lack of knowledge. Recommendations proposed include the need to put into place mechanisms that will ensure that all the primary care givers are adequately prepared in good time for home care service. Ensuring regular home visits was also thought to be helpful for efficient and effective supervision and reinforcement of information given to fill the gaps in knowledge wherever necessary.

  12. Knowledge and utilization of partograph among obstetric care givers in public health institutions of Addis Ababa, Ethiopia

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    Yisma Engida

    2013-01-01

    Full Text Available Abstract Background Globally, there was an estimated number of 287,000 maternal deaths in 2010. Eighty five percent (245,000 of these deaths occurred in Sub-Saharan Africa and Southern Asia. Among the causes of these deaths were obstructed and prolonged labour which could be prevented by cost effective and affordable health interventions like the use of the partograph. The Use of the partograph is a well-known best practice for quality monitoring of labour and subsequent prevention of obstructed and prolonged labour. However, a number of cases of obstructed labour do happen in health facilities due to poor quality of intrapartum care. Methods A cross-sectional quantitative study assessed knowledge and utilization of partograph among obstetric care givers in public health institutions of Addis Ababa, Ethiopia using a structured interviewer administered questionnaire. The collected data was analyzed using SPSS version 16.0. Logistic regression analysis was used to identify factors associated with knowledge and use of partograph among obstetric care givers. Results Knowledge about the partograph was fair: 189 (96.6% of all the respondents correctly mentioned at least one component of the partograph, 104 (53.3% correctly explained the function of alert line and 161 (82.6% correctly explained the function of action line. The study showed that 112 (57.3% of the obstetric care givers at public health institutions reportedly utilized partograph to monitor mothers in labour. The utilization of the partograph was significantly higher among obstetric care givers working in health centres (67.9% compared to those working in hospitals (34.4% [Adjusted OR = 3.63(95%CI: 1.81, 7.28]. Conclusions A significant percentage of obstetric care givers had fair knowledge of the partograph and why it is necessary to use it in the management of labour and over half of obstetric care givers reported use of the partograph to monitor mothers in labour. Pre-service and

  13. Care giver Satisfaction with Malaria Treatment of Under-fives at ...

    African Journals Online (AJOL)

    Conclusion: Care givers were generally satisfied with malaria case management of under-fives at PHC facilities in Jos North LGA. While such studies are fraught with methodological difficulties as well as issues of validity of measurement, patient satisfaction studies have the potential for stimulating improvements in quality ...

  14. Coping with Mental Illness in the Family.

    Science.gov (United States)

    Hatfield, Agnes B.

    Utilizing the conceptual framework of coping theory, 30 family care-givers of mentally ill family members were interviewed to determine the relationship between coping effectiveness and such variables as patient characteristics, factors of the care-givers life situation, and the availability and adequacy of community supports. Care-givers were…

  15. Impacto psicosocial del síndrome demencial en cuidadores cruciales Psychosocial impact of demential syndrome in crucial care givers

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    Juan Carlos LLibre Guerra

    2008-03-01

    Full Text Available Las demencias, entidades de elevada frecuencia en el adulto mayor, constituyen un creciente problema de salud en países con una alta expectativa de vida como el nuestro, no solo por su magnitud, sino por su repercusión a nivel individual, familiar y social. Se presenta un estudio descriptivo de corte transversal, realizado en el período comprendido entre enero de 2003 y enero de 2005, en las áreas de salud del municipio Marianao, con el objetivo de determinar el impacto psicosocial del síndrome demencial en cuidadores cruciales. Se visitaron 110 cuidadores de pacientes con demencia y enfermedad de Alzheimer diagnosticados de acuerdo con los criterios del DSM-IV. Los cuidadores cruciales de los pacientes con demencia correspondieron en su mayoría a mujeres casadas, esposa o hijas del paciente, en la quinta década de la vida, amas de casa, y con un nivel medio de escolaridad. El cuidador dedica alrededor de 12 h diarias al cuidado del paciente, la mayor parte en la supervisión. Se evidenció afectación psicológica en el 89 % de los cuidadores. El nivel de sobrecarga o estrés en la muestra es significativamente elevado. Los cuidadores consideran como primera prioridad información acerca de la enfermedad y atención al paciente. Se recomienda realizar un plan de intervención educativa dirigido a los cuidadores, que permita reducir la sobrecarga física, psicológica y económica del cuidado y mejorar su calidad de vida.The dementias, entities of an elevated frequency in the older adult, are an increasing health problem in countries with a high life expectancy at birth as ours, not only because of their magnitude, but also because of their repercussion at the individual, familiar and social levels. A descriptive cross-sectional study was undertaken from January 2003 to January 2005 in the health areas of Marianao municipality with the objective of determining the psychosocial impact of the demential syndrome in crucial care givers. 110

  16. Si dios quiere: Hispanic families' experiences of caring for a seriously mentally ill family member.

    Science.gov (United States)

    Guarnaccia, P J; Parra, P; Deschamps, A; Milstein, G; Argiles, N

    1992-06-01

    Among Hispanics, the family is viewed as the primary care giver for seriously mentally ill family members. This paper reports on a study of minority families' conceptions of serious mental illness, of their interaction with mental health resources, and on the burdens experienced by families in caring for a seriously mentally ill family member. The focus of this paper is on Hispanic families in New Jersey, with some comparative data from other ethnic group families. Families' conceptions of serious mental illness are explored and analyzed to demonstrate the importance of concepts of nervios and fallo mental in shaping families' responses to their ill family member. Social support systems for families are also explored with particular attention to the role of religious institutions and religious healing as a major source of solace.

  17. Motile Sperm Output by Male Cheetahs (Acinonyx jubatus) Managed Ex Situ Is Influenced by Public Exposure and Number of Care-Givers

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    Koester, Diana C.; Freeman, Elizabeth W.; Brown, Janine L.; Wildt, David E.; Terrell, Kimberly A.; Franklin, Ashley D.; Crosier, Adrienne E.

    2015-01-01

    The collective cheetah (Acinonyx jubatus) population in zoological institutions has never been self-sustaining because of challenges in natural reproduction. A retrospective analysis of North American zoo-breeding records has revealed that >90% of litters produced since 2003 occurred in facilities ‘off-display’ from the public. We examined seminal, endocrine, and behavioral traits of 29 adult male cheetahs that were: 1) managed in public exhibit or off-display facilities; 2) maintained by different numbers of cheetah-specific care-givers; and 3) living adjacent to varying numbers of adult conspecifics. Cheetahs housed off-display produced more total motile sperm/ejaculate (P = 0.04) than on-exhibit males. This finding was mirrored in our laboratory’s historical records where two-fold more total motile sperm (P 3 care-givers. Exposure to high numbers of conspecifics within the same institution did not impact (P > 0.05) seminal traits, and presence of the public, care-giver number, or animals/facility had no influence (P > 0.05) on androgen or glucocorticoid excretion or other behavioral metrics. Findings indicate that male cheetahs are sensitive to general public exposure and too many care-givers, resulting in compromised motile sperm output/ejaculate with mechanism of action unrelated to altered androgen or glucocorticoid excretion. PMID:26332582

  18. Motile Sperm Output by Male Cheetahs (Acinonyx jubatus Managed Ex Situ Is Influenced by Public Exposure and Number of Care-Givers.

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    Diana C Koester

    Full Text Available The collective cheetah (Acinonyx jubatus population in zoological institutions has never been self-sustaining because of challenges in natural reproduction. A retrospective analysis of North American zoo-breeding records has revealed that >90% of litters produced since 2003 occurred in facilities 'off-display' from the public. We examined seminal, endocrine, and behavioral traits of 29 adult male cheetahs that were: 1 managed in public exhibit or off-display facilities; 2 maintained by different numbers of cheetah-specific care-givers; and 3 living adjacent to varying numbers of adult conspecifics. Cheetahs housed off-display produced more total motile sperm/ejaculate (P = 0.04 than on-exhibit males. This finding was mirrored in our laboratory's historical records where two-fold more total motile sperm (P 3 care-givers. Exposure to high numbers of conspecifics within the same institution did not impact (P > 0.05 seminal traits, and presence of the public, care-giver number, or animals/facility had no influence (P > 0.05 on androgen or glucocorticoid excretion or other behavioral metrics. Findings indicate that male cheetahs are sensitive to general public exposure and too many care-givers, resulting in compromised motile sperm output/ejaculate with mechanism of action unrelated to altered androgen or glucocorticoid excretion.

  19. Motile Sperm Output by Male Cheetahs (Acinonyx jubatus) Managed Ex Situ Is Influenced by Public Exposure and Number of Care-Givers.

    Science.gov (United States)

    Koester, Diana C; Freeman, Elizabeth W; Brown, Janine L; Wildt, David E; Terrell, Kimberly A; Franklin, Ashley D; Crosier, Adrienne E

    2015-01-01

    The collective cheetah (Acinonyx jubatus) population in zoological institutions has never been self-sustaining because of challenges in natural reproduction. A retrospective analysis of North American zoo-breeding records has revealed that >90% of litters produced since 2003 occurred in facilities 'off-display' from the public. We examined seminal, endocrine, and behavioral traits of 29 adult male cheetahs that were: 1) managed in public exhibit or off-display facilities; 2) maintained by different numbers of cheetah-specific care-givers; and 3) living adjacent to varying numbers of adult conspecifics. Cheetahs housed off-display produced more total motile sperm/ejaculate (P = 0.04) than on-exhibit males. This finding was mirrored in our laboratory's historical records where two-fold more total motile sperm (P 3 care-givers. Exposure to high numbers of conspecifics within the same institution did not impact (P > 0.05) seminal traits, and presence of the public, care-giver number, or animals/facility had no influence (P > 0.05) on androgen or glucocorticoid excretion or other behavioral metrics. Findings indicate that male cheetahs are sensitive to general public exposure and too many care-givers, resulting in compromised motile sperm output/ejaculate with mechanism of action unrelated to altered androgen or glucocorticoid excretion.

  20. the need for family meeting in the management of patients admitted ...

    African Journals Online (AJOL)

    2014-03-01

    Mar 1, 2014 ... communication with care givers as a primary concern alongside the skill and knowledge of the critical care ... about the situation and to obtain emotional support. (10). Despite these obvious advantages of .... Another barrier to effective family meeting in the. ICU is the presence of multiple care givers (2). The.

  1. Stress among care givers: The impact of nursing a relative with cancer

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    Priyadarshini Kulkarni

    2014-01-01

    Full Text Available Aims: The aim of the present study is to assess the level and areas of stress among care givers nursing their loved ones suffering from cancer. Setting and Design: An assessment of care givers′ stress providing care to cancer patients at Cipla Palliative Care Center was conducted. The study involves data collection using a questionnaire and subsequent analysis. Materials and Methods: A close-ended questionnaire that had seven sections on different aspects of caregivers′ stress was developed and administered to 137 participants and purpose of conducting the survey was explained to their understanding. Caregivers who were willing to participate were asked to read and/or explained the questions and requested to reply as per the scales given. Data was collected in the questionnaires and was quantitatively analyzed. Results: The study results showed that overall stress level among caregivers is 5.18 ± 0.26 (on a scale of 0-10; of the total, nearly 62% of caregivers were ready to ask for professional help from nurses, medical social workers and counselors to cope up with their stress. Conclusion: Stress among caregivers ultimately affects quality of care that is being provided to the patient. This is also because they are unprepared to provide care, have inadequate knowledge about care giving along with financial burden, physical and emotional stress. Thus interventions are needed to help caregivers to strengthen their confidence in giving care and come out with better quality of care.

  2. Child oral health concerns amongst parents and primary care givers in a Sure Start local programme.

    Science.gov (United States)

    Daly, B; Clarke, W; McEvoy, W; Periam, K; Zoitopoulos, L

    2010-09-01

    To conduct an oral health promotion needs assessment amongst parents and primary care givers of pre-school children in a South East London Sure Start Local Programme (SSLP). To explore the oral health concerns and oral health literacy with regard to children's oral health amongst parents and primary care givers in a South East London SSLP. A qualitative study using four in-depth focus groups with a purposive sample of 20 participants. Data were analysed using the framework method. The SSLP was identified as an important source of information, support and social interaction for participants. Participants rated the informal networks of the programme as equally authoritative as other formal sources of information. Oral health concerns included: introducing healthy eating, establishing tooth brushing, teething and access to dental care. While participants had adequate knowledge of how to prevent oral disease they cited many barriers to acting on their knowledge which included: parents' tiredness, lack of confidence in parenting skills, confusing information, widespread availability of sugary foods and drinks, and lack of local child friendly dentists. Parenting skills and the social support provided by the SSLP appeared to be integral to the introduction of positive oral health behaviours. SSLPs were seen as a trusted source of support and information for carers of pre-school children. Integration of oral health promotion into SSLPs has the potential to tap into early interventions which tackle the wider support needs of carers of pre-school children while also supporting the development of positive oral health behaviours.

  3. Estrategia educativa para cuidadoras de familiares con enfermedad terminal Educational strategy for female care givers who attend terminally ill relatives

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    Yamilé Benítez Lambert

    2011-10-01

    Full Text Available Se realizó una intervención educativa desde julio de 2008 hasta enero de 2010 en el Policlínico Docente "Ramón López Peña" de Santiago de Cuba para aplicar una estrategia capacitante sobre cuidados paliativos, dirigida a 24 mujeres encargadas de atender a igual número de familiares con enfermedad terminal. Antes de ser instruidas al efecto, la mayoría de las cuidadoras desconocían cómo controlar los síntomas en sus parientes y su propio estrés, carecían de preparación psicológica para enfrentar el duelo, no habían adquirido las habilidades comunicativas necesarias y muchas se mostraban insatisfechas con el apoyo profesional recibido, entre otros factores; sin embargo, los encuentros programados permitieron brindarles la orientación y el asesoramiento requeridos para asumir con seguridad y confianza el rol que debían desempeñar responsablemente en esa humana labor.An educational intervention was carried out from July, 2008 to January, 2010 at "Ramóm López Peña" Teaching Polyclinic in Santiago de Cuba in order to apply an effective strategy on hospice care so as to train 24 women in charge of attending the same number of terminally ill family members. Before the training, most of female care givers did not know how to control symptoms of their ill relatives, not even their own stress; they had no psychological training to face the challenge; they had not developed the necessary communicative skills; and most of them were not satisfied with the professional aid received; among other factors. However, the scheduled meetings allowed health workers to offer the required orientation and expert advice to these care givers so they could assume their roles with confidence and security taking into account they had to perform a human task with a lot of responsibility.

  4. The Effect of Barkley's family-oriented program on the burden of care on families of children with attention deficit-hyperactive disorder

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    Sharifeh Mousavi

    2017-01-01

    Full Text Available Background: Attention deficit-hyperactive disorder (ADHD is the most common behavioral disorders during childhood whose treatment is greatly dependent on families; therefore, families of such children should improve their relation with them so that they could enjoy their lives. Hence, this study was conducted to evaluate the effect of Barkley's family-oriented program on the burden of care on such families. Materials and Methods: This clinical trial was conducted among 64 family care givers for children with ADHD. By simple sampling, samples passing the inclusion criteria were selected and randomly allocated into two groups of control and intervention. The intervention group received Barkley's family education program through 9 sessions; the control group participated in 3 group sessions and expressed their problems and experiences. Data were collected and analyzed using the Zarit Burden Interview. Results: Burden of care was gradually reduced through the study in the intervention group, however, the mean score of burden of care did not have a significant reduction in the control group. Conclusions: Because Barkley's family-oriented program was able to reduce the burden of care in families of children with ADHD, it is recommended to develop similar programs and evaluate them through various studies.

  5. The Effect of Care Instruction to Family Caregivers of Children with Cerebral Palsy on Life Quality of Care Givers

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    Nikta Hatami-Zadeh

    2009-10-01

    Conclusion: Findings of this study showed that life quality of family caregivers promoted after instruction about how to do correct care on cerebral palsied children. therefore, the importance of family instruction can be concluded for better life of cerebral palsied child caregivers. It should be noted that the effectiveness of rehabilitation program for cerebral palsied children might have positive effects on life quality of their caregivers.

  6. Compliance of zinc supplementation by care givers of children suffering from diarrhea

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    Smita S Valekar

    2014-12-01

    Full Text Available Background: Over 2 million children die as a result of diarrhea and dehydration every year. A new ORS formula and introduction of Zinc supplementation offers much improved outcomes for the treatment of childhood diarrhea. Aims: To assess the compliance of Zinc supplementation by caregivers Objectives: 1. To assess the compliance of Zinc supplementation by caregivers, 2. To find out the reason for non-compliance 3. To study the association of socio-demographic variables and non-compliance of children suffering from diarrhea Materials & Method:  Study Design: Cross-sectional survey Study Period: from 1st Sept. 2014 to 31st Oct. 2014 Study Area: Pediatric Outpatient department of Tertiary Care Hospital Inclusion Criteria: Under five children suffering from diarrhea attending Pediatric OPD Study Tool: Questionnaire was administered to care givers and follow up was done on 3rd, 7th & 14th day of Zinc supplementation. Result: 84% of non-compliance was seen in this study. Conclusion: The compliance of Zinc supplementation is poor among caretakers of children suffering from diarrhea.

  7. Effects of Training on Knowledge, Attitude and Practices of Malaria Prevention and Control among Community Role Model Care Givers in South Western Nigeria.

    Science.gov (United States)

    Olalekan, Adebimpe W; Adebukola, Adebimpe M

    2015-10-01

    Malaria is endemic in Nigeria, with significant records of mortality and morbidity. Adequate community involvement is central to a successful implementation of malaria control programs. This study assessed the effects of a training programme on knowledge of malaria prevention and control among community role model care givers. A descriptive cross sectional study of a pre-and post-test design method was conducted among 400 eligible community members in Osun State. Training was given in the form of organized lectures, health education and practical demonstration sessions. Scores of pre-test and post-test conducted after four months interval were compared. Multistage sampling method was adopted in selecting study participants, while data was analyzed using the SPSS software version 17.0. Mean age was 43.8 (±1.4) years. Average knowledge score of cause, transmission, risk factors and consequences, awareness of common symptoms and preventive practices improved during post-training test when compared with pr-training test. The overall descriptive mean knowledge score in pre-test and post-test were 2.1 and 3.5 respectively out of an average maximum score of 5.0, giving an increment of 66.7%. Role model care givers with formal education were twice and three times more likely to know about disease 'transmission' (OR 1.9, 95%CI 0.11-0.19, p=0.002) and 'consequences' (OR 2.9, 95%CI 0.25-0.65, p=0.040) respectively compared to those without formal education. Training on malaria improved the knowledge of malaria prevention and control among role model community care givers towards a successful implementation of malaria control programmes.

  8. The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study

    Science.gov (United States)

    2011-01-01

    Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and

  9. The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study

    Directory of Open Access Journals (Sweden)

    van der Heide Agnes

    2011-03-01

    Full Text Available Abstract Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study, which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a focus groups with health care staff and bereaved informal care-givers; and b a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve

  10. Management of the oral manifestations of HIV/AIDS by traditional healers and care givers

    Directory of Open Access Journals (Sweden)

    M.J. Rudolph

    2007-09-01

    Full Text Available In many communities of South Africa, traditional healers are often the only means of health care delivery available. The level of knowledge and ability to recognize oral lesions of 32 traditional healers and 17 care-givers were assessed after a two-day workshop. The data collection instrument was a structured questionnaire, complimented by enlarged clinical photographs of the common oral manifestations of HIV/AIDS. Prior to the workshop, 46 (93.9% of the 49 respondents had never had any formal information on oral health and 43 (87.8% were unfamiliar with the symptoms of oral diseases. Thirty-five (71.4% recognized bleeding gums from A4-size photographs and 11 (22.4% recognized oral thrush. The recognition of other oral manifestations of HIV/AIDS were; oral hairy leukoplakia (41.0%, angular cheilitis (43.6%, herpes virus infection (56.4%, oral ulcerations (56.8%, and in children, parotid enlargement (27.3%, and moluscum contagiosum (56.8%. Traditional healers and caregivers constitute an untapped resource with enormous potential. A positive bridge should be built to link traditional healing with modem medicine in the struggle against HIV/AIDS.

  11. Interactional aspects of care during hospitalization: perspectives of family caregivers of psychiatrically ill in a tertiary care setting in India.

    Science.gov (United States)

    Dinakaran, P; Mehrotra, Seema; Bharath, Srikala

    2014-12-01

    There are very few studies on user-perspectives about mental health care services that explore perspectives of family caregivers in India. An exploratory study was undertaken to understand the perceived importance of various aspects of interactions with mental health service providers during hospitalization, from the perspectives of family caregivers. In addition, it also aimed at documenting their actual experience of interactional aspects of care during the hospitalization of their relatives. The study was conducted on fifty family caregivers of patients with varied psychiatric diagnoses hospitalized in a tertiary psychiatric care setting in South India. Measures of Interactional aspects of care were developed to assess perceived importance of six different interactional domains of care and the actual experience of care in these domains. Provision of informational inputs and addressing of concerns raised emerged as the domains of care given highest importance. The item pertaining to 'sharing with the caregiver about different alternatives for treatment' received negative ratings in terms of actual experience by maximum number of participants (18%). Significant differences on perceived importance of four domains of interactional aspects of care (dignity, confidentiality and fairness, addressing concerns raised, informational inputs and prompt attention and consistent care) emerged between caregiver subgroups based on educational level of the caregiver, socio-economic status, hospitalization history and broad diagnostic categories. In addition, the care givers of patients with psychoses assigned significantly more positive ratings on actual experience for all the domains of interactional aspects of care. The findings have implications for further research and practice. Copyright © 2014 Elsevier B.V. All rights reserved.

  12. Historiemisbrug - giver det mening?

    DEFF Research Database (Denmark)

    Peters, Rikke Louise Alberg; Brunbech, Peter Johan Yding

    2018-01-01

    Giver det mening at tale om ”historiemisbrug” i en undervisningssammenhæng, eller er misbrug en uklar moralsk motiveret dom, vi fælder over det, vi tager afstand fra? Denne artikel er en redigeret diskussion af dette spørgsmål mellem Rikke Alberg Peters og Peter Brunbech....

  13. Uncertainty in prostate cancer. Ethnic and family patterns.

    Science.gov (United States)

    Germino, B B; Mishel, M H; Belyea, M; Harris, L; Ware, A; Mohler, J

    1998-01-01

    Prostate cancer occurs 37% more often in African-American men than in white men. Patients and their family care providers (FCPs) may have different experiences of cancer and its treatment. This report addresses two questions: 1) What is the relationship of uncertainty to family coping, psychological adjustment to illness, and spiritual factors? and 2) Are these patterns of relationship similar for patients and their family care givers and for whites and African-Americans? A sample of white and African-American men and their family care givers (N = 403) was drawn from an ongoing study, testing the efficacy of an uncertainty management intervention with men with stage B prostate cancer. Data were collected at study entry, either 1 week after post-surgical catheter removal or at the beginning of primary radiation treatment. Measures of uncertainty, adult role behavior, problem solving, social support, importance of God in one's life, family coping, psychological adjustment to illness, and perceptions of health and illness met standard criteria for internal consistency. Analyses of baseline data using Pearson's product moment correlations were conducted to examine the relationships of person, disease, and contextual factors to uncertainty. For family coping, uncertainty was significantly and positively related to two domains in white family care providers only. In African-American and white family care providers, the more uncertainty experienced, the less positive they felt about treatment. Uncertainty for all care givers was related inversely to positive feelings about the patient recovering from the illness. For all patients and for white family members, uncertainty was related inversely to the quality of the domestic environment. For everyone, uncertainty was related inversely to psychological distress. Higher levels of uncertainty were related to a poorer social environment for African-American patients and for white family members. For white patients and their

  14. Informal care giving to more disabled people with multiple sclerosis.

    Science.gov (United States)

    Buchanan, Robert J; Radin, Dagmar; Chakravorty, Bonnie J; Tyry, Tuula

    2009-01-01

    About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance. The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS. Almost half of these care givers reported that they provided more than 20 h of care per week to the person with MS, with more than 9 in 10 shopping for groceries, doing indoor housework, preparing meals or providing transportation for the person with MS. More than 4 in 10 employed care givers reduced the amount of time worked in the previous 12 months because of their care giving responsibilities. Although more than half of the MS care givers in our study reported that care giving was demanding, time consuming or challenging, about 90% of these MS care givers were happy that they could help. About two in three of these MS care givers found that care giving was rewarding, with more than 8 in 10 proud of the care they provided. More than a quarter of the informal care givers to people with MS thought they would benefit from treatment or counselling provided by mental health professionals. Not only it is necessary to provide access to mental health services for people with MS, but it is also important to assure that their informal care givers also have access to appropriate mental health care, given the scope of their care giving responsibilities.

  15. Using Persuasion Models to Identify Givers.

    Science.gov (United States)

    Ferguson, Mary Ann; And Others

    1986-01-01

    Assesses the feasibility of and suggests using W. J. McGuire's information processing theory and cognitive response analysis theory in research studies to identify "givers"--those who are likely to contribute money and resources to charities or volunteer to aid philanthropic organizations. (SRT)

  16. Half a Gift Is Not Half-Hearted: A Giver-Receiver Asymmetry in the Thoughtfulness of Partial Gifts.

    Science.gov (United States)

    Kupor, Daniella; Flynn, Frank; Norton, Michael I

    2017-12-01

    Four studies document an asymmetry in givers' and receivers' evaluations of gifts: Givers underestimate the extent to which receivers perceive partial (but more desirable) gifts to be thoughtful, valuable, and worthy of appreciation. Study 1 documents this asymmetry and suggests that givers underestimate the extent to which partial gifts signal thoughtfulness to receivers. Study 2 replicates this asymmetry in the context of a real gift exchange among friends. Study 3 shows that this asymmetry arises because givers believe that purchasing partial gifts is a greater violation of gift-giving norms than do receivers, leading givers to expect that partial gifts will damage receivers' perceptions of a gift's value. Study 4 offers an intervention that induces givers to select the (partial) gifts that receivers prefer more than givers expect: framing a gift's separate components as complete units.

  17. Parents' perspectives of the transition to home when a child has complex technological health care needs.

    LENUS (Irish Health Repository)

    Brenner, Maria

    2015-09-01

    There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child\\'s primary care giver. The aim of this study was to explore parents\\' perspectives of the transition to home of a child with complex respiratory health care needs.

  18. HOME BASED CARE FOR PEOPLE LIVING WITH HIV/AIDS ...

    African Journals Online (AJOL)

    Results: 103 Family Care givers participated in this study; 73(71%) were female and 30(29%) were male. The mean age of participants was. 38 years. The study revealed that 17% believed that they were knowledgeable, 65(63%) had inadequate knowledge and 21( 20%) had no knowledge whatsoever of HBC for PLWHA.

  19. Family Care Map: Sustaining family-centered care in Polytrauma Rehabilitation Centers

    Science.gov (United States)

    Ford, James H.; Wise, Meg; Krahn, Dean; Oliver, Karen Anderson; Hall, Carmen; Sayer, Nina

    2015-01-01

    The study assessed sustainability of the Family Care Map, a family-centered approach to providing care for Veterans with polytrauma-related injuries, in four Department of Veterans Affairs Polytrauma Rehabilitation Centers. We applied a mixed-methods approach. Staff surveys used standardized measures of sustainability, commitment to change, information, and participation during implementation. Qualitative inquiry assessed Family Care Map implementation and facilitators and barriers to sustainability. Staff sustainability perceptions had a significant positive correlation with affective commitment to change, participation, and information received about the change process. Family Care Map integration into standard practices and use of its concepts with patients and families related to staff perceptions about sustainability. The degree of use and integration of the Family Care Map in traumatic brain injury/polytrauma care varied among the Polytrauma Rehabilitation Centers. Some successful sustainability strategies included integration into daily workflow and organizational culture. Examples of sustainability barriers included staff awareness and use and outdated information. Some practices, such as measuring and documenting the use of the Family Care Map in treatment plans, may not routinely occur. The focus on family-centered care will require further evaluation of organization-, staff-, and innovation-level attributes that influence sustainability of changes designed to improve family-centered care. PMID:25671632

  20. Three factors critical for end-of-life care.

    Science.gov (United States)

    Franey, S G

    1996-01-01

    Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients.

  1. Give me your self: Gifts are liked more when they match the giver's characteristics

    NARCIS (Netherlands)

    Paolacci, G.; Straeter, L.; Hooge, de I.E.

    2015-01-01

    Research on gift giving has devoted considerable attention to understanding whether and how givers succeed in choosing gifts that match recipients' tastes. On the contrary, this article focuses on how recipients' appreciation for a gift depends on the match between the gift and the giver. Four

  2. In the company of givers and takers.

    Science.gov (United States)

    Grant, Adam

    2013-04-01

    Employees make decisions every day about whether to contribute to others--and their willingness to help is crucial to group and organizational effectiveness. But in a competitive, often zero-sum, world of work, generosity can be a dangerous path. How can leaders foster it without cutting into productivity, undermining fairness, and allowing employees to become doormats? The key, explains Wharton's Adam Grant, is to help givers reach a more nuanced understanding of what generosity is and is not. They'll be better positioned for sustainable giving when they can distinguish generosity from three attributes that often travel with it: timidity, availability, and empathy. Givers can overcome timidity, Grant says, by learning to act as agents--using "relational accounts" to advocate for others while negotiating for themselves. They can set boundaries on when, how, and whom to help. And they can strive to be perspective takers, not just empathizers, gathering knowledge about others that can lead to more-productive allocations of time that will benefit the organization as a whole.

  3. The impact of multiple care giving roles on fatigue, stress, and work performance among hospital staff nurses.

    Science.gov (United States)

    Scott, Linda D; Hwang, Wei-Ting; Rogers, Ann E

    2006-02-01

    This study describes fatigue and stress among a random sample of full-time hospital staff nurses (n=393) who provide care for aging family members, compares the results to nurses with and without children younger than 18 years living at home, examines differences in sleep duration, and explores the effects on work performance by care giving status during a 4-week period. Little attention has been given to the effects of care giver well-being when individuals assume dual roles as family and professional care givers. Hospital staff nurses recorded daily information concerning their work hours, errors, sleep/wake patterns, perceptions of fatigue, alertness, and stress and periods of drowsiness and sleep episodes while on duty for 28 days. Fatigue and stress levels were significantly higher among nurses caring for both children and elders. However, nurses providing elder care at home were more fatigued, sleep-deprived, and likely to make errors at work. These findings underscore the importance of restorative sleep interventions and fatigue countermeasures for hospital staff nurses involved in dual care giving roles. Limiting overtime and applying circadian principles to hospital scheduling processes would ensure a more alert workforce, minimize health risks for nurses, and maximize the safety of those in their care.

  4. "No place like home": Gender, family, and the politics of home care in post-world war II Ontario.

    Science.gov (United States)

    Struthers, James

    2003-01-01

    Since the early 1990s home care increasingly has emerged as a favoured policy response to the growing costs which an aging population poses for our health care system. This paper explores the early history of home care for the elderly in Ontario during the first three decades after World War II. It demonstrates that policy debates over the merits of home versus institutional care for the elderly, and community-based over hospital-based approaches to home care are not recent phenomenon but have been on going since the 1940s within the public health and social services sector. The paper examines why home care failed for so long to develop beyond the margins of Ontario's highly institutionalized health care system. It also explores how earlier visions of community-based home care, designed to help the elderly age in place, increasingly were obscured by an exclusive preoccupation with home care's "cost effectiveness" as an alternative to hospital or residential care, a rationale which discounted home care's costs to unpaid and principally female care givers. The paper concludes that the Ontario health ministry's systematic devaluing of caregiving and home maker skills, the fear of undermining the family's willingness to provide care, as well as the failure to develop effective mechanisms for integrated regional health care planning, also impeded the progress of home care's development before the 1980s.

  5. Awareness of Breast Cancer among Female Care Givers in Tertiary Cancer Hospital, China

    Science.gov (United States)

    Dinegde, Negalign Getahun; Xuying, Li

    2017-01-01

    Objective: Breast cancer is a worldwide public health issue and most common cancer diagnosed among women including China, where advanced stages at diagnosis appears to be increasing and an ever-rising incidence twice as fast as global rates. The study was conducted to describe the awareness of breast cancer and associated factors among care giver women in tertiary Cancer Hospital, China. Methods: Institutional based cross-sectional study was conducted among 261 women selected by systematic random sampling. Information provided by the participants was converted into awareness scores for analysis using SPSS version 23. Awareness scores were dichotomized in to ‘good awareness and ‘poor awareness’ taking median score=11 as the cut-off point. Data analysis was performed using the binary logistic regression. A p-value of awareness. Breast lump was the most commonly known symptom of cancer by 61.7% of the respondents. Slightly more than half of the study participants acknowledged having a past history of breast cancer, drinking alcohol and having close relative with breast cancer as potential risk factors for breast cancer (63.6%, 58.6%, and 55.6% respectively). Nevertheless, a vast majority of the study participants were unable to appreciate modifiable risk factors of the disease. More than half of the participants had never/rarely checked their breasts and all of the participants wrongly answered breast cancer knowledge age related risk. Awareness level was significantly associated with entertainment preference (OR=3.57; 95%CI=1.71, 7.44) and residence setting areas (OR=2.4; 95%CI=1.04, 5.69). Conclusion: The study indicated suboptimal awareness while entertainment preference and residence setting were significantly associated with awareness level. Public awareness campaigns should be made by dissemination of information about breast cancer through health education and printed Medias with great emphases on women living in rural areas. PMID:28749635

  6. Use of insecticide-treated mosquito nets for children under five years in an urban area of Lagos State, Nigeria.

    Science.gov (United States)

    Okafor, I P; Odeyemi, K A

    2012-01-01

    Insecticide-treated nets (ITNs) have proven to be one of the most effective means of reducing malaria morbidity and mortality in children and pregnant women. This study is carried out to determine the practice and determinants of ITN use for children under five years among care givers in an urban area of Lagos State. A community-based, cross sectional study was carried out in Lagos State in April 2007 among three hundred and forty (340) care givers primarily responsible for child care at home. They were selected by a multi-stage sampling method using a pre-tested, interviewer-administered, structured questionnaire. ITN use rate for under-fives was high (61.8%) and this was significantly determined by care giver's marital status (P level of care giver and occupation of head of the household were not significant determinants. There is need for health campaigns on ITNs targeted at unmarried care givers of young children. In addition, we also recommend social marketing of modern family planning methods to reduce family size, thereby increasing chances of ITN use among children less than five years to reduce malaria burden.

  7. Family Care Responsibilities and Employment: Exploring the Impact of Type of Family Care on Work-Family and Family-Work Conflict

    Science.gov (United States)

    Stewart, Lisa M.

    2013-01-01

    This study compared work-family and family-work conflict for employed family caregivers with disability-related care responsibilities in contrast to employed family caregivers with typical care responsibilities. Using data from the 2002 National Study of the Changing Workforce, a population-based survey of the U.S. workforce, formal and informal…

  8. Disruption, control and coping: responses of and to the person with dementia in hospital.

    OpenAIRE

    Porock, Davina; Clissett, Philip; Harwood, Rowan H.; Gladman, John R.F.

    2015-01-01

    This qualitative study aimed to gain insight into the experience of hospitalisation from the perspectives of the older person with dementia, their family care-giver and other patients sharing the ward (co-patients). Non-participant observation of care on 11 acute hospital wards was supplemented by 39 semi-structured interviews with 35 family care-givers and four co-patients following discharge. Constant comparative analysis produced the core problem facing all those involved: disruption from ...

  9. Symbolic interactionism: a framework for the care of parents of preterm infants.

    Science.gov (United States)

    Edwards, L D; Saunders, R B

    1990-04-01

    Because of stressors surrounding preterm birth, parents can be expected to have difficulty in early interactions with their preterm infants. Care givers who work with preterm infants and their parents can positively affect the early parental experiences of these mothers and fathers. If care givers are consciously guided by a conceptual model, therapeutic care for distressed parents is more likely to be provided. A logical framework, such as symbolic interactionism, helps care givers to proceed systematically in assessing parental behaviors, in intervening appropriately, and in evaluating both the process and outcome of the care. Selected aspects of the symbolic interaction model are described in this article and applied to the care of parents of preterm infants.

  10. Investigation of parenting stress in primary care-givers with children undergoing autistic disorder%孤独症儿童主要照顾者亲职压力现状的调查分析

    Institute of Scientific and Technical Information of China (English)

    邵国琼; 田征文

    2016-01-01

    Objective To investigate the status of parenting stress in the primary care-givers of children diagnosed with autistic disorder and sum up the nursing strategies. Methods Seventy-eight primary care-givers of children diagnosed with autistic disorder were interviewed using the parenting stress index-short form (PSI-SF). Results The mean score of parenting stress was 104.08 ± 18.32, which was at a high level. The 3 subscales score from high to low:parenting anxiety(36.22 ± 8.46);disabled children (35.64 ± 6.41);parent-child interation disorder(32.01 ± 7.15). Conclusion Medical staff should pay more attertion to these care-givers in order to enhance their ability to cope with various problems in the parenting process and hence reduce the level of parenting pressure.%目的:了解孤独症儿童主要照顾者亲职压力现状,并提出相应的对策。方法采用亲职压力指标简表(parenting stress index-short form, PSI-SF)对78名孤独症儿童主要照顾者进行调查。结果孤独症儿童主要照顾者PSI-SF总分为(104.08±18.32)分,处于较高的水平,其3个子量表得分由高到低依次为亲职愁苦(36.22±8.46)分、困难儿童(35.64±6.41)分、亲子互动失调(32.01±7.15)分。结论医护工作者应加强对孤独症儿童主要照顾者亲职压力的评估,提供孤独症相关知识和情感支持和提高其创伤后成长水平,进而降低其亲职压力水平。

  11. Disruption, control and coping: responses of and to the person with dementia in hospital.

    Science.gov (United States)

    Porock, Davina; Clissett, Philip; Harwood, Rowan H; Gladman, John R F

    2015-01-01

    This qualitative study aimed to gain insight into the experience of hospitalisation from the perspectives of the older person with dementia, their family care-giver and other patients sharing the ward (co-patients). Non-participant observation of care on 11 acute hospital wards was supplemented by 39 semi-structured interviews with 35 family care-givers and four co-patients following discharge. Constant comparative analysis produced the core problem facing all those involved: disruption from normal routine meaning that the experience of hospitalisation was disrupted by the presence and behaviour of the person with dementia. Disruption adversely affected the person with dementia, triggering constructive, disengaged, distressed and neutral behaviours. Using Kitwood's model of person-centred care, these behaviours were interpreted as attempts by the person with dementia at gaining a sense of control over the unfamiliar environment and experience. Family care-givers' lives and experiences both inside and outside the hospital were disrupted by the hospitalisation. They too attempted to gain a sense of control over the experience and to give a sense of control to the patient, co-patients and staff. Co-patients experienced disruption from sharing space with the person with dementia and were left feeling vulnerable and sometimes afraid. They too attempted to gain a sense of control over their situation and give some control by helping the person with dementia, the family care-giver and the staff.

  12. Family-centred care delivery

    Science.gov (United States)

    Mayo-Bruinsma, Liesha; Hogg, William; Taljaard, Monica; Dahrouge, Simone

    2013-01-01

    Abstract Objective To determine whether models of primary care service delivery differ in their provision of family-centred care (FCC) and to identify practice characteristics associated with FCC. Design Cross-sectional study. Setting Primary care practices in Ontario (ie, 35 salaried community health centres, 35 fee-for-service practices, 32 capitation-based health service organizations, and 35 blended remuneration family health networks) that belong to 4 models of primary care service delivery. Participants A total of 137 practices, 363 providers, and 5144 patients. Main outcome measures Measures of FCC in patient and provider surveys were based on the Primary Care Assessment Tool. Statistical analyses were conducted using linear mixed regression models and generalized estimating equations. Results Patient-reported FCC scores were high and did not vary significantly by primary care model. Larger panel size in a practice was associated with lower odds of patients reporting FCC. Provider-reported FCC scores were significantly higher in community health centres than in family health networks (P = .035). A larger number of nurse practitioners and clinical services on-site were both associated with higher FCC scores, while scores decreased as the number of family physicians in a practice increased and if practices were more rural. Conclusion Based on provider and patient reports, primary care reform strategies that encourage larger practices and more patients per family physician might compromise the provision of FCC, while strategies that encourage multidisciplinary practices and a range of services might increase FCC. PMID:24235195

  13. A study of predictors of anxiety and depression among stroke patient-caregivers

    Directory of Open Access Journals (Sweden)

    Yatan Pal Singh Balhara

    2012-01-01

    Conclusions: Caring for the patients with stroke presents increased burden to the care givers which manifests as increased rate of anxiety and depression among them. It is important to assess the care givers along with the patients for emergence of these negative affective states. One needs to be extra cautious if the patient happens to be the primary earning member of the family.

  14. Taking Care of You: Self-Care for Family Caregivers

    Science.gov (United States)

    ... Taking Care of YOU: Self-Care for Family Caregivers Order this publication Printer-friendly version First, Care ... 25 26 27 28 29 30 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn ...

  15. Am I a Teacher? How Educare Givers in Taiwan Construct Their Professional Identity during Socialisation into Public Preschools

    Science.gov (United States)

    Kao, Yu-Shu; Chen, Ya-Ling

    2017-01-01

    A new job position, "educare giver," which was created after kindergartens and preschools in Taiwan were integrated in 2012, has caused several problems such as ambiguity in the role of childcare givers and inequity in the division of labour. Studies have provided a limited scope and have not examined the identities and struggles of…

  16. [Measuring nursing care times--methodologic and documentation problems].

    Science.gov (United States)

    Bartholomeyczik, S; Hunstein, D

    2001-08-01

    The time for needed nursing care is one important measurement as a basic for financing care. In Germany the Long Term Care Insurance (LTCI) reimburses nursing care depending on the time family care givers need to complete selected activities. The LTCI recommends certain time ranges for these activities, which are wholly compensatory, as a basic for assessment. The purpose is to enhance assessment justice and comparability. With the example of a German research project, which had to investigate the duration of these activities and the reasons for differences, questions are raised about some definition and interpretation problems. There are definition problems, since caring activities especially in private households are nearly never performed as clearly defined modules. Moreover, often different activities are performed simultaneously. However, the most important question is what exactly time numbers can say about the essentials of nursing care.

  17. Knowledge and Skills of Mothers/Care Givers of Children Under Five Years in Communities with Home Based Management of Malaria in Tamale, Northern Region, Ghana, 2013

    Directory of Open Access Journals (Sweden)

    Mukaila Z. Mumuni

    2016-11-01

    Full Text Available Background: Malaria is still one of the major public health problems. More than 400 million cases of malaria are reported each year worldwide, Sub-Saharan Africa is the most affected region where about 90% of all malaria deaths in the world occur especially in children under five years of age. Home based management of Malaria showed a tremendous effect on reducing mortalities among children in Ghana. Objectives: to determine the current level of knowledge and skills of mothers in Tamale Metropolitan Area in the northern region of Ghana in terms of disease identification, management and transmission of malaria. Methodology: A cross sectional study conducted in 2013 involved 400 families and mothers/care givers with children less than five years were selected randomly and represented urban, peri-urbanand rural settings. Results: More than 90% of respondents identified malaria by presence of fever while 57.5% used fever as a cardinal sign. 91% of participants sought early treatment in urban and peri-urban settings while 85% did so in rural sites. 55% of participants administered the correct doses daily but only 17% of them knew the side effects of Antimalarial medications used. Almost all participants were aware about transmission of malaria, when to repeat the drug dose and usage of paracetamol as a medicine to reduce body temperature. Conclusion: The overall knowledge and skills demonstrated are encouraging, there is no much difference between urban and rural settings. Community based initiatives should be strengthened and promoted to provide homemade solutions to saving lives and resources.

  18. Reminiscence groups for people with dementia and their family carers: pragmatic eight-centre randomised trial of joint reminiscence and maintenance versus usual treatment: a protocol

    Directory of Open Access Journals (Sweden)

    Orrell Martin

    2009-07-01

    Full Text Available Abstract Background The growing number of people with dementia, and the increasing cost of care, provides a major incentive to develop and test methods of supporting them in the community for longer. Most attention has been given to pharmacological interventions, but there is increasing recognition that psychosocial interventions may be equally effective, even preferable where medication has negative side-effects. Reminiscence groups, run by professionals and volunteers, which use photographs, recordings and other objects to trigger personal memories are probably the most popular therapeutic approach to working with people with dementia, but there is little evidence for their effectiveness and cost-effectiveness. The recent inclusion of family carers in groups with people with dementia, notably in our own pilot studies, has generated informal evidence that this joint approach improves relationships between people with dementia and their carers, and benefits both. Design and methods This multi-centre, pragmatic randomised controlled trial (RCT to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family care-givers has two parallel arms – an intervention group and a control group who receive care as usual. The intervention consists of joint reminiscence groups held weekly for twelve consecutive weeks, followed by monthly maintenance sessions for a further seven months. The primary outcome measures are the quality of life of people with dementia, as assessed by QoL-AD, and their care-givers' mental health as assessed by the GHQ-28. Secondary outcomes include: the autobiographical memories of people with dementia; the quality of the relationship between them and their care-givers; and the levels of depression and anxiety felt by them and their care-giver. Using a 5% significance level, comparison of 200 pairs attending joint reminiscence groups with 200 pairs receiving usual treatment

  19. Gender inequalities in care-giving in Canada.

    Science.gov (United States)

    Dowler, J M; Jordan-Simpson, D A; Adams, O

    1992-01-01

    In Canada today, as in the past, men and women devote different amounts of time and effort to providing health care to their family and in the broader community. This paper examines "the social distinction between masculinity and femininity" in care-giving. Issues of gender inequality in care-giving have the potential to affect the formal health care system as the burden of caring will increase over the next few decades with the aging of society. This increase in need for care is occurring at a time when primary care providers--women--have additional demand on their time. Canadian society has been facing a series of social, demographic and economic shifts such as a higher divorce rate, two-income families, women's increasing professional commitments and first pregnancies at later ages, these factors may not affect women's willingness to care for others. However women may need support to provide the care. Assuming present trends, increasing need for families to care for elderly relatives may be inevitable. Perhaps society will recognize this need and provide support to those providing informal care. This could take the form of allowing individuals more time to provide care through child care leave, leave to care for parents and job-sharing. Support to those providing informal care might also be facilitated through community support services such as respite care, household maintenance, psychological support to care-givers, support groups, informal networks within a community and consideration of unconventional support methods.

  20. Family-nurse co-construction of meaning: a central phenomenon of family caring.

    Science.gov (United States)

    Meiers, Sonja J; Tomlinson, Patricia S

    2003-06-01

    The purpose of the study was to understand and interpret caring in the family health experience by exploring the interactional phenomenon of family-nurse co-construction of meaning in the paediatric intensive care unit (PICU). A hermeneutic phenomenological method within a framework of existentialism and symbolic interactionism was used in the investigation. The convenience sample for this study was four family-nurse dyads, that is four families of critically ill children (all with positive outcomes) and the four nurses assigned to their care who were participating in a larger study. Data were derived from semi-structured interviews regarding significant interactions throughout the child's illness and subsequent significant interactions of families with other nurses and nurses with other families. Trustworthiness of the study was addressed through the criteria of credibility, dependability, transferability and confirmability. Co-construction of meaning in the family health experience was found to have two dimensions: interdependent and independent. Both families and nurses described being like family as an essential component of the interdependent experience. Independent dimensions for families were journeying through troubled waters of learning the meaning of the illness event and sensing family comfort through the nurse's care. Independent dimensions described by nurses were journeying through troubled waters of learning to care for families and living with another's fear. The family-nurse interaction, the relational connection and the evolution of meanings that families and nurses construct, was affirmed as the major vehicle in the co-construction experience. Family caring is influenced by the existential meaning constructing, process-oriented, interactional nature of the family health experience. Caring in the family health experience is enhanced through actions the nurse performs on behalf of, and with, the family while understanding the family's unique

  1. Aspects of family-managed care at home

    DEFF Research Database (Denmark)

    Grönvall, Erik

    More and more care, for example of older adults, is performed at home. Municipality home-care workers and novel technologies support this translocation of care. At home, an important care provider is also the immediate family. A recent trend is to formalize this volunteer-, and family-based care...... caring for another family member, such as an older parent. Hence it is both in the society and the individual’s interests that future supportive care technologies consider already at design time how to support care while not impede the everyday lives and possibilities for the caring family....

  2. The family experience of care in chronic situation

    Directory of Open Access Journals (Sweden)

    Roseney Bellato

    2016-06-01

    Full Text Available An essay that aims to reflect on the family experience of care in chronic situation, increasing the understanding of the family as the primary caregiver. It is based on comprehensive approach in studies conducted in three matrix searches from family care experiences. We have taken three axes to organize our reflections: a conformation of family care in chronic situation, highlighting the multiple costs incurred to the family, which can exhaust the potential of care and establish or increase its vulnerability if it is not backed by networks support and sustenance; b family rearrangements for the care, giving visibility to care cores in which many loved family members share the care, dynamic, plural and changeable way; c self care modeling family care, pointing to the range of possibilities of the person taking care of diseased conditions supported by people close to them. We learn that the family takes care of itself in everyday life and in the illness experience, creating networks that can provide you support and sustenance. Thus, professionals in health practices should shape up in a longitudinal and very personal way, by reference to the family care, supporting him in what is his own.

  3. Impact of type 1 diabetes mellitus on the family is reduced with the medical home, care coordination, and family-centered care.

    Science.gov (United States)

    Katz, Michelle L; Laffel, Lori M; Perrin, James M; Kuhlthau, Karen

    2012-05-01

    To examine whether the medical home, care coordination, or family-centered care was associated with less impact of type 1 diabetes mellitus (T1D) on families' work, finances, time, and school attendance. With the 2005 to 2006 National Survey of Children with Special Health Care Needs, we compared impact in children with T1D (n = 583) with that in children with other special health care needs (n = 39 944) and children without special health care needs (n = 4945). We modeled the associations of the medical home, care coordination, and family-centered care with family impact in T1D. Seventy-five percent of families of children with T1D reported a major impact compared with 45% of families of children with special health care needs (P families of children without special health care needs (P families of children with T1D, 35% reported restricting work, 38% reported financial impact, 41% reported medical expenses >$1000/year, 24% reported spending ≥11 hours/week caring or coordination care, and 20% reported ≥11 school absences/year. The medical home, care coordination, and family-centered care were associated with less work and financial impact. In childhood T1D, most families experience major impact. Better systems of health care delivery may help families reduce some of this impact. Copyright © 2012 Mosby, Inc. All rights reserved.

  4. Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact.

    Science.gov (United States)

    Gooding, Judith S; Cooper, Liza G; Blaine, Arianna I; Franck, Linda S; Howse, Jennifer L; Berns, Scott D

    2011-02-01

    Family-centered care (FCC) has been increasingly emphasized as an important and necessary element of neonatal intensive care. FCC is conceptualized as a philosophy with a set of guiding principles, as well as a cohort of programs, services, and practices that many hospitals have embraced. Several factors drive the pressing need for family-centered care and support of families of infants in NICUs, including the increase in the number of infants in NICUs; growth in diversity of the population and their concurrent needs; identification of parental and familial stress and lack of parenting confidence; and gaps in support for families, as identified by parents and NICU staff. We explore the origins of and advances in FCC in the NICU and identify various delivery methods and aspects of FCC and family support in the NICU. We examine the research and available evidence supporting FCC in the NICU and offer recommendations for increased dissemination and for future study. Copyright © 2011 Elsevier Inc. All rights reserved.

  5. Acceptability and outcomes of the Percutaneous Endoscopic Gastrostomy (PEG tube placement- patients' and care givers' perspectives

    Directory of Open Access Journals (Sweden)

    Shah Hasnain A

    2006-11-01

    Full Text Available Abstract Background Percutaneous endoscopic gastrostomy tube has now become a preferred option for the long-term nutritional support device for patients with dysphagia. There is a considerable debate about the health issues related to the quality of life of these patients. Our aim of the study was to assess the outcome and perspectives of patients/care givers, about the acceptability of percutaneous endoscopic gastrostomy tube placement. Methods This descriptive analytic study conducted in patients, who have undergone percutaneous endoscopic gastrostomy tube placement during January 1998 till December 2004. Medical records of these patients were evaluated for their demographic characteristics, underlying diagnosis, indications and complications. Telephonic interviews were conducted till March 2005, on a pre-tested questionnaire to address psychological, social and physical performance status, of the health related quality of life issues. Results A total of 191 patients' medical records were reviewed, 120 (63% were males, and mean age was 63 years. Early complication was infection at PEG tube site in 6 (3% patients. In follow up over 365 ± 149 days, late complications (occurring 72 hours later were infection at PEG tube site in 29 (15 % patient and dislodgment/blockage of the tube in 26 (13.6%. Interviews were possible with 126 patients/caretakers. Karnofsky Performance Score of 0, 1, 2, 3 and 4 was found in 13(10%, 18(14%, 21(17%, 29(23% and 45(36% with p-value Conclusion PEG-tube placement was found to be relatively free from serious immediate and long- term complications. Majority of caregivers and patient felt that PEG-tube helped in feeding and prolonging the survival. Studies are needed to assess the real benefit in terms of actual nutritional gain and quality of life in such patients.

  6. Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses.

    Science.gov (United States)

    Ranse, Kristen; Bloomer, Melissa; Coombs, Maureen; Endacott, Ruth

    2016-11-01

    A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances. To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment. An online cross-sectional survey. During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data. From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (p<0.05) were identified between the variables gender, nursing experience and critical care experiences and some of the information items most and least frequently provided. The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time. Copyright © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  7. Iowa Family Day Care Handbook. Second Edition.

    Science.gov (United States)

    Pinsky, Dorothy; And Others

    The Iowa Family Day Care Handbook is designed as an aid for persons entering the business of providing home day care as well as for those persons already in the field. Topics include advantages and disadvantages of family day care for children, parents and providers; getting started in family day care; and a list and description of records that…

  8. Family-Centered Care in Neonatal Intensive Care Units: Combining Intensive Care and Family Support.

    Science.gov (United States)

    Araki, Shunsuke; Saito, Tomoko; Ichikawa, Saori; Saito, Kaori; Takada, Tsuzumi; Noguchi, Satoko; Yamada, Miki; Nakagawa, Fumi

    Advances in treatment in neonatal intensive care units (NICU) for preterm and sick newborns have improved the mortality rate of patients, but admission to the NICU may disrupt parent-infant interaction, with adverse consequences for infants and their families because of physical, psychological, and emotional separation. The concept of family centered care (FCC), in which family members are part of the care team and infants are close to the family, is important and has become popular in NICU. In 2013, we created a team called "Kodomo-Kazoku Mannaka" to promote FCC in Japan, and visited the NICU at Uppsala University Hospital in Sweden, which is internationally famous for FCC. Since this fruitful visit, we have been promoting FCC in Japan by exhibitions and presentations of the FCC ideas at academic conferences and using internet services. A questionnaire survey conducted in 2015 revealed that the importance and the benefits of FCC in NICU are recognized, although there are some barriers to FCC in each facility. It is hard to change facilities and social systems right away, but it is easier and more important to change people's minds. Our role is to spread the concept of FCC and to help each facility find its own way to adopt it. We will continue to make efforts encourage to promote FCC in Japan.

  9. Collective Care: Multiple Caregivers and Multiple Care Recipients in Mexican American Families.

    Science.gov (United States)

    Evans, Bronwynne C; Coon, David W; Belyea, Michael J; Ume, Ebere

    2017-07-01

    Specific stressors associated with caregiving in Mexican American (MA) families are not well documented, yet caregiving issues are paramount because informal care for parents is central to their culture. Although MA families who band together to provide care for one member are not unique, the literature does not describe the phenomenon of collective caregiving, which may be widespread but unrecognized. This article describes these understudied families who are poorly served by contemporary health systems because their characteristics are unknown. Descriptive, multisite, longitudinal mixed-methods study of MA caregiving families. We identified three types of collective caregivers: those providing care for multiple family members simultaneously, those providing care successively to several family members, and/or those needing care themselves during their caregiving of others. Collective caregiving of MA elders warrants further investigation. Exploration of collective caregiving may provide a foundation for tailored family interventions.

  10. In the spotlight: informal care in the Netherlands

    NARCIS (Netherlands)

    Debbie Oudijk; Alice de Boer; Isolde Woittiez; Joost Timmermans & Mirjam de Klerk

    2010-01-01

    Informal care is care that is provided by someone who is close to the care-receiver. It may include: • care given by members of the care-receiver's household, relatives, friends, acquaintances, colleagues or neighbours which stems from a relationship between the care-giver and care-receiver;

  11. Dementia Care: Intersecting Informal Family Care and Formal Care Systems

    Directory of Open Access Journals (Sweden)

    Prabhjot Singh

    2014-01-01

    Full Text Available Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

  12. Family Child Care Licensing Study, 1997.

    Science.gov (United States)

    Children's Foundation, Washington, DC.

    This report details the findings of an annual survey of state child care regulatory agencies. The survey gathered data on both small family child care homes and group or large family child care homes in each of the 50 states, the District of Columbia, Puerto Rico and the Virgin Islands. The report's introduction lists the survey categories and…

  13. Caring for families of the terminally ill in Malaysia from palliative care nurses' perspectives.

    Science.gov (United States)

    Namasivayam, Pathma; Lee, Susan; O'Connor, Margaret; Barnett, Tony

    2014-01-01

    To describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced. In palliative care settings, nurses and the terminally ill person's family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised. A qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced. Twenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009. The main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony. This study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families' needs and concerns. The study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care. © 2013 John Wiley & Sons Ltd.

  14. Families and health-care professionals' perspectives and expectations of family-centred care: hidden expectations and unclear roles.

    Science.gov (United States)

    Coyne, Imelda

    2015-10-01

    Family-centred care (FCC) is viewed as a pivotal concept in the provision of high-quality nursing care for children and their families, yet implementation continues to be problematic worldwide. This research investigated how FCC was enacted from families and nurses' perspectives. Descriptive qualitative approach using elements of analysis from grounded theory method. Data were collected though individual interviews with 18 children aged 7-16 years, their parents (n = 18) and 18 nurses from two children's hospital and one children's unit in a large general hospital in Ireland. Four key themes were identified: expectations; relying on parents' help; working out roles; and barriers to FCC. Nurses wholeheartedly endorsed FCC because of the benefits for families and their reliance on parents' contribution to the workload. There was minimal evidence of collaboration or negotiation of roles which resulted in parents feeling stressed or abandoned. Nurses cited busy workload, under-staffing and inappropriate documentation as key factors which resulted in over-reliance on parents and hindered their efforts to negotiate and work alongside parents. Families are willing to help in their child's care but they require clear guidance, information and support from nurses. Hidden expectations and unclear roles are stressful for families. Nurses need skills training, adequate resources and managerial support to meet families' needs appropriately, to establish true collaboration and to deliver optimal family-centred care. © 2013 John Wiley & Sons Ltd.

  15. Informal care givers’ experiences with support in primary palliative care when a case manager is involved: a descriptive study in the Netherlands.

    NARCIS (Netherlands)

    Plas, A.G.M. van der; Francke, A.L.; Deliens, L.; Jansen, W.J.J.; Vissers, K.C.; Onwuteaka-Philipsen, B.D.

    2017-01-01

    Introduction: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal care givers. The case manager provides support in addition to the care provided by the home care nurse and

  16. Nurses' attitudes toward family importance in heart failure care.

    Science.gov (United States)

    Gusdal, Annelie K; Josefsson, Karin; Thors Adolfsson, Eva; Martin, Lene

    2017-03-01

    Support from the family positively affects self-management, patient outcomes and the incidence of hospitalizations among patients with heart failure. To involve family members in heart failure care is thus valuable for the patients. Registered nurses frequently meet family members of patients with heart failure and the quality of these encounters is likely to be influenced by the attitudes registered nurses hold toward families. To explore registered nurses' attitudes toward the importance of families' involvement in heart failure nursing care and to identify factors that predict the most supportive attitudes. Cross-sectional, multicentre web-survey study. A sample of 303 registered nurses from 47 hospitals and 30 primary health care centres completed the instrument Families' Importance in Nursing Care - Nurses' Attitudes. Overall, registered nurses were supportive of families' involvement. Nonetheless, attitudes toward inviting families to actively take part in heart failure nursing care and involve families in planning of care were less supportive. Factors predicting the most supportive attitudes were to work in a primary health care centre, a heart failure clinic, a workplace with a general approach toward families, to have a postgraduate specialization, education in cardiac and/or heart failure nursing care, and a competence to work with families. Experienced registered nurses in heart failure nursing care can be encouraged to mentor their younger and less experienced colleagues to strengthen their supportive attitudes toward families. Registered nurses who have designated consultation time with patients and families, as in a nurse-led heart failure clinic, may have the most favourable condition for implementing a more supportive approach to families.

  17. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

    Science.gov (United States)

    Jones, Barbara L; Contro, Nancy; Koch, Kendra D

    2014-02-01

    Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

  18. Teaching wound care to family medicine residents on a wound care service

    Directory of Open Access Journals (Sweden)

    Little SH

    2013-08-01

    Full Text Available Sahoko H Little,1,2 Sunil S Menawat,1,3 Michael Worzniak,1 Michael D Fetters2 1Oakwood Annapolis Family Medicine Residency, Wayne, Michigan, USA; 2University of Michigan, Department of Family Medicine, Ann Arbor, Michigan, USA; 3Ghent Family Medicine Residency, Eastern Virginia Medical School, Norfolk, Virginia, USA Abstract: Primary care physicians often care for patients with chronic wounds, and they can best serve patients if they have knowledge and proficient skills in chronic wound care, including sharp debridement. The Oakwood Annapolis Family Medicine Residency in Michigan, USA developed a Wound Care Service, incorporating wound care training during the surgical rotation. Effectiveness of the wound care training was evaluated through pre- and posttesting of residents, to assess changes in knowledge and comfort in treating chronic wounds. The results demonstrate significant improvement in residents’ knowledge and comfort in wound care. This innovation demonstrates the feasibility of educating residents in chronic wound care through hands-on experience. Keywords: wound care education, primary care, residency education, surgery rotation, curriculum development

  19. Caring for patients with brain tumor: The patient and care giver ...

    African Journals Online (AJOL)

    Background: Patients with brain tumors form a heterogeneous group in terms of clinical presentation and pathology. However, the impact of the disease on patients' families is often more homogenous and frequently quite profound. A considerable body of literature is available on the management of brain tumors and ...

  20. Care Coordination with Schools: The Role of Family-Centered Care for Children with Special Health Care Needs.

    Science.gov (United States)

    Barnard-Brak, Lucy; Stevens, Tara; Carpenter, Julianna

    2017-05-01

    Objectives Family-centered care has been associated with positive outcomes for children with special health care needs. The purpose of the current study was to examine the relationship of family-centered care as associated with care coordination with schools and school absences (e.g., missed days) as reported by parents of children with special health care needs. Methods The current study utilized data from the National Survey of Children with Special Health Care Needs 2009-201 (N = 40,242) to achieve this purpose. The National Survey of Children with Special Health Care Needs may be considered a nationally-representative and community-based sample of parent responses for children with special health care needs across the United States. Results Results from the current study indicate that family-centered care is associated with fewer absences and improved care coordination with schools when applicable. The variables of functional difficulties, poverty level, and the number of conditions were statistically controlled. Conclusions We suggest that the positive influence of family-centered care when practiced extends beyond the family and interacts with educational outcomes. We also suggest that the role of schools appears to be under-studied given the role that schools can play in family-centered care.

  1. Implementing Patient Family-Centered Care Grand Rounds Using Patient/Family Advisor Narratives

    Directory of Open Access Journals (Sweden)

    Maureen B Fagan DNP, MHA, FNP-BC

    2015-11-01

    Full Text Available With the emerging trend of patient family–centered care in health care, it is essential that physicians be exposed to patient and family perspectives of care during medical education and training. Grand Rounds provides an ideal format for physicians to learn about patient family–centered care. At Brigham and Women’s Hospital, we sought to bring the voice of the patient to Patient Family–Centered Grand Rounds in order to expose clinicians to rich narratives describing the medical care received by patients/families and to ultimately change physician practice to reflect patient family–centered principles. We conducted a clinician survey and found promising results indicating that patient/family narratives can be effective at educating physicians about patient family–centered care.

  2. Financial burden of medical care: a family perspective.

    Science.gov (United States)

    Cohen, Robin A; Kirzinger, Whitney K

    2014-01-01

    Data from the National Health Interview Survey, 2012. In 2012, more than one in four families experienced financial burdens of medical care. Families with incomes at or below 250% of the federal poverty level (FPL) were more likely to experience financial burdens of medical care than families with incomes above 250% of the FPL. Families with children aged 0-17 years were more likely than families without children to experience financial burdens of medical care. The presence of a family member who was uninsured increased the likelihood that a family would experience a financial burden of medical care. Recently published data from the National Health Interview Survey (NHIS) found that 1 in 5 persons was in a family having problems paying medical bills, and 1 in 10 persons was in a family with medical bills that they were unable to pay at all (1-3). NHIS defines "family" as an individual or a group of two or more related persons living together in the same housing unit. The family perspective is important to consider when examining financial risk because significant expenses for one family member may adversely affect the whole family. Health insurance coverage is one way for a family to mitigate financial risk associated with health care costs, although health insurance status may differ among family members. This report explores selected family demographic characteristics and their association with financial burdens of medical care (problems paying medical bills, paying medical bills over time, and having medical bills that cannot be paid) based on data from the 2012 NHIS. All material appearing in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated.

  3. [Geriatric rehabilitation care: Doing the right things right].

    Science.gov (United States)

    de Vos, A J B M; van Balen, R; Gobbens, R J J; Bakker, T J E M

    2018-02-01

    Geriatric rehabilitation concerns short-term integrated multidisciplinary care aimed at functional recovery and social participation for relatively frail elderly. Given the geriatric clients' complex care issues, nurses should possess sufficient and appropriate competencies in order to identify and assess the relevant symptoms and intervene effectively. Yet, nurses experience a certain apprehensiveness to perform their tasks and express difficulties in multidisciplinary communication and collaboration in a constructive manner. In addition to the client's and informal care giver's perception of their input in the geriatric rehabilitation process, this study provides an in-depth understanding of the way nurses perceive their role in geriatric rehabilitation. This descriptive study entails a quantitative and a qualitative component. The quantitative component concerns questionnaires for clients, informal care givers, nurses, and team leaders. The qualitative component aims to obtain in-depth information (i. e. opinions, meanings, and reflections) with regard to the decision making process and the performance of the rehabilitation care by means of open-ended questions (in the questionnaire) and semi-structured interviews. Clients and informal care givers rate specific themes in geriatric rehabilitation in a more negative light than nurses and team leaders do. These themes concern the provision of information in the hospital (prior to admission in the rehabilitation facility), involvement in the draw-up of the treatment plan and rehabilitation goals, geriatric rehabilitation as a 24/7 activity, and taking into account the client's other life events. The latter three findings in particular, are caused by nurses' apprehensiveness to perform their tasks adequately. Nurses working in geriatric rehabilitation, experience apprehensiveness to perform their tasks adequately. Uncertainty about the client's reaction or fear of damaging the relationship of trust, results

  4. Developing a Family-Centered Care Model for Critical Care After Pediatric Traumatic Brain Injury.

    Science.gov (United States)

    Moore, Megan; Robinson, Gabrielle; Mink, Richard; Hudson, Kimberly; Dotolo, Danae; Gooding, Tracy; Ramirez, Alma; Zatzick, Douglas; Giordano, Jessica; Crawley, Deborah; Vavilala, Monica S

    2015-10-01

    This study examined the family experience of critical care after pediatric traumatic brain injury in order to develop a model of specific factors associated with family-centered care. Qualitative methods with semi-structured interviews were used. Two level 1 trauma centers. Fifteen mothers of children who had an acute hospital stay after traumatic brain injury within the last 5 years were interviewed about their experience of critical care and discharge planning. Participants who were primarily English, Spanish, or Cantonese speaking were included. None. Content analysis was used to code the transcribed interviews and develop the family-centered care model. Three major themes emerged: 1) thorough, timely, compassionate communication, 2) capacity building for families, providers, and facilities, and 3) coordination of care transitions. Participants reported valuing detailed, frequent communication that set realistic expectations and prepared them for decision making and outcomes. Areas for capacity building included strategies to increase provider cultural humility, parent participation in care, and institutional flexibility. Coordinated care transitions, including continuity of information and maintenance of partnerships with families and care teams, were highlighted. Participants who were not primarily English speaking reported particular difficulty with communication, cultural understanding, and coordinated transitions. This study presents a family-centered traumatic brain injury care model based on family perspectives. In addition to communication and coordination strategies, the model offers methods to address cultural and structural barriers to meeting the needs of non-English-speaking families. Given the stress experienced by families of children with traumatic brain injury, careful consideration of the model themes identified here may assist in improving overall quality of care to families of hospitalized children with traumatic brain injury.

  5. Caring for Clients and Families With Anxiety

    Directory of Open Access Journals (Sweden)

    Noriko Yamamoto-Mitani

    2016-08-01

    Full Text Available This study elucidated Japanese home care nurses’ experiences of supporting clients and families with anxiety. We interviewed 10 registered nurses working in home care agencies and analyzed the data using grounded theory to derive categories pertaining to the nurses’ experiences of providing care. We conceptualized nurses’ approaches to caring for anxiety into three categories: First, they attempted to reach out for anxiety even when the client/family did not make it explicit; second, they tried to alter the outlook of the situation; and third, they created comfort in the lives of the client/family. The conceptualizations of nurses’ strategies to alleviate client/family anxiety may reflect Japanese/Eastern cultural characteristics in communication and their view of the person and social care system, but these conceptualizations may also inform the practice of Western nurses by increasing awareness of skills they may also have and use.

  6. Family-centered end-of-life care in the ICU.

    Science.gov (United States)

    Wiegand, Debra L; Grant, Marian S; Cheon, Jooyoung; Gergis, Mary A

    2013-08-01

    Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process. Copyright 2013, SLACK Incorporated.

  7. Hospital executive leadership: a critical component for improving care at the end of life.

    Science.gov (United States)

    Cooney, James P; Landers, Glenn M; Williams, Julianna M

    2002-01-01

    End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.

  8. Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses

    OpenAIRE

    Ranse, K; Bloomer, M; Coombs, M; Endacott, R

    2016-01-01

    publisher: Elsevier articletitle: Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses journaltitle: Australian Critical Care articlelink: http://dx.doi.org/10.1016/j.aucc.2016.08.006 content_type: article copyright: © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  9. Occupational Therapy experience in family care in a primary health care service

    Directory of Open Access Journals (Sweden)

    Gisele Baissi

    2013-08-01

    Full Text Available Occupational therapy is presented as the core knowledge involved in the remodeling and strengthening of Primary Health Care in the Brazilian Unified Health Care System (Sistema Único de Saúde – SUS. In this study, we aimed to describe the interventions in the process of occupational therapy in supervised family care in a primary health care service in the municipality of Várzea Paulista, São Paulo state. In this case study, the moments of care were described and analyzed in light of narratives on the supervised practice of occupational therapy with a family. The results showed forms of intervention that characterize the process of occupational therapy focused on family health needs in favor of creativity and the role for changes in health practices in everyday life. Through the accomplishment of occupational activities directed to self-care, Occupational Therapy can aid families to cope with daily life adversity.

  10. Patient and family involvement in contemporary health care.

    Science.gov (United States)

    Angood, Peter; Dingman, Jennifer; Foley, Mary E; Ford, Dan; Martins, Becky; O'Regan, Patti; Salamendra, Arlene; Sheridan, Sue; Denham, Charles R

    2010-03-01

    The objective of this article was to provide a guide to health care providers on patient and family involvement in health care. This article evaluated the latest published studies for patient and family involvement and reexamined the objectives, the requirements for achieving these objectives, and the evidence of how to involve patients and families. Critical components for patient safety include changing the organizational culture; including patients and families on teams; listening to patients and families; incorporating their input into leadership structures and systems; providing full detail about treatment, procedures, and medication adverse effects; involving them on patient safety and performance improvement committees; and disclosing medical errors. The conclusion of this article is that, for the future, patient and family involvement starts with educating patients and families and ends with listening to them and taking them seriously. If patient and family input is emphatically built into systems of performance improvement, and if patients and families are taken seriously and are respected for their valuable perspectives about how care can be improved, then organizations can improve at improving. Resources in health care are in short supply, yet the resources of patient and family help and time are almost limitless, are ready to be tapped, and can have a huge impact on improving the reliability and overall success for any health care organization.

  11. What influences success in family medicine maternity care education programs?

    Science.gov (United States)

    Biringer, Anne; Forte, Milena; Tobin, Anastasia; Shaw, Elizabeth; Tannenbaum, David

    2018-01-01

    Abstract Objective To ascertain how program leaders in family medicine characterize success in family medicine maternity care education and determine which factors influence the success of training programs. Design Qualitative research using semistructured telephone interviews. Setting Purposive sample of 6 family medicine programs from 5 Canadian provinces. Participants Eighteen departmental leaders and program directors. METHODS Semistructured telephone interviews were conducted with program leaders in family medicine maternity care. Departmental leaders identified maternity care programs deemed to be “successful.” Interviews were audiorecorded and transcribed verbatim. Team members conducted thematic analysis. Main findings Participants considered their education programs to be successful in family medicine maternity care if residents achieved competency in intrapartum care, if graduates planned to include intrapartum care in their practices, and if their education programs were able to recruit and retain family medicine maternity care faculty. Five key factors were deemed to be critical to a program’s success in family medicine maternity care: adequate clinical exposure, the presence of strong family medicine role models, a family medicine–friendly hospital environment, support for the education program from multiple sources, and a dedicated and supportive community of family medicine maternity care providers. Conclusion Training programs wishing to achieve greater success in family medicine maternity care education should employ a multifaceted strategy that considers all 5 of the interdependent factors uncovered in our research. By paying particular attention to the informal processes that connect these factors, program leaders can preserve the possibility that family medicine residents will graduate with the competence and confidence to practise full-scope maternity care. PMID:29760273

  12. Family-Centred Care in Paediatric and Neonatal Nursing- A Literature Review

    Directory of Open Access Journals (Sweden)

    L.K. Irlam

    2002-09-01

    Full Text Available A literature review of family-centred care in paediatric and neonatal nursing was undertaken as part of a research project. This research intended to ascertain the knowledge and attitudes of paediatric and neonatal qualified nurses and nurse educators towards family-centred care as it pertains to infants and children in hospitals in the Gauteng Province. A definition of family-centred care is difficult to formulate mainly due to the lack of consensus about its meaning. Additionally, the diverse societal contexts within which family-centred care is applied further complicate its definition. Internationally in developed countries, family-centred care is viewed as care, which is parent-led in consultation with the nurse practitioner. A family-centred care model for the South African context needs to be developed with the focus on parent participation, a precursor of family-centred care. This article traces the early developments in parental care for hospitalised children with specific reference to the USA, the UK and South Africa. Precursor concepts in family-centred care are described followed by a cursory overview of the reality of family-centred care, its cultural dimensions and matters of family strengths and choices in family-centred care.

  13. The mourning before: can anticipatory grief theory inform family care in adult intensive care?

    Science.gov (United States)

    Coombs, Maureen A

    2010-12-01

    Although anticipatory grief is a much-debated and critiqued bereavement concept, it does offer a way of understanding and exploring expected loss that may be helpful in certain situations. In end-of-life care in adult intensive care units, families often act as proxy decision makers for patients in the transition from curative treatment efforts to planned treatment withdrawal. Despite there being a developed evidence base to inform care of families at this time, few of the clinical studies that provided this evidence were underpinned by bereavement theory. Focusing on end-of-life intensive care practices, this paper integrates work on anticipatory grief and family interventions to present a family-centred framework of care. Through this it is argued that the complex needs of families must be more comprehensively understood by doctors and nurses and that interventions must be more systematically planned to improve quality end-of-life care for families in this setting.

  14. Bodies that work, discourses that care: powerful narratives of elder care on the move

    OpenAIRE

    Pelzelmayer, Katharina

    2017-01-01

    This thesis explores questions of work and power in 24-hour care in German-speaking Switzerland. 24-hour care refers to individual paid care of an elderly person at their private household. While on duty, care-givers live at the household in which they work. 24-hour care is therefore a form of live-in care. Employment or staffing agencies offer and organise 24-hour care arrangements in German-speaking Switzerland. These agencies market around-the-clock care services that promise a care-giver’...

  15. Family care work: a policy-relevant research agenda.

    Science.gov (United States)

    Moen, Phyllis; DePasquale, Nicole

    2017-03-01

    This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers' efforts at supporting family caregivers and improve caregivers' and care recipients' quality of life. These include: (1) moving beyond snapshots of individuals; (2) conducting comparative cross-cultural and crosscohort analyses; (3) documenting social heterogeneity, vulnerability and inequality; (4) capturing individuals' and families' adaptive strategies and cycles of control during the caregiving process; (5) investigating policy innovations and natural experiments; (6) assessing third parties as mediating institutions between regulatory environments and caregiving families; and (7) attending to the subjective meanings of care.

  16. Family-centred residential care : the new reality?

    NARCIS (Netherlands)

    Geurts, Esther M. W.; Boddy, Janet; Noom, Marc J.; Knorth, Erik J.

    This paper considers therapeutic approaches to residential care with specific attention to the question of family involvement. It builds on a body of literature indicating the potential of residential care as a positive intervention for young people, and examines the contention that even when family

  17. Environmental Design for Patient Families in Intensive Care Units

    Directory of Open Access Journals (Sweden)

    Mahbub Rashid

    2010-01-01

    Full Text Available The purpose of this paper is to define the role of environmental design in improving family integration with patient care in Intensive Care Units (ICUs. It argues that it is necessary to understand family needs, experience and behavioral responses in ICUs to develop effective models for family integration. With its two components—the “healing culture” promoting effective relationships between caregivers and care seekers, and the “environmental design” supporting the healing culture—a “healing environment of care” can be an effective family integration model. This paper presents evidence showing how environmental design may affect families in ICUs, and proposes design recommendations for creating a healing environment of care promoting family integration in ICUs.

  18. The family experience of care in chronic situation.

    Science.gov (United States)

    Bellato, Roseney; Araújo, Laura Filomena Santos de; Dolina, Janderléia Valéria; Musquim, Cleciene Dos Anjos; Corrêa, Geovana Hagata de Lima Souza Thaines

    2016-06-01

    An essay that aims to reflect on the family experience of care in chronic situation, increasing the understanding of the family as the primary caregiver. It is based on comprehensive approach in studies conducted in three matrix searches from family care experiences. We have taken three axes to organize our reflections: a) conformation of family care in chronic situation, highlighting the multiple costs incurred to the family, which can exhaust the potential of care and establish or increase its vulnerability if it is not backed by networks support and sustenance; b) family rearrangements for the care, giving visibility to care cores in which many loved family members share the care, dynamic, plural and changeable way; c) self care modeling family care, pointing to the range of possibilities of the person taking care of diseased conditions supported by people close to them. We learn that the family takes care of itself in everyday life and in the illness experience, creating networks that can provide you support and sustenance. Thus, professionals in health practices should shape up in a longitudinal and very personal way, by reference to the family care, supporting him in what is his own. Ensaio que tem por objetivo refletir sobre a experiência familiar de cuidado na situação crônica, ampliando a compreensão da família como cuidadora primária. Embasa-se em estudos de abordagem compreensiva realizados em três pesquisas matriciais que abordaram experiências familiares de cuidado. Tomamos três eixos para organizar nossas reflexões: a) conformação do cuidado familiar na situação crônica, destacando os múltiplos custos gerados à família, que podem exaurir seus potenciais de cuidado, instaurando ou ampliando sua vulnerabilidade se não for amparada por redes de apoio e sustentação; b) rearranjos familiares para o cuidado, dando visibilidade aos núcleos de cuidado compartilhados pelos diversos entes familiares, de modo dinâmico, plural e mut

  19. The Chinese family-centered care survey for adult intensive care unit: A psychometric study.

    Science.gov (United States)

    Wang, Wen-Ling; Feng, Jui-Ying; Wang, Chi-Jen; Chen, Jing-Huei

    2016-02-01

    This study aimed to develop a family-centered care survey for Chinese adult intensive care units and to establish the survey's psychometric properties. Family-centered care (FCC) is widely recognized as an ideal model of care. Few studies have explored FCC perceptions among family members of adult critical care patients in Asian countries, and no Chinese FCC measurement has been developed. An English version of the 3-factor family-centered care survey for adult intensive care units (FCCS-AICU) was translated into Chinese using a modified back translation procedure. Based on the literature review, two additional concepts, information and empowerment, were added to the Chinese FCCS-AICU. The psychometric properties of the Chinese FCCS-AICU were determined with 249 family members from a medical center in Taiwan and were tested for construct and convergent validity, and internal consistency. Both the monolingual and bilingual equivalence tests of the English and Chinese versions of the 3-factor FCCS-AICU were supported. Exploratory factor analysis supported the 5-factor structure of the Chinese FCCS-AICU with a total explained variance of 58.34%. The Chinese FCCS-AICU was correlated with the Chinese Critical Care Family Needs Inventory. Internal consistency, determined by Cronbach's α, for the overall scale was .94. The Chinese FCCS-AICU is a valid and reliable tool for measuring perceptions of FCC by family members of adult intensive care patients within Chinese-speaking communities. Copyright © 2015 Elsevier Inc. All rights reserved.

  20. Implementing Family Meetings Into a Respiratory Care Unit: A Care and Communication Quality Improvement Project.

    Science.gov (United States)

    Loeslie, Vicki; Abcejo, Ma Sunnimpha; Anderson, Claudia; Leibenguth, Emily; Mielke, Cathy; Rabatin, Jeffrey

    Substantial evidence in critical care literature identifies a lack of quality and quantity of communication between patients, families, and clinicians while in the intensive care unit. Barriers include time, multiple caregivers, communication skills, culture, language, stress, and optimal meeting space. For patients who are chronically critically ill, the need for a structured method of communication is paramount for discussion of goals of care. The objective of this quality improvement project was to identify barriers to communication, then develop, implement, and evaluate a process for semistructured family meetings in a 9-bed respiratory care unit. Using set dates and times, family meetings were offered to patients and families admitted to the respiratory care unit. Multiple avenues of communication were utilized to facilitate attendance. Utilizing evidence-based family meeting literature, a guide for family meetings was developed. Templates were developed for documentation of the family meeting in the electronic medical record. Multiple communication barriers were identified. Frequency of family meeting occurrence rose from 31% to 88%. Staff satisfaction with meeting frequency, meeting length, and discussion of congruent goals of care between patient/family and health care providers improved. Patient/family satisfaction with consistency of message between team members; understanding of medications, tests, and dismissal plan; and efficacy to address their concerns with the medical team improved. This quality improvement project was implemented to address the communication gap in the care of complex patients who require prolonged hospitalizations. By identifying this need, engaging stakeholders, and developing a family meeting plan to meet to address these needs, communication between all members of the patient's care team has improved.

  1. The experiences of family caregiving in a chronic care unit.

    Science.gov (United States)

    Cho, Myung Ok

    2005-12-01

    The main purpose of this critical ethnography was to examines the process and discourses through which family caregivers experience while caring for their sick family member in a hospital. This was achieved by conducting in-depth interviews with 12 family caregivers, and by observing their caring activities and daily lives in natural settings. The study field was a unit for neurologic patients. Data was analyzed using taxonomy, discourse analysis, and proxemics. All research work was iteratively processed from March 2003 to December 2004. Constant comparative analysis of the data yielded the process of becoming a successful family caregiver: encountering the differences and chaos as novice; constructing their world of skilled caregivers; and becoming a hospital family as experienced caregivers. During the process of becoming an experienced hospital family, the discourse of family centered idea guided their caring behaviors and daily lives. The paternalistic family caregivers struggled, cooperated, and harmonized with the patriarchal world of professional health care system. During this process of becoming hospital family, professional nurses must act as cultural brokers between the lay family caring system and the professional caring system.

  2. Evaluating family function in caring for a geriatric group: Family APGAR applied for older adults by home care nurses.

    Science.gov (United States)

    Wang, Mei-Wen; Huang, Yi-Yu

    2016-06-01

    Family function is an essential factor affecting older adults' health. However, there has been no appropriate method to assess the family function of most older adults with fragility or poor health status. The present study aimed to explore the differences and relevance of family function estimated by home care nurses and the older adults, and to determine if nurses could represent older adults to provide the estimation. Study participants were 50 older adults who were aged older 65 years and were taken care of at home by well-trained nurses. The present study used the Family APGAR as the questionnaire. We compared the results evaluated by the older adults and their home care nurses. The results included the level of dysfunction and the total scores of the questionnaire. The paired t-test and McNemar-Bowker test were used for the analysis. Family function could be leveled as "good," "moderate dysfunction" and "severe dysfunction" according to the scores. The family function levels estimated by nurses showed no significant differences to the patients' condition (P = 0.123 > 0.05). Comparing the total scores of the older adults with those of their own home care nurses, the results showed a moderate to nearly high correlation (R = 0.689/P older adults' family problems much earlier and to improve the their health status by enhancing family support. Geriatr Gerontol Int 2015; ●●: ●●-●●. © 2015 Japan Geriatrics Society.

  3. Meanings and expressions of care and caring for elders in urban Namibian families:

    Directory of Open Access Journals (Sweden)

    CJ Leuning

    2000-09-01

    Full Text Available Since Namibia’s Independence in 1990, the population of elders—persons 65 years old and older—in urban communities is growing steadily. As such, requests for home health care, health counselling, respite care and residential care for aging members of society are overwhelming nurses and the health care system. This study expands transcultural nursing knowledge by increasing understanding of generic (home-based patterns of elder care that are practised and lived by urban Namibian families. Guided by Madeleine Leininger’s theory of culture care diversity and universality and the ethnonursing research method, emic (insider meanings and expressions of care and caring for elders in selected urban households have been transposed into five substantive themes. The themes, which depict what caring for elders means to urban families, include: 1 nurturing the health of the family, 2 trusting in the benevolence of life as lived, 3 honouring one’s elders, 4 sustaining security and purpose for life amid uncertainty, and 5 living with rapidly changing cultural and social structures. These findings add a voice from the developing world to the evolving body of transcultural nursing knowledge. Synthesis of findings with professional care practices facilitates the creation of community-focussed models for provisioning culturally congruent nursing care to elders and their families in urban Namibia.

  4. The relationship between organizational culture and family satisfaction in critical care.

    Science.gov (United States)

    Dodek, Peter M; Wong, Hubert; Heyland, Daren K; Cook, Deborah J; Rocker, Graeme M; Kutsogiannis, Demetrios J; Dale, Craig; Fowler, Robert; Robinson, Sandra; Ayas, Najib T

    2012-05-01

    Family satisfaction with critical care is influenced by a variety of factors. We investigated the relationship between measures of organizational and safety culture, and family satisfaction in critical care. We further explored differences in this relationship depending on intensive care unit survival status and length of intensive care unit stay of the patient. Cross-sectional surveys. Twenty-three tertiary and community intensive care units within three provinces in Canada. One thousand two-hundred eighty-five respondents from 2374 intensive care unit clinical staff, and 880 respondents from 1381 family members of intensive care unit patients. None. Intensive care unit staff completed the Organization and Management of Intensive Care Units survey and the Hospital Survey on Patient Safety Culture. Family members completed the Family Satisfaction in the Intensive Care Unit 24, a validated survey of family satisfaction. A priori, we analyzed adjusted relationships between each domain score from the culture surveys and either satisfaction with care or satisfaction with decision-making for each of four subgroups of family members according to patient descriptors: intensive care unit survivors who had length of intensive care unit stay 14 days, and intensive care unit nonsurvivors who had length of stay relationships between most domains of organizational and safety culture, and satisfaction with care or decision-making for family members of intensive care unit nonsurvivors who spent at least 14 days in the intensive care unit. For the other three groups, there were only a few weak relationships between domains of organizational and safety culture and family satisfaction. Our findings suggest that the effect of organizational culture on care delivery is most easily detectable by family members of the most seriously ill patients who interact frequently with intensive care unit staff, who are intensive care unit nonsurvivors, and who spend a longer time in the intensive

  5. Health Care Autonomy in Children with Chronic Conditions: Implications for Self Care and Family Management

    Science.gov (United States)

    Beacham, Barbara L.; Deatrick, Janet A.

    2013-01-01

    Synopsis Health care autonomy typically occurs during late adolescence but health care providers and families often expect children with chronic health conditions to master self-care earlier. Few studies have examined the development of health care autonomy as it pertains to self-care and family management. This review will link the three concepts and discuss implications for families and health care providers. Case studies are provided as exemplars to highlight areas where intervention and research is needed. PMID:23659815

  6. [Family participation in premature care in neonatal ICU].

    Science.gov (United States)

    Gaíva, Maria Aparecida Munhoz; Scochi, Carmen Gracinda Silvan

    2005-01-01

    This study aimed at analyzing the family participation in the premature assistance in a university hospital neonatal ICU. Data were collected from the participant observation. Results showed that despite of the mother's presence in the daily life of their premature children placed in a hospital, family isn't inserted in the work process and mothers are the only ones who take part of the cares. This participation basically happens in the execution of maternity care, especially at the medium risk unity, the mother and premature family are less welcomed and there isn't any partnership between the care team and the family, there aren't team interventions in order to turn premature family in autonomous subject to promote health and life quality to baby's life.

  7. Moving family-centered care forward: Bereaved fathers’ perspectives

    Science.gov (United States)

    Davies, Betty; Baird, Jennifer; Gudmundsdottir, Maria

    2012-01-01

    This paper describes the key behaviors of “excellent” pediatric healthcare providers – a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers. PMID:24244105

  8. Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis.

    Science.gov (United States)

    Chiang, C-Y; Lu, C-Y; Lin, Y-H; Lin, H-Y; Sun, F-K

    2015-12-01

    What is known on the subject? Suicide is a global mental health issue. Taking care of suicidal individuals is a substantial challenge. Most studies emphasize the suicidal individual. Few studies have emphasized the family caregivers of suicidal individuals. No study has explored the relationship between family caregivers' caring stress with suicidal attitudes and suicide care ability. What this paper adds to existing knowledge? The main results indicated that the older family caregivers tended to have a more negative attitude towards suicidal individuals. Female family caregivers' stress was higher than that of male family caregivers. A mild level of caring stress would help family caregivers have a more positive attitude towards suicidal individuals. Furthermore, a positive attitude would help family caregivers improve their caring ability. What are the implications for practice? Mental health nurses could help family caregivers, especially female family caregivers, reduce their holistic caring burden by looking for support resources and enhancing their coping strategies. Mental health nurses could help family caregivers promote positive attitudes towards suicidal relatives by understanding suicidal individuals' suffering. Suicide is a global mental health issue. Family caregivers play a key role in preventing suicide attempts. The aim of this study was to examine the relationship among stress due to the family caregiver's role, suicidal attitude of the family caregiver and suicide care ability among family caregivers. Additionally, instruments of caring stress, attitudes towards suicidal relatives and caring abilities used in the study were tested to measure construct validity. A cross-sectional correlational study was conducted with 164 family caregivers of people who are suicidal. The following three questionnaires were used: the Caring Stress Scale, the Suicidal Attitudes Scale and the Suicidal Caring Ability Scale. Structural equation modelling was performed

  9. Understanding Family Caregiver Communication to Provide Family-Centered Cancer Care.

    Science.gov (United States)

    Wittenberg, Elaine; Buller, Haley; Ferrell, Betty; Koczywas, Marianna; Borneman, Tami

    2017-12-01

    To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. Case studies based on interviews with oncology family caregivers. Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. Families with special needs children: family health, functioning, and care burden.

    Science.gov (United States)

    Caicedo, Carmen

    2014-01-01

    There are 11.2 million children with special health care needs in the United States or one in five households caring for a special needs child. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. This study examined physical health (physical functioning), mental health (emotional, social, and cognitive functioning; communication; and worry), family functioning (daily activities, family relationships), and care burden (caregiver employment, caregiving time, travel time, health-related out-of-pocket expenditures) of parent caregivers for medically complex, medical technology-dependent children. Data were collected once a month for 5 months on 84 parents recruited in South Florida using the Pediatric Quality of Life Family Impact Module. Physically, parents were tired when they woke up: too tired to do the things they liked to do and with little energy for chores or social activities. Mentally, they were frustrated, anxious, and angry; felt helpless and hopeless; had cognitive problems remembering and focusing on tasks; were worried about the child's medications, treatments, side effects; and were anxious about child's future and effect of the child's condition on other family members. Socially, they felt isolated and that people did not understand their family situation; they found it hard to talk with others including physicians and nurses. Average weekly hours of direct care was 33.0 (SD = 30.4 hours); average monthly out-of-pocket expenditures was $348.78 (SD = $623.34). It is essential to assess parents' physical and mental health and functioning and to provide interventions to improve health and functioning for both the parents and the children for whom they are caring. © The Author(s) 2014.

  11. The Growth of a Family: A family-oriented approach to pregnancy care

    OpenAIRE

    Carroll, June C.; Biringer, Anne

    1991-01-01

    Caring for a family during pregnancy and birth is an ideal opportunity for family physicians to assess family functioning and help the family adjust to the birth of a new child. Stress and support systems can influence the course of pregnancy, including obstetric and perinatal outcomes. A family-centered approach can help patients during this critical stage of family development.

  12. Health care autonomy in children with chronic conditions: implications for self-care and family management.

    Science.gov (United States)

    Beacham, Barbara L; Deatrick, Janet A

    2013-06-01

    Health care autonomy typically occurs during late adolescence but health care providers and families often expect children with chronic health conditions to master self-care earlier. Few studies have examined the development of health care autonomy as it pertains to self-care and family management. This review links the 3 concepts and discusses the implications for families and health care providers. Case studies are provided as exemplars to highlight areas where intervention and research is needed. Copyright © 2013 Elsevier Inc. All rights reserved.

  13. [Moral case deliberation: time for ethical reflection in the daily practice of mental health care].

    Science.gov (United States)

    Vellinga, A; van Melle-Baaijens, E A H

    2016-01-01

    Nowadays, reflecting on ethics, which we choose to call moral case deliberation, is occurring more and more frequently in psychiatric institutions. We have personal experience of organising and supervising moral case deliberation in a large psychiatric institute and we can confirm the positive effects of moral case deliberation which have been reported in the literature. To describe a structured method for moral case deliberation which enables care-givers in health care and/or addiction care to reflect on moral dilemmas. We refer to the main findings in relevant literature and describe how we developed a structured method for implementing moral case deliberation. Our studies of the literature indicate that systematic reflection about ethical dilemmas can improve the quality of care and make care-givers more satisfied with their work. This is why we have developed our own method which is applicable particularly to psychiatric and/or addition care and which can be used systematically in discussions of moral dilemmas. Our method for discussing ethical issues works well in clinical practice, particularly when it is embedded in a multidisciplinary context. Of course, to ensure the continuity of the system, deliberation about moral and ethical issues needs to be financially safeguarded and embedded in the organisation. Discussion of moral issues improves the quality of care and increases care-givers' satisfaction with their work.

  14. Assessing burden in families of critical care patients.

    Science.gov (United States)

    Kentish-Barnes, Nancy; Lemiale, Virginie; Chaize, Marine; Pochard, Frédéric; Azoulay, Elie

    2009-10-01

    To provide critical care clinicians with information on validated instruments for assessing burden in families of critical care patients. PubMed (1979-2009). We included all quantitative studies that used a validated instrument to evaluate the prevalence of, and risk factors for, burden on families. We extracted the descriptions of the instruments used and the main results. Family burden after critical illness can be detected reliably and requires preventive strategies and specific treatments. Using simple face-to-face interviews, intensivists can learn to detect poor comprehension and its determinants. Instruments for detecting symptoms of anxiety, depression, or stress can be used reliably even by physicians with no psychiatric training. For some symptoms, the evaluation should take place at a distance from intensive care unit discharge or death. Experience with families of patients who died in the intensive care unit and data from the literature have prompted studies of bereaved family members and the development of interventions aimed at decreasing guilt and preventing complicated grief. We believe that burden on families should be assessed routinely. In clinical studies, using markers for burden measured by validated tools may provide further evidence that effective communication and efforts to detect and to prevent symptoms of stress, anxiety, or depression provide valuable benefits to families.

  15. Nurse-family interaction in Malaysian palliative care settings: a focused literature review.

    Science.gov (United States)

    Namasivayam, Pathma; O Connor, Margaret; Barnett, Tony; Lee, Susan; Peters, Louise

    2011-10-01

    Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.

  16. Family-centred care for hospitalised children aged 0-12 years.

    Science.gov (United States)

    Shields, Linda; Zhou, Huaqiong; Pratt, Jan; Taylor, Marjory; Hunter, Judith; Pascoe, Elaine

    2012-10-17

    This is an update of the Cochrane systematic review of family-centred care published in 2007 (Shields 2007). Family-centred care (FCC) is a widely used model in paediatrics, is thought to be the best way to provide care to children in hospital and is ubiquitous as a way of delivering care. When a child is admitted, the whole family is affected. In giving care, nurses, doctors and others must consider the impact of the child's admission on all family members. However, the effectiveness of family-centred care as a model of care has not been measured systematically. To assess the effects of family-centred models of care for hospitalised children aged from birth (unlike the previous version of the review, this update excludes premature neonates) to 12 years, when compared to standard models of care, on child, family and health service outcomes. In the original review, we searched up until 2004. For this update, we searched: the Cochrane Central Register of Controlled Trials (CENTRAL,The Cochrane Library, Issue 12 2011); MEDLINE (Ovid SP); EMBASE (Ovid SP); PsycINFO (Ovid SP); CINAHL (EBSCO Host); and Sociological Abstracts (CSA). We did not search three that were included in the original review: Social Work Abstracts, the Australian Medical Index and ERIC. We searched EMBASE in this update only and searched from 2004 onwards. There was no limitation by language. We performed literature searches in May and June 2009 and updated them again in December 2011. We searched for randomised controlled trials (RCTs) including cluster randomised trials in which family-centred care models are compared with standard models of care for hospitalised children (0 to 12 years, but excluding premature neonates). Studies had to meet criteria for family-centredness. In order to assess the degree of family-centredness, we used a modified rating scale based on a validated instrument, (same instrument used in the initial review), however, we decreased the family-centredness score for

  17. Family-centred care of children in hospital - a concept analysis

    DEFF Research Database (Denmark)

    Mikkelsen, Gitte; Frederiksen, Kirsten

    2011-01-01

    from 1951 to 2009 resulted in a sample of 25 research articles. Review methods.  A theoretical concept analysis influenced by Risjord's distinction between theoretical and colloquial analyses and based on the principles developed by Morse, Hupcey and Penrod was used to examine the structure...... of professionals and families, mostly represented by mothers. Few attempts have been made to operationalize the concept. Conclusion.  Family-centred care is a partially mature and highly abstract concept. Developing a theory of family-centred care could position the concept in a theoretical context and should also......mikkelsen g. & frederiksen k. (2011) Family-centred care of children in hospital - a concept analysis. Journal of Advanced Nursing67(5), 1152-1162. ABSTRACT: Aim.  This paper reports a concept analysis of family-centred nursing care of hospitalized children. Background.  Family-centred care...

  18. Family's difficulty scale in end-of-life home care: a new measure of the family's difficulties in caring for patients with cancer at the end of life at home from bereaved family's perspective.

    Science.gov (United States)

    Ishii, Yoko; Miyashita, Mitsunori; Sato, Kazuki; Ozawa, Taketoshi

    2012-02-01

    The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS). The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service. We obtained 306 responses (response rate, 81%). Factor analysis resulted in 29 items and 8 factors: Burden of Care, Concerns about Home Care Doctor, Balance of Work and Care, Patient's Pain and Condition, Concerns about Visiting Nurse, Concerns about Home Care Service, Relationship between Family Caregivers and their Families, and Funeral Preparations. The cumulative rate of contribution was 71.8%. Cronbach coefficient α for the FDS was 0.73-0.75; the intraclass correlation coefficient in the test-retest examination was 0.75-0.85. Evidence for construct validity was confirmed by convergent and divergent validity. Concurrent validity was confirmed by significant correlations between identified factors and concurrent measures. The validity and reliability of this new instrument were confirmed. This scale should help home care providers to assess and focus on family difficulties and provide individualized care for the family who cares for a patient with terminal cancer at home.

  19. Associations of family-centered care with health care outcomes for children with special health care needs.

    Science.gov (United States)

    Kuo, Dennis Z; Bird, T Mac; Tilford, J Mick

    2011-08-01

    The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005-2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.

  20. The role of the breast care nurse in patient and family care.

    Science.gov (United States)

    Luck, Lauretta; Chok, Harrison Ng; Scott, Nancy; Wilkes, Lesley

    2017-11-01

    To describe the role of the breast care nurse in caring for patients and families. The breast care nurse is an expert clinical nurse who plays a significant role in the care of women/men and their families with breast cancer. The role of these nurses has expanded since the 1990s in Australia. Descriptive study. An online survey was sent to breast care nurses using peak body databases (n = 100). The survey consisted of nineteen nurse roles and functions from a previous Delphi technique study. Nurses rated the importance and frequency of role elements using a five-point Likert scale and four open-ended questions relating to role. There were 89 respondents. Most of the sample were from remote (n = 37, 41%) and rural areas (n = 47, 52%). The majority of responses regarding importance and frequency of the BCN role had a mean score above 4, which corresponds to 'moderately important' and 'occasionally as needed'. There were significant differences between the level of importance and frequency on 10 items. Four role themes arose from the thematic analysis: Breast care nurses as patient advocates, patient educators, care coordinators and clinical experts. This study delineated the important nurses role in caring for patients and families during a critical time of their life. Further, it details the important nursing roles and functions undertaken by these nurses and compared this to the frequency with which these nurses perform these aspects of their role. This study further delineates the important role that the nurses play in caring for patients and families during a critical time of their life. It extends further the frequency and importance of the supportive care and the need to educate their nurses on their role in providing spiritual care and research. © 2016 John Wiley & Sons Ltd.

  1. Family-centred care delivery: comparing models of primary care service delivery in Ontario.

    Science.gov (United States)

    Mayo-Bruinsma, Liesha; Hogg, William; Taljaard, Monica; Dahrouge, Simone

    2013-11-01

    To determine whether models of primary care service delivery differ in their provision of family-centred care (FCC) and to identify practice characteristics associated with FCC. Cross-sectional study. Primary care practices in Ontario (ie, 35 salaried community health centres, 35 fee-for-service practices, 32 capitation-based health service organizations, and 35 blended remuneration family health networks) that belong to 4 models of primary care service delivery. A total of 137 practices, 363 providers, and 5144 patients. Measures of FCC in patient and provider surveys were based on the Primary Care Assessment Tool. Statistical analyses were conducted using linear mixed regression models and generalized estimating equations. Patient-reported FCC scores were high and did not vary significantly by primary care model. Larger panel size in a practice was associated with lower odds of patients reporting FCC. Provider-reported FCC scores were significantly higher in community health centres than in family health networks (P = .035). A larger number of nurse practitioners and clinical services on-site were both associated with higher FCC scores, while scores decreased as the number of family physicians in a practice increased and if practices were more rural. Based on provider and patient reports, primary care reform strategies that encourage larger practices and more patients per family physician might compromise the provision of FCC, while strategies that encourage multidisciplinary practices and a range of services might increase FCC.

  2. Adult care transitioning for adolescents with special health care needs: a pivotal role for family centered care.

    Science.gov (United States)

    Duke, Naomi N; Scal, Peter B

    2011-01-01

    To examine the relationship between having a usual source of care, family centered care, and transition counseling for adolescents with special health care needs. Data are from 18,198 parents/guardians, of youth aged 12-17 years, who participated in the 2005-2006 National Survey of Children With Special Health Care Needs. Linear and logistic regression models were used to define relationships between parent report of identification of a usual place and provider of medical care for their child and counseling on four transition issues: transfer to adult providers, review of future health needs, maintaining health insurance in adulthood, and youth taking responsibility for care. The direct mediating effect of family centered care was evaluated. Youth having a usual source of care (vs. not) were more likely to receive counseling on future health needs (47.4 vs. 33.6%, P needs (56.3 vs. 39.6%, P needs and 94.9% of the effect of a usual source of care on encouragement to take responsibility for care. Study findings support the development of health care delivery models focusing on family centered care to the same degree as other health care access issues.

  3. Diverse Family Structures and the Care of Older Persons.

    Science.gov (United States)

    Roberto, Karen A; Blieszner, Rosemary

    2015-09-01

    Demographic and social trends lead to a variety of micro-level and internal structural contexts that influence caregiving in families with older members. The results of macro-level changes have received little focused attention in the aging literature, where much of the caregiving research has addressed issues within the context of traditional family structure. Yet the conventional nuclear family model is increasingly uncommon as new, pluralistic models of family life are emerging in contemporary society. The majority of elder care is provided by relatives, albeit with varying patterns of involvement and responsibility across family structures. Both conventional and pluralistic families face challenges in meeting the care needs of their oldest members, leaving some older adults at risk of having unmet needs. Additional research on family risk and resilience related to the care of older relatives is warranted, particularly with respect to pluralistic models of family life.

  4. The family receiving home care: functional health pattern assessment.

    Science.gov (United States)

    Hooper, J I

    1996-01-01

    The winds of change in health care make assessment of the family more important than ever as a tool for health care providers seeking to assist the family move themselves toward high-level wellness. Limited medical care and imposed self-responsibility for health promotion and illness prevention, which are natural consequences of these changes, move the locus of control for health management back to the family. The family's teachings, modeling, and interactions are greater influences than ever on the health of the patient. Gordon's functional health patterns provide a holistic model for assessment of the family because assessment data are classified under 11 headings: health perception and health management, nutritional-metabolic, elimination, activity and exercise, sleep and rest, cognition and perception, self-perception and self-concept, roles and relationships, sexuality and reproduction, coping and stress tolerance, and values and beliefs. Questions posed under each of the health patterns can be varied to reflect the uniqueness of the individual family as well as to inquire about family strengths and weaknesses in all patterns. Data using this model provide a comprehensive base for including the family in designing a plan of care.

  5. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer.

    Science.gov (United States)

    Minaya, Patricia; Baumstarck, Karine; Berbis, Julie; Goncalves, Anthony; Barlesi, Fabrice; Michel, Gérard; Salas, Sébastien; Chinot, Olivier; Grob, Jean-Jacques; Seitz, Jean François; Bladou, Franck; Clement, Audrey; Mancini, Julien; Simeoni, Marie-Claude; Auquier, Pascal

    2012-04-01

    The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers. A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory. The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach's alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient's characteristics. Reproducibility and sensitivity to change were found satisfactory. The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients' QoL which are key-actors in the provision of health care. Copyright © 2011 Elsevier Ltd. All rights reserved.

  6. "Una vida que no es normal": el contexto de los cuidados familiares en la demencia "A life that is not normal": the context of family care in dementia

    Directory of Open Access Journals (Sweden)

    Carmen de la Cuesta-Benjumea

    2011-06-01

    Full Text Available El grupo mayoritario de los cuidadores lo conforman mujeres que viven en situación de vulnerabilidad y cuentan con poco apoyo formal. Mientras que la bibliografía destaca los estudios sobre la carga del cuidado y cómo aliviarla, hay pocas investigaciones que describan las circunstancias donde se desarrollan estos cuidados. El propósito de este estudio cualitativo es describir el contexto en el que se desenvuelven los cuidados de familiares con demencia avanzada. Para las cuidadoras, su vida no es normal. Llevar una vida restringida y sin vida propia son categorías que describen el contexto de la vida de las cuidadoras. A esta clase de vida, las cuidadoras se han acostumbrado. Las enfermeras pueden mejorar esta situación, pueden aconsejar a los cuidadores para que reserven parcelas de vida propia, son además una voz autorizada para sensibilizar y fomentar prácticas equitativas en el cuidado familiar.The largest group of caregivers are women who live in situation of vulnerability and have little formal support. While research literature emphasises the burden of care and the relief of that burden, there are few studies that describe the context where this care takes place. The purpose of this qualitative study is to describe the context of dementia family care giving. For participants their life is not normal. Having a restricted life and without a proper life are the categories that describe care givers context. To this kind of life they are accustomed.Nurses can improve this situation. They can advice caregivers to reserve parcels of their persona life. Nurses are also authorized voices to promote and sensitize equitable family care practices.

  7. Family members' lived experience in the intensive care unit: a phemenological study.

    LENUS (Irish Health Repository)

    McKiernan, Margaret

    2012-01-31

    AIM: To describe the lived experience of family members of patients in the intensive care unit. BACKGROUND: Admission of a critically ill relative to an intensive care unit causes anxiety and stress to family members. Nursing care is initially focused on maintaining the physiological stability of the patient and less on the needs and concerns of family members. Understanding how families make sense of this experience may help nurses focus on the delivery of family centred care. METHODOLOGY: A phenomenological method was used to describe the lived experiences of family members of patients in an intensive care unit. In-depth interviews were conducted with six family members and analysed using qualitative thematic analysis. RESULTS: Four main themes emerged from the data: the need to know, making sense of it all, being there with them and caring and support. Family members needed honest information about the patient\\'s progress and outcome to make the situation more bearable for them. Making sense of the situation was a continuous process which involved tracking and evaluating care given. Being with their relative sustained their family bond and was a way to demonstrate love and support. Caring reassurance provided by the nurses enabled a sense of security. Support was needed by family members to assist them in coping. CONCLUSION: The research provided an insight into how family members viewed the impact of the admission and how they subsequently found ways of dealing with the situation. RELEVANCE TO CLINICAL PRACTICE: Using a holistic approach to nursing assessment and care delivery in intensive care necessitates that nurses interact with and care for family members of patients. Development of a philosophy of family centred care is necessary, with formal assessment of families to take place soon after admission and an appropriate plan of care drawn up at this time.

  8. Environmental Design for Patient Families in Intensive Care Units

    OpenAIRE

    Mahbub Rashid

    2010-01-01

    The purpose of this paper is to define the role of environmental design in improving family integration with patient care in Intensive Care Units (ICUs). It argues that it is necessary to understand family needs, experience and behavioral responses in ICUs to develop effective models for family integration. With its two components—the “healing culture” promoting effective relationships between caregivers and care seekers, and the “environmental design” supporting the healing culture—a “healin...

  9. Insurance + Access ≠ Health Care: Typology of Barriers to Health Care Access for Low-Income Families

    Science.gov (United States)

    DeVoe, Jennifer E.; Baez, Alia; Angier, Heather; Krois, Lisa; Edlund, Christine; Carney, Patricia A.

    2007-01-01

    PURPOSE Public health insurance programs have expanded coverage for the poor, and family physicians provide essential services to these vulnerable populations. Despite these efforts, many Americans do not have access to basic medical care. This study was designed to identify barriers faced by low-income parents when accessing health care for their children and how insurance status affects their reporting of these barriers. METHODS A mixed methods analysis was undertaken using 722 responses to an open-ended question on a health care access survey instrument that asked low-income Oregon families, “Is there anything else you would like to tell us?” Themes were identified using immersion/crystallization techniques. Pertinent demographic attributes were used to conduct matrix coded queries. RESULTS Families reported 3 major barriers: lack of insurance coverage, poor access to services, and unaffordable costs. Disproportionate reporting of these themes was most notable based on insurance status. A higher percentage of uninsured parents (87%) reported experiencing difficulties obtaining insurance coverage compared with 40% of those with insurance. Few of the uninsured expressed concerns about access to services or health care costs (19%). Access concerns were the most common among publicly insured families, and costs were more often mentioned by families with private insurance. Families made a clear distinction between insurance and access, and having one or both elements did not assure care. Our analyses uncovered a 3-part typology of barriers to health care for low-income families. CONCLUSIONS Barriers to health care can be insurmountable for low-income families, even those with insurance coverage. Patients who do not seek care in a family medicine clinic are not necessarily getting their care elsewhere. PMID:18025488

  10. Family satisfaction with critical care: measurements and messages.

    Science.gov (United States)

    Rothen, Hans U; Stricker, Kay H; Heyland, Daren K

    2010-12-01

    Family satisfaction in the ICU reflects the extent to which perceived needs and expectations of family members of critically ill patients are met by healthcare professionals. Here, we present recently developed tools to assess family satisfaction, with a special focus on their psychometric properties. Assessing family satisfaction, however, is not of much use if it is not followed by interpretation of the results and, if needed, consecutive measures to improve care of the patients and their families, or improvement in communication and decision-making. Accordingly, this review will outline recent findings in this field. Finally, possible areas of future research are addressed. To assess family satisfaction in the ICU, several domains deserve attention. They include, among others, care of the patient, counseling and emotional support of family members, information and decision-making. Overall, communication between physicians or nurses and members of the family remains a key topic, and there are many opportunities to improve. They include not only communication style, timing and appropriate wording but also, for example, assessments to see if information was adequately received and also understood. Whether unfulfilled needs of individual members of the family or of the family as a social system result in negative long-term sequels remains an open question. Assessing and analyzing family satisfaction in the ICU ultimately will support healthcare professionals in their continuing effort to improve care of critically ill patients and their families.

  11. What influences success in family medicine maternity care education programs? Qualitative exploration.

    Science.gov (United States)

    Biringer, Anne; Forte, Milena; Tobin, Anastasia; Shaw, Elizabeth; Tannenbaum, David

    2018-05-01

    To ascertain how program leaders in family medicine characterize success in family medicine maternity care education and determine which factors influence the success of training programs. Qualitative research using semistructured telephone interviews. Purposive sample of 6 family medicine programs from 5 Canadian provinces. Eighteen departmental leaders and program directors. Semistructured telephone interviews were conducted with program leaders in family medicine maternity care. Departmental leaders identified maternity care programs deemed to be "successful." Interviews were audiorecorded and transcribed verbatim. Team members conducted thematic analysis. Participants considered their education programs to be successful in family medicine maternity care if residents achieved competency in intrapartum care, if graduates planned to include intrapartum care in their practices, and if their education programs were able to recruit and retain family medicine maternity care faculty. Five key factors were deemed to be critical to a program's success in family medicine maternity care: adequate clinical exposure, the presence of strong family medicine role models, a family medicine-friendly hospital environment, support for the education program from multiple sources, and a dedicated and supportive community of family medicine maternity care providers. Training programs wishing to achieve greater success in family medicine maternity care education should employ a multifaceted strategy that considers all 5 of the interdependent factors uncovered in our research. By paying particular attention to the informal processes that connect these factors, program leaders can preserve the possibility that family medicine residents will graduate with the competence and confidence to practise full-scope maternity care. Copyright© the College of Family Physicians of Canada.

  12. The conceptualization of family care during critical illness in ...

    African Journals Online (AJOL)

    J. de Beer

    the objective of this study was to explore the meaning of family care within a South African context. Methodology: This .... Additionally, the diverse societal contexts within which family care is ..... of palliative and end of life care in hospitals, hospices or homes (Abiven .... representations of community and their implications for.

  13. Family caring strategies in neutropenia.

    Science.gov (United States)

    Eggenberger, Sandra K; Krumwiede, Norma; Meiers, Sonja J; Bliesmer, Mary; Earle, Patricia

    2004-12-01

    Aggressive chemotherapy protocols result in neutropenia in approximately half of all patients receiving chemotherapy. Thus, neutropenia continues to be a significant and potentially life-threatening side effect of treatment, even with use of colony-stimulating factors. Families of patients with neutropenia often provide the primary healing environment because most chemotherapy protocols are managed on an outpatient basis. To learn about the family's experience of managing chemotherapy-induced neutropenia (CIN), a grounded-theory methodology was used to analyze data from seven families. The central theme revealed by these families was "turbulent waiting with intensified connections." This meant that when families had a sense of greater vulnerability in response to the waiting after diagnosis of CIN, they connected intensely with each other and healthcare providers. Families reported that connections with nurses became more significant when neutropenia interrupted chemotherapy. Families also developed family caring strategies to manage this period of waiting for the chemotherapy to resume. These strategies included family inquiry, family vigilance, and family balancing. Nurses need to be aware of approaches to support the family's ability to manage CIN. Interventions and approaches constructed from the perspective of a family-professional partnership will enhance the family cancer experience as well as ongoing family growth and function.

  14. Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems.

    Science.gov (United States)

    2014-05-01

    Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care. Copyright © 2014 by the American Academy of Pediatrics.

  15. Business Administration Scale for Family Child Care, BAS

    Science.gov (United States)

    Talan, Teri N.; Bloom, Paula Jorde

    2009-01-01

    The "BAS for Family Child Care" is the first valid and reliable tool for measuring and improving the overall quality of business and professional practices in family child care settings. It is applicable for multiple uses, including program self-improvement, technical assistance and monitoring, training, research and evaluation, and public…

  16. Experiences and perceived needs of children and teenagers with cancer and their families

    Directory of Open Access Journals (Sweden)

    Pilar González Carrión

    2005-06-01

    Full Text Available Purpose:- To know the experiencies and perceived needs of children and teenagers with cancer and their care givers regarding the received care and their oncological process. - To identify proposals for improving care.Methodology: A qualitative study based on individual semistructured interviews and focus interviews with children and teenagers diagnosed of cancer was designed. Results: Hospitalization, therapeutic and diagnose procedures, side effects and isolation when neutropenia, were identified as the main traumatic experiencies suffered by children and relatives. These issues were related to physic, psycologic, social and educational problems. Mothers showed sad and other depression feelings, although those feelings changed as the process of the illness evolved. Some improvement proposals were made by relatives, including the need of a better correlation between health resources and patient/relatives needs. The proffesional support and the care received were given great value.Conclusions: The illness was associated to physic, psycologic and social consequencies for both patients and relatives. Taking their opinion into account is very useful to improve the quality of the health servicies offered to children with cancer and their family.

  17. Caring: Implications for Child Care and for Family Policy

    Directory of Open Access Journals (Sweden)

    Roderic Beaujot

    2009-12-01

    Full Text Available Canadian families have changed, in part due to an economy that provides more work opportunities for women, and a cultural orientation that values equal opportunity and diversity in families. In spite of the change, both quantitative and qualitative evidence suggest a continued preference for mothers to spend considerable time with children, especially in the infant and toddler years. Thus, in an average couple, the presence of young children in the home brings wives to reduce their paid work and husbands to increase their paid work. Our reading of parental preferences suggests an interest in more services for young children in the form of early childhood education and child care, but also an interest in policies that would allow parents to spend more time with children through parental leaves, part-time work with good benefits, and subsidies that supplement market income. Many options available to two-parent families are often less feasible for lone parents, giving a higher priority to child care.

  18. [Contribution of psychoanalysis to geriatric care for institutionalized patients].

    Science.gov (United States)

    Charazac, Pierre-Marie

    2014-06-01

    The contribution of psychoanalysis to geriatric care in nursing home is discussed in three directions: its conception of care, specially on its negative sides; its implication in geriatric units, in their conception and in the analysis of their management of care; the holding of care-givers and nurses by making clear what we call transference and conter-transference and their reflection on their function.

  19. An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit.

    Science.gov (United States)

    Macdonald, Mary Ellen; Liben, Stephen; Carnevale, Franco A; Cohen, S Robin

    2012-09-01

    Although the modern pediatric intensive care unit (PICU) has followed general pediatrics and adopted the family-centered care model, little is known about how families prospectively experience PICU care. The authors' goal was to better understand the experiences of families whose child was hospitalized in a PICU. They conducted a 12-month prospective ethnographic study in a PICU in a tertiary care hospital in a large North American urban center. Data were obtained via participant-observation and formal and informal interviews with 18 families and staff key informants. Findings revealed a disconnect between the espoused model of family-centered care and quotidian professional practices. This divergence emerged in the authors' analysis as a heuristic that contrasts a professional "office" to a sick child's "bedroom." PICU practices and protocols transformed the child into a patient and parents into visitors; issues such as noise, visitation, turf, and privacy could favor staff comfort and convenience over that of the child and family. The authors' discussion highlights suggestions to overcome this divergence in order to truly make the PICU family centered.

  20. State-level income inequality and family burden of U.S. families raising children with special health care needs.

    Science.gov (United States)

    Parish, Susan L; Rose, Roderick A; Dababnah, Sarah; Yoo, Joan; Cassiman, Shawn A

    2012-02-01

    Growing evidence supports the hypothesis that income inequality within a nation influences health outcomes net of the effect of any given household's absolute income. We tested the hypothesis that state-level income inequality in the United States is associated with increased family burden for care and health-related expenditures for low-income families of children with special health care needs. We analyzed the 2005-06 wave of the National Survey of Children with Special Health Care Needs, a probability sample of approximately 750 children with special health care needs in each state and the District of Columbia in the US Our measure of state-level income inequality was the Gini coefficient. Dependent measures of family caregiving burden included whether the parent received help arranging or coordinating the child's care and whether the parent stopped working due to the child's health. Dependent measures of family financial burden included absolute burden (spending in past 12 months for child's health care needs) and relative burden (spending as a proportion of total family income). After controlling for a host of child, family, and state factors, including family income and measures of the severity of a child's impairments, state-level income inequality has a significant and independent association with family burden related to the health care of their children with special health care needs. Families of children with special health care needs living in states with greater levels of income inequality report higher rates of absolute and relative financial burden. Copyright © 2011 Elsevier Ltd. All rights reserved.

  1. Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA).

    Science.gov (United States)

    Leysen, Bert; Van den Eynden, Bart; Gielen, Birgit; Bastiaens, Hilde; Wens, Johan

    2015-09-28

    Starting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate. The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention. A quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs' patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care. Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys. Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws. To evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement

  2. Application of theory to family-centered care: a role for social workers.

    Science.gov (United States)

    Miller, Gary

    2012-01-01

    Family-centered care is an emerging trend in health care settings today. An explanation, principles, and a definition of family-centered care are offered and discussed. A theoretical framework, Balance Theory of Coordination, which can be utilized by social workers to develop and enhance family-centered care practices, is explained and discussed. Various family-centered care practices are examined within the context of Balance Theory of Coordination as examples.

  3. Evaluation Of The Overload Of Care In Families Of Psychiatric Patients In Psychosocial Care Center

    Directory of Open Access Journals (Sweden)

    Mayron Morais Almeida

    2017-07-01

    Full Text Available Introduction: The burden of care in family refers to the weight caused by the primary caregiver role to psychiatric patients and the difficulties encountered in performing this function in daily life. Objectives: Assessing the objective and subjective overload of family members who live with the reality of psychiatric disorder in a child day-care psychosocial care center. Methods: Cross-sectional study, descriptive-exploratory, of quantitative approach, with non-probabilistic samples of accidental type with 80 families of psychiatric patients held in a Psychosocial Care Center. For overload evaluation, the subscales "B" and "D" of the Family Overload Rating Scale (FBIS-BR were used. Results: The study was conducted with 80 families of psychiatric patients. The average age of female caregivers was 39,6 years old, and 40,7 years old for male caregivers, with female predominance (87,5% compared to men (12,5%, with low education for both genres. Family caregivers presented high objective burden due to excessive demand attention (p<0,001, heteroaggressiveness (p<0,001 and perplexing behavior of psychiatric patients regarding the supervision of problematic behaviors (p<0,001. The items on the impact on the family's daily routine have not helped to generate objective overload for the family members. On subjective overload, it was clear to observe familiar members with high degree of disturbance in all the dimensions assessed (p < 0,001. Conclusion: The high degree of care overload observed in family members indicates the need to develop contacts with the family of the psychiatric patient to answer questions, offer support and assistance to the family caregiver. Keywords: Caregivers. Patients. Mental Health Services.

  4. Family Stress in Pediatric Critical Care.

    Science.gov (United States)

    Hagstrom, Sandra

    This mixed methods study explored stress in families whose children were hospitalized in the pediatric intensive care unit (PICU) for more than one week. The study aim was to describe sources of stress for families whose children require extended hospitalization in the PICU. Data collection included semi-structured interviews and completion of the Family Inventory of Life Events and Family System Stressor Strength Inventory. Themes reported in this paper are separation, not knowing, and the child's illness and distress. Additional research is needed to validate these findings in families of other cultures and structures, and in other PICUs. Copyright © 2016 Elsevier Inc. All rights reserved.

  5. A theory of meaning of caregiving for parents of mentally ill children in Taiwan, a qualitative study.

    Science.gov (United States)

    Yen, Wen-Jiuan; Teng, Ching-Hwa; Huang, Xuan-Yi; Ma, Wei-Fen; Lee, Sheuan; Tseng, Hsiu-Chih

    2010-01-01

    The aim of this study is to generate a theory of meaning of care-giving for parents of mentally ill children in Taiwan. Studies indicate that the meaning of care-giving plays an important role in the psychological adjustment of care-givers to care-giving. With a positive meaning of care-giving, care-givers can accept their roles and adapt to them more readily. The research employs the qualitative method of grounded theory, the inquiry is based on symbolic interactionism. Twenty parental care-givers of children with schizophrenia were recruited at a private hospital in central Taiwan. Semi-structured interviews were conducted. A comparative method was used to analyse the text and field notes. Responsibility (zeren) emerges as the core category or concept. Responsibility expresses broadly the behavioural principles that are culturally prescribed and centred on familial ethics and values. Related concepts and principles that influence caregiver actions and affections include a return of karma, challenges from local gods and fate. By maintaining their culturally prescribed interpretations of care-giving, parents hope to give care indefinitely without complaints. The findings clearly suggest that the meaning of care-giving is determined through a process of internal debate that is shaped by culturally specific concepts. The paper attempts to explain some of these culturally specific determinants and explanations of care-giving behaviour. The theory contributes knowledge about the meaning of care-giving for parents of mentally ill children in Taiwan. It should be useful reference for mental health professionals, who provide counselling services to ethnically Taiwanese care-givers.

  6. Comparative analysis of salivary bacterial microbiome diversity in edentulous infants and their mothers or primary care givers using pyrosequencing.

    Directory of Open Access Journals (Sweden)

    Kimberly D Cephas

    Full Text Available Bacterial contribution to oral disease has been studied in young children, but there is a lack of data addressing the developmental perspective in edentulous infants. Our primary objectives were to use pyrosequencing to phylogenetically characterize the salivary bacterial microbiome of edentulous infants and to make comparisons against their mothers. Saliva samples were collected from 5 edentulous infants (mean age = 4.6±1.2 mo old and their mothers or primary care givers (mean age = 30.8±9.5 y old. Salivary DNA was extracted, used to generate DNA amplicons of the V4-V6 hypervariable region of the bacterial 16S rDNA gene, and subjected to 454-pyrosequencing. On average, over 80,000 sequences per sample were generated. High bacterial diversity was noted in the saliva of adults [1012 operational taxonomical units (OTU at 3% divergence] and infants (578 OTU at 3% divergence. Firmicutes, Proteobacteria, Actinobacteria, and Fusobacteria were predominant bacterial phyla present in all samples. A total of 397 bacterial genera were present in our dataset. Of the 28 genera different (P<0.05 between infants and adults, 27 had a greater prevalence in adults. The exception was Streptococcus, which was the predominant genera in infant saliva (62.2% in infants vs. 20.4% in adults; P<0.05. Veillonella, Neisseria, Rothia, Haemophilus, Gemella, Granulicatella, Leptotrichia, and Fusobacterium were also predominant genera in infant samples, while Haemophilus, Neisseria, Veillonella, Fusobacterium, Oribacterium, Rothia, Treponema, and Actinomyces were predominant in adults. Our data demonstrate that although the adult saliva bacterial microbiome had a greater OTU count than infants, a rich bacterial community exists in the infant oral cavity prior to tooth eruption. Streptococcus, Veillonella, and Neisseria are the predominant bacterial genera present in infants. Further research is required to characterize the development of oral microbiota early in life

  7. How sacrifice impacts the giver and the recipient: insights from approach-avoidance motivational theory.

    Science.gov (United States)

    Impett, Emily A; Gere, Judith; Kogan, Aleksandr; Gordon, Amie M; Keltner, Dacher

    2014-10-01

    This study investigated how sacrificing for approach versus avoidance goals shapes the giver's and the recipient's emotions and relationship quality. A sample of 80 dating couples participated in a three-part study in which they discussed sacrifice in the laboratory (Part 1), reported on their daily sacrifices for 14 days (Part 2), and completed a follow-up survey 3 months later (Part 3). When partners discussed a sacrifice they had made for approach goals, they experienced greater relationship quality, whereas when they discussed a sacrifice they had made for avoidance goals, they experienced poorer relationship quality. These effects were replicated with outside observer reports. On days when partners sacrificed for approach goals, both partners experienced increased relationship quality, but on days when people sacrificed for avoidance goals, the giver experienced decreased relationship quality. These effects were mediated by positive and negative emotions, respectively. Approach sacrifice goals predicted increases in relationship quality and avoidance sacrifice goals predicted decreases in relationship quality, as reported by both partners 3 months later. Sacrifice per se does not help or harm relationships, but the goals that people pursue when they give up their own interests can critically shape the quality of intimate bonds. © 2013 Wiley Periodicals, Inc.

  8. Patients' family satisfaction with needs met at the medical intensive care unit.

    Science.gov (United States)

    Khalaila, Rabia

    2013-05-01

    The current study investigated the perceived importance and the perceived met needs of family members in the medical intensive care unit and assessed family members' satisfaction with needs met. Studies conducted throughout the world over the past 30 years indicate that family needs are still neglected. Unmet needs of family members of patients in the intensive care unit lead to dissatisfaction with care. A cross-sectional study. A total of 70 family members of critically ill patients were included in this study conducted in a medical intensive care unit in Israel between October 2007-September 2008, using a structured interview. Three outcomes measured by the Family Satisfaction in the Intensive Care Unit Inventory were regressed separately for baseline variables and family needs met subscales as measured by the Critical Care Family Needs Inventory. Multivariate linear regression analysis was used to detect factors that could have predicted each outcome. The results showed differences between the perceived importance and the perceived met needs of family members. Satisfaction with care was positively related to meeting all needs domains except the information need. However, satisfaction with information and decision-making was related only to meeting information and emotional support needs. Continued unmet needs of family members of intensive care unit patients have a negative impact on family satisfaction. Only sweeping changes in clinical practice will succeed in meeting the unmet needs of patients' families. © 2012 Blackwell Publishing Ltd.

  9. Being the parent of a ventilator-assisted child: perceptions of the family-health care provider relationship when care is offered in the family home.

    Science.gov (United States)

    Lindahl, Berit; Lindblad, Britt-Marie

    2013-11-01

    The number of medically fragile children cared for at home is increasing; however, there are few studies about the professional support these families receive in their homes. The aim of the study was to understand the meanings that parents had about the support they received from health care professionals who offered care for their ventilator-assisted child in the family home. A phenomenological-hermeneutic method was used. Data included the narratives of five mother-father couples living in Sweden who were receiving professional support for their ventilator-assisted child. The findings indicate that receiving professional support meant being at risk of and/or exposed to the exercise of control over family privacy. The professional support system in the families' homes worked more by chance than by competent and sensible planning. In good cases, caring encounters were characterized by a mutual relationship where various occupational groups were embraced as a part of family life. The findings are discussed in light of compassionate care, exercise of power, and the importance of holistic educational programs.

  10. A possibility for strengthening family life and health: Family members' lived experience when a sick child receives home care in Sweden.

    Science.gov (United States)

    Castor, Charlotte; Landgren, Kajsa; Hansson, Helena; Kristensson Hallström, Inger

    2018-03-01

    Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes: "Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared. © 2017 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

  11. Difficult relationships--interactions between family members and staff in long-term care.

    Science.gov (United States)

    Norris, S

    2000-01-01

    Staff of long-term care facilities and family members have a common responsibility to ensure the best course of treatment and everyday care for residents who often cannot speak for themselves. Understanding the difference between instrumental and preservative care, and who the proper agent is to provide care in each category will not only improve staff/family interactions, but residential care in general. The Resident Enrichment and Activity Program improves the family/staff relationship obliquely by involving family in social activities; the Family Involvement in Care program, and the Patterns in Caregiving program directly target the relationship and involve the facility's administration to effect policy change.

  12. Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

    Science.gov (United States)

    Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

    2016-01-01

    The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

  13. Smart home care platforms: Where is the added value?

    OpenAIRE

    Vannieuwenborg, Frederic; Van Auwermeulen, Thomas; Van Ooteghem, Jan; Jacobs, An; Verbrugge, Sofie; Colle, Didier; Pickavet, Mario

    2014-01-01

    Due to changes in the demographic situation of most Western European countries, interest in ICT supported care services grows fast. eCare services that foster a better care information exchange, social involvement, lifestyle monitoring services, etc., offered via smart care platforms integrated in the homes of the elderly are believed to be cost-effective and could lead to an increased quality of life of both care receiver and (in)formal care giver. Currently adoption and integration of these...

  14. For the betterment of the family care for the aged with dementia.

    Science.gov (United States)

    Matsuda, N

    2001-06-01

    To investigate the feeling of burden and needs in care, a questionnaire was made which consists of "feeling of burden in care" (family Maslash Burnout Inventory for care or M.B.I. in short) and "family needs" (own making). It was mailed to ninety-nine caregiver of the family with the aged with dementia who cared them at home utilizing day-care service at a special nursing home for the aged, and attended family class once a month. 67 valid answers were obtained. The average age of caregiver was 57.0 years; seventy-six percent of them were female. Their difficulties were own health condition and lack of a cooperator for care. The main component analysis of family M.B.I. for care showed that fatigue was the main factor, indicating that it is very important to provide the families with mental support. Many caregivers thought that their care were useful and worthy; however score of "emotional exhaustion" were higher and score of "self attainment" were lower.

  15. Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.

    Science.gov (United States)

    Ewertzon, Mats; Alvariza, Anette; Winnberg, Elisabeth; Leksell, Janeth; Andershed, Birgitta; Goliath, Ida; Momeni, Pardis; Kneck, Åsa; Skott, Maria; Årestedt, Kristofer

    2018-03-31

    To adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. A psychometric evaluation study, with a cross-sectional design. The content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. The study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. © 2018 John Wiley & Sons Ltd.

  16. Family-centred care for families living with cystic fibrosis in a rural setting: A qualitative study.

    Science.gov (United States)

    Jessup, Melanie; Smyth, Wendy; Abernethy, Gail; Shields, Linda; Douglas, Tonia

    2018-02-01

    To explore experiences of family-centred care among parents of children with cystic fibrosis living far from tertiary treatment centres and to understand what such distances mean to their care. Australia is a large continent. However, many families with a child with cystic fibrosis live in regional areas, often thousands of kilometres away from the primary treatment centres located in Australia's coastal capital cities. A qualitative, phenomenological design using a Van Manen () approach. Individual, semi-structured interviews were conducted with parents (n = 7) of a child with cystic fibrosis who lived in regional Australia. Thematic content data analysis was used. The essence of the participants' experience was their seeking certainty and continuity in the changeable realm of cystic fibrosis while negotiating a collaborative approach to their child's care. Five core themes and two subthemes were identified: "Daily care: a family affair," including the subtheme "Accessing expert care"; "Family-centred care: seeking inclusion"; "Control versus collaboration: seeking mutual trust," with the subtheme "The team who grows with you"; "Future projections"; and "The CF circle." Some concerns are not unlike those of their city counterparts, but can be intensified by their sense of distance and isolation. Insight into this unique milieu from the parents' perspective is requisite so that care is appropriate to such a challenging environment and incorporates the whole family. © 2017 John Wiley & Sons Ltd.

  17. Perceived Role Of Dietary Factors In Cancer Causation And ...

    African Journals Online (AJOL)

    Perceived Role Of Dietary Factors In Cancer Causation And Prevention Among ... The impact of cancer on patients, care givers and family could be ... as well as social support programmes including subsidized cancer-limiting feeding of ...

  18. Understanding nurses' and parents' perceptions of family-centred care.

    Science.gov (United States)

    Stuart, Megan; Melling, Sally

    2014-09-01

    To explore and compare differences between parents' and nurses' perceptions of family-centred care (FCC) for children's acute short-stay admissions. Mixed-method questionnaires were designed to compare care task delegation between nurse and parent participants in the study. Parents and nurses had similar perceptions of task allocation in FCC. Parents generally were prepared to undertake basic care tasks only, rather than help with nursing interventions. Nurses had a comprehensive understanding of FCC. Most parents were not able to define FCC but carried it out naturally. In the UK, nurses and parents have similar expectations of FCC. It is unusual for parents to be given information or opportunities to engage in the care of the child beyond everyday tasks. The investigation highlighted the importance of negotiating with family members on each separate admission because, although most parents would be comfortable undertaking care tasks, each family and each situation is different.

  19. Not Babysitting: Work Stress and Well-Being for Family Child Care Providers

    Science.gov (United States)

    Gerstenblatt, Paula; Faulkner, Monica; Lee, Ahyoung; Doan, Linh Thy; Travis, Dnika

    2014-01-01

    Family child care providers contend with a number of work stressors related to the dual roles of operating a small business and providing child care in their home. Research has documented many sources of work related stress for family child care providers; however, research examining family child care providers' experiences outside of the…

  20. Decision-making among patients and their family in ALS care: a review.

    Science.gov (United States)

    Foley, Geraldine; Hynes, Geralyn

    2018-05-01

    Practice guidelines in ALS care emphasise the role of the patient and their family in the decision-making process. We aimed to examine the ALS patient/family relationship in the decision-making process and to ascertain how patients and their family can shape one another's decisions pertaining to care. We conducted a review of peer-reviewed empirical research, published in full and in English between January 2007 and January 2017, relating to care decision-making among ALS patients and their family. Database sources included: Medline; CINAHL; AMED; PsycINFO; PsycARTICLES; and Social Sciences Full Text. A narrative synthesis was undertaken. Forty-seven studies from the empirical literature were extracted. The family viewpoint was captured primarily from family members with direct care-giving duties. Patients' cognitive status was not routinely assessed. The findings revealed that the decision-making process in ALS care can be contoured by patients' and family caregivers' perceived responsibilities to one another and to the wider family. Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.

  1. Impact of Potential Accreditation and Certification in Family Medicine Maternity Care.

    Science.gov (United States)

    Eden, Aimee R; Peterson, Lars E

    2017-01-01

    Advanced maternity care training in family medicine is highly variable at both the residency and fellowship levels. Declining numbers of family physicians providing maternity care services may exacerbate disparities in access to maternal and child care, especially in rural and other underserved communities. Accreditation of maternity care fellowships and board certification may be one potential avenue to address this trend. This study sought to understand the perceptions and beliefs of key family medicine stakeholders in advanced maternity care regarding the formalization of maternity care training through fellowship accreditation and the creation of a certificate of added qualification (CAQ). In 2014 and 2015, the authors conducted semi-structured interviews with 51 key stakeholders in family medicine maternity care. Transcribed interviews were coded using an iterative process to identify themes and patterns until saturation was reached. Participants generally supported both maternity care fellowship accreditation and a CAQ and recognized multiple advantages such as legitimization of training. Many had concerns about potential negative unintended consequences such as a loss of curricular flexibility; however, most felt that these could be mediated. Only a few did not support one or both aspects of formalization. Most participants interviewed support formalizing maternity care fellowship training in family medicine through accreditation and a subsequent CAQ, if implemented with attention to minimizing the potential negative consequences. Such formalization would recognize the advanced skill and training of family physicians practicing advanced maternity care and could address some access issues to essential maternity care services for rural and other underserved populations.

  2. Satisfaction with quality of ICU care for patients and families

    DEFF Research Database (Denmark)

    Jensen, Hanne Irene; Gerritsen, Rik T; Koopmans, Matty

    2017-01-01

    as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators. CONCLUSIONS: Most family members were moderately or very satisfied with patient care, family care, information and decision-making...... in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators......BACKGROUND: Families' perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the "Family Satisfaction in the ICU" (euroFS-ICU). The aim of the study was to examine assessments of satisfaction...

  3. Open innovation in health care: analysis of an open health platform.

    Science.gov (United States)

    Bullinger, Angelika C; Rass, Matthias; Adamczyk, Sabrina; Moeslein, Kathrin M; Sohn, Stefan

    2012-05-01

    Today, integration of the public in research and development in health care is seen as essential for the advancement of innovation. This is a paradigmatic shift away from the traditional assumption that solely health care professionals are able to devise, develop, and disseminate novel concepts and solutions in health care. The present study builds on research in the field of open innovation to investigate the adoption of an open health platform by patients, care givers, physicians, family members, and the interested public. Results suggest that open innovation practices in health care lead to interesting innovation outcomes and are well accepted by participants. During the first three months, 803 participants of the open health platform submitted challenges and solutions and intensively communicated by exchanging 1454 personal messages and 366 comments. Analysis of communication content shows that empathic support and exchange of information are important elements of communication on the platform. The study presents first evidence for the suitability of open innovation practices to integrate the general public in health care research in order to foster both innovation outcomes and empathic support. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

  4. Palliative Care Needs Assessment in the Neuro-ICU: Effect on Family.

    Science.gov (United States)

    Creutzfeldt, Claire J; Hanna, Marina G; Cheever, C Sherry; Lele, Abhijit V; Spiekerman, Charles; Engelberg, Ruth A; Curtis, J Randall

    2017-10-01

    Examine the association of a daily palliative care needs checklist on outcomes for family members of patients discharged from the neurosciences intensive care unit (neuro-ICU). We conducted a prospective, longitudinal cohort study in a single, thirty-bed neuro-ICU in a regional comprehensive stroke and level 1 trauma center. One of two neuro-ICU services that admit patients to the same ICU on alternating days used a palliative care needs checklist during morning work rounds. Between March and October, 2015, surveys were mailed to family members of patients discharged from the neuro-ICU. Nearly half of surveys (n = 91, 48.1%) were returned at a median of 4.7 months. At the time of survey completion, mean Modified rankin scale score (mRS) of neuro-ICU patients was 3.1 (SD 2). Overall ratings of quality of care were relatively high (82.2 on a 0-100 scale) with 32% of family members meeting screening criteria for depressive syndrome. The primary outcome measuring family satisfaction, consisting of eight items from the Family Satisfaction in the ICU questionnaire, did not differ significantly between families of patients from either ICU service nor did family ratings of depression (PHQ-8) and post-traumatic stress (PCL-17). Among families of patients discharged from the neuro-ICU, the daily use of a palliative care needs checklist had no measurable effect on family satisfaction scores or long-term psychological outcomes. Further research is needed to identify optimal interventions to meet the palliative care needs specific to family members of patients treated in the neuro-ICU.

  5. The Work-Family Support Roles of Child Care Providers across Settings

    Science.gov (United States)

    Bromer, Juliet; Henly, Julia R.

    2009-01-01

    This paper presents a qualitative investigation of the work-family support roles of a sample of 29 child care providers serving low-income families in the Chicago area (16 family, friend, and neighbor providers (FFN), 7 licensed family child care providers (FCC), and 6 center-based teachers). Providers report offering low-income parents…

  6. Insurance + access not equal to health care: typology of barriers to health care access for low-income families.

    Science.gov (United States)

    Devoe, Jennifer E; Baez, Alia; Angier, Heather; Krois, Lisa; Edlund, Christine; Carney, Patricia A

    2007-01-01

    Public health insurance programs have expanded coverage for the poor, and family physicians provide essential services to these vulnerable populations. Despite these efforts, many Americans do not have access to basic medical care. This study was designed to identify barriers faced by low-income parents when accessing health care for their children and how insurance status affects their reporting of these barriers. A mixed methods analysis was undertaken using 722 responses to an open-ended question on a health care access survey instrument that asked low-income Oregon families, "Is there anything else you would like to tell us?" Themes were identified using immersion/crystallization techniques. Pertinent demographic attributes were used to conduct matrix coded queries. Families reported 3 major barriers: lack of insurance coverage, poor access to services, and unaffordable costs. Disproportionate reporting of these themes was most notable based on insurance status. A higher percentage of uninsured parents (87%) reported experiencing difficulties obtaining insurance coverage compared with 40% of those with insurance. Few of the uninsured expressed concerns about access to services or health care costs (19%). Access concerns were the most common among publicly insured families, and costs were more often mentioned by families with private insurance. Families made a clear distinction between insurance and access, and having one or both elements did not assure care. Our analyses uncovered a 3-part typology of barriers to health care for low-income families. Barriers to health care can be insurmountable for low-income families, even those with insurance coverage. Patients who do not seek care in a family medicine clinic are not necessarily getting their care elsewhere.

  7. Care and caring in the intensive care unit: Family members' distress and perceptions about staff skills, communication, and emotional support.

    Science.gov (United States)

    Carlson, Eve B; Spain, David A; Muhtadie, Luma; McDade-Montez, Liz; Macia, Kathryn S

    2015-06-01

    Family members of intensive care unit (ICU) patients are sometimes highly distressed and report lower satisfaction with communication and emotional support from staff. Within a study of emotional responses to traumatic stress, associations between family distress and satisfaction with aspects of ICU care were investigated. In 29 family members of trauma patients who stayed in an ICU, we assessed symptoms of depression and posttraumatic stress disorder (PTSD) during ICU care. Later, family members rated staff communication, support, and skills and their overall satisfaction with ICU care. Ratings of staff competence and skills were significantly higher than ratings of frequency of communication, information needs being met, and support. Frequency of communication and information needs being met were strongly related to ratings of support (rs = .75-.77) and staff skills (rs = .77-.85), and aspects of satisfaction and communication showed negative relationships with symptoms of depression (rs = -.31 to -.55) and PTSD (rs = -.17 to -.43). Although satisfaction was fairly high, family member distress was negatively associated with several satisfaction variables. Increased understanding of the effects of traumatic stress on family members may help staff improve communication and increase satisfaction of highly distressed family members. Published by Elsevier Inc.

  8. The Family Meeting in Palliative Care: Role of the Oncology Nurse.

    Science.gov (United States)

    Glajchen, Myra; Goehring, Anna

    2017-12-01

    To describe the family meeting in palliative and end-of-life care, highlighting the role of the oncology nurse. Specific strategies will be provided for pre-meeting preparation, communication, and follow-up activities. A conceptual framework drawn from family and communication theory, and best practices from the clinical, research, nursing, and palliative care literature. Working with patients and families is complex, but the family meeting is a promising tool and a potential quality indicator in palliative care. The nurse is well positioned to participate fully in every aspect of the family meeting. Copyright © 2017 Elsevier Inc. All rights reserved.

  9. Care Wounds: Precarious Vulnerability and the Potential of Exposure.

    Science.gov (United States)

    Cubellis, Lauren

    2018-04-07

    What does it mean to offer care when the act of caring is wounding to its giver? For peer specialists-individuals with lived experience as patients in the psychiatric system-this question shapes how they use their own histories to provide support for individuals experiencing psychiatric crisis. Peer support is unique in the way it draws on empathetic resonance and depends on carefully deployed vulnerability; where one connects with others through the recognition of shared experience and mutual hurt. For peers, care works when this guidance, reassurance, and "being with"-all of which draw upon their own stories of traumatic history and variegated suffering-mitigate the present crisis being experienced by another. Drawing on twenty-eight months of fieldwork with a peer-staffed crisis respite center in the eastern United States, I argue that the peer specialist becomes the embodiment of a novel intersection of intimacy and compensation; one that poses vulnerability not as a consequence, casualty, or risk factor in the commodification of care, but as its principle vector of resonance and the assumption on which it is based. For peers, care that works-in that it creates a mutual resonance for the recipient-becomes simultaneously care that wounds its giver.

  10. Rethinking family-centred care for the child and family in hospital.

    Science.gov (United States)

    Tallon, Mary M; Kendall, Garth E; Snider, Paul D

    2015-05-01

    This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child's family. The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children's hospitals. Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse-family partnership model to FCC. While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they

  11. Improving Support Services for Family Child Care through Relationship-Based Training

    Science.gov (United States)

    Bromer, Juliet; Bibbs, Tonya

    2011-01-01

    Family child care (FCC) providers often experience isolation from other early childhood and child care professionals. Yet, research suggests that providers who network with other providers, engage with community resources, and belong to support groups tend to offer higher quality child care. For example, the Family Child Care Network Impact Study…

  12. Assessment of quality of care in family planning services in Jimma ...

    African Journals Online (AJOL)

    Background: Providing quality of care in family planning services is an important task for care providers so as to increase service utilization and coverage; however, little is known about the existing quality of care in such services. Objective: To assess quality of care in family planning services in Jimma Zone, southwest ...

  13. Caring for family caregivers: An analysis of a family-centered intervention

    Directory of Open Access Journals (Sweden)

    Carme Ferré-Grau

    2014-08-01

    Full Text Available Objective To assess the effectiveness of Problem-Solving Therapy (PST on family caregivers through the use of scales to measure anxiety, depression and emotional distress; and to explore facilitating factors and obstacles for its use based on the narrative of nurses. Method A clinical trial and an exploratory focus group with the use of mixed analysis methodology. The study was conducted in a primary health care center in Tarragona, Spain, and the sample consisted of 122 family caregivers who were included in the home care service, and 10 nurses who participated in the intervention group. Family caregivers with evident symptoms of anxiety, depression and emotional distress received PST in the intervention group. The intervention group also consisted of a discussion with eight nurses, which was transcribed and submitted to content analysis. Conclusion Problem-Solving Therapy proved to be effective in reducing perceived anxiety, depression and emotional distress. We identified its strong points and obstacles as described by nurses.

  14. Nurses Empathy and Family Needs in the Intensive Care Units

    Directory of Open Access Journals (Sweden)

    Sima Moghaddasian

    2013-08-01

    Full Text Available Introduction: The patients’ families in intensive care units (ICUs experience excessive stress which may disrupt their performance in daily life. Empathy is basic to the nursing role and has been found to be associated with improved patient outcomes and greater satisfaction with care in patient and his/her family. However, few studies have investigated the nursing empathy with ICU patients. This study aimed to assess nursing empathy and its relationship with the needs, from the perspective of families of patients in ICU.Methods: In this cross-sectional study, 418 subjects were selected among families of patients admitted to ICUs in Tabriz, Iran, by convenience sampling, from May to August 2012. Data were collected through Barrett-Lennard Relationship inventory (BLRI empathy scale and Critical Care Family Needs Intervention (CCFNI inventories and were analyzed using descriptive and inferential statistical tests. Results: Findings showed that most of the nurses had high level of empathy to the patients (38.8%. There was also statistically significant relationship between nurses’ empathy and needs of patients’ families (p < 0.001. Conclusion: In this study we found that by increasing the nurse’s empathy skills, we would be able to improve providing family needs. Through empathic communication, nurses can encourage family members to participate in planning for the care of their patients. However, further studies are necessary to confirm the results.

  15. Family Caregivers’ Social Representations of Death in a Palliative Care Context

    OpenAIRE

    Sabrina Lessard; Bernard-Simon Leclerc; Suzanne Mongeau

    2016-01-01

    The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a) ...

  16. Association of Group Prenatal Care in US Family Medicine Residencies With Maternity Care Practice: A CERA Secondary Data Analysis.

    Science.gov (United States)

    Barr, Wendy B; Tong, Sebastian T; LeFevre, Nicholas M

    2017-03-01

    Group prenatal care has been shown to improve both maternal and neonatal outcomes. With increasing adaption of group prenatal care by family medicine residencies, this model may serve as a potential method to increase exposure to and interest in maternity care among trainees. This study aims to describe the penetration, regional and program variations, and potential impacts on future maternity care practice of group prenatal care in US family medicine residencies. The CAFM Educational Research Alliance (CERA) conducted a survey of all US family medicine residency program directors in 2013 containing questions about maternity care training. A secondary data analysis was completed to examine relevant data on group prenatal care in US family medicine residencies and maternity care practice patterns. 23.1% of family medicine residency programs report provision of group prenatal care. Programs with group prenatal care reported increased number of vaginal deliveries per resident. Controlling for average number of vaginal deliveries per resident, programs with group prenatal care had a 2.35 higher odds of having more than 10% of graduates practice obstetrics and a 2.93 higher odds of having at least one graduate in the past 5 years enter an obstetrics fellowship. Residency programs with group prenatal care models report more graduates entering OB fellowships and practicing maternity care. Implementing group prenatal care in residency training can be one method in a multifaceted approach to increasing maternity care practice among US family physicians.

  17. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    Science.gov (United States)

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.

  18. Resiliency in Children and Youth in Kinship Care and Family Foster Care

    Science.gov (United States)

    Metzger, Jed

    2008-01-01

    This study examined self-concept, resiliency and social support in 107 children and youth placed in foster care in New York City. Of the children and youth, 55 were placed in family foster care, while the remaining 52 children and youth were placed in a kinship foster home. Significantly more of mothers of the kinship foster care children and…

  19. Families' experiences of intensive care unit quality of care

    DEFF Research Database (Denmark)

    Jensen, Hanne Irene; Gerritsen, Rik T; Koopmans, Matty

    2015-01-01

    PURPOSE: The purpose of the study is to adapt and provide preliminary validation for questionnaires evaluating families' experiences of quality of care for critically ill patients in the intensive care unit (ICU). MATERIALS AND METHODS: This study took place in 2 European ICUs. Based on literature...... validity. RESULTS: A total of 110 family members participated. Response rate was 87%. For all questions, a median of 97% (94%-99%) was assessed as relevant, and a median of 98% (97%-100%), as understandable. Median ceiling effect was 41% (30%-47%). There was a median of 0% missing data (0%-1%). Test......-retest reliability showed a median weighted κ of 0.69 (0.53-0.83). Validation showed significant correlation between total scores and key questions. CONCLUSIONS: The questions were assessed as relevant and understandable, providing high face and content validity. Ceiling effects were comparable to similar...

  20. Development and Validation of Quality Criteria for Providing Patient- and Family-centered Injury Care.

    Science.gov (United States)

    Boyd, Jamie M; Burton, Rachael; Butler, Barb L; Dyer, Dianne; Evans, David C; Felteau, Melissa; Gruen, Russell L; Jaffe, Kenneth M; Kortbeek, John; Lang, Eddy; Lougheed, Val; Moore, Lynne; Narciso, Michelle; Oxland, Peter; Rivara, Frederick P; Roberts, Derek; Sarakbi, Diana; Vine, Karen; Stelfox, Henry T

    2017-08-01

    The aim of this study was to develop and evaluate the content validity of quality criteria for providing patient- and family-centered injury care. Quality criteria have been developed for clinical injury care, but not patient- and family-centered injury care. Using a modified Research AND Development Corporation (RAND)/University of California, Los Angeles (UCLA) Appropriateness Methodology, a panel of 16 patients, family members, injury and quality of care experts serially rated and revised criteria for patient- and family-centered injury care identified from patient and family focus groups. The criteria were then sent to 384 verified trauma centers in the United States, Canada, Australia, and New Zealand for evaluation. A total of 46 criteria were rated and revised by the panel over 4 rounds of review producing 14 criteria related to clinical care (n = 4; transitions of care, pain management, patient safety, provider competence), communication (n = 3; information for patients/families; communication of discharge plans to patients/families, communication between hospital and community providers), holistic care (n = 4; patient hygiene, kindness and respect, family access to patient, social and spiritual support) and end-of-life care (n = 3; decision making, end-of-life care, family follow-up). Medical directors, managers, or coordinators representing 254 trauma centers (66% response rate) rated 12 criteria to be important (95% of responses) for patient- and family-centered injury care. Fewer centers rated family access to the patient (80%) and family follow-up after patient death (65%) to be important criteria. Fourteen-candidate quality criteria for patient- and family-centered injury care were developed and shown to have content validity. These may be used to guide quality improvement practices.

  1. Public Health Insurance and Health Care Utilization for Children in Immigrant Families.

    Science.gov (United States)

    Percheski, Christine; Bzostek, Sharon

    2017-12-01

    Objectives To estimate the impacts of public health insurance coverage on health care utilization and unmet health care needs for children in immigrant families. Methods We use survey data from National Health Interview Survey (NHIS) (2001-2005) linked to data from Medical Expenditures Panel Survey (MEPS) (2003-2007) for children with siblings in families headed by at least one immigrant parent. We use logit models with family fixed effects. Results Compared to their siblings with public insurance, uninsured children in immigrant families have higher odds of having no usual source of care, having no health care visits in a 2 year period, having high Emergency Department reliance, and having unmet health care needs. We find no statistically significant difference in the odds of having annual well-child visits. Conclusions for practice Previous research may have underestimated the impact of public health insurance for children in immigrant families. Children in immigrant families would likely benefit considerably from expansions of public health insurance eligibility to cover all children, including children without citizenship. Immigrant families that include both insured and uninsured children may benefit from additional referral and outreach efforts from health care providers to ensure that uninsured children have the same access to health care as their publicly-insured siblings.

  2. Family Structure and Long-Term Care Insurance Purchase

    Science.gov (United States)

    Van Houtven, Courtney Harold; Coe, Norma B.; Konetzka, R. Tamara

    2015-01-01

    While it has long been assumed that family structure and potential sources of informal care play a large role in the purchase decisions for long-term care insurance (LTCI), current empirical evidence is inconclusive. Our study examines the relationship between family structure and LTCI purchase and addresses several major limitations of the prior literature by using a long panel of data and considering modern family relationships, such as presence of stepchildren. We find that family structure characteristics from one’s own generation, particularly about one’s spouse, are associated with purchase, but that few family structure attributes from the younger generation have an influence. Family factors that may indicate future caregiver supply are negatively associated with purchase: having a coresidential child, signaling close proximity, and having a currently working spouse, signaling a healthy and able spouse, that LTC planning has not occurred yet, or that there is less need for asset protection afforded by LTCI. Dynamic factors, such as increasing wealth or turning 65, are associated with higher likelihood of LTCI purchase. PMID:25760583

  3. More Hands in Complex ART Delivery? Experiences from the Expert ...

    African Journals Online (AJOL)

    including Doctors, nurses and counsellors, clinicians), ART clients and with family care givers of ART clients, at a Health center IV-HIV clinic in a rural district in Uganda. ... Keywords: HIV/AIDS, ethnography, poorly resourced setting, Expert Clients, ART ...

  4. Impact of Family History Assessment on Communication with Family Members and Health Care Providers: A report from the Family Healthware™ Impact Trial (FHITr)

    Science.gov (United States)

    Wang, Catharine; Sen, Ananda; Plegue, Melissa; Ruffin, Mack T.; O'Neill, Suzanne M.; Rubinstein, Wendy S.; Acheson, Louise S.

    2015-01-01

    Objective This study examines the impact of Family Healthware™ on communication behaviors; specifically, communication with family members and health care providers about family health history. Methods A total of 3786 participants were enrolled in the Family Healthware™ Impact Trial (FHITr) in the United States from 2005-7. The trial employed a two-arm cluster-randomized design, with primary care practices serving as the unit of randomization. Using generalized estimating equations (GEE), analyses focused on communication behaviors at 6 month follow-up, adjusting for age, site and practice clustering. Results A significant interaction was observed between study arm and baseline communication status for the family communication outcomes (psfamily members about family history risk (OR=1.24, p=0.042) and actively collecting family history information at follow-up (OR=2.67, p=0.026). Family Healthware™ did not have a significant effect on family communication among those already communicating at baseline, or on provider communication, regardless of baseline communication status. Greater communication was observed among those at increased familial risk for a greater number of diseases. Conclusion Family Healthware™ prompted more communication about family history with family members, among those who were not previously communicating. Efforts are needed to identify approaches to encourage greater sharing of family history information, particularly with health care providers. PMID:25901453

  5. Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

    Science.gov (United States)

    Norinder, Maria; Goliath, Ida; Alvariza, Anette

    2017-06-01

    Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  6. Care Experiences of Adults With a Dual Diagnosis and Their Family Caregivers

    Directory of Open Access Journals (Sweden)

    David B. Nicholas

    2017-07-01

    Full Text Available Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis” contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis ( n = 7 and their caregiving parents ( n = 8 to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.

  7. Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

    Science.gov (United States)

    Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh

    2017-04-01

    Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  8. [The effect of telecommunication(with Skype)to improve a cognitive function for elderly patients with dementia and to reduce a care burden for their care givers].

    Science.gov (United States)

    Hori, Miyako; Furuya, Ayana; Kubota, Masakazu; Koike, Akihiko; Kinoshita, Ayae

    2011-12-01

    We conducted an intervention study to clarify how effectively videophone(Skype)was used in the communication for elderly patients with dementia being cared at home and their caregivers. For a period of 12 weeks, a patient-caregiver pair(n =8)communicated with a nurse via computer for 30 minutes once a week. The patient and caregiver worked as a pair. Before and after 12-week study period started, the intervention and control group(n=8)patients were assessed on cognitive scale(HDS-R), ADL, care burden scale(J-ZBI_8)and hours of sleep for caregivers. The result on the 12th week showed a significant improvement in hours of sleep on the intervention group of caregivers, and signs of improvement on the intervention group of patients in HDS-R. According to a questionnaire survey for caregivers, many of them said that a videophone communication was a pleasant experience for the family, and it is also useful for information gathering. Therefore, we think that the videophone communication is useful for a cognitive rehab work and giving good feelings for the patient. It also gives a good satisfaction for the family. Furthermore, a patient who had an intervention for 3 times in 2 years showed a sign of improvements in the cognitive function and care burden scale during the intervention period. However, the score dropped for several months. Therefore, it is important that a continuous intervention is necessary.

  9. Foster care as a form of family support

    Directory of Open Access Journals (Sweden)

    Ewa Flaga

    2014-12-01

    Full Text Available The foster care system in Poland has recently undergone many changes on the basis of new legislation. It has been presented as a part of the work with the child and its family towards reintegration of the child’s family. However, in order for the aim of foster care to be achieved in this form, it is necessary to integrate work with the child and its family with all the elements of the local environment. Similar assumptions are the basis of the pedagogical concept of the environmental educational system by Stanisław Kowalski. The article presents how to implement pedagogical objectives through legal solutions, which emphasize the integration of the local environment.

  10. Portfolio giver støtte og sammenhæng i sygeplejeuddannelsen

    DEFF Research Database (Denmark)

    Bruhn, Helle; Hjorth, Anne Charlotte Overgaard

    2013-01-01

    Portfolio er et pædagogisk redskab, som kan styrke den enkelte studerendes læring og støtte og give sammenhæng i sygeplejerskeuddannelsen. På baggrund af et udviklingsprojekt bidrager artiklen med konkrete anbefalinger til både undervisere og kliniske vejledere, der kan fremme brugen af portfolio....... I stedet for at se portfolio som en mappe, hvor der samles dokumenter, er det afgørende at holde fokus på de studerendes læreproces og refleksion, og studieredskabet kræver opmærksomhed fra undervisere og vejledere, hvis det skal anvendes af studerende. For både studerende og kliniske vejledere er...... forståelse for metoden det, der gør, at portfolio giver mening....

  11. Meanings and expressions of care and caring for elders in urban Namibian families: a transcultural nursing study.

    Science.gov (United States)

    Leuning, C J; Small, L F; van Dyk, A

    2000-09-01

    Since Namibia's Independence in 1990, the population of elders--persons 65 years old and older--in urban communities is growing steadily. As such, requests for home health care, health counselling, respite care and residential care for aging members of society are overwhelming nurses and the health care system. This study expands transcultural nursing knowledge by increasing understanding of generic (home-based) patterns of elder care that are practised and lived by urban Namibian families. Guided by Madeleine Leininger's theory of culture care diversity and universality and the ethnonursing research method, emic (insider) meanings and expressions of care and caring for elders in selected urban households have been transposed into five substantive themes. The themes, which depict what carring for elders means to urban families, include: 1 nurturing the health of the family, 2 trusting in the benevolence of life as lived, 3 honouring one's elders, 4 sustaining security and purpose for life amid uncertainty, and 5 living with rapidly changing cultural and social structures. These findings add a voice from the developing world to the evolving body of transcultural nursing knowledge. Synthesis of findings with professional care practices facilitates the creation of community-focussed models for provisioning culturally congruent nursing care to elders and their families in urban Namibia.

  12. AIDS care: why and how should industry respond?

    Science.gov (United States)

    Smart, R

    2000-01-01

    This article reports the AIDS care response of industries to the rising AIDS epidemic in South Africa. It has been reported that during 1993-99 the rate of hospital bed occupancy doubled to over 8/1000 and that 50% of ill-health retirements in 1998 were due to AIDS. Important issues to be considered by industries are the medical separation due to ill health, poor health care services. The focus of HIV/AIDS care should be on the patient, family, care giver, community, and health services, and must be based on the principles of decentralization and integration of sustainable and cost-effective HIV/AIDS services. The development of a care package must be based on six dimensions; namely, appropriateness, acceptability, accessibility, effectiveness, efficiency, and equity. On the other hand, identification of indicators in relation to the components of the care package must include support groups and networks of people living with HIV; the provision of home-based care; responsiveness of the health system; the existence and application of clinical guidelines; and the effectiveness of referrals. Any organization with a commitment in providing care should establish a Care Task Team to develop a care strategy. It should focus on who can have access to the care, what the care consists of, and who will cover the cost. In addition, a review of the existing HIV/AIDS services must be done to identify shortfalls and highlight priority gaps.

  13. Improving Family Meetings in Intensive Care Units: A Quality Improvement Curriculum.

    Science.gov (United States)

    Gruenewald, David A; Gabriel, Michelle; Rizzo, Dorothy; Luhrs, Carol A

    2017-07-01

    Family meetings in the intensive care unit are associated with beneficial outcomes for patients, their families, and health care systems, yet these meetings often do not occur in a timely, effective, reliable way. The Department of Veterans Affairs Comprehensive End-of-Life Care Implementation Center sponsored a national initiative to improve family meetings in Veterans Affairs intensive care units across the United States. Process measures of success for the initiative were identified, including development of a curriculum to support facility-based quality improvement projects to implement high-quality family meetings. Identified curriculum requirements included suitability for distance learning and applicability to many clinical intensive care units. Curriculum modules were cross-mapped to the "Plan-Do-Study-Act" model to aid in planning quality improvement projects. A questionnaire was e-mailed to users to evaluate the curriculum's effectiveness. Users rated the curriculum's effectiveness in supporting and achieving aims of the initiative as 3.6 on a scale of 0 (not effective) to 4 (very effective). Users adapted the curriculum to meet local needs. The number of users increased from 6 to 17 quality improvement teams in 2 years. All but 3 teams progressed to implementation of an action plan. Users were satisfied with the effectiveness and adaptability of a family-meeting quality improvement curriculum to support implementation of a quality improvement project in Veterans Affairs intensive care units. This tool may be useful in facilitating projects to improve the quality of family meetings in other intensive care units. ©2017 American Association of Critical-Care Nurses.

  14. Quality of care in Norwegian nursing homes - typology of family perceptions.

    Science.gov (United States)

    Vinsnes, Anne G; Nakrem, Sigrid; Harkless, Gene E; Seim, Arnfinn

    2012-01-01

    This study aimed to elucidate the understandings and beliefs about quality held by family members of residents of Norwegian nursing homes. The objective reported in the study considers how family member judge factors that enhance or hamper high care quality. The percentage of those who will require care in a nursing home some time before the end of their lives will increase dramatically in the next 20 years. Therefore, anticipating this pressure to expand nursing home availability, it is urgent that these services are developed from a keen understanding of what creates the best value. Care quality from the family's perspective is just one piece of the nursing home experience that must be understood for optimal value in care to be realised. Qualitative methodology. Three focus group interviews; purposive sampling was used to recruit the 16 family members of residents in nursing homes. Three domains emerged that served as anchors for a typology of family perceptions of the quality care continuum: resident contentment, suitability of staff and environmental context. Each domain was developed with categories describing high- to low-quality markers, which were then clarified by enhancing and hindering factors. This typology provides a family perspective framework that may be useful to nursing leadership at all levels of the nursing home organisation to identify important quality of care strengths as well as markers of poor care. Overall, the typology is offered to expand nurses' understanding of quality, both practically and conceptually, to provide the best value in nursing care. © 2011 Blackwell Publishing Ltd.

  15. Children's health care assistance according to their families: a comparison between models of Primary Care

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    Vanessa Bertoglio Comassetto Antunes de Oliveira

    2015-02-01

    Full Text Available OBJECTIVE To compare the health assistance models of Basic Traditional Units (UBS with the Family Health Strategy (ESF units for presence and extent of attributes of Primary Health Care (APS, specifically in the care of children. METHOD A cross-sectional study of a quantitative approach with families of children attended by the Public Health Service of Colombo, Paraná. The Primary Care Assessment Tool (PCA-Tool was applied to parents of 482 children, 235 ESF units and 247 UBS units covering all primary care units of the municipality, between June and July 2012. The results were analyzed according to the PCA-Tool manual. RESULTS ESF units reached a borderline overall score for primary health care standards. However, they fared better in their attributes of Affiliation, Integration of care coordination, Comprehensiveness, Family Centeredness and Accessibility of use, while the attributes of Community Guidance/Orientation, Coordination of Information Systems, Longitudinality and Access attributes were rated as insufficient for APS. UBS units had low scores on all attributes. CONCLUSION The ESF units are closer to the principles of APS (Primary Health Care, but there is need to review actions of child care aimed at the attributes of APS in both care models, corroborating similar studies from other regions of Brazil.

  16. Nursing in family environment: caring for person in mental suffering

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    Lucas Amaral Martins

    2013-01-01

    Full Text Available The study aims to describe the experience of nursing care to person in mental suffering (PMS in the family context. Developed by nursing academic during home attendance, in the 2008.2 semester. The results showed that: is undeniable the family function of the PMS care, becoming the main partner of the heath teams, the care in the perspective of psychosocial rehabilitation influences the attitudes, patterns of response and participation in treatment, resulting in the empowerment of PMS and family. It’s concluded that home attendance contributes to the process of psychosocial rehabilitation of the PMS and assessment of mental health services, subsidizing the formulation of public policies for the sector, especially, in regard to care in perspective of the whole human life.

  17. Palliative Care in Critical Care Settings: A Systematic Review of Communication-Based Competencies Essential for Patient and Family Satisfaction.

    Science.gov (United States)

    Schram, Andrew W; Hougham, Gavin W; Meltzer, David O; Ruhnke, Gregory W

    2017-11-01

    There is an emerging literature on the physician competencies most meaningful to patients and their families. However, there has been no systematic review on physician competency domains outside direct clinical care most important for patient- and family-centered outcomes in critical care settings at the end of life (EOL). Physician competencies are an essential component of palliative care (PC) provided at the EOL, but the literature on those competencies relevant for patient and family satisfaction is limited. A systematic review of this important topic can inform future research and assist in curricular development. Review of qualitative and quantitative empirical studies of the impact of physician competencies on patient- and family-reported outcomes conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines for systematic reviews. The data sources used were PubMed, MEDLINE, Web of Science, and Google Scholar. Fifteen studies (5 qualitative and 10 quantitative) meeting inclusion and exclusion criteria were identified. The competencies identified as critical for the delivery of high-quality PC in critical care settings are prognostication, conflict mediation, empathic communication, and family-centered aspects of care, the latter being the competency most frequently acknowledged in the literature identified. Prognostication, conflict mediation, empathic communication, and family-centered aspects of care are the most important identified competencies for patient- and family-centered PC in critical care settings. Incorporation of education on these competencies is likely to improve patient and family satisfaction with EOL care.

  18. Family members' expectations regarding nurses' competence in care homes: a qualitative interview study.

    Science.gov (United States)

    Kiljunen, Outi; Kankkunen, Päivi; Partanen, Pirjo; Välimäki, Tarja

    2017-11-22

    Structural and cultural changes in the care of older people have influenced nursing practice, creating a need to identify current competency requirements for nurses working in care homes. Family members have an important role in ensuring the well-being of older people living in care homes, and family members' can provide valuable information about competence requirements. To explore the expectations of the care home residents' family members regarding the competence of nurses in care homes for older people. A qualitative descriptive design was used. Semi-structured interviews were conducted with 18 care home residents' family members between March and September 2016. Participants were recruited with help from regional associations and member associations of The Central Association of Carers in Finland and from regional associations of The Alzheimer's Society of Finland. The snowball technique was also used. The data were analysed using inductive content analysis. Ethics committee approval was obtained from the university committee on research ethics, and written informed consent was obtained from participants. The care home residents' family members expected that nurses would be able to interact with and treat people respectfully. Reflective collaboration between the nurse and a family member was also emphasised. Family members expected nurses to provide high-quality basic care and nursing and support residents' well-being individually and holistically. Family members' expectations reflect the need for ethical and interactional competence in the care home. In addition, evidence-based practice competencies are required to provide high-quality care. Nurses' ability to provide person-centred, individual and holistic care is vital to ensure care home residents' well-being. © 2017 Nordic College of Caring Science.

  19. Humanized care in the family health strategy

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    Alana Tamar Oliveira de Sousa

    2010-01-01

    Full Text Available The Health Community Agent (HCA has contributed in a meaningful way to enhance the bond professional-user/family, providing, thus, the humanized care for the users who receive attention from the Family Health Strategy (FHS. This research had the aim to investigate the strategies adopted by the health community agents in order to supply the humanized care for the FHS user. It is an exploratory research of qualitative nature which was accomplished in the Basic Health Units – BHU, placed in the Distrito Sanitário III, in João Pessoa – PB. Thirtyhealth community agents, from the Family Health Strategy, took part in the research. The data were collected by means of a questionnaire related to the objective proposed by the investigation and, afterwards, they were analyzed qualitatively through the Collective Subject Discourse (CSD technique. In this way, it was possible to foresee three main ideas: promoting care based on respect for the user’s singularity as well as the valuing of empathic relationship; home visit, guidance, surveillance, pointing out solutions for the user’sneeds; enhancement of the bond between community and the team responsible for action planning. The Collective Subject Discourse of the participants involved in the research, as regards the humanized care practice, had as core the respect for the patient’s dignity, prioritizing his or her real needs and emphasizing the multidisciplinary task. This investigation enables the reflection about the valuable contribution of the health community agents concerning the promotion of the humanized care having as reference the mentioned strategies.

  20. Empowering Students through History: "The Giver" as a Metaphor and Preparation for Studying History in the Secondary Classroom

    Science.gov (United States)

    Brugar, Kristy A.

    2012-01-01

    Students sometimes resist the history lessons their teachers try to impart; challenging the purpose and relevance of the information being shared. However, reading "The Giver" can help to bridge the gap between students accepting and rejecting the lessons of history while learning to value the skills such as citizenship and awareness associated…

  1. Mental health care services for children with special health care needs and their family members: prevalence and correlates of unmet needs.

    Science.gov (United States)

    Ganz, Michael L; Tendulkar, Shalini A

    2006-06-01

    To estimate the prevalence and correlates of unmet needs for mental health care services for children with special health care needs and their families. We use the National Survey of Children With Special Health Care Needs to estimate the prevalence of unmet mental health care needs among children with special health care needs (1-17 years old) and their families. Using logistic-regression models, we also assess the independent impact of child and family factors on unmet needs. Substantial numbers of children with special health care needs and members of their families have unmet needs for mental health care services. Children with special health care needs who were poor, uninsured, and were without a usual source of care were statistically significantly more likely to report that their mental health care needs were unmet. More severely affected children and those with emotional, developmental, or behavioral conditions were also statistically significantly more likely to report that their mental health care needs went unmet. Families of severely affected children or of children with emotional, developmental, or behavioral conditions were also statistically significantly more likely to report that their mental health care needs went unmet. Our results indicate that children with special health care needs and their families are at risk for not receiving needed mental health care services. Furthermore, we find that children in families of lower socioeconomic status are disproportionately reporting higher rates of unmet needs. These data suggest that broader policies to identify and connect families with needed services are warranted but that child- and family-centered approaches alone will not meet the needs of these children and their families. Other interventions such as anti-poverty and insurance expansion efforts may be needed as well.

  2. [Single-family rooms for neonatal intensive care units impacts on preterm newborns, families, and health-care staff. A systematic literature review].

    Science.gov (United States)

    Servel, A-C; Rideau Batista Novais, A

    2016-09-01

    The quality of the environment is an essential point in the care of preterm newborns. The design of neonatal intensive care units (NICUs) (open-bay, single-patient room, single-family room) directly affects both the preterm newborns and their caregivers (parents, healthcare staff). The aim of this systematic review was to evaluate the impact of single-family rooms on the preterm newborn, its parents, and the staff. Single-family rooms improve outcome for the preterm newborn, with increasing parental involvement and better control of the environment (fewer inappropriate stimulations such as high levels of noise and illumination). This kind of NICU design also improves parental and staff satisfaction. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

  3. Our Families, Our Children: The Lesbian and Gay Child Care Task Force Report on Quality Child Care.

    Science.gov (United States)

    Dispenza, Mary

    The Lesbian and Gay Child Care Task Force documented anecdotal evidence of homophobia in child care and school age communities, including: (1) refusal to accept children from lesbian, gay, bisexual, and transgender (LGBT) families into child care; (2) biased attitudes expressed to children when they speak about their families; and (3) demonstrated…

  4. Family centered care of hospitalized children: A hybrid concept analysis in Iran

    Directory of Open Access Journals (Sweden)

    Mahboobeh Khajeh

    2017-09-01

    Full Text Available Background: Family centered care of hospitalized children (FCCHC is a multidimensional concept, which is directly associated with the context and healthcare system. This study was conducted to analyze the concept of FCCHC in Iran.Methods: This concept analysis was conducted with the use of hybrid model in 3 phases: a literature review in the theoretical phase, semi-structured interviews and descriptive observations in the fieldwork phase, and combination of the results of 2 previous phases in the final analytical phase.Results: The 4 main themes extracted in theoretical phase included "family and healthcare professional participation", "information sharing with families", "family and healthcare professional relationship based on dignity and respect" and "individualized care of family".Moreover, 4 themes were emerged in the fieldwork phase, including "family as a nonparticipant visitor", "one-way education", "non-supportive interactions" and "non-specific care of family". In third phase with combination of the results of 2 phases, the final definition of the concept was presented.Conclusion: FCCHC is a comprehensive care that is affected by human and organizational factors and requires full participation of staff and family, effective interaction with family, education and information sharing with them, and individualized care of each family. By knowing the dimensions of the FCCHC, we will be able to run our activities to provide facilities and features for its optimal implementation in Iran.

  5. An Overview Of Specialist Nurse Role In Patients With Stroke Caring And Their Care-Givers Support

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    Elham Navab

    2017-02-01

    Full Text Available Background: The practical difficulties for patients with stroke include lack of information about their condition, poor knowledge of the services and benefits available. Specialist Stroke nurses provide education and support services for people with Stroke  in many health care systems. A key goal is helping and empowering unable people to self-manage their stroke and supporting caregivers of these valnurable population, too. Objective: The objective of this review was to assess the role of specialist nurse in care for patients following a stroke and their caregivers support. Search methods: The databases CINAHL, PubMed, Science Direct and Synergy were searched from 1988 to 2017 using the keywords Stroke, Specialist Nurse, Care, Caregivers and support. Bibliographies of relevant papers were searched, and hand searching of relevant publications was undertaken to identify additional Studies. Selection criteria: All studies of the effects of a specialist nurse practitioner on short and long term stroke outcomes were included in the review. Data collection and analysis: Three investigators performed data extraction and quality scoring independently; any discrepancies were resolved by consensus. Findings:  Stroke, Specialist Nurse, Care, Caregivers concepts and labels are defined and measured in different and often contradictory ways by using 31 founded study. Conclusions: The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care and specialist nurse requires further exploration. The contrasting paradigms of health care professionals and people with stroke regarding models of disability were highlighted.  Stroke, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.

  6. Overview of Robotic Devices for Nursing Care Project.

    Science.gov (United States)

    Hirukawa, Hirohisa

    2017-01-01

    METI/AMED are conducting a project on the development and deployment of robotic devices for nursing care to enhance the autonomy of elderly persons and assist care givers. An evaluation protocol is presented and the devices developed in the project are introduced. The devices consist of transfer assist devices (wearable/non-wearable), walking assist devices (outdoor/indoor), safety surveillance sensors (nursing home/private home), bath lift and toilet assist.

  7. Match of psychosocial risk and psychosocial care in families of a child with cancer.

    Science.gov (United States)

    Sint Nicolaas, S M; Schepers, S A; van den Bergh, E M M; de Boer, Y; Streng, I; van Dijk-Lokkart, E M; Grootenhuis, M A; Verhaak, C M

    2017-12-01

    The Psychosocial Assessment Tool (PAT) was developed to screen for psychosocial risk, aimed to be supportive in directing psychosocial care to families of a child with cancer. This study aimed to determine (i) the match between PAT risk score and provided psychosocial care with healthcare professionals blind to outcome of PAT assessment, and (ii) the match between PAT risk score and team risk estimation. Eighty-three families of children with cancer from four pediatric oncology centers in the Netherlands participated (59% response rate). The PAT and team risk estimation was assessed at diagnosis (M = 40.2 days, SD = 14.1 days), and the content of provided psychosocial care in the 5-month period thereafter resulting in basic or specialized care. According to the PAT, 65% of families were defined as having low (universal), 30% medium (targeted), and 5% high (clinical) risk for developing psychosocial problems. Thirty percent of patients from universal group got basic psychosocial care, 63% got specialized care, and 7% did not get any care. Fourteen percent of the families at risk got basic care, 86% got specialized care. Team risk estimations and PAT risk scores matched with 58% of the families. This study showed that families at risk, based on standardized risk assessment with the PAT, received more specialized care than families without risk. However, still 14% of the families with high risks only received basic care, and 63% of the families with standard risk got specialized care. Standardized risk assessment can be used as part of comprehensive care delivery, complementing the team. © 2017 Wiley Periodicals, Inc.

  8. Patient and family/friend satisfaction in a sample of Jordanian Critical Care Units.

    Science.gov (United States)

    Mosleh, S; Alja'afreh, M; Lee, A J

    2015-12-01

    The aim of the study was to assess the validity of family members/friends as proxies by comparing perceptions of satisfaction with care and decision making between critically ill patients and their family/friends. A comparative, descriptive cross-sectional study. Seven Critical Care Units across four public and military hospitals in the centre and southern regions of Jordan. A modified version of the Family Satisfaction-ICU (FS-ICU) questionnaire was distributed to Critical Care Unit (CCU) patients before hospital discharge. In addition, up to two family members/close friends were also asked to complete the questionnaire. A total of 213 patients (response rate 72%) and 246 family members/friends (response rate 79%) completed and returned the questionnaire. Although the majority of family members/friends and patients were satisfied with overall care, patients were generally significantly less satisfied (mean (SD) care subscale 75.6 (17.8) and 70.9 (17.3), respectively, (p=0.005). When individual items were examined, significant differences in nursing care (family/friends 80.1 (20.7) versus patient 75.9 (22.2), p=0.038) and inclusion in decision making (family/friends 53.9 (33.2) versus patient 62.0 (34.2), p=0.010) were found. The study showed a degree of congruence between patients and their family members/friends in relation to their satisfaction with the CCU experience. Thus, views of family/friends may serve as a proxy in assessing care and decision making processes of critically ill patients. Appropriate training of the critical care team and provision of strategies to address the concerns of patients' families are needed to improve overall patient satisfaction. Copyright © 2015 Elsevier Ltd. All rights reserved.

  9. Family-Centered Care in Juvenile Justice Institutions: A Mixed Methods Study Protocol.

    Science.gov (United States)

    Simons, Inge; Mulder, Eva; Rigter, Henk; Breuk, René; van der Vaart, Wander; Vermeiren, Robert

    2016-09-12

    Treatment and rehabilitation interventions in juvenile justice institutions aim to prevent criminal reoffending by adolescents and to enhance their prospects of successful social reintegration. There is evidence that these goals are best achieved when the institution adopts a family-centered approach, involving the parents of the adolescents. The Academic Workplace Forensic Care for Youth has developed two programs for family-centered care for youth detained in groups for short-term and long-term stay, respectively. The overall aim of our study is to evaluate the family-centered care program in the first two years after the first steps of its implementation in short-term stay groups of two juvenile justice institutions in the Netherlands. The current paper discusses our study design. Based on a quantitative pilot study, we opted for a study with an explanatory sequential mixed methods design. This pilot is considered the first stage of our study. The second stage of our study includes concurrent quantitative and qualitative approaches. The quantitative part of our study is a pre-post quasi-experimental comparison of family-centered care with usual care in short-term stay groups. The qualitative part of our study involves in-depth interviews with adolescents, parents, and group workers to elaborate on the preceding quantitative pilot study and to help interpret the outcomes of the quasi-experimental quantitative part of the study. We believe that our study will result in the following findings. In the quantitative comparison of usual care with family-centered care, we assume that in the latter group, parents will be more involved with their child and with the institution, and that parents and adolescents will be more motivated to take part in therapy. In addition, we expect family-centered care to improve family interactions, to decrease parenting stress, and to reduce problem behavior among the adolescents. Finally, we assume that adolescents, parents, and the

  10. Family model of HIV care and treatment: a retrospective study in Kenya

    Science.gov (United States)

    2012-01-01

    Background Nyanza Province, Kenya, had the highest HIV prevalence in the country at 14.9% in 2007, more than twice the national HIV prevalence of 7.1%. Only 16% of HIV-infected adults in the country accurately knew their HIV status. Targeted strategies to reach and test individuals are urgently needed to curb the HIV epidemic. The family unit is one important portal. Methods A family model of care was designed to build on the strengths of Kenyan families. Providers use a family information table (FIT) to guide index patients through the steps of identifying family members at HIV risk, address disclosure, facilitate family testing, and work to enrol HIV-positive members and to prevent new infections. Comprehensive family-centred clinical services are built around these steps. To assess the approach, a retrospective study of patients receiving HIV care between September 2007 and September 2009 at Lumumba Health Centre in Kisumu was conducted. A random sample of FITs was examined to assess family reach. Results Through the family model of care, for each index patient, approximately 2.5 family members at risk were identified and 1.6 family members were tested. The approach was instrumental in reaching children; 61% of family members identified and tested were children. The approach also led to identifying and enrolling a high proportion of HIV- positive partners among those tested: 71% and 89%, respectively. Conclusions The family model of care is a feasible approach to broaden HIV case detection and service reach. The approach can be adapted for the local context and should continue to utilize index patient linkages, FIT adaption, and innovative methods to package services for families in a manner that builds on family support and enhances patient care and prevention efforts. Further efforts are needed to increase family member engagement. PMID:22353553

  11. Implementing family communication pathway in neurosurgical patients in an intensive care unit.

    Science.gov (United States)

    Kodali, Sashikanth; Stametz, Rebecca; Clarke, Deserae; Bengier, Amanda; Sun, Haiyan; Layon, A J; Darer, Jonathan

    2015-08-01

    Family-centered care provides family members with basic needs, which includes information, reassurance, and support. Though national guidelines exist, clinical adoption often lags behind in this area. The Geisinger Health System developed and implemented a program for reliable delivery of best practices related to family communication to patients and families admitted to the intensive care unit (ICU). Using a quasiexperimental study design and the 24-item Family Satisfaction in the Intensive Care Unit questionnaire (FSICU-24©) to determine family satisfaction, we measured the impact of a "family communication pathway" facilitated by tools built into the electronic health record on the family satisfaction of neurosurgical patients admitted to the ICU. There was no statistically significant difference noted in family satisfaction as determined by FSICU-24 scores, including the Care and Decision Making constructs between the pre- and post-intervention pilot population. The percentage of families reporting the occurrence of a family conference showed only minimal improvement, from 46.5% before to 52.5% following the intervention (p = 0.565). This was mirrored by low numbers of documented family conferences by providers, suggesting poor uptake despite buy-in, use of electronic checklists, and repeated attempts at education. This paper reviews the challenges to and implications for implementing national guidelines in the area of family communication in an ICU coupled with the principles of clinical reengineering.

  12. South Korean Family Caregiver Involvement in Delirium Care: A Qualitative Descriptive Study.

    Science.gov (United States)

    Kang, Yun; Moyle, Wendy; Cooke, Marie; O'Dwyer, Siobhan

    2017-12-01

    The current study aimed to describe the effect of an educational program on RN-initiated efforts to involve family caregivers in delirium care. A descriptive qualitative study was performed. A purposive sample of 12 RNs who participated in a one group, pre-post evaluation of a delirium educational program, and a nominated sample of six family caregivers of patients who had been cared for by RNs in the program participated in individual, in-depth interviews. The qualitative findings indicated that the inclusion of a delirium brochure in ward orientation on admission, with reinforcement during shift changes, and RN-initiated engagement with family caregivers promoted family caregiver involvement in delirium prevention. Further studies in South Korea are needed to determine which family-centered nursing care interventions are culturally appropriate and most effective for RNs and family caregivers in delirium care. [Journal of Gerontological Nursing, 43(12), 44-51.]. Copyright 2017, SLACK Incorporated.

  13. Impact of family history assessment on communication with family members and health care providers: A report from the Family Healthware™ Impact Trial (FHITr).

    Science.gov (United States)

    Wang, Catharine; Sen, Ananda; Plegue, Melissa; Ruffin, Mack T; O'Neill, Suzanne M; Rubinstein, Wendy S; Acheson, Louise S

    2015-08-01

    This study examines the impact of Family Healthware™ on communication behaviors; specifically, communication with family members and health care providers about family health history. A total of 3786 participants were enrolled in the Family Healthware™ Impact Trial (FHITr) in the United States from 2005-7. The trial employed a two-arm cluster-randomized design, with primary care practices serving as the unit of randomization. Using generalized estimating equations (GEE), analyses focused on communication behaviors at 6month follow-up, adjusting for age, site and practice clustering. A significant interaction was observed between study arm and baseline communication status for the family communication outcomes (p'scommunicating at baseline and those who were not. Among participants who were not communicating at baseline, intervention participants had higher odds of communicating with family members about family history risk (OR=1.24, p=0.042) and actively collecting family history information at follow-up (OR=2.67, p=0.026). Family Healthware™ did not have a significant effect on family communication among those already communicating at baseline, or on provider communication, regardless of baseline communication status. Greater communication was observed among those at increased familial risk for a greater number of diseases. Family Healthware™ prompted more communication about family history with family members, among those who were not previously communicating. Efforts are needed to identify approaches to encourage greater sharing of family history information, particularly with health care providers. Copyright © 2015 Elsevier Inc. All rights reserved.

  14. Family conference in palliative care: concept analysis.

    Science.gov (United States)

    Silva, Rudval Souza da; Trindade, Géssica Sodré Sampaio; Paixão, Gilvânia Patrícia do Nascimento; Silva, Maria Júlia Paes da

    2018-01-01

    to analyze the attributes, antecedents and consequents of the family conference concept. Walker and Avante's method for concept analysis and the stages of the integrative review process, with a selection of publications in the PubMed, Cinahl and Lilacs databases focusing on the family conference theme in the context of palliative care. the most cited antecedents were the presence of doubts and the need to define a care plan. Family reunion and working instrument were evidenced as attributes. With respect to consequents, to promote the effective communication and to establish a plan of consensual action were the most remarkable elements. the scarcity of publications on the subject was observed, as well as and the limitation of the empirical studies to the space of intensive therapy. Thus, by analyzing the attributes, antecedents and consequents of the concept it was possible to follow their evolution and to show their efficacy and effectiveness as a therapeutic intervention.

  15. Family perceptions of intensive care unit nurses’ roles: a Greek perspective

    Directory of Open Access Journals (Sweden)

    Maria Malliarou

    2014-01-01

    Full Text Available This study was done in order to examine the role of the nurse in families with critically ill patients as perceived by family members. A descriptive design was conducted with 93 family members aged 18-53 years from a 6-bed intensive care unit in a Greek Hospital. An anonymous self-completed questionnaire recording demographic data and the questionnaire Family members perception of nurses behavioral role expectation/enactment scale of Hickey and Lewandowski was used. Parametric statistic tests were used to examine the research questions. Intensive care unit (ICU patients’ family members expect nurses to make them feel they can ask whatever they want whenever they want, placing great emphasis on communicating with one another and on participating in decision making to the progress of patient care. The age seems to correlate with the expectation from nurse to meet the role of training on how to handle the patient. Nurses did well with regard to meeting family members’ expectations. Most family members assessed positively the role of ICU nurse confirming the need for communication, and clear support of families.

  16. Does public insurance provide better financial protection against rising health care costs for families of children with special health care needs?

    Science.gov (United States)

    Yu, Hao; Dick, Andrew W; Szilagyi, Peter G

    2008-10-01

    Health care costs grew rapidly since 2001, generating substantial economic pressures on families, especially those with children with special health care needs (CSHCN). To examine how the growth of health care costs affected financial burden for families of CSHCN between 2001 and 2004 and to determine the extent to which health insurance coverage protected families of CSHCN against financial burden. In 2001-2004, 5196 families of CSHCN were surveyed by the national Medical Expenditure Panel Survey (MEPS). The main outcome was financial burden, defined as the proportion of family income spent on out-of-pocket (OOP) health care expenditures for all family members, including OOP costs and premiums. Family insurance coverage was classified as: (1) all members publicly insured, (2) all members privately insured, (3) all members uninsured, (4) partial coverage, and (5) a mix of public and private with no uninsured periods. An upward trend in financial burden for families of CSHCN occurred and was associated with growth of economy-wide health care costs. A multivariate analysis indicated that, given the economy-wide increase in medical costs between 2001 and 2004, a family with CSHCN was at increased risk in 2004 for having financial burden exceeding 10% of family income [odds ratio (OR) = 1.39; P financial burden exceeding 20% of family income. Over 15% of families with public insurance had financial burden exceeding 10% of family income compared with 20% of families with private insurance (P financial burden of >10% or 20% of family income than privately-insured families. Rising health care costs increased financial burden on families of CSHCN in 2001-2004. Public insurance coverage provided better financial protection than private insurance against the rapidly rising health care costs for families of CSHCN.

  17. The Experience of Paid Family-Care Workers of People with Dementia in South Korea

    Directory of Open Access Journals (Sweden)

    Jungmin Kim, RN, MN

    2018-03-01

    Full Text Available Purpose: The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of “paid family-care worker” to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. Methods: The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Results: Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Conclusion: Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Keywords: dementia, health personnel, long-term care, Republic of Korea

  18. Family presence during resuscitation: A Canadian Critical Care Society position paper.

    Science.gov (United States)

    Oczkowski, Simon John Walsh; Mazzetti, Ian; Cupido, Cynthia; Fox-Robichaud, Alison E

    2015-01-01

    Recent evidence suggests that patient outcomes are not affected by the offering of family presence during resuscitation (FPDR), and that psychological outcomes are neutral or improved in family members of adult patients. The exclusion of family members from the resuscitation area should, therefore, be reassessed. The present Canadian Critical Care Society position paper is designed to help clinicians and institutions decide whether to incorporate FPDR as part of their routine clinical practice, and to offer strategies to implement FPDR successfully. The authors conducted a literature search of the perspectives of health care providers, patients and families on the topic of FPDR, and considered the relevant ethical values of beneficence, nonmaleficence, autonomy and justice in light of the clinical evidence for FPDR. They reviewed randomized controlled trials and observational studies of FPDR to determine strategies that have been used to screen family members, select appropriate chaperones and educate staff. FPDR is an ethically sound practice in Canada, and may be considered for the families of adult and pediatric patients in the hospital setting. Hospitals that choose to implement FPDR should develop transparent policies regarding which family members are to be offered the opportunity to be present during the resuscitation. Experienced chaperones should accompany and support family members in the resuscitation area. Intensive educational interventions and increasing experience with FPDR are associated with increased support for the practice from health care providers. FPDR should be considered to be an important component of patient and family-centred care.

  19. Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life.

    Science.gov (United States)

    Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A

    2017-12-01

    Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.

  20. The Experience of Paid Family-Care Workers of People with Dementia in South Korea.

    Science.gov (United States)

    Kim, Jungmin; De Bellis, Anita Marie; Xiao, Lily Dongxia

    2018-03-01

    The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of "paid family-care worker" to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Copyright © 2018. Published by Elsevier B.V.

  1. Staff-family relationships in nursing home care: a typology of challenging behaviours.

    Science.gov (United States)

    Bauer, Michael

    2007-09-01

    Aim.  This paper draws on data from a study which investigated how Australian nursing home staff constructed staff-family relationships. Background.  Working with the family in aged care to provide the best care possible is consistent with modern nursing philosophy which espouses holistic care. The quality and enjoyment of the experience however, is frequently fraught with problems and challenges for both the staff and the family involved. Design.  A qualitative constructivist design as described by Guba and Lincoln [Fourth Generation Evaluation. Sage Publications, London.] was used. Method.  Thirty paid caregivers drawn from eight nursing homes were interviewed about their experiences of working with residents' families. A constant comparative method of data analysis was used to arrive at the findings. Results.  This paper reports on seven themes under the category of 'unacceptable behaviours'. These themes describe a range of attitudes and behaviours exhibited by families which staff members found undesirable. Conclusions.  Staff members found a number of family behaviours challenging. Nursing home staff perceives the family as subordinate to their needs and want to retain control of the work environment. Relevance to clinical practice.  Nursing home staff need to move away from custodial models of care focused on 'getting the work done' and develop more family friendly work practices that are inclusive of the needs of the family and view them as equal partners in care.

  2. "Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

    Directory of Open Access Journals (Sweden)

    Nielsen Erik W

    2011-07-01

    Full Text Available Abstract Background An increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation. Methods Using qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults were recruited for 10 in-depth interviews. Results The core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult. Conclusions These findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further.

  3. Health Care Aides' Struggle to Build and Maintain Relationships with Families in Complex Continuing Care Settings

    Science.gov (United States)

    McGilton, Katherine S.; Guruge, Sepali; Librado, Ruby; Bloch, Lois; Boscart, Veronique

    2008-01-01

    Research on the relationships between health care aides (HCAs) and families of clients has been situated mainly in long-term care settings and includes scant findings about the perceptions of HCAs. Based on the findings of a larger qualitative study using a grounded theory approach, this paper addresses the topic of HCA-family relationships in…

  4. Maternity Care Services Provided by Family Physicians in Rural Hospitals.

    Science.gov (United States)

    Young, Richard A

    The purpose of this study was to describe how many rural family physicians (FPs) and other types of providers currently provide maternity care services, and the requirements to obtain privileges. Chief executive officers of rural hospitals were purposively sampled in 15 geographically diverse states with significant rural areas in 2013 to 2014. Questions were asked about the provision of maternity care services, the physicians who perform them, and qualifications required to obtain maternity care privileges. Analysis used descriptive statistics, with comparisons between the states, community rurality, and hospital size. The overall response rate was 51.2% (437/854). Among all identified hospitals, 44.9% provided maternity care services, which varied considerably by state (range, 17-83%; P maternity care, a mean of 271 babies were delivered per year, 27% by cesarean delivery. A mean of 7.0 FPs had privileges in these hospitals, of which 2.8 provided maternity care and 1.8 performed cesarean deliveries. The percentage of FPs who provide maternity care (mean, 48%; range, 10-69%; P maternity care who are FPs (mean, 63%; range, 10-88%; P maternity care services in US rural hospitals, including cesarean deliveries. Some family medicine residencies should continue to train their residents to provide these services to keep replenishing this valuable workforce. © Copyright 2017 by the American Board of Family Medicine.

  5. Resident and family member perceptions of cultural diversity in aged care homes.

    Science.gov (United States)

    Xiao, Lily Dongxia; Willis, Eileen; Harrington, Ann; Gillham, David; De Bellis, Anita; Morey, Wendy; Jeffers, Lesley

    2017-03-01

    Similar to many developed nations, older people living in residential aged care homes in Australia and the staff who care for them have become increasingly multicultural. This cultural diversity adds challenges for residents in adapting to the care home. This study explores: (i) residents' and family members' perceptions about staff and cultural diversity, and (ii) culturally and linguistically diverse residents' and family members' experiences. An interpretive study design employing a thematic analysis was applied. Twenty-three residents and seven family members participated in interviews. Four themes were identified from interpreting residents and family members' perceptions of the impact of cultural diversity on their adaptation to aged care homes: (i) perceiving diversity as an attraction; (ii) adapting to cross-cultural communication; (iii) adjusting to diet in the residential care home; and (iv) anticipating individualized psychosocial interactions. The findings have implications for identifying strategies to support staff from all cultural backgrounds in order to create a caring environment that facilitates positive relationships with residents and supports residents to adjust to the care home. © 2016 John Wiley & Sons Australia, Ltd.

  6. THE CARE OF NURSING TO THE FAMILY: A BIBLIOGRAPHICAL STUDY

    Directory of Open Access Journals (Sweden)

    Claci Fátima Weirich

    2006-12-01

    Full Text Available SUMMARY: The objective of this study was to identify the scientific article about the care of nursing to the family, published in periodic of Brazilian nursing, index-linked article survey to the LILACS, in the period of 1993 the 2003, and to analyze them how much to the concept and composition of the families, systematization and proposals of action of nursing and formation and qualification of the authors. In the results we find in 10 years (1993-2003, 9 publications concerning nursing in family. Where we can find the predominance of works that focus the systematization and proposals of action, evidencing of a general form, a lack of studies in the area of nursing in family, where the Program of Health of the Family appears as principal source of promotion of care of nursing to the family and motivation for studies that approach this thematic one. All research had had as authorship nurses doctors, masters and specialists, which acted as professors. KEY WORDS: Assistance to the Family; Health of the Family and Nursing and Family.

  7. The experiences of Batswana families regarding hospice care of ...

    African Journals Online (AJOL)

    M. F. Makhele & F. M. Mulaudzi * Fhumulani Mavis Mulaudzi is an associate professor and Head of Department at the University of Pretoria. She has published widely on Indigenous knowledge system. She received South African Women in Science award in 2011 for indigenous knowledge system. mavis.mulaudzi@up.ac.za

    2012-06-20

    Jun 20, 2012 ... The Batswana had mixed feelings about hospice care, because their beliefs on patient care .... Family-centred care is a core value of the Batswana. Although ... HIV/AIDS has adversely affected the socio-economic status of many countries ... The construction of these hospices evoked mixed feelings among.

  8. Assessing family planning service-delivery skills in Kenya.

    Science.gov (United States)

    Valadez, J J; Transgrud, R; Mbugua, M; Smith, T

    1997-06-01

    This report demonstrates the use of Lot Quality Assurance Sampling (LQAS) to evaluate the technical competence of two cohorts of family planning service providers in Kenya trained with a new curriculum. One cohort had just finished training within two months of the study. The other cohort was the first group trained with the new curriculum about one year before the study. LQAS was adapted from industrial and other public health applications to assess both the individual competence of 30 service providers and the competence of each cohort. Results show that Cohorts One and Two did not differ markedly in the number of tasks needing improvement. However, both cohorts exhibited more tasks needing improvement in counseling skills as compared with physical examination skills or with all other skills. Care-givers who were not currently providing services accounted for most service-delivery problems. This result suggests that providers' use of their skills explains their ability to retain service-delivery skills learned in training to a greater degree than does the amount of time elapsed since they were trained. LQAS proved to be a rapid, easy-to-use empirical method for management decisionmaking for improvement of a family planning training curriculum and services.

  9. The family child care home environment and children's diet quality.

    Science.gov (United States)

    Benjamin-Neelon, Sara E; Vaughn, Amber E; Tovar, Alison; Østbye, Truls; Mazzucca, Stephanie; Ward, Dianne S

    2018-07-01

    Developing healthy eating behaviors and food preferences in early childhood may help establish future healthy diets. Large numbers of children spend time in child care, but little research has assessed the nutritional quality of meals and snacks in family child care homes. Therefore, it is important to assess foods and beverages provided, policies related to nutrition and feeding children, and interactions between providers and children during mealtimes. We examined associations between the nutrition environments of family child care homes and children's diet quality. We assessed the nutrition environments of 166 family child care homes using the Environment and Policy Assessment and Observation (EPAO) (scores range: 0-21). We also recorded foods and beverages consumed by 496 children in care and calculated healthy eating index (HEI) (scores range: 0-100). We used a mixed effects linear regression model to examine the association between the EPAO nutrition environment (and EPAO sub-scales) and child HEI, controlling for potential confounders. Family child care homes had a mean (standard deviation, SD) of 7.2 (3.6) children in care, 74.1% of providers were black or African American, and children had a mean (SD) age of 35.7 (11.4) months. In adjusted multivariable models, higher EPAO nutrition score was associated with increased child HEI score (1.16; 95% CI: 0.34, 1.98; p = 0.006). Higher scores on EPAO sub-scales for foods provided (8.98; 95% CI: 3.94, 14.01; p = 0.0006), nutrition education (5.37; 95% CI: 0.80, 9.94; p = 0.02), and nutrition policy (2.36; 95% CI: 0.23, 4.49; p = 0.03) were all associated with greater child HEI score. Foods and beverages served, in addition to nutrition education and nutrition policies in family child care homes, may be promising intervention targets for improving child diet quality. Copyright © 2018. Published by Elsevier Ltd.

  10. Reaching common ground: a patient-family-based conceptual framework of quality EOL care.

    Science.gov (United States)

    Howell, Doris; Brazil, Kevin

    2005-01-01

    Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families.

  11. [Family health and infant palliative care: listening the relatives of technology dependent children].

    Science.gov (United States)

    Rabello, Claudia Azevedo Ferreira Guimarães; Rodrigues, Paulo Henrique de Almeida

    2010-10-01

    This study discusses the creation of a new child palliative care program based on the Family Health Program, considering the level of care at home and yielding to family requests. Eighteen members of nine families of technology dependent children (TDC) who were hospital patients in the Instituto Fernandes Figueira (IFF) participated on the study. From those four were being assisted by its palliative care program Programa de Assistência Domiciliar Interdisciplinar (PADI); three were inpatients waiting for inclusion in the program, and finally two inpatients already included in PADI. PADI was chosen because it is the only child palliative care program in Brazil. The results are positive in regards to the connection established between the families and the health care team, the reception of the children, the explanation to the family concerning the disease, and the functional dynamics between the PADI and the IFF. As negative points, difficulties arose as a result of the implementation of the program, from its continuity to the worsening or illness of the entire family. In conclusion, although the PADI is the IFF's way of discharging patients, the domiciliary care provided by the Family Health Program, well articulated with the healthcare system, would be ideal for being the adequate assistance for it.

  12. The high price of depression: Family members' health conditions and health care costs.

    Science.gov (United States)

    Ray, G Thomas; Weisner, Constance M; Taillac, Cosette J; Campbell, Cynthia I

    2017-05-01

    To compare the health conditions and health care costs of family members of patients diagnosed with a Major Depressive Disorder (MDD) to family members of patients without an MDD diagnosis. Using electronic health record data, we identified family members (n=201,914) of adult index patients (n=92,399) diagnosed with MDD between 2009 and 2014 and family members (n=187,011) of matched patients without MDD. Diagnoses, health care utilization and costs were extracted for each family member. Logistic regression and multivariate models were used to compare diagnosed health conditions, health services cost, and utilization of MDD and non-MDD family members. Analyses covered the 5years before and after the index patient's MDD diagnosis. MDD family members were more likely than non-MDD family members to be diagnosed with mood disorders, anxiety, substance use disorder, and numerous other conditions. MDD family members had higher health care costs than non-MDD family members in every period analyzed, with the highest difference being in the year before the index patient's MDD diagnosis. Family members of patients with MDD are more likely to have a number of health conditions compared to non-MDD family members, and to have higher health care cost and utilization. Copyright © 2017. Published by Elsevier Inc.

  13. The Strengthening Families Initiative and Child Care Quality Improvement: How Strengthening Families Influenced Change in Child Care Programs in One State

    Science.gov (United States)

    Douglass, Anne; Klerman, Lorraine

    2012-01-01

    Research Findings: This study investigated how the Strengthening Families through Early Care and Education initiative in Illinois (SFI) influenced change in 4 child care programs. Findings indicate that SFI influenced quality improvements through 4 primary pathways: (a) Learning Networks, (b) the quality of training, (c) the engagement of program…

  14. Family Partner Intervention Influences Self-Care Confidence and Treatment Self-Regulation in Patients with Heart Failure

    Science.gov (United States)

    Stamp, Kelly D.; Dunbar, Sandra B.; Clark, Patricia C.; Reilly, Carolyn M.; Gary, Rebecca A.; Higgins, Melinda; Ryan, Richard M

    2015-01-01

    Background Heart failure self-care requires confidence in one’s ability and motivation to perform a recommended behavior. Most self-care occurs within a family context, yet little is known about the influence of family on heart failure self-care or motivating factors. Aims To examine the association of family functioning and the self-care antecedents of confidence and motivation among heart failure participants and determine if a family partnership intervention would promote higher levels of perceived confidence and treatment self-regulation (motivation) at four and eight months compared to patient-family education or usual care groups. Methods Heart failure patients (N = 117) and a family member were randomized to a family partnership intervention, patient-family education or usual care groups. Measures of patient’s perceived family functioning, confidence, motivation for medications and following a low-sodium diet were analyzed. Data were collected at baseline, four and eight months. Results Family functioning was related to self-care confidence for diet (p=.02) and autonomous motivation for adhering to their medications (p=.05 and diet p=0.2). The family partnership intervention group significantly improved confidence (p=.05) and motivation (medications (p=.004; diet p=.012) at four months whereas patient-family education group and usual care did not change. Conclusion Perceived confidence and motivation for self-care was enhanced by family partnership intervention, regardless of family functioning. Poor family functioning at baseline contributed to lower confidence. Family functioning should be assessed to guide tailored family-patient interventions for better outcomes. PMID:25673525

  15. Family Caregivers’ Social Representations of Death in a Palliative Care Context

    Directory of Open Access Journals (Sweden)

    Sabrina Lessard

    2016-03-01

    Full Text Available The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a losses as different kinds of “deaths,” (b palliative care as a place to negotiate with death, and (c last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as support for the passage into a new state of being. This study provides a better understanding of the common sense of death for family caregivers in a palliative care context and of the meanings of this emotional subject.

  16. A pilot randomized controlled trial of mindfulness-based stress reduction for caregivers of family members with dementia.

    Science.gov (United States)

    Brown, Kirk Warren; Coogle, Constance L; Wegelin, Jacob

    2016-11-01

    The majority of care for those with Alzheimer's disease and other age-related dementias is provided in the home by family members. To date, there is no consistently effective intervention for reducing the significant stress burden of many family caregivers. The present pilot randomized controlled trial tested the efficacy of an adapted, eight-week mindfulness-based stress reduction (MBSR) program, relative to a near structurally equivalent, standard social support (SS) control condition for reducing caregiver stress and enhancing the care giver-recipient relationship. Thirty-eight family caregivers were randomized to MBSR or SS, with measures of diurnal salivary cortisol, and perceived stress, mental health, experiential avoidance, caregiver burden, and relationship quality collected pre- and post-intervention and at three-month follow-up. MBSR participants reported significantly lower levels of perceived stress and mood disturbance at post-intervention relative to SS participants. At three-month follow-up, participants in both treatment conditions reported improvements on several psychosocial outcomes. At follow-up, there were no condition differences on these outcomes, nor did MBSR and SS participants differ in diurnal cortisol response change over the course of the study. Both MBSR and SS showed stress reduction effects, and MBSR showed no sustained neuroendocrine and psychosocial advantages over SS. The lack of treatment condition differences could be attributable to active ingredients in both interventions, and to population-specific and design factors.

  17. FAMILY BEHAVIOR IN MAINTENANCE STATUS HB CHRONIC RENAL FAILURE PATIENTS THROUGH FAMILY CENTERED CARE APPROACH OF DIET FE MANAGEMENT

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    Anggia Fajar Hardianti

    2017-04-01

    Full Text Available Introduction: Erythropoietic agent as standard practice for anemia treatment, which has a function to increase the value of hemoglobin (Hb to 12 g/dl in patients with chronic renal failure (CRF, who receiving dialysis treatment. The use of erythropoietin has to keep of the iron/Fe amount in the body. Family who have a duty of care should have knowledge, attitude, and behavior to maintain patient’s Hb by giving support to the patient to obey the Fe diet. The aimed of this study was to investigate the effect of family centered care approach in management Fe diet toward family’s behaviour in maintenance Hb level of CRF patients in hemodialysis ward, Gambiran Hospital, Kediri. Method: This study was used a pre experimental design. Total sample were 10 respondents, who met to inclusion criteria. The independent variables were knowledge, attitude, and psychomotor of family in maintenance of Hb level in CRF’s patients. The dependent variable was Fe diet management with family centered care approach. Data was collected by using a structured questionnaire and home visit observation. Result: Data was analyzed by using Wilcoxon Sign Rank Test with significance level α≤0.05. Results showed that Fe diet management with family centered care approach took effect to family’s knowledge (p=0.011, family’s attitude (p=0.005 and family’s psychomotor (p=0.005 in maintenance Hb level of CRF patients. Discussion: Family’s knowledge, attitude, and psychomotor were effected by experiences during the care of a patient, not affordable to access information and patient’s own decision. The strengths and weaknesses in the family to got a better plan of care can be made by discuss and sharing among researcher, patient and his family. It can be concluded that Fe diet management with family centered care approach took effect to family’s behaviour. Further studies should involve larger respondents and better measurement tools to obtain more accurate results.

  18. Putting Families in the Center: Family Perspectives on Decision Making and ADHD and Implications for ADHD Care

    Science.gov (United States)

    Davis, Catherine C.; Claudius, Milena; Palinkas, Lawrence A.; Wong, John B.; Leslie, Laurel K.

    2012-01-01

    Objective: To examine components of family-centered care in families' stories about treatment decision making for their child with ADHD. Method: Twenty-eight families participated in qualitative interviews that addressed families' perspectives on (a) the treatment decision-making process, (b) the cause and impact of their child's symptoms, and (c)…

  19. [Young first-time parents' experiences with family-centred postpartal health care in Switzerland].

    Science.gov (United States)

    Kläusler-Troxler, Marianne; Kurth, Elisabeth; Spirig, Rebecca

    2014-08-01

    Routine postnatal care normally addresses only the mother and her child. In Switzerland, counselling for all parents and their children is provided by family nurses in a community-based health care setting. We implemented a new approach to ensure father involvement within the framework of the Calgary Family Assessment (CFAM) and the Calgary Intervention Model CFIM of Wright and Leahey (2013) in the northwest of Switzerland. This qualitative study explored how mothers and fathers experienced the newly developed family-centred consultation. Data collection was performed by means of participant observation and semi- structured interviews with a sample of five first-time parents with healthy neonates. Data were analysed by using content analysis according to Mayring. Mothers and fathers experienced family-centred consultation as effective. They felt more secure and confident "to handle the new situation" and obtained trustful, concrete and professional support to take care of their baby, particularly with regard to breast feeding, crying and sleeping patterns. Fathers felt included into postnatal care from the beginning. Family nursing offers a useful framework for family-centred postnatal health care.

  20. Fundamentación de un diseño metodológico para la evaluación del cuidado informal en enfermos de Alzheimer Basis of a methodological design to the evaluation of informal care of Alzheimer patients

    Directory of Open Access Journals (Sweden)

    Ronald Gallardo Vargas

    2012-06-01

    Full Text Available Cuidar de una persona dependiente, supone tener que hacer frente a las demandas que desbordan las posibilidades del cuidador, si es familiar las consecuencias suelen ser severas. La enfermedad de Alzheimer por su evolución y carácter irreversible puede hacer del enfermo una persona dependiente total. El cuidado en estos casos se considera una situación de estrés, constituyendo uno de los paradigmas para el estudio del estrés crónico. Muchos son los estudios que abordan el malestar del cuidador desde la perspectiva individual sin la precisión en un encuadre teórico. Lo expuesto condujo a la necesidad de fundamentar un diseño metodológico para la evaluación del cuidado informal en enfermos de Alzheimer, a partir del modelo de estrés y afrontamiento adaptado a la situación del cuidado. Lo anterior parte de considerar que los mecanismos que contribuyen a las consecuencias negativas sobre la salud de los cuidadores pueden entenderse mejor desde los modelos relacionales o transaccionales del estrés. Para el cumplimiento del objetivo fueron utilizados métodos teóricos y empíricos, privilegiándose la revisión de la literatura científica en cuanto al tratamiento de los estudios sobre situaciones de cuidado y la figura del cuidador. Se propuso una definición de cuidado informal que facilitó la operacionalización de la variable. Se elaboró un diseño mixto en paralelo. Se eligieron técnicas, algunas de las cuales habían sido elaboradas y/o validadas en estudios sobre cuidadores de enfermos de Alzheimer o situaciones de cuidado. Se obtuvo un diseño viable fundamentado en un modelo teórico coherente con el problema objeto de investigación.Taking care of a dependent person, implies facing the demands that overwhelm the possibilities of the care giver, if the person is a family member, the consequences have a tendency to be severe. In Alzheimer’s disease, due to its natural history and irreversible character, the patient becomes

  1. Playful persuasion to support older adults’ social and physical activities

    NARCIS (Netherlands)

    Romero Herrera, N.A.; Sturm, Janienke; Bekker, M.M.; Valk, de L.C.T.; Kruitwagen, S.

    2010-01-01

    In this paper we describe a case study in which we examine how to develop playful persuasive solutions to motivate older adults to maintain or increase their social and physical activities. By including various stakeholders (older adults, family, and care givers) and by designing for transitions in

  2. Developing a response to family violence in primary health care: the New Zealand experience.

    Science.gov (United States)

    Gear, Claire; Koziol-McLain, Jane; Wilson, Denise; Clark, Faye

    2016-08-20

    Despite primary health care being recognised as an ideal setting to effectively respond to those experiencing family violence, responses are not widely integrated as part of routine health care. A lack of evidence testing models and approaches for health sector integration, alongside challenges of transferability and sustainability, means the best approach in responding to family violence is still unknown. The Primary Health Care Family Violence Responsiveness Evaluation Tool was developed as a guide to implement a formal systems-led response to family violence within New Zealand primary health care settings. Given the difficulties integrating effective, sustainable responses to family violence, we share the experience of primary health care sites that embarked on developing a response to family violence, presenting the enablers, barriers and resources required to maintain, progress and sustain family violence response development. In this qualitative descriptive study data were collected from two sources. Firstly semi-structured focus group interviews were conducted during 24-month follow-up evaluation visits of primary health care sites to capture the enablers, barriers and resources required to maintain, progress and sustain a response to family violence. Secondly the outcomes of a group activity to identify response development barriers and implementation strategies were recorded during a network meeting of primary health care professionals interested in family violence prevention and intervention; findings were triangulated across the two data sources. Four sites, representing three PHOs and four general practices participated in the focus group interviews; 35 delegates from across New Zealand attended the network meeting representing a wider perspective on family violence response development within primary health care. Enablers and barriers to developing a family violence response were identified across four themes: 'Getting started', 'Building effective

  3. Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities.

    Science.gov (United States)

    Zajicek-Farber, Michaela L; Lotrecchiano, Gaetano R; Long, Toby M; Farber, Jon Matthew

    2015-08-01

    Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010-2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants' responses as strengths in the "most of the time" range, and weaknesses in the "never" range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

  4. Exploring family physicians' reasons to continue or discontinue providing intrapartum care: Qualitative descriptive study.

    Science.gov (United States)

    Dove, Marion; Dogba, Maman Joyce; Rodríguez, Charo

    2017-08-01

    To examine the reasons why family physicians continue or discontinue providing intrapartum care in their clinical practice. Qualitative descriptive study. Two hospitals located in a multicultural area of Montreal, Que, in November 2011 to June 2012. Sixteen family physicians who were current or former providers of obstetric care. Data were collected using semistructured qualitative interviews. Thematic analysis was used to analyze the interview transcripts. Three overarching themes that help create understanding of why family doctors continue to provide obstetric care were identified: their attraction, often initiated by role models early in their careers, to practising complete continuity of care and accompanying patients in a special moment in their lives; the personal, family, and organizational pressures experienced while pursuing a family medicine career that includes obstetrics; and their ongoing reflection about continuing to practise obstetrics. The practice of obstetrics was very attractive to family physician participants whether they provided intrapartum care or decided to stop. More professional support and incentives might help keep family doctors practising obstetrics. Copyright© the College of Family Physicians of Canada.

  5. Effectiveness of interventions to improve family-staff relationships in the care of people with dementia in residential aged care: a systematic review protocol.

    Science.gov (United States)

    Nguyen, Mynhi; Pachana, Nancy A; Beattie, Elizabeth; Fielding, Elaine; Ramis, Mary-Anne

    2015-11-01

    The objective of this review is to identify and appraise existing evidence regarding the effectiveness of interventions designed to enhance staff-family relationships for people with dementia living in residential aged care facilities.More specifically, the objectives are to identify the effectiveness of constructive communication, cooperation programs, and practices or strategies to enhance family-staff relationships. The effectiveness of these interventions will be measured by comparing the intervention to no intervention, comparing one intervention with another, or comparing pre- and post-interventions.Specifically the review question is: What are the most effective interventions for improving communication and cooperation to enhance family-staff relationships in residential aged care facilities? In our aging world, dementia is prevalent and is a serious health concern affecting approximately 35.6 million people worldwide. This figure is expected to increase two-fold by 2030 and three-fold by 2050. Although younger-onset dementia is increasingly recognized, dementia is most commonly a disease that affects the elderly. Among those aged 65 to 85, the prevalence of dementia increases exponentially, and doubles with every five-year increase in age.Dementia is defined as a syndrome, commonly chronic or progressive in nature, and caused by a range of brain disorders that affect memory, thinking and the ability to perform activities of daily living. While the rate of progression and manifestation of decline differs, all cases of dementia share a similar trajectory of decline. The progressive decline in cognitive functions and ultimately physical function that these people face affects not only the person with the disease but also their family caregivers and health care staff.The manifestation of dementia presents unique and extreme challenges for the family caregiver. Generally it causes great physical, emotional and social strain because the caregiving process is long

  6. Psychosocial Influences upon the Workforce and Professional Development Participation of Family Child Care Providers

    Science.gov (United States)

    Swartz, Rebecca Anne; Wiley, Angela R.; A. Koziol, Natalie; Magerko, Katherine A.

    2016-01-01

    Background: Family child care is commonly used in the US by families, including by those receiving child care subsidies. Psychosocial influences upon the workforce and professional development participation of family child care providers (FCCPs) have implications for the investment of public dollars that aim to improve quality and stability of…

  7. Filial care and the relationship with the elderly in families of different nationalities.

    Science.gov (United States)

    Faller, Jossiana Wilke; Zilly, Adriana; Alvarez, Angela Maria; Marcon, Sonia Silva

    2017-01-01

    identify how filial care and the relationship with the elderly occur in families of different nationalities. qualitative study carried out in a town on the triple frontier of Paraná, comprising 33 elderly people of five different nationalities, adopting the Symbolic Interactionism and the Grounded Theory as theoretical-methodological strategy. among Lebanese people, the Muslim religion teaches children to obey and respect parents; among French, distant family relationships and institutions for the elderly stand out. Paraguayans hold close family relationships; Chinese people consider filial care as a tacit obligation; Brazilians, in turn, tend to embrace and take care of their parents in old age. family care prevailed, but the traditions of each society lead the actions of that care, demanding health professionals' capacity of recognizing in which context the elderly is inserted.

  8. Mothers’ perceptions of family centred care in neonatal intensive care units

    OpenAIRE

    Finlayson, Kenneth William; Dixon, Annie; Smith, Chris; Dykes, Fiona Clare; Flacking, Renee

    2014-01-01

    Objective\\ud \\ud To explore mothers’ perceptions of family centred care (FCC) in neonatal intensive care units (NICUs) in England.\\ud Design\\ud \\ud The qualitative experiences of 12 mothers from three NICUs in the UK were elicited using individual interviews. A thematic network analysis was conducted on the transcribed interviews\\ud Main outcome measures\\ud \\ud A central global theme supported by a number of organizing themes were developed reflecting the views of the mothers and their experi...

  9. Exploring family-centered care for children living with HIV and AIDS in Nigeria.

    Science.gov (United States)

    Achema, Godwin; Ncama, Busisiwe P

    2016-04-01

    To explored the role of family-centered care in supporting children living with HIV and AIDS in Nigeria. A qualitative research design was adopted for this study with a grounded theory approach. Children aged between 11 and 14 years living with HIV and AIDS, their caregivers, and nurse practitioners working in the HIV clinic were engaged in separate focus group discussions in two hospitals in Nigeria. The findings showed that the value African families place on children plays a significant role in identifying their care needs and providing their basic necessities; hence, people around the sick child tend to make him feel better, as attested by nurse practitioners and caregiver participants. Nurse practitioner participants cited unified families as providing care support and love to the children and the support needed to alleviate their sicknesses. Children participants confirmed that family members/relatives were always at their disposal to provide supportive care in terms of administrating antiretroviral medication as well as other psychological care; although a few participants indicated that disruption in family structures in resource-poor settings, isolation and withdrawal, and deprivation of care due to poverty threatened the care rendered to the children. The study highlighted the value attached to children in the African context as helping family members to identify the care needs of children living with HIV and AIDS; thereby providing succor to alleviate their sicknesses and enhance their quality of life. © 2016 Japan Academy of Nursing Science.

  10. The Importance of play During Childhood: The Lesson for care ...

    African Journals Online (AJOL)

    Lack of knowledge on the importance of play for children has ledparents, care givers and pre-school teachers deny children their rights to play,instead they have placed more emphasis on reading and arithmetic. This paper isbased on literature review, and presents the developmental stages of childhood anddiscusses the ...

  11. Comparative review of family-professional communication: what mental health care can learn from oncology and nursing home care

    NARCIS (Netherlands)

    van de Bovenkamp, H.M.; Trappenburg, M.J.

    2012-01-01

    Because family members take on caring tasks and also suffer as a consequence of the illness of the patient, communication between health-care professionals and family members of the patient is important. This review compares communication practices between these two parties in three different parts

  12. Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

    Science.gov (United States)

    Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

    2014-01-01

    Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

  13. [Effects of Home Care Services Use by Older Adults on Family Caregiver Distress].

    Science.gov (United States)

    Kim, Jiyeon; Kim, Hongsoo

    2016-12-01

    The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.

  14. Food in Foster Families: Care, Communication and Conflict

    Science.gov (United States)

    Rees, Alyson; Holland, Sally; Pithouse, Andrew

    2012-01-01

    This study explores the significance of food and mealtimes in relation to the transition into foster care and the therapeutic settling of the child in a new family. In doing so, we draw upon an in-depth, qualitative case study of 10 experienced foster families in the UK focusing on what helped them to be successful. At the time of the study, there…

  15. Measuring the satisfaction of intensive care unit patient families in Morocco: a regression tree analysis.

    Science.gov (United States)

    Damghi, Nada; Khoudri, Ibtissam; Oualili, Latifa; Abidi, Khalid; Madani, Naoufel; Zeggwagh, Amine Ali; Abouqal, Redouane

    2008-07-01

    Meeting the needs of patients' family members becomes an essential part of responsibilities of intensive care unit physicians. The aim of this study was to evaluate the satisfaction of patients' family members using the Arabic version of the Society of Critical Care Medicine's Family Needs Assessment questionnaire and to assess the predictors of family satisfaction using the classification and regression tree method. The authors conducted a prospective study. This study was conducted at a 12-bed medical intensive care unit in Morocco. Family representatives (n = 194) of consecutive patients with a length of stay >48 hrs were included in the study. Intervention was the Society of Critical Care Medicine's Family Needs Assessment questionnaire. Demographic data for relatives included age, gender, relationship with patients, education level, and intensive care unit commuting time. Clinical data for patients included age, gender, diagnoses, intensive care unit length of stay, Acute Physiology and Chronic Health Evaluation, MacCabe index, Therapeutic Interventioning Scoring System, and mechanical ventilation. The Arabic version of the Society of Critical Care Medicine's Family Needs Assessment questionnaire was administered between the third and fifth days after admission. Of family representatives, 81% declared being satisfied with information provided by physicians, 27% would like more information about the diagnosis, 30% about prognosis, and 45% about treatment. In univariate analysis, family satisfaction (small Society of Critical Care Medicine's Family Needs Assessment questionnaire score) increased with a lower family education level (p = .005), when the information was given by a senior physician (p = .014), and when the Society of Critical Care Medicine's Family Needs Assessment questionnaire was administered by an investigator (p = .002). Multivariate analysis (classification and regression tree) showed that the education level was the predominant factor

  16. A Comparison of Surgery and Family Medicine Residents' Perceptions of Cross-Cultural Care Training of Cross-Cultural Care Training

    Science.gov (United States)

    Jackson, David S; Lin, Susan Y; Park, Elyse R

    2010-01-01

    The need for physicians formally trained to deliver care to diverse patient populations has been widely advocated. Utilizing a validated tool, Weissman and Betancourt's Cross-Cultural Care Survey, the aim of this current study was to compare surgery and family medicine residents' perceptions of their preparedness and skillfulness to provide high quality cross-cultural care. Past research has documented differences between the two groups' reported impressions of importance and level of instruction received in cross-cultural care. Twenty surgery and 15 family medicine residents participated in the study. Significant differences were found between surgery and family medicine residents on most ratings of the amount of training they received in cross-cultural skills. Specifically, family medicine residents reported having received more training on: 1) determining how patients want to be addressed, 2) taking a social history, 3) assessing their understanding of the cause of illness, 4) negotiating their treatment plan, 5) assessing whether they are mistrustful of the health care system and/or doctor, 6) identifying cultural customs, 7) identifying how patients make decisions within the family, and 8) delivering services through a medical interpreter. One unexpected finding was that surgery residents, who reported not receiving much formal cultural training, reported higher mean scores on perceived skillfulness (i.e. ability) than family medicine residents. The disconnect may be linked to the family medicine residents' training in cultural humility — more knowledge and understanding of cross-cultural care can paradoxically lead to perceptions of being less prepared or skillful in this area. PMID:21225585

  17. Cross-cultural communication and use of the family meeting in palliative care.

    Science.gov (United States)

    Sharma, Rashmi K; Dy, Sydney M

    2011-09-01

    Terminally-ill patients and their families often report poor communication and limited understanding of the patient's diagnosis, prognosis, and treatment plan; these deficits can be exacerbated by cross-cultural issues. Although family meetings are frequently recommended to facilitate provider-family communication, a more structured, evidence-based approach to their use may improve outcomes. Drawing on research and guidelines from critical care, palliative care, and cross-cultural communication, we propose a framework for conducting family meetings with consideration for cross-cultural issues.

  18. Veteran family reintegration, primary care needs, and the benefit of the patient-centered medical home model.

    Science.gov (United States)

    Hinojosa, Ramon; Hinojosa, Melanie Sberna; Nelson, Karen; Nelson, David

    2010-01-01

    Men and women returning from the wars in Afghanistan and Iraq face a multitude of difficulties while integrating back into civilian life, but the importance of their veteran status is often overlooked in primary care settings. Family physicians have the potential to be the first line of defense to ensure the well-being of veterans and their families because many will turn to nonmilitary and non-Veterans Affairs providers for health care needs. An awareness of the unique challenges faced by this population is critical to providing care. A patient-centered medical home orientation can help the family physician provide veterans and their families the care they need. Specific recommendations for family physicians include screening their patient population; providing timely care; treating the whole family; and integrating care from multiple disciplines and specialties, providing veterans and families with "one-stop shopping" care. An awareness of the unique challenges faced by veterans and their families translates into better overall outcomes for this population.

  19. Nurses' views of forensic care in emergency departments and their attitudes, and involvement of family members.

    Science.gov (United States)

    Linnarsson, Josefin Rahmqvist; Benzein, Eva; Årestedt, Kristofer

    2015-01-01

    To describe Nurses' views of forensic care provided for victims of violence and their families in EDs, to identify factors associated with Nurses' attitudes towards families in care and to investigate if these attitudes were associated with the involvement of patients' families in care. Interpersonal violence has serious health consequences for individuals and family members. Emergency departments provide care for victims of violence, and nurses play a key role in forensic care. However, there is limited knowledge of their views and their involvement of family members. A cross-sectional design was used with a sample of all registered nurses (n = 867) in 28 emergency departments in Sweden. A self-report questionnaire, including the instrument Families' Importance in Nursing Care - Nurses' Attitudes, was used to collect data. Descriptive statistics, multiple linear regression and ordinal regression were used to analyse data. Four hundred and fifty-seven nurses completed the questionnaire (53%). Most nurses provided forensic care, but few had specific education for this task. Policy documents and routines existed for specific patient groups. Most nurses involved family members in care although education and policy documents rarely included them. Being a woman, policy documents and own experience of a critically ill family member were associated with a positive attitude towards family. A positive attitude towards family members was associated with involving patients' families in care. Many emergency department nurses provided forensic care without having specific education, and policy documents only concerned women and children. Nurses' positive attitude to family members was not reflected in policies or education. These results can inspire clinical forensic care interventions in emergency departments. Educational efforts for nurses and policies for all groups of victims of violence are needed. Emergency departments may need to rethink how family members are included

  20. Association of family-centered care with improved anticipatory guidance delivery and reduced unmet needs in child health care.

    Science.gov (United States)

    Kuo, Dennis Z; Frick, Kevin D; Minkovitz, Cynthia S

    2011-11-01

    Little is known about the association of family-centered care (FCC) with the quality of pediatric primary care. The objectives were to assess (1) associations between family-centered care (FCC), receipt of anticipatory guidance, and unmet need for health care; and (2) whether these associations vary for children with special health care needs (CSHCN). The study, a secondary data analysis of the 2004 Medical Expenditure Panel Survey, used a nationally representative sample of family members of children 0-17 years. We measured receipt of FCC in the last 12 months with a composite score average>3.5 on a 4 point Likert scale from 4 Consumer Assessment of Healthcare Providers and Systems questions. Outcome measures were six anticipatory guidance and six unmet health care service needs items. FCC was reported by 69.6% of family members. One-fifth (22.1%) were CSHCN. Thirty percent of parents reported≥4 of 6 anticipatory guidance topics discussed and 32.5% reported≥1 unmet need. FCC was positively associated with anticipatory guidance for all children (OR=1.45; 95% CI 1.19, 1.76), but no relation was found for CSHCN in stratified analyses (OR=1.01; 95% CI .75, 1.37). FCC was associated with reduced unmet needs (OR=.38; 95% CI .31, .46), with consistent findings for both non-CSHCN and CSHCN subgroups. Family-centered care is associated with greater receipt of anticipatory guidance and reduced unmet needs. The association between FCC and anticipatory guidance did not persist for CSHCN, suggesting the need for enhanced understanding of appropriate anticipatory guidance for this population.

  1. Understanding of advance care planning by family members of persons undergoing hemodialysis.

    Science.gov (United States)

    Calvin, Amy O; Engebretson, Joan C; Sardual, S Alexander

    2014-11-01

    The purpose of this qualitative descriptive study was to explore hemodialysis patients' family members' understanding of end-of-life decision-making processes. The project aimed to address (a) family members' constructions of advance care planning (ACP), including their roles and responsibilities, and (b) family members' perceptions of health care providers' roles and responsibilities in ACP. Eighteen family members of persons undergoing hemodialysis were recruited primarily from outpatient dialysis facilities and interviewed individually. Confirmed transcript data were analyzed, coded, and compared, and categories were established. Interpretations were validated throughout the interviews and peer debriefing sessions were used at a later stage in the analysis. The overarching construct identified was one of Protection. Family members protect patients by (a) Sharing Burdens, (b) Normalizing Life, and (c) Personalizing Care. Recommendations for future research include the need to explore ACP of persons undergoing hemodialysis who do not have a family support system. © The Author(s) 2013.

  2. Interacciones vinculares en el sistema de cuidado infantil

    Directory of Open Access Journals (Sweden)

    María Teresa Moreno- Zavaleta

    2014-05-01

    Full Text Available The study identifies and analyzes the binding interactions existing in the childcare system of children with or without chronic malnutrition in the same context of poverty. This is a multi-method study, based on the field information collected and on a theoretical construction that arose from the results obtained, broadening thus the conceptual framework of child malnutrition. The constellation and management of care are two emerging categories that contribute to understanding the fact that there are different care-givers in the different scenarios where the children are that vary in terms of quality, permanence and coherence and this situation has an impact on their nutritional condition. Although women are the main care-givers, they are not the only people responsible for childcare; therefore, it is recommendable for the family and community support networks to be strengthened.

  3. How busy is my supervisor? Detecting the visits in the office of my supervisor using a sensor network

    NARCIS (Netherlands)

    Nait Aicha, A.; Englebienne, G.; Kröse, B.

    2012-01-01

    Existing research on the recognition of Activities of Daily Living (ADL) from simple sensor networks assumes that only a single person is present in the home. In real life there will be situations where the inhabitant receives visits from family members or professional health care givers. In such

  4. How Busy is my Supervisor? : detecting the visits in the office of my supervisor using a sensor network

    NARCIS (Netherlands)

    Nait Aicha, Ahmed; Englebienne, Gwenn; Kröse, Ben

    2012-01-01

    Existing research on the recognition of Activities of Daily Living (ADL) from simple sensor networks assumes that only a single person is present in the home. In real life there will be situations where the inhabitant receives visits from family members or professional health care givers. In such

  5. Palliative home care: A designer′s perspective

    Directory of Open Access Journals (Sweden)

    Tigmanshu Bhatnagar

    2015-01-01

    Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.

  6. Music therapy in pediatric palliative care: family-centered care to enhance quality of life.

    Science.gov (United States)

    Lindenfelser, Kathryn J; Hense, Cherry; McFerran, Katrina

    2012-05-01

    Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia. An exploratory mixed method design used the qualitative data collected through interviews with parents to interpret results from the PedsQL Family Impact Module of overall parental quality of life. Parents described music therapy as resulting in physical improvements of their child by providing comfort and stimulation. They also valued the positive experiences shared by the family in music therapy sessions that were strength oriented and family centered. This highlighted the physical and communication scales within the PedsQL Family Impact Module, where minimal improvements were achieved in contrast to some strong results suggesting diminished quality of life in cognitive and daily activity domains. Despite the significant challenges faced by parents during this difficult time, parents described many positive experiences in music therapy, and the overall score for half of the parents in the study did not diminish. The value of music therapy as a service that addresses the family-centered agenda of PPC is endorsed by this study.

  7. Family caregivers' views on coordination of care in Huntington's disease

    DEFF Research Database (Denmark)

    Røthing, Merete; Malterud, Kirsti; Frich, Jan C

    2015-01-01

    BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient......'s illness may be unpredictable or not well understood by some of those involved in the treatment and care. AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. METHODS......: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross...

  8. Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

    Science.gov (United States)

    Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

    2013-07-01

    Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

  9. Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study.

    Science.gov (United States)

    Noome, Marijke; Dijkstra, Boukje M; van Leeuwen, Evert; Vloet, Lilian C M

    2016-04-01

    The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking. A phenomenological approach including inductive thematic analysis was used. Twenty-six family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit. Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care. Most family appreciated the nursing EOLC they received, specifically the nursing care given to the patient and themselves. Some topics needed more attention, like information and support for the family. Copyright © 2016 Elsevier Ltd. All rights reserved.

  10. Diabetes, child care, and performance of family functions

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    Ewa Kobos

    2017-03-01

    Full Text Available Introduction : Parents caring for a child with diabetes may experience a burden on both a practical and an emotional level. Aim of the research : Analysis of the correlations between the care burden level and the perceived influence of type 1 diabetes in children on the performance of family functions. Material and methods : The study included 112 caregivers of children with diabetes. The following inclusion criteria were taken into account: full family, direct caregiver of the child, the child’s age 3–16 years, disease duration of at least 6 months, and no chronic diseases in siblings. The study material was collected using an interview questionnaire and the Caregiver Burden Scale. Correlation analysis was performed using the Spearman correlation coefficient. The significance level was defined as p = 0.05. Results : A higher burden level of a caregiver in the individual subscales of the CB Scale was associated with a significant decrease in the intensity of performance of the cultural and social function as well as consumption function, the increased amount of time spent with a sick child, and an increase in parental disagreements. The overall burden level differentiated the performance of the religious function. An increase in the burden level on the overall effort subscale was accompanied by lower interest in sex and less frequent sexual intercourse. The higher level of caregiver burden occurs in families where permanent job income has fallen. The differences were shown in the performance of control-socialisation function due to the sense of burden on the environment subscale. Conclusions : The burden level of a caregiver is important in the perceived influence of the child’s illness on the functioning of the family. Stimulating a caregiver in dealing with the problems that are the consequence of the disease, as well as activating and preparing other family members to participate in the care of a sick child, and financial support may

  11. [Family Health Program and children palliative care: listening the relatives of technology dependent children].

    Science.gov (United States)

    Rabello, Cláudia Azevedo Ferreira Guimarães; Rodrigues, Paulo Henrique de Almeida

    2010-03-01

    This study discusses the creation of a new children palliative care program based on the Family Health Program, considering the level of care at home and yielding to family requests. The study focused on eighteen members of nine families of technology dependent children (TDC) who were hospital patients at Instituto Fernandes Figueira (IFF): four who are being assisted by its palliative care program Programa de Assistência Domiciliar Interdisciplinar (PADI); three who were inpatients waiting for inclusion in the Program, and finally two inpatients already included in PADI. PADI was chosen because it is the only child palliative care program in Brazil. The results are positive in regards to the connection established between the families and the health care team, the reception of the children, the explanation to the family concerning the disease, and the functional dynamics between the PADI and IFF. As negative points, difficulties arose as a result of the implementation of the program, from its continuity to the worsening or illness of the entire family. In conclusion, although the PADI is the IFF's way of discharging patients, the domiciliary cares taken by the Family Health Program, well articulated with the healthcare system, would be ideal for being the adequate assistance for such.

  12. Nursing care of the family before and after a death in the ICU--an exploratory pilot study.

    Science.gov (United States)

    Bloomer, Melissa J; Morphet, Julia; O'Connor, Margaret; Lee, Susan; Griffiths, Debra

    2013-02-01

    This qualitative descriptive study was undertaken in two metropolitan ICUs utilising focus groups to describe the ways in which ICU nurses care for the families of dying patients during and after the death. Participants shared their perspectives on how they care for families, their concerns about care, and detailed the strategies they use to provide timely and person-centred family care. Participants identified that their ICU training was inadequate in equipping them to address the complex care needs of families leading up to and following patient deaths, and they relied on peer mentoring and role-modelling to improve their care. Organisational constraints, practices and pressures impacting on the nurse made 'ideal' family care difficult. They also identified that a lack of access to pastoral care and social work after hours contributed to their concerns about family care. Participants reported that they valued the time nurses spent with families, and the importance of ensuring families spent time with the patient, before and after death. Copyright © 2012 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  13. Family members' informal roles in end-of-life decision making in adult intensive care units.

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    Quinn, Jill R; Schmitt, Madeline; Baggs, Judith Gedney; Norton, Sally A; Dombeck, Mary T; Sellers, Craig R

    2012-01-01

    To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Health care clinicians, patients, and family members. Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient's wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families' decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families' decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

  14. THE CARE OF NURSING TO THE FAMILY: A BIBLIOGRAPHICAL STUDY

    Directory of Open Access Journals (Sweden)

    Klever Souza Silva

    2004-08-01

    Full Text Available The objective of this study was to identify the scientific article about the care of nursing to the family,published in periodic of Brazilian nursing, index-linked article survey to the LILACS, in the period of 1993 the 2003,and to analyze them how much to the concept and composition of the families, systematization and proposals ofaction of nursing and formation and qualification of the authors. In the results we find in 10 years (1993-2003, 9publications concerning nursing in family. Where we can find the predominance of works that focus thesystematization and proposals of action, evidencing of a general form, a lack of studies in the area of nursing infamily, where the Program of Health of the Family appears as principal source of promotion of care of nursing tothe family and motivation for studies that approach this thematic one. All research had had as authorship nursesdoctors, masters and specialists, which acted as professors.

  15. Regulation-Exempt Family Child Care in the Context of Publicly Subsidized Child Care: An Exploratory Study.

    Science.gov (United States)

    Child Care Law Center, San Francisco, CA.

    Whether and how to regulate family child care has been a continuing policy dilemma facing child care advocates, policymakers, child care administrators, and child care regulators over the last 20 years. Insufficient attention has been given to what regulatory and/or non-regulatory methods might be used to ensure that all children, regardless of…

  16. The process of end-of-life care delivery to the families of elderly patients according to the Family Health Strategy.

    Science.gov (United States)

    Silva, Lucía; Poles, Kátia; Baliza, Michelle Freire; dos Santos Ribeiro Silva, Mariana Cristina Lobato; dos Santos, Maiara Rodrigues; Bousso, Regina Szylit

    2013-02-01

    To understand the process of end-of-life care delivery to the families of elderly patients according to a Family Health Strategy (FHS) team, to identify the meanings the team attributes to the experience and to build a theoretical model. Symbolic Interactionism and Grounded Theory were applied. Fourteen professionals working in an FHS located in a country town in the state of São Paulo were interviewed. Through comparative analysis, the core category overcoming challenges to assist the family and the elderly during the dying process was identified, and it was composed of the following sub-processes: Identifying situational problems, Planning a new care strategy, Managing the care and Evaluating the care process. the team faces difficulties to achieve better performance in attending to the biological and emotional needs of families, seeking to ensure dignity to the elderly at the end of their lives and expand access to healthcare.

  17. 29 CFR 825.124 - Needed to care for a family member or covered servicemember.

    Science.gov (United States)

    2010-07-01

    ..., DEPARTMENT OF LABOR OTHER LAWS THE FAMILY AND MEDICAL LEAVE ACT OF 1993 Coverage Under the Family and Medical Leave Act § 825.124 Needed to care for a family member or covered servicemember. (a) The medical... serious health condition, the family member is unable to care for his or her own basic medical, hygienic...

  18. Extending overjustification: the effect of perceived reward-giver intention on response to rewards.

    Science.gov (United States)

    Forehand, M R

    2000-12-01

    The perceived intention model incorporates a new moderator, beliefs about reward-giver intention, into the overjustification paradigm. In 2 simulated shopping studies featuring products paired with promotional rewards, consumers who believed the marketer was promotion focused (reward used to encourage purchase) reported lower purchase intentions and brand attitudes for promoted products after promotion, whereas consumers who believed the marketer was reward focused (promotion used to distribute the reward) showed no attitude change. Promotion-focus beliefs lowered attitudes by heightening the contingency between the promotion and purchase and thereby increasing the perceived causal role of the reward. This effect was contingent on initial behavior--postpromotion attitude change occurred for consumers who actively engaged in product decisions but not for consumers who passively observed the choice sets.

  19. Family care: an exploratory study of experience and expectations among older Chinese immigrants in Australia.

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    Lo, Meihan; Russell, Cherry

    2007-01-01

    Family caregiving in East Asian cultures is traditionally based on the Confucian ethic of filial piety that mandates total, holistic care for elders. While research suggests changes in 'family care' are occurring in Asian countries themselves, remarkably little is known about immigrant Asian families in Australia. The study aimed to explore the experience of 'family care' among Chinese-speaking older people who have migrated to Australia in later life. In-depth interviews were conducted in Cantonese with a convenience sample of five cases, including six older Chinese and analysed inductively for dominant themes. Although no single model of 'family care' emerged, findings reveal significant departures from the norms of filial piety and an overall 'westernisation' of care practices, both in relation to what families actually do for their parents and what the older people themselves expect. Transformation of filial culture has implications for policy, service planning and professional practice. It cannot be assumed that elderly Chinese immigrants' needs are being met through traditional family structures.

  20. The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: a quasi-experimental study.

    Science.gov (United States)

    Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun

    2012-10-01

    Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function

  1. Parental care improves immunity in the seahorse (Hippocampus erectus).

    Science.gov (United States)

    Lin, Tingting; Zhang, Dong; Liu, Xin; Xiao, Dongxue

    2016-11-01

    In the present study, the sexual dimorphism in immune response in the seahorse Hippocampus erectus in which males compete for mates and invest heavily in parental care was assessed. Variability in immunocompetence in virginal seahorses with differing levels of sexual maturity (i.e., immaturity, early maturity and maturity) and with different mating statuses (i.e., virginal, experienced mating failure and experienced mating success) were analyzed by evaluating immune parameters in the plasma. Additionally, ultrastructural characteristics of the inner epithelium of the brood pouch were compared between males that had experienced mating failure and those that had succeeded. Generally, immunity in sexually mature virgin males was greater than in females, and mating competition significantly reduced males' immunity. However, parental care gave males stronger immune and metabolic abilities and resulted in their immunity significantly rebounding after a successful mating. The present study quantitatively clarifies, for the first time, how parental care and mating competition jointly affect immunity. Moreover, previous findings that females display more efficient immune defenses than males in conventional species (i.e., males are as competitor and females as care giver) and that males' immunity is higher than females' in the pipefish (i.e., females are as competitor and males as care giver) in combination with the present results indicate that parental care is a key factor for sexual dimorphism in immunity. The care-giving sex has strong immunity regardless of the sex in charge of mating competition or not. Copyright © 2016 Elsevier Ltd. All rights reserved.

  2. Immigrant Families, Children With Special Health Care Needs, and the Medical Home.

    Science.gov (United States)

    Kan, Kristin; Choi, Hwajung; Davis, Matthew

    2016-01-01

    Immigrant children in the United States historically experience lower-quality health care. Such disparities areconcerning for immigrant children with special health care needs (CSHCNs). Our study assesses the medical home presence for CSHCN by immigrant family type and evaluates which medical home components are associated with disparities. We used the 2011 National Survey of Children's Health, comparing the prevalence and odds of a parent-reported medical home and 5 specific medical home components by immigrant family types using bivariate and multivariate logistic regression. Foreign-born CSHCNs were less likely than CSHCNs with US-born parents to have a medical home (adjusted odds ratio = 0.40, 95% confidence interval 0.19-0.85). The adjusted prevalence of having a medical home was 28% among foreign-born CSHCNs (P special needs also had a lower odds of a medical home, compared with children with US-born parents (adjusted odds ratio = 0.62, 0.46-0.83). The medical home component most frequently absent for immigrant children without special needs and CSHCNs with a foreign-born parent was family-centered care. In contrast, foreign-born CSHCNs most often lacked care coordination (adjusted prevalence = 37% versus 56% for CSHCNs with US-born parents; P < .05). Disparities in medical home presence for CSHCNs appear to be exacerbated by immigrant family type. Efforts focused on improving family-centered care and care coordination may provide the greatest benefit for immigrant CSHCNs. Copyright © 2016 by the American Academy of Pediatrics.

  3. Care management actions in the Family Health Strategy

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    Marcelo Costa Fernandes

    2015-11-01

    Full Text Available Objective: to identify, from nurses’ speeches, the actions that enable care management in the Family Health Strategy.Methods: descriptive study with a qualitative approach conducted with 32 nurses of primary care. It was used a semistructuredinterview as the data collection technique. The methodological process of the collective subject discourse wasused to organize the data Results: from the nurses’ speeches one identified the categories: complementary relationshipbetween care and management; meeting with community health agents, a care management strategy in nurses’ work;health education activities such as a care management action and a health information system as an essential tool forcare Conclusion: it was possible to observe that nurses understood the importance of coordination and complementaritybetween the activities of the working process of care and management.

  4. Family caregivers' health in connection with providing care.

    Science.gov (United States)

    Erlingsson, Christen L; Magnusson, Lennart; Hanson, Elizabeth

    2012-05-01

    Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration-and a main interpretation and conceptual model of Swedish family caregivers' health-caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers' beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers' beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers' health.

  5. The Fit Family Challenge: A Primary Care Childhood Obesity Pilot Intervention.

    Science.gov (United States)

    Jortberg, Bonnie T; Rosen, Raquel; Roth, Sarah; Casias, Luke; Dickinson, L Miriam; Coombs, Letoynia; Awadallah, Nida S; Bernardy, Meaghann K; Dickinson, W Perry

    2016-01-01

    Childhood obesity has increased dramatically over several decades, and the American Academy of Pediatrics has recommended primary care practices as ideal sites for the identification, education, and implementation of therapeutic interventions. The objective of this study was to describe the implementation and results for the Fit Family Challenge (FFC), a primary care-based childhood obesity intervention. A single-intervention pilot project that trains primary care practices on childhood obesity guidelines and implementation of a family-focused behavior modification curriculum. A total of 29 family medicine and pediatric community practices in Colorado participated. Participants included 290 patients, aged 6 to 12 years, with a body mass index (BMI) above the 85th percentile. The main outcome measure included the feasibility of implementation of a childhood obesity program in primary care; secondary outcomes were changes in BMI percentile, BMI z-scores, blood pressure, and changes in lifestyle factors related to childhood obesity. Implementation of FFC is feasible, statically significant changes were seen for decreases in BMI percentile and BMI z-scores for participants who completed 9 to 15 months of follow-up; lifestyle factors related to childhood obesity in proved Spanish-speaking families and food insecurity were associated with less follow-up time (P childhood obesity intervention may result in significant clinical and lifestyle changes. © Copyright 2016 by the American Board of Family Medicine.

  6. Improving family medicine resident training in dementia care: an experiential learning opportunity in Primary Care Collaborative Memory Clinics.

    Science.gov (United States)

    Lee, Linda; Weston, W Wayne; Hillier, Loretta; Archibald, Douglas; Lee, Joseph

    2018-06-21

    Family physicians often find themselves inadequately prepared to manage dementia. This article describes the curriculum for a resident training intervention in Primary Care Collaborative Memory Clinics (PCCMC), outlines its underlying educational principles, and examines its impact on residents' ability to provide dementia care. PCCMCs are family physician-led interprofessional clinic teams that provide evidence-informed comprehensive assessment and management of memory concerns. Within PCCMCs residents learn to apply a structured approach to assessment, diagnosis, and management; training consists of a tutorial covering various topics related to dementia followed by work-based learning within the clinic. Significantly more residents who trained in PCCMCs (sample = 98), as compared to those in usual training programs (sample = 35), reported positive changes in knowledge, ability, and confidence in ability to assess and manage memory problems. The PCCMC training intervention for family medicine residents provides a significant opportunity for residents to learn about best clinical practices and interprofessional care needed for optimal dementia care integrated within primary care practice.

  7. Family medicine’s rapid establishment and early leadership role in Qatar’s health care system

    Directory of Open Access Journals (Sweden)

    Verjee MA

    2013-08-01

    Full Text Available Mohamud A Verjee,1 Mariam Ali Abdulmalik,2 Michael D Fetters31Department of Medical Education, Weill Cornell Medical College in Qatar, Qatar Foundation – Education City, Doha, Qatar; 2Primary Health Care Corporation, Doha, Qatar; 3Department of Family Medicine, University of Michigan, Michigan, USAAbstract: Family medicine is a focus of health care in Qatar, and it has emerged as a primary care pioneer in the Arabian Gulf Region. Strong governmental financial support has underpinned family medicine development in the country, and through proactive health care policy, free or highly affordable health care is available to all citizens and expatriates in primary health care centers and hospitals. An Ivy League and world-class medical school, Weill Cornell Medical College in New York established a second campus in Qatar in 2001, and enrolled its first students in 2002. The inaugural class graduated in 2008, including one graduate who matched to a family medicine residency in the United States. The College has already earned a reputation for an emphasis on cultural sensitivity in the curriculum. Qatar also has a well-established family medicine residency program overseen by the Primary Health Care Corporation. Its inaugural class of family medicine residents began training in 1995 and graduated in 1999. In contrast to a trend of fluctuating interest in family medicine training in many developed countries, the demand for residency slots in Qatar has been consistently high. Since November 2012, the Accreditation Council for Graduate Medical Education-International has approved all hospital-based residency positions. Formed in 2012, the Primary Health Care Corporation is dedicated to achieving accreditation for the family medicine residency in the near future. In 2011, Qatar’s 147 family physicians comprised about 18% of the total physician workforce. Through extended hours of operation at health centers, patients have ready access for acute care

  8. Specialized family care for children with developmental disabilities: the Finnish experience.

    Science.gov (United States)

    Szymanski, L S; Seppala, H T

    1995-01-01

    This article describes features of Finland's specialized family care for children with disabilities, including professionalization and training of foster parents and the establishment of municipal employee-like status for them, long-term placements, and the preservation of relationships with biological families whenever possible. A case example of a 12-year-old child with mental retardation and autistic disorder who is in specialized care is included.

  9. Family focused grief therapy: The therapy of choice in palliative care

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    Klikovac Tamara

    2017-01-01

    Full Text Available Palliative care refers to offering physical, psychosocial and spiritual care to patients who are suffering from life threatening diseases. It also includes providing psychological support for family members and other close relations during the period of illness (anticipatory grief and in the period of bereavement and mourning after the patient's death. The choice of therapy during the process of bereavement and mourning is Family Focused Grief Therapy (FFGT. FFGT is a brief, focused and time-limited psychotherapeutic model of intervention belonging to family psychotherapy which is specified for the families that face a life threatening disease of a family member. FFGT, with some modifications, can be applied in work with the families who are facing a terminal illness of younger family members - a child or an adolescent. FFGT typically comprises of 7 to 9 sessions lasting for 90 minutes, which are arranged flexibly across 9 to 18 months, depending on the needs of each family individually. It is important to emphasize that the frequency and number of sessions in each phase depend on the specific features and needs of each particular family. The intervention aim of FFGT is to prevent the complications of bereavement by enhancing the functioning of the family, through exploration of its cohesion, communications (of thoughts and feelings, and handling of conflict. The story of illness and the related grief is shared in the process. The creator of this model is Dr David Kissane, a psychiatrist and a family psychotherapist from Melbourne, Australia, who also worked at the Memorial Sloan Kettering Cancer Centre in New York. The main aims of this article are, on the one hand, to introduce this very useful model of the family therapy to the professional community in Serbia and, on the other, to introduce a conceptual and practical frame of palliative care.

  10. Viewpoints of the members of the workers' retirement centers in Tehran about elderly day care centers (2012

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    Hosein Rohani

    2014-02-01

    Full Text Available Background: There is no documented evidence regarding elderly day care centers in Iran. This needs analysis study was conducted to investigate the demand for elderly day care centers in Tehran. Methods: This cross-sectional study was conducted recruiting 210 participants aged over 60 who were members of the elderly retirement centers in Tehran in 2012. Data were gathered by Kansas state university questionnaire and analyzed using Mann-Whitney and Kruskal-Wallis tests. Results: About 80% of participants were men with the mean age of 67.5±5.23 years. Results showed that male (P<0.001, married (P=0.01 and literate elderly (P<0.001, and those living in rental homes (P<0.001 expressed a greater need for elderly day care centers. There was no statistically significant relationship between the lifestyle (P=0.051 and income (P=0.08 of the participants and demand for elderly day care centers. Conclusion: Given the rising population of the elderly and their high demand for day care centers, it is necessary to establish well-equipped day care centers for this group of people. Also, these centers may reduce the burden of care for the aged people on public services and family care givers.

  11. Network and social support in family care of children with diabetes.

    Science.gov (United States)

    Pennafort, Viviane Peixoto Dos Santos; Queiroz, Maria Veraci Oliveira; Nascimento, Lucila Castanheira; Guedes, Maria Vilani Cavalcante

    2016-01-01

    to understand the influence of network and social support in the care of a child with type 1 diabetes. qualitative study, with assumptions of ethnonursing, conducted in a reference service specialized in the treatment of diabetes, in 2014, in the city of Fortaleza, state of Ceará, Brazil. Twenty-six members of the family and their respective school children participated in the study. The process of collection and analysis followed the observation-participation-reflection model. the analytical categories showed that the social network in the care of children with diabetes helped sharing of information and experiences, moments of relaxation and aid in the acquisition of supplies for treatment, with positive repercussions in the family context, generating well-being and confidence in the care of children with diabetes. the cultural care provided by nurses strengthens the network and social support because it encourages autonomy in the promotion of the quality of life of children with type 1 diabetes and their families.

  12. Information sharing with rural family caregivers during care transitions of hip fracture patients

    Directory of Open Access Journals (Sweden)

    Jacobi Elliott

    2014-06-01

    Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers.Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24.Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting.Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.

  13. Information sharing with rural family caregivers during care transitions of hip fracture patients

    Directory of Open Access Journals (Sweden)

    Jacobi Elliott

    2014-06-01

    Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers. Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24. Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting. Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.

  14. Maternity care and maternal serum screening. Do male and female family physicians care for women differently?

    Science.gov (United States)

    Woodward, C A; Carroll, J C; Ryan, G; Reid, A J; Permaul-Woods, J A; Arbitman, S; Domb, S B; Fallis, B; Kilthei, J

    1997-06-01

    To examine whether male and female family physicians practise maternity care differently, particularly regarding the maternal serum screening (MSS) program. Mailed survey fielded between October 1994 and March 1995. Ontario family practices. Random sample of 2000 members of the College of Family Physicians of Canada who care for pregnant women. More than 90% of eligible physicians responded. Attitudes toward, knowledge about, and behaviour toward MSS. Women physicians were more likely than men to practise part time, in groups, and in larger communities. Men physicians were more likely to perform deliveries; women were more likely to do shared care. Despite a shorter work week, on average, female physicians cared for more pregnant women than male physicians did. Among those providing intrapartum care, women performed more deliveries, on average, than men. Women physicians were more likely than men to offer MSS to all pregnant patients. Although average time spent discussing MSS before the test was similar, women physicians had better knowledge of when best to do the test and its true-positive rate. All differences reported were statistically significant (P women, women physicians cared for more pregnant women than men did. Both spent similar time discussing MSS with their patients before offering screening, but more women physicians offered MSS to all their patients and were more knowledgeable about MSS than men physicians.

  15. Birth Family Contact for Children in Care: How Much? How Often? Who with?

    Science.gov (United States)

    Atwool, Nicola

    2013-01-01

    Irrespective of type of placement, contact with the birth family is one of the more contentious issues in decision-making for children in care. Despite widespread belief that contact with the birth family is beneficial for children and young people in care, this aspect of children's care experience has not received a great deal of attention. In…

  16. Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

    Science.gov (United States)

    Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George

    2018-03-01

    In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

  17. Engaging with Families Is a Challenge: Beliefs among Healthcare Professionals in Forensic Psychiatric Care

    Science.gov (United States)

    Hörberg, Ulrica; Erlingsson, Christen; Syrén, Susanne

    2015-01-01

    Being healthcare professionals in the complex field of forensic psychiatry care (FPC) seems particularly challenging. Historically, families have almost been invisible in FPC. The aim of this study was to uncover beliefs among healthcare professionals concerning families of patients admitted for FPC. Using a hermeneutical approach inspired by Gadamer's philosophy, group interviews with healthcare professionals in four Swedish forensic psychiatric clinics were analyzed. Analysis resulted in seven key beliefs. There were three beliefs about families: family belongingness is a resource for the patient; most families are broken and not possible to trust; and most families get in the way of the patient's care. Four beliefs concerned encounters with families: it is important to achieve a balance and control over the family; it is essential to set aside one's own values and morals; family-oriented work is an impossible mission; and family oriented work requires welcoming the families. Despite ethical dilemmas of working with families in FPC, healthcare professionals showed a willingness and desire to work in a more family-oriented manner. More knowledge, understanding, and caring tools are needed in order to meet the needs of the family as well as support the family's resources. PMID:26448874

  18. The Untapped Potential of Patient and Family Engagement in the Organization of Critical Care.

    Science.gov (United States)

    Haines, Kimberley J; Kelly, Phillipa; Fitzgerald, Peter; Skinner, Elizabeth H; Iwashyna, Theodore J

    2017-05-01

    There is growing interest in patient and family participation in critical care-not just as part of the bedside, but as part of educational and management organization and infrastructure. This offers tremendous opportunities for change but carries risk to patients, families, and the institution. The objective is to provide a concise definitive review of patient and family organizational participation in critical care as a high-risk population and other vulnerable groups. A pragmatic, codesigned model for critical care is offered as a suggested approach for clinicians, researchers, and policy-makers. To inform this review, a systematic search of Ovid Medline, PubMed, and Embase was undertaken in April 2016 using the MeSH terms: patient participation and critical care. A second search was undertaken in PubMed using the terms: patient participation and organizational models to search for other examples of engagement in vulnerable populations. We explicitly did not seek to include discussions of bedside patient-family engagement or shared decision-making. Two reviewers screened citations independently. Included studies either actively partnered with patients and families or described a model of engagement in critical care and other vulnerable populations. Data or description of how patient and family engagement occurred and/or description of model were extracted into a standardized form. There was limited evidence of patient and family engagement in critical care although key recommendations can be drawn from included studies. Patient and family engagement is occurring in other vulnerable populations although there are few described models and none which address issues of risk. A model of patient and family engagement in critical care does not exist, and we propose a pragmatic, codesigned model that takes into account issues of psychologic safety in this population. Significant opportunity exists to document processes of engagement that reflect a changing paradigm of

  19. Health care professionals' concerns regarding in-hospital family-witnessed cardiopulmonary resuscitation implementation into clinical practice.

    Science.gov (United States)

    Sak-Dankosky, Natalia; Andruszkiewicz, Paweł; Sherwood, Paula R; Kvist, Tarja

    2018-05-01

    In-hospital, family-witnessed cardiopulmonary resuscitation of adults has been found to help patients' family members deal with the short- and long-term emotional consequences of resuscitation. Because of its benefits, many national and international nursing and medical organizations officially recommend this practice. Research, however, shows that family-witnessed resuscitation is not widely implemented in clinical practice, and health care professionals generally do not favour this recommendation. To describe and provide an initial basis for understanding health care professionals' views and perspectives regarding the implementation of an in-hospital, family-witnessed adult resuscitation practice in two European countries. An inductive qualitative approach was used in this study. Finnish (n = 93) and Polish (n = 75) emergency and intensive care nurses and physicians provided written responses to queries regarding their personal observations, concerns and comments about in-hospital, family-witnessed resuscitation of an adult. Data were analysed using inductive thematic analysis. The study analysis yielded five themes characterizing health care professionals' main concerns regarding family-witnessed resuscitation: (1) family's horror, (2) disturbed workflow (3) no support for the family, (4) staff preparation and (5) situation-based decision. Despite existing evidence revealing the positive influence of family-witnessed resuscitation on patients, relatives and cardiopulmonary resuscitation process, Finnish and Polish health care providers cited a number of personal and organizational barriers against this practice. The results of this study begin to examine reasons why family-witnessed resuscitation has not been widely implemented in practice. In order to successfully apply current evidence-based resuscitation guidelines, provider concerns need to be addressed through educational and organizational changes. This study identified important implementation

  20. How Much Time Do Families Spend on the Health Care of Children with Diabetes?

    Science.gov (United States)

    Miller, Jane E; Nugent, Colleen N; Russell, Louise B

    2016-09-01

    Family time caring for children with diabetes is an overlooked component of the overall burden of the condition. We document and analyze risk factors for time family members spend providing health care at home and arranging/coordinating health care for children with diabetes. Data for 755 diabetic children and 16,161 non-diabetic children whose chronic conditions required only prescription (Rx) medication were from the 2009-2010 United States National Survey of Children with Special Health Care Needs (NS-CSHCN). We used generalized ordered logistic regressions to estimate adjusted odds ratios (AORs) of time burden by diabetes, insulin use, and stability of the child's health care needs, controlling for health and socioeconomic status. Nearly one-quarter of diabetic children had family members who spent 11+ h/week providing health care at home, and 8% spent 11+ h/week arranging/coordinating care, compared with 3.3% and 1.9%, respectively, of non-diabetic Rx-only children. Time providing care at home for insulin-using children was concentrated in the higher time categories: AORs for insulin-using diabetic compared to non-diabetic Rx-only children were 4.4 for 1+ h/week compared with less pronounced for non-insulin-using children. AORs for arranging/coordinating care did not vary by time contrast: AOR = 4.2 for insulin-using, 3.0 for non-insulin-using children. Health care providers, school personnel, and policymakers need to work with family members to improve care coordination and identify other ways to reduce family time burdens caring for children with diabetes.

  1. [The refusal of nursing care by the families].

    Science.gov (United States)

    Curchod, Claude; Fisher, Marion

    2016-10-01

    Caregiving is complex. While it is not easy to admit that the process can be refused by the patient, it is no easier when it is refused by the patient's family. Accepting this fact is however an essential stage in the relational and care processes. The family must therefore be supported by professionals in order to be able to make an enlightened choice. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

  2. Lived Experiences of the Caregivers of Infants about Family-Centered Care in the Neonatal Intensive Care Unit: A Phenomenological Study

    Directory of Open Access Journals (Sweden)

    Zahra Hadian Shirazi

    2018-03-01

    Conclusion: According the results, FCC is a dynamic care intervention, which is established through purposeful interactions between heterogeneous group members (professional and familial caregivers in order to achieve care goals and create balance in all caregivers. Moreover, the approach enables familial caregivers to play their role efficiently. Application of this comprehensive care requires the attention of healthcare policymakers and managers to provide the proper context for optimal care provision in the NICU.

  3. How Medicaid Expansion Affected Out-of-Pocket Health Care Spending for Low-Income Families.

    Science.gov (United States)

    Glied, Sherry; Chakraborty, Ougni; Russo, Therese

    2017-08-01

    ISSUE. Prior research shows that low-income residents of states that expanded Medicaid under the Affordable Care Act are less likely to experience financial barriers to health care access, but the impact on out-of-pocket spending has not yet been measured. GOAL. Assess how the Medicaid expansion affected out-of-pocket health care spending for low-income families compared to those in states that did not expand and consider whether effects differed in states that expanded under conventional Medicaid rules vs. waiver programs. METHODS. Analysis of the Consumer Expenditure Survey 2010–2015. KEY FINDINGS AND CONCLUSIONS. Compared to families in nonexpansion states, low-income families in states that did expand Medicaid saved an average of $382 in annual spending on health care. In these states, low-income families were less like to report any out-of-pocket spending on insurance premiums or medical care than were similar families in nonexpansion states. For families that did have some out-of-pocket spending, spending levels were lower in states that expanded Medicaid. Low-income families in Medicaid expansion states were also much less likely to have catastrophically high spending levels. The form of coverage expansion — conventional Medicaid or waiver rules — did not have a statistically significant effect on these outcomes.

  4. Family Day Care in Australia: A Systematic Review of Research (1996-2010)

    Science.gov (United States)

    Bohanna, India; Davis, Elise; Corr, Lara; Priest, Naomi; Tan, Huong

    2012-01-01

    Family Day Care (FDC) is a distinctive form of child care chosen by many Australian families. However, there appears to be little empirical research on FDC conducted in Australia. The aim of this study was to systematically review the recent published literature on FDC research in Australia, assess its quality, and identify pertinent topics for…

  5. Family Medicine Panel Size with Care Teams: Impact on Quality.

    Science.gov (United States)

    Angstman, Kurt B; Horn, Jennifer L; Bernard, Matthew E; Kresin, Molly M; Klavetter, Eric W; Maxson, Julie; Willis, Floyd B; Grover, Michael L; Bryan, Michael J; Thacher, Tom D

    2016-01-01

    The demand for comprehensive primary health care continues to expand. The development of team-based practice allows for improved capacity within a collective, collaborative environment. Our hypothesis was to determine the relationship between panel size and access, quality, patient satisfaction, and cost in a large family medicine group practice using a team-based care model. Data were retrospectively collected from 36 family physicians and included total panel size of patients, percentage of time spent on patient care, cost of care, access metrics, diabetic quality metrics, patient satisfaction surveys, and patient care complexity scores. We used linear regression analysis to assess the relationship between adjusted physician panel size, panel complexity, and outcomes. The third available appointments (P size. Patient satisfaction, cost, and percentage fill rate were not affected by panel size. A physician-adjusted panel size larger than the current mean (2959 patients) was associated with a greater likelihood of poor-quality rankings (≤25th percentile) compared with those with a less than average panel size (odds ratio [OR], 7.61; 95% confidence interval [CI], 1.13-51.46). Increased panel size was associated with a longer time to the third available appointment (OR, 10.9; 95% CI, 1.36-87.26) compared with physicians with panel sizes smaller than the mean. We demonstrated a negative impact of larger panel size on diabetic quality results and available appointment access. Evaluation of a family medicine practice parameters while controlling for panel size and patient complexity may help determine the optimal panel size for a practice. © Copyright 2016 by the American Board of Family Medicine.

  6. [Study of the work and of working in Family Health Care Support Center].

    Science.gov (United States)

    Lancman, Selma; Gonçalves, Rita Maria de Abreu; Cordone, Nicole Guimarães; Barros, Juliana de Oliveira

    2013-10-01

    To understand the organization of and the working conditions in family health care support centers, as well as subjective experiences related to work in two of these centers. This was a case study carried out during 2011 and 2012 in two family health care support centers in Sao Paulo, Southeastern Brazil. Data were collected and analyzed using two theoretical-methodological references from ergonomics and work psychodynamics influenced, respectively, by ergonomic work analysis, developed based on open observations of a variety of tasks and on interviews and in practice in work psychodynamics, carried out using think tanks about the work. The work of the Family Health Care Support Centers in question is constituted on the bases of complex, diversified actions to be shared among the various professionals and teams involved. Innovative technological tools, which are not often adopted by primary health care professionals, are used and the parameters and productivity measures do not encompass the specificity and the complexity of the work performed. These situations require constant organizational rearrangement, especially between the Family Health Care Support Centers and the Family Health Care Teams, causing difficulties in carrying out the work as well as in constituting the identity of the professionals studied. The study attempts to lend greater visibility to the work processes at the Family Health Care Support Centers in order to contribute to advances in public policy on primary healthcare. It is important to stress that introducing changes at work, which affect both its organization and work conditions, is above all a commitment, which to be effective, must be permanent and must involve the different levels of hierarchy.

  7. Religious care required for Japanese terminally ill patients with cancer from the perspective of bereaved family members.

    Science.gov (United States)

    Okamoto, Takuya; Ando, Michiyo; Morita, Tatsuya; Hirai, Kei; Kawamura, Ryo; Mitsunori, Miyashita; Sato, Kazuki; Shima, Yasuo

    2010-02-01

    The aim of this study was to explore the most suitable religious care for Japanese terminally ill patients with cancer based on the opinions of bereaved family members. A multicenter questionnaire survey on palliative care service was sent to 592 bereaved family members of patients with cancer who were admitted to palliative care units in Japan, and 430 responded by mail. In the section of the questionnaire about religious care, 382 responses were used for quantitative analysis, and 71 responses about religious care for qualitative analysis. In the current study, the 71 responses were grouped into families with and without a religion and were analyzed qualitatively. Families with a religion (N = 28) chose answers such as ''Instrumental care'' such as music or a religious event, ''Freedom of choice of kinds for religious care,'' ''Staff involvement of religious care,'' ''Meeting with a pastoral care workers,'' and ''Burden of offering a different kind of personal religion.'' In contrast, families without a religion (N = 44) chose answers such as ''Instrumental care,'' ''Freedom of choice whether patients receive religious care or not,'' ''Spiritual care,'' ''Not being able to accept religious care,'' and ''Burden of thinking about a religion and nuisance.'' These findings suggest that Japanese bereaved families with a religion generally regard religious care positively and prefer care through their own religion, whereas some families without a religion require religious care but some do not prefer it.

  8. Awareness of treatment history in family and friends, and mental health care seeking propensity.

    Science.gov (United States)

    Thériault, François L; Colman, Ian

    2017-04-01

    Many adults suffering from mental disorders never receive the care they need. The role of family and friends in overcoming mental health treatment barriers is poorly understood. We investigated the association between awareness of lifetime mental health treatment history in one's family or friends, and likelihood of having recently received mental health care for oneself. Using Canadian Community Health Survey 2012-Mental Health data, we defined care seekers as individuals who talked about mental health issues to at least one health professional in the past 12 months. Seekers were matched to non-seekers based on estimated care seeking propensity, and 1933 matched pairs were created. Reported awareness of lifetime treatment history in family and friends was compared between seekers and non-seekers. There were no differences in the distribution of any confounder of interest between seekers and non-seekers. 73% of seekers were aware of treatment history in family or friends, compared to only 56% of non-seekers (RR 1.3; 95% CI 1.2, 1.3). Awareness of treatment history in family members had nearly identical associations with care seeking as awareness of treatment history in friends. We have found a social clustering of mental health care seeking behavior; individuals who were aware of lifetime treatment history in family or friends were more likely to have recently sought care for themselves. These novel results are consistent with a social learning model of care seeking behavior, and could inform efforts to bridge the current mental health treatment gap.

  9. Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review.

    Science.gov (United States)

    Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn

    2016-09-01

    The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost

  10. Antenatal care visits' absenteeism at a secondary care medical facility in Southwest Nigeria.

    Science.gov (United States)

    Oloko, Olakunle; Ogunbode, Olayinka Oladunjoye; Roberts, Olumuyiwa; Arowojolu, Ayodele Olatunji

    2016-11-01

    Antenatal care (ANC) is a specialised pattern of care organised for pregnant women with the goal of maintaining good health and promoting safe delivery of healthy infants. It is an indispensable part of effective maternity care services. This study identified the factors responsible for absenteeism from ANC follow-up visits. It was a hospital-based prospective cross-sectional descriptive study conducted at a faith based secondary healthcare facility in Ibadan, Nigeria. Relevant data were retrieved using interviewer-administered structured questionnaires and antenatal health record cards. The major reasons identified for absenteeism were delay in receiving hospital services due to long queues at service points and understaffing. The pregnant women aged 35 years and above were the most likely to miss the visits. Therefore, there is the need for hospital administrators and health care givers to make the services patient-friendly.

  11. Constructive staff-family relationships in the care of older adults in the institutional setting: A systematic review.

    Science.gov (United States)

    Haesler, Emily; Bauer, Michael; Nay, Rhonda

    2004-01-01

    Modern health care philosophy espouses the virtues of holistic care and acknowledges that family involvement is appropriate and something to be encouraged due to the role it plays in physical and emotional healing. In the aged care sector, the involvement of families is a strong guarantee of a resident's wellbeing. The important role family plays in the support and care of the older adult in the residential aged care environment has been enshrined in the Australian Commonwealth Charter of Residents' Rights and Responsibilities and the Aged Care Standards of Practice. Despite wide acknowledgement of the importance of family imvolvement in the health care of the older adult, many barriers to the implementation of participatory family care have been identified in past research. For older adults in the health care environment to benefit from the involvement of their family members, health care professionals need an understanding of the issues surrounding family presence in the health care environement and the strategies to best support it. The objectives of the systematic review were to present the best available evidence on the strategies, practices and organisational characteristics that promote constructive staff-family relationships in the care of older adults in the health care setting. Specifically this review sought to investigate how staff and family members perceive their relationships with each other; staff characteristics that promote constructive relationships with the family; and interventions that support staff-family relationships. A literature search was performed using the following databases for the years 1990-2005: Ageline, APAIS Health, Australian Family & Society Abstracts (FAMILY), CINAHL, Cochrane Library, Dare, Dissertation Abstracts, Embase, MEDLINE, PsycINFO, and Social Science Index. Personal communication from expert panel members was also used to identify studies for inclusion. A second search stage was conducted through review of reference

  12. Seeking harmony in the provision of care to the stroke-impaired: views of Chinese family caregivers.

    Science.gov (United States)

    Lee, Regina L T; Mok, Esther S B

    2011-05-01

    To explore the coping strategies of Chinese family caregivers of stroke-impaired older relatives. Many stroke-impaired patients rely heavily on support from their families, and the daily lives of such family caregivers are severely impacted. However, services and support for family caregivers of stroke-impaired relatives in the home setting have received little attention. Appropriate and relevant information and support to family caregivers are important in facilitating the care-giving task. It is, therefore, necessary to understand the nature and demands of care-giving before planning specific educational and support programmes. Grounded theory. Fifteen Chinese family caregivers of stroke-impaired older relatives were recruited and interviewed in 2003 and 2004. Theoretical sampling and constant comparative analysis were used to recruit the sample and perform data analysis. Seeking harmony to provide care for the stroke-impaired was the core category for describing and guiding the family care-giving process, with five main stages: (1) living with ambiguity, (2) monitoring the recovery progress, (3) accepting the downfalls, (4) meeting family obligations and (5) reconciling with harmony. These issues were seldom discussed openly with health professionals. The findings indicated that Chinese family caregivers determine their own needs by seeking harmony to continue to provide care without thinking about getting help from others or their own health problems. These findings help to define some of the complex dynamics that have an impact on the development of partnership care and might challenge nurses practising in the community. Community nurses should assess and understand the coping strategies of family caregivers and assist them to engage in stress-reducing practices. This is an important partnership to be formed in stroke care for family caregivers in the community. The study findings will guide further development of family care-giving aspects in nursing practice

  13. A pilot study of audiovisual family meetings in the intensive care unit.

    Science.gov (United States)

    de Havenon, Adam; Petersen, Casey; Tanana, Michael; Wold, Jana; Hoesch, Robert

    2015-10-01

    We hypothesized that virtual family meetings in the intensive care unit with conference calling or Skype videoconferencing would result in increased family member satisfaction and more efficient decision making. This is a prospective, nonblinded, nonrandomized pilot study. A 6-question survey was completed by family members after family meetings, some of which used conference calling or Skype by choice. Overall, 29 (33%) of the completed surveys came from audiovisual family meetings vs 59 (67%) from control meetings. The survey data were analyzed using hierarchical linear modeling, which did not find any significant group differences between satisfaction with the audiovisual meetings vs controls. There was no association between the audiovisual intervention and withdrawal of care (P = .682) or overall hospital length of stay (z = 0.885, P = .376). Although we do not report benefit from an audiovisual intervention, these results are preliminary and heavily influenced by notable limitations to the study. Given that the intervention was feasible in this pilot study, audiovisual and social media intervention strategies warrant additional investigation given their unique ability to facilitate communication among family members in the intensive care unit. Copyright © 2015 Elsevier Inc. All rights reserved.

  14. A short form of the neonatal intensive care unit family needs inventory

    Directory of Open Access Journals (Sweden)

    Elisabete Alves

    2016-02-01

    Full Text Available ABSTRACT OBJECTIVE: The identification of parental needs in Neonatal Intensive Care Units is essential to design and implement family-centered care. This article aims to validate the Neonatal Intensive Care Units Family Needs Inventory for the Portuguese population, and to propose a Short Form. METHODS: A linguistic adaptation of the Neonatal Intensive Care Units Family Needs Inventory, a self-report scale with 56-items, was performed. The instrument was administered to 211 parents of infants hospitalized in all level III Neonatal Intensive Care Units in the North of Portugal, 15-22 days after admission (July of 2013-June of 2014. The number of items needed to achieve reliability close to 0.8 was calculated using by the Spearman-Brown formula. The global goodness of fit of the scale was evaluated using the comparative fit index. Construct validity was assessed through association of each dimension score with socio-demographic and obstetric characteristics. RESULTS: Exploratory factor analysis revealed two dimensions, one focused on parents' needs and another on the infant's needs. To compose the Short Form Inventory, items with ceiling effect were eliminated and 22 items were submitted to confirmatory analysis, which supported the existence of two dimensions (CFI = 0.925. The Short Form showed a high degree of reliability (alpha ≥ 0.76. Less educated and older parents more frequently attributed a significantly higher importance to parent-centered needs, while parents of multiples revealed a tendency to value infant-centered needs. CONCLUSIONS: The Short Form of the Neonatal Intensive Care Units Family Needs Inventory is a brief, simple, and valid instrument with a high degree of reliability. Further studies are needed to explore associations with practices of family-centered care.

  15. Engaging with Families Is a Challenge: Beliefs among Healthcare Professionals in Forensic Psychiatric Care

    Directory of Open Access Journals (Sweden)

    Ulrica Hörberg

    2015-01-01

    Full Text Available Being healthcare professionals in the complex field of forensic psychiatry care (FPC seems particularly challenging. Historically, families have almost been invisible in FPC. The aim of this study was to uncover beliefs among healthcare professionals concerning families of patients admitted for FPC. Using a hermeneutical approach inspired by Gadamer’s philosophy, group interviews with healthcare professionals in four Swedish forensic psychiatric clinics were analyzed. Analysis resulted in seven key beliefs. There were three beliefs about families: family belongingness is a resource for the patient; most families are broken and not possible to trust; and most families get in the way of the patient’s care. Four beliefs concerned encounters with families: it is important to achieve a balance and control over the family; it is essential to set aside one’s own values and morals; family-oriented work is an impossible mission; and family oriented work requires welcoming the families. Despite ethical dilemmas of working with families in FPC, healthcare professionals showed a willingness and desire to work in a more family-oriented manner. More knowledge, understanding, and caring tools are needed in order to meet the needs of the family as well as support the family’s resources.

  16. INHUMAN HUMAN NATURE: LOIS LOWRY’S THE GIVER

    Directory of Open Access Journals (Sweden)

    Oznur Cengiz

    2017-06-01

    Full Text Available Lois Lowry (1937- is a prolific author having a number of books – Number the Stars (1989, Gathering Blue (2000, and Messenger (2004 – and awards especially in the field of children’s literature. Her significant science fiction novel, The Giver (1993, presents a social panorama in order to thoroughly analyze the society’s mechanical life style. As an example of dystopia, the author delineates a systematically organized social order where people abide by the rules naturally. Nevertheless, Jonas, the protagonist and Receiver of Memory, is the first person to discern robotic/mechanical order in the society which is transformed into “sameness” eliminating all individual differences and emotions such as pain, happiness, cold, colors, and so on. Therefore, Receiver of Memory storing past memories of the society is the only one who is aware of human characteristics. The crucial point is that human figure, far from the current one, displays inhuman (non-human features without memories and hope. Mechanical association between individuals and social structure ascertains artificial form of life in which there is no chance to choose. After learning truths behind the strict order, Jonas is in pursuit of real world with all kinds of feelings; however, his recognition is not able to change the whole society. Hence, this paper aims at delving into the relationship between human nature and society with regard to posthuman approach and inhuman human form in accordance with transformation of human nature.

  17. Factors that affect parent perceptions of provider-family partnership for children with special health care needs.

    Science.gov (United States)

    Knapp, Caprice A; Madden, Vanessa L; Marcu, Mircea I

    2010-09-01

    Partnering between families and their children's providers is a cornerstone of family-centered care. This study aimed to identify factors associated with family-provider partnership and determine the association between partnership and other outcome measures for children with special health care needs (CSHCN). Descriptive, bivariate, and multivariate analyses were conducted using data from the 2005-2006 National Survey of Children with Special Health Care Needs. Multivariate models showed that CSHCN who are White non-Hispanic, younger than 12, reside in households with incomes above 400% of the federal poverty level, and have a usual source of care were associated with family-provider partnership. Multivariate models showed that family-provider partnership was significantly associated with adequate insurance, early and continual screening, organized health care services, and transition preparedness. Family-provider partnership was associated with 20% fewer emergency department visits and 9% fewer school days missed. This study suggests that policies aimed at promoting family-provider partnership could increase health outcomes for CSHCN.

  18. Lived Experience of Caregivers of Family-Centered Care in the Neonatal Intensive Care Unit: “Evocation of Being at Home”

    Science.gov (United States)

    Hadian Shirazi, Zahra; Sharif, Farkhondeh; Rakhshan, Mahnaz; Pishva, Narjes; Jahanpour, Faezeh

    2016-01-01

    Background In recent decades, family-centered care (FCC) has come to be known, accepted, and reported as the best care strategy for admitted children and their families. However, in spite of the increasing application of this approach, the experiences of the caregivers have not yet been studied. Objectives The present study aimed at the description and interpretation of the FCC experience in two neonatal intensive care units (NICU) at Shiraz University of Medical Sciences. Methods This study was conducted through the hermeneutic phenomenological approach. Semi-structured interviews were conducted with 17 professional and familial caregivers, and their interactions were observed in three work shifts. The interviews were audiotaped and transcribed verbatim. After observations, field notes were also written. Finally, the data were analyzed through van Manen’s methodology. Results One of the essential themes that emerged in this study was the “evocation of being at home” among familial and even professional caregivers. This theme had three subthemes: i.e., “meta-family interaction,” “comprehensive support,” and “reconstruction of a normal family.” Accordingly, FCC eliminated borders between professional and non-professional caregivers and built close relationships among them in the NICU. It also provided for the needs of neonates, their families, and even professional caregivers through perceived and received support. Conclusions Parents of the neonates admitted to the NICU experience hard moments. They not only play the role of primary caregivers, but they also receive the care. Focusing on the different meanings of this care from the caregivers’ points of view and having managers provide certain requirements can guarantee the establishment of comprehensive care for clients and proper support for the staff in this unit. PMID:28203324

  19. Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

    Science.gov (United States)

    Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

    2017-09-01

    People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

  20. Nurses negotiating professional-familial care boundaries: striving for balance within double duty caregiving.

    Science.gov (United States)

    Ward-Griffin, Catherine; Brown, Judith Belle; St-Amant, Oona; Sutherland, Nisha; Martin-Matthews, Anne; Keefe, Janice; Kerr, Mickey

    2015-02-01

    The purpose of this sequential, two-phase mixed-methods study was to examine the health of male and female nurses who provided care to older relatives (i.e., double duty caregivers). We explored the experiences of 32 double duty caregivers, which led to the development of an emergent grounded theory, Negotiating Professional-Familial Care Boundaries with two broad dialectical processes: professionalizing familial care and striving for balance. This article examines striving for balance, which is the process that responds to familial care expectations in the midst of available resources and reflects the health experiences of double duty caregivers. Two subprocesses of striving for balance, reaping the benefits and taking a toll, are presented in three composite vignettes, each representing specific double duty caregiving (DDC) prototypes (making it work, working to manage, living on the edge). This emergent theory extends current thinking of family caregiving that will inform the development and refinement of practices and policies relevant to DDC. © The Author(s) 2014.

  1. How people with diabetes evaluate participation of their family in their health care

    Directory of Open Access Journals (Sweden)

    Aliny de Lima Santos

    2014-07-01

    Full Text Available Objective. To understand how individuals with diabetes evaluate the participation of their family in their health care. Methodology. This was a descriptive study with a qualitative approach involving 26 individuals in the Diabetes Association of Maringá. Participating in the study were 9 women and 17 men (age range, 38 to 83 years who had attended at least one educational meeting of the "culture circles" of the association. We used the methodological reference of Paulo Freire for implementing an educational proposal directed at persons with type 2 diabetes mellitus that overcame the limitations of conventional health education approaches. Data were collected between May and July 2011. Testimonials given in meetings were recorded, transcribed, and analyzed according to thematic structures. Results. Three thematic structures appeared: 1 Recognizing the importance of family in the care of patients with diabetes, 2 blaming the family for non-adherence to healthy practices, and 3 perceiving a secondary gain of the disease: feeling cared for by family members. Conclusion. Patients with diabetes perceive family as a source of support and stimulus for adherence and healthy practice, which enable them to control the disease. Family participation in a patient's care plan should be encouraged.

  2. A Comprehensive Pregnancy and Family Medical Care Leave Program for the 21st Century

    National Research Council Canada - National Science Library

    Sayre, Batte

    1999-01-01

    .... It also provides an option for extended family care for all medical needs with a family medical care leave of up to one year to assist unit readiness, improve quality of life, and increase soldier...

  3. Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.

    Science.gov (United States)

    Eijkholt, Marleen; Jankowski, Jane; Fisher, Marilyn

    2017-01-01

    Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

  4. A comparison of surgery and family medicine residents' perceptions of cross-cultural care training.

    Science.gov (United States)

    Chun, Maria B J; Jackson, David S; Lin, Susan Y; Park, Elyse R

    2010-12-01

    The need for physicians formally trained to deliver care to diverse patient populations has been widely advocated. Utilizing a validated tool, Weissman and Betancourt's Cross-Cultural Care Survey, the aim of this current study was to compare surgery and family medicine residents' perceptions of their preparedness and skillfulness to provide high quality cross-cultural care. Past research has documented differences between the two groups' reported impressions of importance and level of instruction received in cross-cultural care. Twenty surgery and 15 family medicine residents participated in the study. Significant differences were found between surgery and family medicine residents on most ratings of the amount of training they received in cross-cultural skills. Specifically, family medicine residents reported having received more training on: 1) determining how patients want to be addressed, 2) taking a social history, 3) assessing their understanding of the cause of illness, 4) negotiating their treatment plan, 5) assessing whether they are mistrustful of the health care system and÷or doctor, 6) identifying cultural customs, 7) identifying how patients make decisions within the family, and 8) delivering services through a medical interpreter. One unexpected finding was that surgery residents, who reported not receiving much formal cultural training, reported higher mean scores on perceived skillfulness (i.e. ability) than family medicine residents. The disconnect may be linked to the family medicine residents' training in cultural humility - more knowledge and understanding of cross-cultural care can paradoxically lead to perceptions of being less prepared or skillful in this area. Hawaii Medical Journal Copyright 2010.

  5. Older adults' influence in family care: how do daughters and aging parents navigate differences in care goals?

    Science.gov (United States)

    Heid, Allison R; Zarit, Steven H; Van Haitsma, Kimberly

    2016-01-01

    This study seeks to address how older adults influence their daily care when their preferences conflict with those of their adult daughter caregivers. Using a sample of 10 dyads (N = 20) of an older adult and adult daughter, we utilize content analysis strategies to analyze in-depth, semi-structured interview data with QSR NVIVO to investigate how older adults influence their care, how daughters respond to such efforts of influence, and how dyads navigate differences in care goals. When there is agreement in goals, dyads report tasks going well and both individuals' requests are honored. When there are differences in care goals, daughters most frequently reason with their older parents, while parents walk away or 'let go' of their requests. Daughters report making decisions for their parents for health or safety-related needs. However, all dyads discuss differences in care goals, whereby parents are perceived as insisting, resisting, or persisting in care. Findings illustrate complex patterns of responses by families when navigating differences in daily care goals that carry important implications for research and the development of dyadic-based family interventions.

  6. Home to die from the intensive care unit: A qualitative descriptive study of the family's experience.

    Science.gov (United States)

    Hutchinson, Amy L; Van Wissen, Kim A

    2017-12-01

    Many people would choose to die at home, and this can be an option for intensive care patients. However, there is limited exploration of the impact on the family. To gain insight into family members' experiences when an adult intensive care unit patient is taken home to die. Methodology is qualitative description, utilising purposeful sampling, unstructured interviews and thematic analysis. Four participants, from two different families were interviewed. The setting was a tertiary level Intensive Care Unit in New Zealand. The experience was described as a kaleidoscope of events with two main themes: 'value' family member's found in the patient going home, and their experience of the 'process'. 'Value' subthemes: going home being the patient's own decision, home as an end-of-life environment, and the patient's positive response to being at home. 'Process' subthemes: care and support received, stress of a family member being in intensive care, feeling that everything happened quickly, and concerns and uncertainties. Going home to die from the intensive care unit can be a positive but challenging experience for the family. Full collaboration between the patient, family and staff is essential, to ensure the family are appropriately supported. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. Use of augmentative and alternative communication strategies by family members in the intensive care unit.

    Science.gov (United States)

    Broyles, Lauren M; Tate, Judith A; Happ, Mary Beth

    2012-03-01

    Little is known about communication between patients and their family members during critical illness and mechanical ventilation in the intensive care unit, including use of augmentative and alternative communication tools and strategies. To identify (1) which augmentative and alternative communication tools families use with nonspeaking intensive care patients and how they are used, and (2) what families and nurses say about communication of family members with nonspeaking intensive care patients. A qualitative secondary analysis was conducted of existing data from a clinical trial testing interventions to improve communication between nurses and intensive care patients. Narrative study data (field notes, intervention logs, nurses' interviews) from 127 critically ill adults were reviewed for evidence of family involvement with augmentative and alternative communication tools. Qualitative content analysis was applied for thematic description of family members' and nurses' accounts of patient-family communication. Family involvement with augmentative and alternative communication tools was evident in 44% of the 93 patients who completed the parent study protocol. Spouses or significant others communicated with patients most often. Main themes describing patient-family communication included (1) families being unprepared and unaware, (2) families' perceptions of communication effectiveness, (3) nurses deferring to or guiding patient-family communication, (4) patients' communication characteristics, and (5) families' experience with and interest in augmentative and alternative communication tools. Assessment by skilled bedside clinicians can reveal patients' communication potential and facilitate useful augmentative and alternative communication tools and strategies for patients and their families.

  8. The Family Context of Care in HIV/AIDS: A Study of Mumbai, India

    Science.gov (United States)

    D'Cruz, Premilla

    2004-01-01

    Though the continuum of care model has been adopted in HIV/AIDS intervention, there is little empirical work documenting the experiences of caregiving families. Addressing this gap, a study on family caregiving and care receiving was undertaken in Mumbai, India. In-depth interviews were conducted with seven seropositive caregivers, seven…

  9. Training of Professionals from the Family Health Strategy for Psychosocial Care for the Elderly

    Directory of Open Access Journals (Sweden)

    Verônica Lourdes Lima Batista Maia

    2017-01-01

    Full Text Available Background: Mental disorders of the elderly constitute a public health problem due to their high prevalence, shortage of specialized services offered in Brazil, difficulties of access by the population and deficiency in the training of professionals of the Family Health Strategy for the identification, receptiveness and psychosocial assistance to the elderly. Objectives: To analyze the training of professionals of the Family Health Strategy on psychosocial care for the elderly in the context of the Psychosocial Care Network – RAPS (Rede de Atenção Psicossocial, and to discuss how professional training influences the care provided to the elderly. Methodology: Descriptive, qualitative study carried out with 31 professionals, 13 physicians and 18 nurses, who work at the Family Health Strategy of the city of Picos, Piauí, Brazil. The data were collected in January 2016, through a semi-structured interview guide, processed by the IRAMUTEQ software and analyzed by means of the Descending Hierarchical Classification. Results: The results were presented in three segments, namely: 1. The practice of professionals from the Family Health Strategy in psychosocial care in the family context; 2. Training of specialized professionals, in the attention to the elderly, in the Family Health Strategy; 3. The Psychosocial Attention Network in the care of elderly users of alcohol and other drugs; Conclusion: Health professionals have difficulties in dealing with the elderly with mental disorders in basic care. In order to facilitate access to specialized health services and to develop actions for social reintegration, prevention and harm reduction, it is necessary to implement a policy of ongoing training and education for health professionals to improve care for the elderly. Keywords: Aging; Mental Health; Mental disorders; Family Health Strategy.

  10. ["Nicht von schlechten Eltern - NischE": A Family Orientated Collaborative Care Approach to Support Children in Families with Mentally Ill Parents].

    Science.gov (United States)

    Wabnitz, Pascal; Kronmüller, Klaus-Thomas; Wieskus-Friedemann, Erwin; Kliem, Sabine; Hoppmann, Johannes; Burek, Monika; Löhr, Michael; Kemper, Ulrich; Nienaber, André

    2016-11-01

    "Nicht von schlechten Eltern - NischE": A Family Orientated Collaborative Care Approach to Support Children in Families with Mentally Ill Parents The present work describes the setting- and multi-professional offer "NischE" in Gütersloh, a systemic approach for the care of children and their mentally ill parents. Children of mentally ill parents are a special risk group for developing their own mental illness. The aim of the collaborative care model between child and adolescent psychiatry, youth services and adult psychiatry is to enable affected families in terms of family-focused practice a low threshold access to different services. For this purpose, two positions have been created to advise the affected families and support access to the help system in the sense of a systemic case management in a project. The article describes the background and the need for the development of the offer, the current scientific knowledge base on the subject and illustrates the procedure using a case study from practice.

  11. Defining the Medical Intensive Care Unit in the Words of Patients and Their Family Members: A Freelisting Analysis.

    Science.gov (United States)

    Auriemma, Catherine L; Lyon, Sarah M; Strelec, Lauren E; Kent, Saida; Barg, Frances K; Halpern, Scott D

    2015-07-01

    No validated conceptual framework exists for understanding the outcomes of patient- and family-centered care in critical care. To explore the meaning of intensive care unit among patients and their families by using freelisting. The phrase intensive care unit was used to prompt freelisting among intensive care unit patients and patients' family members. Freelisting is an anthropological technique in which individuals define a domain by listing all words that come to mind in response to a topic. Salience scores, derived from the frequency with which a word was mentioned, the order in which it was mentioned, and the length of each list, were calculated and analyzed. Among the 45 participants, many words were salient to both patients and patients' family members. Words salient solely for patients included consciousness, getting better, noisy, and personal care. Words salient solely for family members included sadness, busy, professional, and hope. The words suffering, busy, and team were salient solely for family members of patients who lived, whereas sadness, professionals, and hope were salient solely for family members of patients who died. The words caring and death were salient for both groups. Intensive care unit patients and their families define intensive care unit by using words to describe sickness, caring, medical staff, emotional states, and physical qualities of the unit. The results validate the importance of these topics among patients and their families in the intensive care unit and illustrate the usefulness of freelisting in critical care research. ©2015 American Association of Critical-Care Nurses.

  12. Understanding the association between employee satisfaction and family perceptions of the quality of care in hospice service delivery.

    Science.gov (United States)

    York, Grady S; Jones, Janet L; Churchman, Richard

    2009-11-01

    Families often draw their conclusions about the quality of care received by a family member during the last months of life from their interactions with professional caregivers. A more comprehensive understanding of how these relationships influence the care experience should include an investigation of the association between employee job satisfaction and family perception of the quality of care. This cross-sectional study investigated the association at a regional hospice. Using the Kendall's tau correlation, employee satisfaction scores for care teams trended toward a positive correlation with family overall satisfaction scores from the Family Evaluation of Hospice Care (tau=0.47, P=0.10). A trend for differences in employee satisfaction between the care teams to associate with differences in overall family perceptions of the quality of care also was found using the Kruskal-Wallis analysis of variance (chi(2)(K-W)=9.236, P=0.075). Post hoc tests indicated that overall family perceptions of quality of care differed between the hospice's Residence Team and Non-Hospice Facilities Team. Finally, positive associations between employee satisfaction and the families' Intent to recommend hospice (tau=0.55, P=0.059) and Inform and communicate about patient (tau=0.55, P=0.059) were noted. Selected employee and family comments provide complementarity to further clarify or explain the respondent data. These results suggest that employee satisfaction is associated with family perceptions of the quality of hospice care. Opportunities for improving both employee job satisfaction and family perceptions of the quality of care are discussed.

  13. Factors associated with family reunification for children in foster care

    NARCIS (Netherlands)

    López, Mónica; del Valle, Jorge F.; Montserrat, Carme; Bravo, Amaia

    In this paper, we analyse reunification processes from family foster care, both kinship and non-kinship, and the variables associated with them in a Spanish sample. Data collection was carried out after a review of child protection and foster care files, and those responsible for the cases were also

  14. Preconception care by family physicians and general practitioners in Japan

    Directory of Open Access Journals (Sweden)

    Fetters Michael D

    2005-07-01

    Full Text Available Abstract Background Preconception care provided by family physicians/general practitioners (FP/GPs can provide predictable benefits to mothers and infants. The objective of this study was to elucidate knowledge of, attitudes about, and practices of preconception care by FP/GPs in Japan. Methods A survey was distributed to physician members of the Japanese Academy of Family Medicine. The questionnaire addressed experiences of preconception education in medical school and residency, frequency of preconception care in clinical practice, attitudes about providing preconception care, and perceived need for preconception education to medical students and residents. Results Two hundred and sixty-eight of 347 (77% eligible physicians responded. The most common education they reported receiving was about smoking cessation (71%, and the least was about folic acid supplementation (12%. Many participants reported providing smoking cessation in their practice (60%, though only about one third of respondents advise restricting alcohol intake. Few reported advising calcium supplementation (10% or folic acid supplementation (4%. About 70% reported their willingness to provide preconception care. Almost all participants believe medical students and residents should have education about preconception care. Conclusion FP/GPs in Japan report little training in preconception care and few currently provide it. With training, most participants are willing to provide preconception care themselves and think medical students and residents should receive this education.

  15. Systems, strategies, and interventions for sustainable long-term care and protection of children with a history of living outside of family care.

    Science.gov (United States)

    Fluke, John D; Goldman, Philip S; Shriberg, Janet; Hillis, Susan D; Yun, Katherine; Allison, Susannah; Light, Enid

    2012-10-01

    This article reviews the available evidence regarding the efficacy, effectiveness, ethics, and sustainability of approaches to strengthen systems to care for and protect children living outside family care in low- and middle-income countries. For trafficked children, children of and on the street, children of conflict/disaster, and institutionalized children, a systems framework approach was used to organize the topic of sustainable approaches in low- and middle-income countries and addresses the following: legislation, policies, and regulations; system structures and functions (formal and informal); and continuum of care and services. The article draws on the findings of a focal group convened by the U.S. Government Evidence Summit: Protecting Children Outside of Family Care (December 12-13, 2011, Washington, DC), tasked with reviewing the literature on systems, strategies, and interventions for sustainable long-term care and protection of children with a history of living outside of family care in low- and middle-income country contexts. The specific methodology for the review is described in the commentary paper (Higgs, Zlidar, & Balster, 2012) that accompanies these papers. For the most part, the evidence base in support of sustainable long-term care for the populations of interest is relatively weak, with some stronger but unreplicated studies. Some populations have been studied more thoroughly than others, and there are many gaps. Most of the existing studies identify population characteristics, needs, and consequences of a lack of systemic services to promote family-like care. There is some evidence of the effectiveness of laws and policies, as well as some evidence of service effectiveness, in improving outcomes for children outside of family care. Despite the weaknesses and gaps of the existing research, there is a foundation of research for going forward, which should focus on developing and implementing systems for these most vulnerable children. The

  16. Family-centred care during midface advancement with a rigid external device: what do families need?

    Science.gov (United States)

    Bredero-Boelhouwer, H; Joosten, K F M; van Veen-van der Hoek, M; Mathijssen, I M J

    2013-08-01

    Midface advancement with distraction osteogenesis using the rigid external device (RED) is an effective but invasive treatment to correct the hypoplastic midface. This study draws up an inventory of the stressors, needs and coping strategies of families during this treatment, to determine the best conditions for family-centred care. Data were collected by reviewing the patients' files and administering semi-structured interviews. The data were analysed using the software program Atlas.ti and were re-analysed by an independent researcher. Parents and patients were interviewed separately. Fourteen families participated. Four patients had an absolute indication for surgery. All families were eager to have the patient's facial appearance improved. Nevertheless, despite psychological counselling, they experienced stress when confronted with the changed facial appearance. Another stressor was weight loss. Six patients were in a state of acute malnutrition and needed supplementary feeding. We conclude that the best conditions for family-centred care should be aligned to the different phases of treatment. Leading up to surgery it is important to screen families' expectations regarding aesthetic, functional and social outcomes and to assess their capacity to cope with the long treatment and effects of changed facial appearance. Peer contact and psychosocial training to increase self-esteem are tools to enhance co-operation and satisfaction. During the distraction and stabilisation phase, we advise the monitoring of nutritional intake and weight. During all phases of treatment easy accessibility to the team is recommended. Copyright © 2013 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.

  17. Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers

    Science.gov (United States)

    Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.

    2011-01-01

    Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a…

  18. Child care consultations held by nurses within the Family Health Strategy

    Directory of Open Access Journals (Sweden)

    Francisco Fagner Sousa Oliveira

    2013-09-01

    Full Text Available The study aimed at identifying initiatives taken by nurses during child care routine visits in Family Health Units. It is an observational, descriptive and quantitative research. Data collection took place from August to October 2011, through the observation of three consultations carried out by eight nurses (24 appointments for the Family Health Strategy Scheme in Picos - Piauí. During consultations, the following issues were more frequently observed: anthropometry, reflexes according to age, encouraging of exclusive breastfeeding and advice on child hygiene. The need for further nurse training through continuous education was verified, seeking to improve care in order to contribute to the improvement of nursing care quality focused on promoting child health thru childcare consultations.

  19. Family structure and use of prenatal care

    Directory of Open Access Journals (Sweden)

    Elisabete Alves

    2015-06-01

    Full Text Available This cross-sectional study intended to assess the use of prenatal care according to the family structure in a population with free universal access to prenatal care. In 2005-2006, the Portuguese birth cohort was assembled by the recruitment of puerperae at public maternity wards in Porto, Portugal. In the current analysis, 7,211 were included. Data on socio-demographic characteristics, obstetric history, and prenatal care were self-reported. Single mothers were considered as those whose household composition did not include a partner at delivery. Approximately 6% of the puerperae were single mothers. These women were more likely to have an unplanned pregnancy (OR = 6.30; 95%CI: 4.94-8.04, an inadequate prenatal care (OR = 2.30; 95%CI: 1.32-4.02, and to miss the ultrasound and the intake of folic acid supplements during the first trimester of pregnancy (OR = 1.71; 95%CI: 1.30-2.27; and OR = 1.67; 95%CI: 1.32-2.13, respectively. The adequacy and use of prenatal care was less frequent in single mothers. Educational interventions should reinforce the use and early initiation of prenatal care.

  20. Primary Care Physician Involvement in Shared Decision Making for Critically Ill Patients and Family Satisfaction with Care.

    Science.gov (United States)

    Huang, Kevin B; Weber, Urs; Johnson, Jennifer; Anderson, Nathanial; Knies, Andrea K; Nhundu, Belinda; Bautista, Cynthia; Poskus, Kelly; Sheth, Kevin N; Hwang, David Y

    2018-01-01

    An intensive care unit (ICU) patient's primary care physician (PCP) may be able to assist family with certain ICU shared medical decisions. We explored whether families of patients in nonopen ICUs who nevertheless report involvement of a patient's PCP in medical decision making are more satisfied with ICU shared decision making than families who do not. Between March 2013 and December 2015, we administered the Family Satisfaction in the ICU 24 survey to family members of adult neuroscience ICU patients. We compared the mean score for the survey subsection regarding shared decision making (graded on a 100-point scale), as well as individual survey items, between those who reported the patient's PCP involvement in any medical decision making versus those who did not. Among 263 respondents, there was no difference in mean overall decision-making satisfaction scores for those who reported involvement (81.1; SD = 15.2) versus those who did not (80.1; SD = 12.8; P = .16). However, a higher proportion reporting involvement felt completely satisfied with their 1) inclusion in the ICU decision making process (75.9% vs 61.4%; P = .055), and 2) control over the care of the patient (73.6% vs 55.6%; P = .02), with no difference regarding consistency of clinical information provided by the medical team (64.8% vs 63.5%; P = 1.00). Families who report involvement of a patient's PCP in medical decision making for critically ill patients may be more satisfied than those who do not with regard to specific aspects of ICU decision making. Further research would help understand how best to engage PCPs in shared decisions. © Copyright 2018 by the American Board of Family Medicine.

  1. Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients

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    Sujatha Shanmugasundaram

    2009-01-01

    Full Text Available Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.

  2. Children, AIDS and the politics of orphan care in Ethiopia: the extended family revisited.

    Science.gov (United States)

    Abebe, Tatek; Aase, Asbjorn

    2007-05-01

    The astounding rise in the number of orphans due to the HIV/AIDS epidemic has left many Ethiopian families and communities with enormous childcare problems. Available studies on the capacity and sustainability of the extended family system, which culturally performs the role of care for children in need, suggest two competing theories. The first is grounded in the social rupture thesis and assumes that the traditional system of orphan care is stretched by the impact of the epidemic, and is actually collapsing. By contrast, the second theory counter-suggests that the flexibility and strength of the informal childcare practise, if supported by appropriate interventions, can still support a large number of orphans. Based on a seven-month period of child-focused, qualitative research fieldwork in Ethiopia involving observations; in-depth interviews with orphans (42), social workers (12) and heads of households (18); focus group discussions with orphans (8), elderly people and community leaders (6); and story-writing by children in school contexts, this article explores the trade-offs and social dynamics of orphan care within extended family structures in Ethiopia. It argues that there is a rural-urban divide in the capacity to cater for orphans that emanates from structural differences as well as the socio-cultural and economic values associated with children. The care of orphans within extended family households is also characterised by multiple and reciprocal relationships in care-giving and care-receiving practices. By calling for a contextual understanding of the 'orphan burden', the paper concludes that interventions for orphans may consider care as a continuum in the light of four profiles of extended families, namely rupturing, transient, adaptive, and capable families.

  3. The home-based maternal record: a tool for family involvement in health care.

    Science.gov (United States)

    Shah, P M; Shah, K P; Belsey, M A

    1988-04-01

    The home-based maternal record offers an opportunity for family involvement in health care. Home-based records of maternal health have been used in several developing countries, and have led to increased detection and monitoring of women at high risk for complications during pregnancy. Home-based cards that include menstrual information remind health workers to educate and motivate women for family planning, and serve as a source of health statistics. Records that use pictures and symbols have been used by illiterate traditional birth attendants, and had an accurate completion rate of over 90%. The WHO has prepared a prototype record and guidelines for local adaptation. The objectives were to provide continuity of care throughout pregnancy, ensure recognition of at-risk women, encourage family participation in health care, an provide data on maternal health, breastfeeding, and family planning. The guidelines have been evaluated and results show that the records have improved the coverage, acceptability, and quality of MCH/FP care. The records have also led to an increase in diagnosis and referral of at-risk women and newborns, and the use of family planning and tetanus toxoid immunization has increased in the 13 centers where the reports are being used. Focus group discussions have shown that mothers, community members, primary health workers, and doctors and nurses liked the records. It is important to adapt criteria for high-risk conditions to the local areas where the records will be used to ensure the relevance of risk diagnosis. The evidence shows that home-based maternal and child records can be an important tool in the promotion of self-reliance and family participation in health care. In addition, home-based records can be used for the implementation of primary health care at the local level, and serve as a resource for data collection.

  4. Supportive families versus support from families: The decision to have a child in the Netherlands

    Directory of Open Access Journals (Sweden)

    Susan Schaffnit

    2017-08-01

    Full Text Available Background: Support from families can reduce costs of reproduction and may therefore be associated with higher fertility for men and women. Family supportiveness, however, varies both between families - some families are more supportive than others - and within families over time - as the needs of recipients and the abilities of support givers change. Distinguishing the effects of time-invariant between-family supportiveness and time-varying within-family supportiveness on fertility can help contribute to an understanding of how family support influences fertility. Objective: We distinguish 'between' and 'within' families for several types of support shared between parents and adult children and test whether between- and within-family variation in support associates with birth timings. Methods: We use seven years of annually collected LISS panel data from the Netherlands on 2,288 reproductive-aged men and women to investigate the timing of first and subsequent births. Results: We find between-family support is more often associated with fertility than is within-family support, particularly for first births and for women. Emotional support is generally associated with earlier first births for both men and women, while results for financial and reciprocal emotional support are mixed. There is some indication that the latter kind of support positively predicts births for men and negatively for women. Conclusions: Our results suggest that feeling supported may be more important than actual support in reproductive decision-making in this high-income setting. Contribution: We apply a method novel to human demography to address both a conceptual and methodological issue in studies of families and fertility.

  5. Moving towards Midlife Care as Negotiated Family Business: Accounts of People with Intellectual Disabilities and Their Families "Just Getting along with Their Lives Together"

    Science.gov (United States)

    Knox, Marie; Bigby, Christine

    2007-01-01

    This study explores meanings of family care held by seven families that include a middle-aged adult with intellectually disability. In-depth interviews were conducted with members of each family--the person with intellectual disability, parents, siblings, and sibling spouses. Participants described care as simply getting on with their lives, as…

  6. Challenges in providing culturally-competent care to patients with metastatic brain tumours and their families.

    Science.gov (United States)

    Longo, Lianne; Slater, Serena

    2014-01-01

    Being diagnosed with a metastatic brain tumour can be devastating as it is characterized by very low cure rates, as well as significant morbidity and mortality. Given the poor life expectancy and progressive disability that ensues, patients and family members experience much turmoil, which includes losses that bring about changes to family roles, routines and relationships. Crisis and conflict are common during such major disruptions to a family system, as individual members attempt to make sense of the illness experience based on cultural and spiritual beliefs, past experiences and personal philosophies. It is imperative health care providers strive towards increased awareness and knowledge of how culture affects the overall experience of illness and death in order to help create a mutually satisfactory care plan. Providing culturally-competent care entails the use of proper communication skills to facilitate the exploration of patient and family perspectives and allows for mutual decision making. A case study will illustrate the challenges encountered in providing culturally-competent care to a woman with brain cancer and her family. As the patient's health declined, the family entered into a state of crisis where communication between family members and health care professionals was strained; leading to conflict and sub-optimal outcomes. This paper will address the ethical dilemma of providing culturally-competent care when a patient's safety is at risk, and the nursing implications of upholding best practices in the context of differing beliefs and priorities.

  7. Dementia and family burden of care in Lebanon

    DEFF Research Database (Denmark)

    Chaaya, Monique; Phung, Kieu; Atweh, Samir

    2017-01-01

    The burden on and mental well-being of family carers for the elderly, especially those with dementia, has been well studied in high-income countries and to a lesser extent in the Arab region. Our study of Lebanese carers highlights the importance of considering the psychological well......-being of the family carer, and the role of dementia and depression in increasing the burden of care. Psychosocial interventions have produced equivocal results and therefore customised and contextualised interventions need to be researched. Greater understanding of the coping mechanisms used by carers is required...

  8. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

    Science.gov (United States)

    Kenner, C; Press, J; Ryan, D

    2015-12-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations.

  9. Family carers/next-of-kin perceptions of home-care technology: a review

    Directory of Open Access Journals (Sweden)

    Smithard DG

    2014-05-01

    Full Text Available David G Smithard1,2 1Royal Victoria Hospital, Kent Community Health NHS Trust, Folkestone, UK; 2Department of Electronics and Digital Arts, University of Kent, Canterbury, UK Abstract: As the global population increases in age and the pressures on hospital resources increase, with a defined budget, the management of people in their own home environment is increasingly being accepted as a viable alternative to hospital admission. Evidence from the US and Australian health care systems has shown that acute care at home for older people is safe and the outcomes are at times better than when older people are admitted. Caring of people at home, particularly older people, puts an increased burden of expectation on the next of kin (family members; however, this burden appears to be offset by the reduction in the inconvenience that admission to hospital brings. In many cases, family members highlight the positives of home-based care, such as the convenience, increased contact, and in the case of people with long-term conditions, return of independence and socialization. However, we know little about the perceptions of family members to the ever-increasing possibilities of medically managing people at home, and future research needs to take this into account and to consider their views, as well as those of the people in receipt of care. Keywords: telehealth, health care, acute care, hospital at home

  10. The impact of single and shared rooms on family-centred care in children's hospitals.

    Science.gov (United States)

    Curtis, Penny; Northcott, Andy

    2017-06-01

    To explore whether and how spatial aspects of children's hospital wards (single and shared rooms) impact upon family-centred care. Family-centred care has been widely adopted in paediatric hospitals internationally. Recent hospital building programmes in many countries have prioritised the provision of single rooms over shared rooms. Limited attention has, however, been paid to the potential impact of spatial aspects of paediatric wards on family-centred care. Qualitative, ethnographic. Phase 1; observation within four wards of a specialist children's hospital. Phase 2; interviews with 17 children aged 5-16 years and 60 parents/carers. Sixty nursing and support staff also took part in interviews and focus group discussions. All data were subjected to thematic analysis. Two themes emerged from the data analysis: 'role expectations' and 'family-nurse interactions'. The latter theme comprised three subthemes: 'family support needs', 'monitoring children's well-being' and 'survey-assess-interact within spatial contexts'. Spatial configurations within hospital wards significantly impacted upon the relationships and interactions between children, parents and nurses, which played out differently in single and shared rooms. Increasing the provision of single rooms within wards is therefore likely to directly affect how family-centred care manifests in practice. Nurses need to be sensitive to the impact of spatial characteristics, and particularly of single and shared rooms, on families' experiences of children's hospital wards. Nurses' contribution to and experience of family-centred care can be expected to change significantly when spatial characteristics of wards change and, as is currently the vogue, hospitals maximise the provision of single rather than shared rooms. © 2016 John Wiley & Sons Ltd.

  11. Caring for the brain tumor patient: family caregiver burden and unmet needs.

    Science.gov (United States)

    Schubart, Jane R; Kinzie, Mable B; Farace, Elana

    2008-02-01

    The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

  12. The practice of nurses caring for families of pediatric inpatients in light of Jean Watson

    Directory of Open Access Journals (Sweden)

    Maiara Rodrigues dos Santos

    2014-08-01

    Full Text Available Objective To know the facilities and the difficulties of nurses in caring practice of hospitalized children’s families in the light of Jean Watson’s Theory of Human Caring. Method It was used the descriptive qualitative approach. The data collection was conducted in three stages: presentation of theoretical content; engagement with families in the light of Watson’s theory; and semi-structured interview with 12 pediatric nurses. The interviews were analysed using inductive thematic analysis, being possible to form three themes: Recognizing a framework for care; Considering the institutional context; and Challenges in family’s relationship. Results The theory favored reflections about self, about the institutions and about nurses’ relationship with the family of the child, normalized by a consciousness toward caring attitudes. Conclusion In this process, it is imperative that nurses recognize the philosophical-theoretical foundations of care to attend the child’s family in hospital.

  13. Enabling Compassionate Health Care: Perils, Prospects and Perspectives

    Directory of Open Access Journals (Sweden)

    Russell Mannion

    2014-04-01

    Full Text Available There is an emerging consensus that caring and compassion are under threat in the frenetic environment of modern healthcare. Enabling and sustaining compassionate care requires not only a focus on the needs of the patient, but also on those of the care giver. As such, threats and exhortations to health professionals are likely to have limited and perverse effects and it is to the organisational and system arrangements which support staff that attention should shift. Any approach to supporting compassionate care may work for some services, for some patients and staff, some of the time. No single approach is likely to be a panacea. Unravelling the contexts within which different approaches are effectual will allow for more selective development of support systems and interventions.

  14. Social Work Practice in a Rural Health Care Setting: Farm Families.

    Science.gov (United States)

    Durham, Judith A.; Miah, M. Mizanur Rahman

    1993-01-01

    Literature review addresses the status of farm families; farm stresses and their effects; dysfunctional family relationships; and the unique attitudes, behaviors, and perceptions of rural culture toward social service intervention. By implementing coordinated service programs and initiating new legislation that addresses rural health care issues,…

  15. Health Care and Family and Consumer Sciences Education: An Integrative Approach.

    Science.gov (United States)

    Montgomery, Ruth; Rider, Mary Ellen

    2001-01-01

    Uses ecological systems theory as a foundation for integrating health care and its public policy issues into family and consumer sciences classrooms. Offers teachers alternative perspectives on consumer behavior changes and needs in heath care systems and policies. Contains 24 references. (JOW)

  16. "Being flexible and creative": a qualitative study on maternity care assistants' experiences with non-Western immigrant women.

    Science.gov (United States)

    Boerleider, Agatha W; Francke, Anneke L; van de Reep, Merle; Manniën, Judith; Wiegers, Therese A; Devillé, Walter L J M

    2014-01-01

    Several studies conducted in developed countries have explored postnatal care professionals' experiences with non-western women. These studies reported different cultural practices, lack of knowledge of the maternity care system, communication difficulties, and the important role of the baby's grandmother as care-giver in the postnatal period. However, not much attention has been paid in existing literature to postnatal care professionals' approaches to these issues. Our main objective was to gain insight into how Dutch postnatal care providers--'maternity care assistants' (MCA)--address issues encountered when providing care for non-western women. A generic qualitative research approach was used. Two researchers interviewed fifteen MCAs individually, analysing the interview material separately and then comparing and discussing their results. Analytical codes were organised into main themes and subthemes. MCAs perceive caring for non-western women as interesting and challenging, but sometimes difficult too. To guarantee the health and safety of mother and baby, they have adopted flexible and creative approaches to address issues concerning traditional practices, socioeconomic status and communication. Furthermore, they employ several other strategies to establish relationships with non-western clients and their families, improve women's knowledge of the maternity care system and give health education. Provision of postnatal care to non-western clients may require special skills and measures. The quality of care for non-western clients might be improved by including these skills in education and retraining programmes for postnatal care providers on top of factual knowledge about traditional practices.

  17. Family physicians' attitude and practice of infertility management at primary care--Suez Canal University, Egypt.

    Science.gov (United States)

    Eldein, Hebatallah Nour

    2013-01-01

    The very particular natures of infertility problem and infertility care make them different from other medical problems and services in developing countries. Even after the referral to specialists, the family physicians are expected to provide continuous support for these couples. This place the primary care service at the heart of all issues related to infertility. to improve family physicians' attitude and practice about the approach to infertility management within primary care setting. This study was conducted in the between June and December 2010. The study sample comprised 100 family physician trainees in the family medicine department and working in family practice centers or primary care units. They were asked to fill a questionnaire about their personal characteristics, attitude, and practice towards support, investigations, and treatment of infertile couples. Hundred family physicians were included in the study. They were previously received training in infertility management. Favorable attitude scores were detected among (68%) of physicians and primary care was considered a suitable place for infertility management among (77%) of participants. There was statistically significant difference regarding each of age groups, gender and years of experience with the physicians' attitude. There was statistically significant difference regarding gender, perceiving PHC as an appropriate place to manage infertility and attitude towards processes of infertility management with the physicians' practice. Favorable attitude and practice were determined among the study sample. Supporting the structure of primary care and evidence-based training regarding infertility management are required to improve family physicians' attitude and practice towards infertility management.

  18. Family physicians’ attitude and practice of infertility management at primary care - Suez Canal University, Egypt

    Science.gov (United States)

    Eldein, Hebatallah Nour

    2013-01-01

    Introduction The very particular natures of infertility problem and infertility care make them different from other medical problems and services in developing countries. Even after the referral to specialists, the family physicians are expected to provide continuous support for these couples. This place the primary care service at the heart of all issues related to infertility. The aim of the work: to improve family physicians' attitude and practice about the approach to infertility management within primary care setting. Methods This study was conducted in the between June and December 2010. The study sample comprised 100 family physician trainees in the family medicine department and working in family practice centers or primary care units. They were asked to fill a questionnaire about their personal characteristics, attitude, and practice towards support, investigations, and treatment of infertile couples. Results Hundred family physicians were included in the study. They were previously received training in infertility management. Favorable attitude scores were detected among (68%) of physicians and primary care was considered a suitable place for infertility management among (77%) of participants. There was statistically significant difference regarding each of age groups, gender and years of experience with the physicians′ attitude. There was statistically significant difference regarding gender, perceiving PHC as an appropriate place to manage infertility and attitude towards processes of infertility management with the physicians′ practice. Conclusion Favorable attitude and practice were determined among the study sample. Supporting the structure of primary care and evidence-based training regarding infertility management are required to improve family physicians' attitude and practice towards infertility management. PMID:24244792

  19. Fair equality of opportunity critically reexamined: the family and the sustainability of health care systems.

    Science.gov (United States)

    Engelhardt, H Tristram

    2012-12-01

    A complex interaction of ideological, financial, social, and moral factors makes the financial sustainability of health care systems a challenge across the world. One difficulty is that some of the moral commitments of some health care systems collide with reality. In particular, commitments to equality in access to health care and to fair equality of opportunity undergird an unachievable promise, namely, to provide all with the best of basic health care. In addition, commitments to fair equality of opportunity are in tension with the existence of families, because families are aimed at advantaging their own members in preference to others. Because the social-democratic state is committed to fair equality of opportunity, it offers a web of publicly funded entitlements that make it easier for persons to exit the family and to have children outside of marriage. In the United States, in 2008, 41% of children were born outside of wedlock, whereas, in 1940, the percentage was only 3.8%, and in 1960, 5%, with the further consequence that the social and financial capital generated through families, which aids in supporting health care in families, is diminished. In order to explore the challenge of creating a sustainable health care system that also supports the traditional family, the claims made for fair equality of opportunity in health care are critically reconsidered. This is done by engaging the expository device of John Rawls's original position, but with a thin theory of the good that is substantively different from that of Rawls, one that supports a health care system built around significant copayments, financial counseling, and compulsory savings, with a special focus on enhancing the financial and social capital of the family. This radical recasting of Rawls, which draws inspiration from Singapore, is undertaken as a heuristic to aid in articulating an approach to health care allocation that can lead past the difficulties of social-democratic policy.

  20. War and disaster in Sri Lanka: Implications for widows' family adjustment and perception of self-efficacy in caring for one's family.

    Science.gov (United States)

    Witting, Alyssa Banford; Lambert, Jessica; Wickrama, Thulitha

    2016-12-12

    The data for this study were collected in 2014 from widows in Eastern Sri Lanka whose spouses died in the civil war, tsunami, or from health-related problems. Conservation of resources (COR) theory was used as a lens to examine the extent to which war and tsunami-related damages and family problems predict variation in social support, family adjustment and a perception of self-efficacy in caring for one's family as reported by widowed women. We also investigated whether social support from the community and social support from family and friends mediated those relationships. Results of a path model fit to the data suggested variation in family adjustment to be negatively predicted by war-related family problems and positively predicted by the social support of friends and family. Additionally, a sense of self-efficacy in caring for one's family was found to be inversely predicted by war-related family problems and tsunami damages. Clinical, social and theoretical implications are discussed as well as directions for further research. © 2016 International Union of Psychological Science.

  1. Sacred Spaces: Religious and Secular Coping and Family Relationships in the Neonatal Intensive Care Unit.

    Science.gov (United States)

    Brelsford, Gina M; Ramirez, Joshua; Veneman, Kristin; Doheny, Kim K

    2016-08-01

    Preterm birth is an unanticipated and stressful event for parents. In addition, the unfamiliar setting of the intensive care nursery necessitates strategies for coping. The primary study objective of this descriptive study was to determine whether secular and religious coping strategies were related to family functioning in the neonatal intensive care unit. Fifty-two parents of preterm (25-35 weeks' gestation) infants completed the Brief COPE (secular coping), the Brief RCOPE (religious coping), and the Family Environment Scale within 1 week of their infant's hospital admission. This descriptive study found that parents' religious and secular coping was significant in relation to family relationship functioning. Specifically, negative religious coping (ie, feeling abandoned or angry at God) was related to poorer family cohesion and use of denial. These findings have relevance for interventions focused toward enhancing effective coping for families. Further study of religious and secular coping strategies for neonatal intensive care unit families is warranted in a larger more diverse sample of family members.

  2. Paediatric nurses' perceptions and practices of family-centred care in Saudi hospitals: A mixed methods study.

    Science.gov (United States)

    Alabdulaziz, Hawa; Moss, Cheryle; Copnell, Beverley

    2017-04-01

    Family-centred care is widely accepted as the underlying philosophy of paediatric nursing. Studies of family-centred care have mainly been conducted in western countries and little is known of its practice in other contexts. No studies have been undertaken in the Middle East. To explore family-centred care in the Saudi context from the perspectives of paediatric nurses. A mixed methodology was utilised with an explanatory sequential design. In the quantitative phase a convenience sample of 234 nurses from six hospitals in Jeddah, Saudi Arabia completed the Family Centred Care Questionnaire. The qualitative phase took place in one hospital and involved 140h of non-participant observation of paediatric nurses' practice. A convenience sample of 14 nurses was involved. Additionally, 10 face-to-face semi-structured interviews were conducted with key staff members. A purposeful sample of 10 nurses was involved. The findings from both phases were integrated in the final analysis. The survey results indicated that participants identified most elements of family-centred care as necessary for its practice. They were less likely to incorporate them into their practice (pworked with the elements as a set of core tasks. In the current study, there were similarities between what has been found in the Saudi context and findings from other studies using the same tool in western contexts. There is general agreement regarding the differences between theory and practice. Nurses do believe and acknowledge the importance of family-centred care; however, they struggle with practising this model in their everyday work. In the current study, many factors contributed to this issue, including language barriers, communication issues, cultural issues and hospital policies. Western concepts of family-centred care appear to be accepted by paediatric nurses in Saudi Arabia. However, full adoption of family-centred care in keeping with western values is likely not to be appropriate or successful

  3. Using the "customer service framework" to successfully implement patient- and family-centered care.

    Science.gov (United States)

    Rangachari, Pavani; Bhat, Anita; Seol, Yoon-Ho

    2011-01-01

    Despite the growing momentum toward patient- and family-centered care at the federal policy level, the organizational literature remains divided on its effectiveness, especially in regard to its key dimension of involving patients and families in treatment decisions and safety practices. Although some have argued for the universal adoption of patient involvement, others have questioned both the effectiveness and feasibility of patient involvement. In this article, we apply a well-established theoretical perspective, that is, the Service Quality Model (SQM) (also known as the "customer service framework") to the health care context, to reconcile the debate related to patient involvement. The application helps support the case for universal adoption of patient involvement and also question the arguments against it. A key contribution of the SQM lies in highlighting a set of fundamental service quality determinants emanating from basic consumer service needs. It also provides a simple framework for understanding how gaps between consumer expectations and management perceptions of those expectations can affect the gap between "expected" and "perceived" service quality from a consumer's perspective. Simultaneously, the SQM also outlines "management requirements" for the successful implementation of a customer service strategy. Applying the SQM to the health care context therefore, in addition to reconciling the debate on patient involvement, helps identify specific steps health care managers could take to successfully implement patient- and family-centered care. Correspondingly, the application also provides insights into strategies for the successful implementation of policy recommendations related to patient- and family-centered care in health care organizations.

  4. Physician-Assisted Suicide and Other Forms of Euthanasia in Islamic Spiritual Care.

    Science.gov (United States)

    Isgandarova, Nazila

    2015-12-01

    The muteness in the Qur'an about suicide due to intolerable pain and a firm opposition to suicide in the hadith literature formed a strong opinion among Muslims that neither repentance nor the suffering of the person can remove the sin of suicide or mercy 'killing' (al-qatl al-rahim), even if these acts are committed with the purpose of relieving suffering and pain. Some interpretations of the Islamic sources even give advantage to murderers as opposed to people who commit suicide because the murderers, at least, may have opportunity to repent for their sin. However, people who commit suicide are 'labeled' for losing faith in the afterlife without a chance to repent for their act. This paper claims that Islamic spiritual care can help people make decisions that may impact patients, family members, health care givers and the whole community by responding to questions such as 'What is the Islamic view on death?', 'What is the Islamic response to physician-assisted suicide and other forms of euthanasia?', 'What are the religious and moral underpinnings of these responses in Islam?' © The Author(s) 2015.

  5. [Continuous medical education of general practitioners/family doctors in chronic wound care].

    Science.gov (United States)

    Sinozić, Tamara; Kovacević, Jadranka

    2014-10-01

    A number of healthcare professionals, specialists in different fields and with different levels of education, as well as non-healthcare professionals, are involved in the care of chronic wound patients, thus forming a multidisciplinary team that is not only responsible for the course and outcome of treatment, but also for the patient quality of life. Family doctor is also member of the team the task of which is to prevent, diagnose, monitor and anticipate complications and relapses, as well as complete recovery of chronic wound patients, with the overall care continuing even after the wound has healed, or is involved in palliative care. A family medicine practitioner with specialized education and their team of associates in the primary health care, along with material conditions and equipment improvement, can provide quality care for patients with peripheral cardiovascular diseases and chronic wounds, organized according to the holistic approach. It is essential that all professional associations of family medicine as well as professional associations of other specialties - fields that are involved in wound prevention and treatment - be included in developing the continuous medical education program. The benefits of modern information technology should be used to good advantage. The education should be adapted to the needs of family practitioners in terms of the form, place, time, volume, financial affordability and choice of topic. The interest shown in team education should be transformed into specialized programs in the creation of which it is essential to include both physicians and nurses and their respective professional associations. Special attention should be paid to education and training of young doctors/nurses, those with less work experience, those that have not yet been part of such education, those that lack experience in working with wound patients, those whose teams deal mostly with elderly patients, and also residents in family medicine and

  6. Guidelines for a Comprehensive Care Program to Ostomized Patients and Families: a Nursing proposal

    Directory of Open Access Journals (Sweden)

    Paula Alvarenga de Figueiredo

    2016-01-01

    Full Text Available Objectives: describe care needs and demands that mark the discursive practices of ostomized clients and family members and discuss guidelines for a comprehensive care program to ostomized clients and their families, organized by macrosociological categories. Method: Creative and Sensitive, involving 17 ostomized subjects and family members at a municipal outpatient clinic. The ethical aspects were complied with. A characterization form was used, as well as Creativity and Sensitivity Dynamics: "speaking map", "body-knowledge" and "calendar". Critical Discourse Analysis was applied. Results: the health needs and care demands of the ostomized patients and their family members, in their multiple dimensions, were constituted in the home and community, outpatient and social context, implying new orientations for nursing care. The unveiling of the data brought elements that constituted guidelines, in a macrosociological approach, to achieve the expanded integrality of nursing care. Conclusion: the ostomized clients are unique in their genre/peculiar from Latin sui generis, calling for strategies that respond to and distinguish their specificities. Elaborating a Public Health Policy that improves and reorganizes the care demands, taking into account these individual biopsychosocial and spiritual aspects, is a possible and irrevocable target in the attempt to achieve better conditions of health and wellbeing.

  7. Caring about dying persons and their families: Interpretation, practice and emotional labour.

    Science.gov (United States)

    Funk, Laura M; Peters, Sheryl; Roger, Kerstin Stieber

    2018-02-20

    The importance of emotional support for dying persons and their families has been well established, yet we know less about how care workers understand emotional processes related to death and dying, or how these understandings are connected to care practices and emotional labour at the end of life. The aim of this study was to explore how healthcare workers interpret and respond to emotional needs of dying persons and their families. Qualitative data were collected between 2013 and 2014 through in-depth, in-person interviews with 14 nurses and 12 healthcare aides in one Western Canadian city. Transcripts were analysed using an inductive, interpretive thematic coding approach and the analytic lens of emotional labour. Dominant interpretive frames of a "good death" informed participants' emotionally supportive practice. This included guiding patients and families to "open up" about their emotions to activate the grief process. There was concern that incomplete grieving would result in anger being directed towards care staff. The goal of promoting emotional sharing informed the work of "caring about." Although palliative philosophies opened up moral and professional space for "caring about" in the context of organisational norms which often discouraged these practices, the tension between the two, and the lack of time for this work, may encourage surface expressions rather than authentic emotional care. © 2018 John Wiley & Sons Ltd.

  8. Participation of the family in hospital-based palliative cancer care: perspective of nurses

    Directory of Open Access Journals (Sweden)

    Marcelle Miranda da Silva

    Full Text Available The objective was to understand the perspective of nurses about the participation of the family in palliative cancer care and to analyze the nursing care strategies to meet their needs. Descriptive and qualitative research, conducted at the National Cancer Institute between January and March 2013, with 17 nurses. Elements of the Roy Adaptation Model were used for the interpretation of the data. Two categoriesemergedfrom the thematic analysis: perspective of nurses about the presence and valuation of family in the hospital; and appointing strategies to encourage family participation in care and meet their needs. This participation is essentialand represents a training opportunity for the purpose of homecare. Nurses create strategies to encourage it and seek to meet the needs. The results contribute to promote the family adaptation and integrity, in order to balance the dependent and independent behaviors, aimingfor quality of life and comfort. Further studies are neededdue to the challenges of the specialty.

  9. Patients’ and Family Members’ Views on Patient-Centered Communication During Cancer Care

    Science.gov (United States)

    Mazor, Kathleen M.; Beard, Renee L.; Alexander, Gwen L.; Arora, Neeraj K.; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M.; Lemay, Celeste A.; Robinson, Brandi E.; Roblin, Douglas W.; Walsh, Kathleen; Street, Richard L.; Gallagher, Thomas H.

    2013-01-01

    Objectives To explore patients’ and family members’ views on communication during cancer care, and to identify those aspects of clinician-patient communication which were most important to patients and family members. Methods We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Results Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient’s experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, while excellent listening could foster the relationship. Information exchange and relationship were also integral to decision making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients’ needs beyond the immediate medical encounter were valued. Conclusions The complexity of cancer care today suggest that efforts to improve communication must be multi-level, acknowledging and addressing patient, clinician, organizational and policy barriers and facilitators. Measurement tools are needed to assess cancer patients’ and family members’ experiences with communication over the course of cancer care in order to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. PMID:23780672

  10. Patients' and family members' views on patient-centered communication during cancer care.

    Science.gov (United States)

    Mazor, Kathleen M; Beard, Reneé L; Alexander, Gwen L; Arora, Neeraj K; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M; Lemay, Celeste A; Robinson, Brandi E; Roblin, Douglas W; Walsh, Kathleen; Street, Richard L; Gallagher, Thomas H

    2013-11-01

    To explore patients' and family members' views on communication during cancer care and to identify those aspects of clinician-patient communication which were most important to patients and family members. We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient's experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, whereas excellent listening could foster the relationship. Information exchange and relationship were also integral to decision-making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients' needs beyond the immediate medical encounter were valued. The complexity of cancer care today suggests that efforts to improve communication must be multilevel, acknowledging and addressing patient, clinician, organizational and policy barriers, and facilitators. Measurement tools are needed to assess cancer patients' and family members' experiences with communication over the course of cancer care to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. Copyright © 2013 John Wiley & Sons, Ltd.

  11. Family Medicine Maternity Care Call to Action: Moving Toward National Standards for Training and Competency Assessment.

    Science.gov (United States)

    Magee, Susanna R; Eidson-Ton, W Suzanne; Leeman, Larry; Tuggy, Michael; Kim, Thomas O; Nothnagle, Melissa; Breuner, Joseph; Loafman, Mark

    2017-03-01

    Maternity care is an integral part of family medicine, and the quality and cost-effectiveness of maternity care provided by family physicians is well documented. Considering the population health perspective, increasing the number of family physicians competent to provide maternity care is imperative, as is working to overcome the barriers discouraging maternity care practice. A standard that clearly defines maternity care competency and a systematic set of tools to assess competency levels could help overcome these barriers. National discussions between 2012 and 2014 revealed that tools for competency assessment varied widely. These discussions resulted in the formation of a workgroup, culminating in a Family Medicine Maternity Care Summit in October 2014. This summit allowed for expert consensus to describe three scopes of maternity practice, draft procedural and competency assessment tools for each scope, and then revise the tools, guided by the Family Medicine and OB/GYN Milestones documents from the respective residency review committees. The summit group proposed that achievement of a specified number of procedures completed should not determine competency; instead, a standardized competency assessment should take place after a minimum number is performed. The traditionally held required numbers for core procedures were reassessed at the summit, and the resulting consensus opinion is proposed here. Several ways in which these evaluation tools can be disseminated and refined through the creation of a learning collaborative across residency programs is described. The summit group believed that standardization in training will more clearly define the competencies of family medicine maternity care providers and begin to reduce one of the barriers that may discourage family physicians from providing maternity care.

  12. Quotidian of accompanying family members in an environment of care: the emergence of hospital tribes

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    Silvia da Silva Santos Passos

    2016-06-01

    Full Text Available ABSTRACT OBJECTIVE Understand the quotidian relationships of accompanying family members in an environment of care, which are close to the metaphor of a tribe in hospital environment. METHODQualitative study with data gathered from semi-structured interviews and observations with 16 family members accompanying hospitalized individuals with dependence on self-care. Data were submitted to thematic analysis, and analyzed through the metaphor of "tribe" proposed by comprehensive sociology. RESULTS Family members build up social clusters around caring, where we find traits typical of tribes: emotional ambience; solidarity based on links of sympathy and mutual assistance; an affectual nebula in the process of interaction; a logic of fusion in tactile relations; and communion/religiosity in the process of connecting in a collective identity. CONCLUSION In the presence of tragedy, families build social clusters similar to tribes having care as a totem.

  13. Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers.

    Science.gov (United States)

    DePasquale, Nicole; Bangerter, Lauren R; Williams, Jessica; Almeida, David M

    2016-12-01

    This study examines how certified nursing assistants (CNAs) balancing family caregiving roles-child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)-utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  14. [Advance directives, a tool to humanize care].

    Science.gov (United States)

    Olmari-Ebbing, M; Zumbach, C N; Forest, M I; Rapin, C H

    2000-07-01

    The relationship between the patient and a medical care giver is complex specially as it implies to the human, juridical and practical points of view. It depends on legal and deontological considerations, but also on professional habits. Today, we are confronted to a fundamental modification of this relationship. Professional guidelines exist, but are rarely applied and rarely taught in universities. However, patients are eager to move from a paternalistic relationship to a true partnership, more harmonious and more respectful of individual values ("value based medicine"). Advance directives give us an opportunity to improve our practices and to provide care consistent with the needs and wishes of each patient.

  15. Dire deadlines: coping with dysfunctional family dynamics in an end-of-life care setting.

    Science.gov (United States)

    Holst, Lone; Lundgren, Maren; Olsen, Lutte; Ishøy, Torben

    2009-01-01

    Working in a hospice and being able to focus on individualized, specialized end-of-life care is a privilege for the hospice staff member. However, it also presents the hospice staff with unique challenges. This descriptive study is based upon two cases from an end-of-life care setting in Denmark, where dysfunctional family dynamics presented added challenges to the staff members in their efforts to provide optimal palliative care. The hospice triad--the patient, the staff member and the family member--forms the basis for communication and intervention in a hospice. Higher expectations and demands of younger, more well-informed patients and family members challenge hospice staff in terms of information and communication when planning for care. The inherent risk factors of working with patients in the terminal phase of life become a focal point in the prevention of the development of compassion fatigue among staff members. A series of coping strategies to more optimally manage dysfunctional families in a setting where time is of the essence are then presented in an effort to empower the hospice team, to prevent splitting among staff members, and to improve quality of care.

  16. Long-term care: the family, post-modernity, and conflicting moral life-worlds.

    Science.gov (United States)

    Engelhardt, H Tristram

    2007-01-01

    Long-term care is controversial because it involves foundational disputes. Some are moral-economic, bearing on whether the individual, the family, or the state is primarily responsible for long-term care, as well as on how one can establish a morally and financially sustainable long-term-care policy, given the moral hazard of people over-using entitlements once established, the political hazard of media democracies promising unfundable entitlements, the demographic hazard of relatively fewer workers to support those in need of long-term care, the moral hazard to responsibility of shifting accountability to third parties, and the bureaucratic hazard of moving from individual and family choice to bureaucratic oversight. These disputes are compounded by controversies regarding the nature of the family (Is it to be regarded primarily as a socio-biological category, a fundamental ontological category of social reality, or a construct resulting from the consent of the participants?), as well as its legal and moral autonomy and authority over its members. As the disputes show, there is no common understanding of respect and human dignity that will easily lead out of these disputes. The reflections on long-term care in this issue underscore the plurality of moralities defining bioethics.

  17. Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

    Science.gov (United States)

    Marsac, Meghan L; Kindler, Christine; Weiss, Danielle; Ragsdale, Lindsay

    2018-05-18

    Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Systematic review. Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

  18. Respite Child Care in California: Alternatives for At-Risk Families. A Report from the California Children's Council.

    Science.gov (United States)

    Weinstein, Vivian; Siegel, Patty

    Respite child care is a form of short-term care provided in a family day care home or a child care center for the purpose of helping families that are experiencing stress. At an average cost of $300 to $400 per month, respite care is cost effective. Since 1983, California's child care resource and referral agencies have administered a small…

  19. COMBINING WORK WITH CARING FOR ELDERLY FAMILY MEMBER IN POLAND (CHOSEN ISSUES

    Directory of Open Access Journals (Sweden)

    Lukasz Jurek

    2016-07-01

    Full Text Available The problem of combining work with caring for elderly family members is becoming an increasingly important matter due to demographic (population ageing and social (increasing economic activity of women changes that are currently in progress. The aim of the article is to present selected issues related to the professional situation of people taking care for their elderly family members. The primary focus of the study is reasons for not working of non-working caregivers, and professional problems of working caregivers

  20. Family Adversity and Resilience Measures in Pediatric Acute Care Settings.

    Science.gov (United States)

    O'Malley, Donna M; Randell, Kimberly A; Dowd, M Denise

    2016-01-01

    Adverse childhood experiences (ACEs) impact health across the life course. The purpose of this study was to identify caregiver ACEs, current adversity, and resilience in families seeking care in pediatric acute care settings. Study aims included identifying demographic characteristics, current adversities, and resilience measures associated with caregiver ACEs ≥4. A cross-sectional survey study design was used and a convenience sample (n = 470) recruited at emergency and urgent care settings of a large Midwest pediatric hospital system. Measures were self-reported. The original 10-item ACEs questionnaire measured caregiver past adversity. Current adversity was measured using the 10-item IHELP. The six-item Brief Resiliency Scale measured resilience, and WHO-5 Well-Being Index was used to measure depressive affect. Compared to participants with ACEs score of 0-3 participants with ACEs ≥4 were more likely to have multiple current adversities, increased risk of depression, and lower resilience. Caregivers using pediatric acute care settings carry a high burden of ACEs and current adversities. Caregiver ACEs are associated with current child experiences of adversity. Caregivers socioeconomic status and education level may not be an accurate indicator of a family's risks or needs. Pediatric acute care settings offer opportunities to access, intervene, and prevent childhood adversity. © 2016 Wiley Periodicals, Inc.

  1. (Transnational intergenerational care contract. Attitudes and practises of transnational families towards elderly care

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    Łukasz Krzyżowski

    2015-02-01

    Full Text Available In this article I am focused on the functioning of the transnational intergenerational care system. This is dynamic,as it is bound up with the life cycle of the transnational family, and on the one hand, denotes practices associatedwith any assistance parents provide to their migrant children and on the other – in the event of elderly peoplebeing faced with health and basic living problems – with the phenomenon of migrants caring for their parentsin old age. The transnational system of care also incorporates the involvement (or lack of involvement, as faras this triggers consequences that are of relevance here of relatively immobile people, for example the siblingsof migrants who provide (or not, as the case may be domestic support for their elderly parents. In this articleI adopt the thesis that migrants who function in different care regimes change not only their own but also theirparents’ attitudes towards elderly care.

  2. Residential respite care is associated with family carers experiencing financial strain.

    Science.gov (United States)

    Aggar, Christina; Ronaldson, Susan; Cameron, Ian D

    2014-06-01

    Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (≥70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (β = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. There is a need to consider carers' financial barriers and concerns in regards to the utilisation of respite care services. © 2012 The Authors. Australasian Journal on Ageing © 2012 ACOTA.

  3. The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

    Directory of Open Access Journals (Sweden)

    Engeser Peter

    2007-05-01

    Full Text Available Abstract Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS, pain (VAS, and burden for family caregivers (BSFC. The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT’, registration number: ISRCTN78021852.

  4. Transnational caregiving: Part 1, caring for family relations across nations.

    Science.gov (United States)

    Dhar, V Erica

    2011-01-01

    This article concerns how globalization and the aging of the world's population are affecting the already complex issue of intergenerational transnational caregiving. Globalization has caused an increase in workforce mobility with large numbers of individuals seeking employment overseas. This, coupled with increased longevity globally, has resulted in many workers leaving their elderly parents in need of care in their home countries. This has spawned caregiving across national borders, or caring for family relations across nations. Currently in the United States, not enough emphasis is given to family caregiving. Data compiled by AARP and the National Alliance for Caregiving estimate the economic value for this group of family caregivers in 2007 to be $375 billion, accounting for 34-52 million family caregivers per given year. This does not include those families who are transnational caregivers. The seminal work in this emerging field has been done by social anthropologists Loretta Baldassar, Cora Velekoop Baldock, and Raelene Wilding, who have defined the components of transnational caregiving based on an ethnographic study using qualitative data to study nine immigrant communities in Western Australia. Although their research focused on caregiving from a distance, additional work has been added to the discussion by introducing the element of "care drain" and further cultural perspectives. Therefore, this research is an exploratory study on intergenerational transnational caregiving within the context of the changing world and its demographics. Within the context of globalization and global aging, the following questions are addressed: What is the significance of family caregiving? What is a transnational? How has technology changed "transnationalism" today? What are the elements that comprise transnational caregiving? How does culture play a role in transnational caregiving? What are some of the national initiatives undertaken by governments to aid in workforce

  5. The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: findings from an evaluation project.

    Science.gov (United States)

    Ingleton, Christine; Chatwin, John; Seymour, Jane; Payne, Sheila

    2011-07-01

    To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. © 2011 Blackwell Publishing Ltd.

  6. Who steers the ship? Rural family physicians' views on collaborative care models for patients with dementia.

    Science.gov (United States)

    Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew

    2014-01-01

    Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals.

  7. A mixed methods exploration of family involvement in medical care for older adults with serious mental illness.

    Science.gov (United States)

    Aschbrenner, Kelly A; Pepin, Renee; Mueser, Kim T; Naslund, John A; Rolin, Stephanie A; Faber, Marjan J; Bartels, Stephen J

    2014-01-01

    Many older persons with serious mental illness (SMI) suffer from high rates of comorbid medical conditions. Although families play a critical role in psychiatric illness management among adults with SMI, their contributions to improving health outcomes in this population has received little attention. This study explored family involvement in medical care for older adults with SMI. This mixed methods study involved analysis of quantitative data collected from older adults with SMI and cardiovascular risk (n = 28) participating in a pilot study of an intervention designed to improve patient-centered primary care augmented by qualitative interviews with their relatives (n = 13) to explore family involvement in medical care. Approximately 89% of older adults with SMI reported family involvement in at least one aspect of their medical care (e.g., medication reminders, medical decision making). However, many family members reported that they were rarely involved in their relative's medical visits, and most did not perceive a need to be involved during routine care. Family members identified obesity as their relative's primary health concern and many wanted guidance from providers on effective strategies for supporting weight loss. Although many family members did not perceive a need to be involved in their relative's routine medical visits, they expressed interest in talking with providers about how to help their relative change unhealthy behaviors. Educating patients, families, and providers about the potential benefits of family involvement in medical care, including routine medical visits for persons with SMI and cardiovascular health risk may promote patient- and family-centered collaboration in this high-risk population.

  8. Progressively engaging: constructing nurse, patient, and family relationships in acute care settings.

    Science.gov (United States)

    Segaric, Cheryl Ann; Hall, Wendy A

    2015-02-01

    In this grounded theory study, informed by symbolic interactionism, we explain how nurses, patients, and family members construct relationships in acute care settings, including managing effects of work environments. We recruited participants from 10 acute care units across four community hospitals in a Western Canadian city. From 33 hr of participant observation and 40 interviews with 13 nurses, 17 patients, and 10 family members, we constructed the basic social-psychological process of progressively engaging. Nurses, patients, and family members approached constructing relationships through levels of engagement, ranging from perspectives about "just doing the job" to "doing the job with heart." Progressively engaging involved three stages: focusing on tasks, getting acquainted, and building rapport. Workplace conditions and personal factors contributed or detracted from participants' movement through the stages of the process; with higher levels of engagement, participants experienced greater satisfaction and cooperation. Progressively engaging provides direction for how all participants in care can invest in relationships. © The Author(s) 2014.

  9. Early Childhood Behavioral Health Integration in Pediatric Primary Care: Serving Refugee Families in the Healthy Steps Program

    Science.gov (United States)

    Buchholz, Melissa; Fischer, Collette; Margolis, Kate L.; Talmi, Ayelet

    2016-01-01

    Primary care settings are optimal environments for providing comprehensive, family-centered care to young children and their families. Primary care clinics with integrated behavioral health clinicians (BHCs) are well-positioned to build trust and create access to care for marginalized and underserved populations. Refugees from around the world are…

  10. Masculinity and urogenital cancer: sensitive issues in health care.

    Science.gov (United States)

    Nobis, Regina; Sand, Inger; Elofsson, Kristina

    2007-02-01

    The aim of this literature review was to analyse the approaches adopted by patients, health professionals, spouses and other care-givers towards sensitive issues related to male urogenital cancer, and to describe how these findings can be applied in health care practice. The findings revealed five identifiable domains, namely 'the barrier to talking', 'the barrier of sensitivity', 'the barrier of masculinity', 'the barrier to seeking health care' and 'the communicative barrier'. The conclusion was that the phenomenon of a barrier is strongly connected with hegemonic masculinity. The review of literature confirmed that, for many men, talking about genitally-related health problems is not easy and that health care professionals need to learn more about gender and masculinity in order to address urogenitally sensitive issues.

  11. Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

    Science.gov (United States)

    Stacpoole, Min; Hockley, Jo; Thompsell, Amanda; Simard, Joyce; Volicer, Ladislav

    2017-10-01

    Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to

  12. Cultural influences upon advance care planning in a family-centric society.

    Science.gov (United States)

    Tay, Keson; Yu Lee, Rachel Jia; Sim, Shin Wei; Menon, Sumytra; Kanesvaran, Ravindran; Radha Krishna, Lalit Kumar

    2017-12-01

    Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met. To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children. Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations. Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on

  13. A purposeful Yet Nonimposing Approach: How Japanese Home Care Nurses Establish Relationships With Older Clients and Their Families.

    Science.gov (United States)

    Iwasaki, Takako; Yamamoto-Mitani, Noriko; Sato, Kana; Yumoto, Yoshie; Noguchi-Watanabe, Maiko; Ogata, Yasuko

    2017-11-01

    Relationship development is crucial to nursing practice with families. However, little is known about the process of building relationships with multiple family members in home care settings and in various cultures. The objective of this study was to explore the experiences of home care nurses about how they established relationships with older clients and their families in Japan. Grounded theory was used to guide the research. Twenty-three expert home care nurses participated in semistructured interviews concerning their family nursing practice. The establishment of relationships with clients/family members was based on a purposeful yet nonimposing approach composed of four aspects: keeping a mindful distance from the family, not being a threat to family life, being a comfortable neighbor, and gaining trust as a competent nurse. Through a purposeful nonimposing approach, Japanese home care nurses promoted and nurtured nurse-family relationships and became involved in the life of the family. These findings provide a useful foundation to guide practice with families and grow knowledge about the process of establishing relationships with multiple family members in home settings.

  14. Evaluating child care in the Family Health Strategy.

    Science.gov (United States)

    da Silva, Simone Albino; Fracolli, Lislaine Aparecida

    2016-01-01

    to evaluate the healthcare provided to children under two years old by the Family Health Strategy. evaluative, quantitative, cross-sectional study that used the Primary Care Assessment Tool - Child Version for measuring the access, longitudinality, coordination, integrality, family orientation and community orientation. a total of 586 adults responsible for children under two years old and linked to 33 health units in eleven municipalities of the state of Minas Gerais, Brazil, were interviewed. The evaluation was positive for the attributes longitudinality and coordination, and negative for access, integrality, Family orientation and community orientation. there are discrepancies between health needs of children and what is offered by the service; organizational barriers to access; absence of counter-reference; predominance of curative and long-standing and individual preventive practices; verticalization in organization of actions; and lack of good communication between professionals and users.

  15. Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

    Directory of Open Access Journals (Sweden)

    Shevaun Nadin

    2017-01-01

    Full Text Available Rationale. Improving end-of-life care (EOLC in long-term care (LTC homes requires quality measurement tools that assess families’ satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP Lite Questionnaire for use in LTC to measure families’ perceptions of the EOLC experience and to be self-administered. Methods and Results. Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. Phase 2. The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. Phase 3. The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach’s alpha coefficients (range: .88–.94 indicated internal consistency. Conclusion. This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC that can be used to measure families’ perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.

  16. The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life.

    Science.gov (United States)

    Martz, Kim; Morse, Janice M

    2017-06-01

    Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

  17. Family stress and posttraumatic stress: the impact of military operations on military health care providers.

    Science.gov (United States)

    Gibbons, Susanne W; Barnett, Scott D; Hickling, Edward J

    2012-08-01

    This study uses data from the 2005 Department of Defense Survey of Health-Related Behaviors Among Military Personnel to examine relationships between family stress and posttraumatic stress symptoms across 4 subgroups of Operation Iraqi Freedom-deployed (i.e., war in Iraq) or Operation Enduring Freedom-deployed (i.e., war in Afghanistan) active-duty military service members. Results suggest the following: (a) the greatest positive correlation of family stressors with posttraumatic stress symptoms was found within the military health care officer group, and (b) these military health care officers differed in family stressors mediating posttraumatic stress with divorce and financial problems accounting for significant and unique portions of the variance. Implications for care of service members and their families are discussed. Published by Elsevier Inc.

  18. Experiences of adults with high-care needs and their family members with housing and support pathways in Australia.

    Science.gov (United States)

    McIntyre, Deborah; Fleming, Jennifer; Foster, Michele; Tweedy, Sean

    2017-09-01

    Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support. Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed. Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) "the fight, the battle and the war"; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships. Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles. Implications for Rehabilitation Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions. Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability. Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant "battle". Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.

  19. Family members' involvement in psychiatric care: experiences of the healthcare professionals' approach and feeling of alienation.

    Science.gov (United States)

    Ewertzon, M; Lützén, K; Svensson, E; Andershed, B

    2010-06-01

    The involvement of family members in psychiatric care is important for the recovery of persons with psychotic disorders and subsequently reduces the burden on the family. Earlier qualitative studies suggest that the participation of family members can be limited by how they experience the professionals' approach, which suggests a connection to the concept of alienation. Thus, the aim of this study was in a national sample investigate family members' experiences of the psychiatric health care professionals' approach. Data were collected by the Family Involvement and Alienation Questionnaire. The median level and quartiles were used to describe the distributions and data were analysed with non-parametric statistical methods. Seventy family members of persons receiving psychiatric care participated in the study. The results indicate that a majority of the participants respond that they have experiencing a negative approach from the professionals, indicating lack of confirmation and cooperation. The results also indicate that a majority of the participants felt powerlessness and social isolation in the care being provided, indicating feelings of alienation. A significant but weak association was found between the family members' experiences of the professionals' approach and their feelings of alienation.

  20. Client and family engagement in rehabilitation research: a framework for health care organizations.

    Science.gov (United States)

    Anderson, James; Williams, Laura; Karmali, Amir; Beesley, Lori; Tanel, Nadia; Doyle-Thomas, Krissy; Sheps, Gideon; Chau, Tom

    2018-04-01

    To describe the development and implementation of an organizational framework for client and family-centered research. Case report. While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs. Implications for rehabilitation Family engagement in rehabilitation research •Rehabilitation research is crucial to the development and improvement of rehabilitative care. •The relevance, appropriateness, and accountability of research to patients, clients and families could be improved. •Engaging clients and families as partners in all aspects of the research process is one way to address this problem. •In this paper, we describe a framework for engaging clients and families in research at the organizational level.

  1. Facilitating State-Wide Collaboration around Family Planning Care in the Context of Zika.

    Science.gov (United States)

    Dehlendorf, Christine; Gavin, Loretta; Witt, Jacki; Moskosky, Susan

    Family planning providers have an important role to play in the response to the public health challenge posed by Zika. In the United States, there are high rates of unintended pregnancy, especially in states most at risk for mosquito-borne transmission of the Zika virus. This paper describes efforts by eight of these states (Arizona, California, Florida, Georgia, Louisiana, Mississippi, South Carolina, and Texas) to build capacity for quality family planning care in the context of Zika. Drawing on resources developed by the Office of Population Affairs, including a toolkit for family planning care in the context of Zika, agencies and stakeholders involved in the family planning delivery system in Southern states at risk for mosquito-borne transmission met over several months in the summer of 2016 to coordinate efforts to respond to the risk of Zika in their jurisdictions. Through proactive communication and collaboration, states took steps to integrate Zika-related family planning care, including screening for Zika risk and providing appropriate, client-centered counseling. Challenges faced by the states included not having family planning included as a component of their state's Zika response effort, limited funding for family planning activities, and the need for robust communication networks between multiple state and federal agencies. The efforts described in this paper can help other states to integrate family planning into their Zika response. This is relevant to all states; even when mosquito-borne transmission is not occurring or expected, all states experience travel-related and sexually transmitted Zika infections. Copyright © 2017 Jacobs Institute of Women's Health. All rights reserved.

  2. Association between work-family conflict and musculoskeletal pain among hospital patient care workers.

    Science.gov (United States)

    Kim, Seung-Sup; Okechukwu, Cassandra A; Buxton, Orfeu M; Dennerlein, Jack T; Boden, Leslie I; Hashimoto, Dean M; Sorensen, Glorian

    2013-04-01

    A growing body of evidence suggests that work-family conflict is an important risk factor for workers' health and well-being. The goal of this study is to examine association between work-family conflict and musculoskeletal pain among hospital patient care workers. We analyzed a cross-sectional survey of 1,119 hospital patient care workers in 105 units in two urban, academic hospitals. Work-family conflict was measured by 5-item Work-Family Conflict Scale questionnaire. Multilevel logistic regression was applied to examine associations between work-family conflict and self-reported musculoskeletal pain in the past 3 months, adjusting for covariates including work-related psychosocial factors and physical work factors. In fully adjusted models, high work-family conflict was strongly associated with neck or shoulder pain (OR: 2.34, 95% CI: 1.64-3.34), arm pain (OR: 2.79, 95% CI: 1.64-4.75), lower extremity pain (OR: 2.20, 95% CI: 1.54-3.15) and any musculoskeletal pain (OR: 2.45, 95% CI: 1.56-3.85), and a number of body areas in pain (OR: 2.47, 95% CI: 1.82-3.36) in the past 3 months. The association with low back pain was attenuated and became non-significant after adjusting for covariates. Given the consistent associations between work-family conflict and self-reported musculoskeletal pains, the results suggest that work-family conflict could be an important domain for health promotion and workplace policy development among hospital patient care workers. Copyright © 2012 Wiley Periodicals, Inc.

  3. Family solidarity and informal care: the case of care for people with dementia.

    Science.gov (United States)

    ter Meulen, Ruud; Wright, Katharine

    2012-09-01

    According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. © 2012 Blackwell Publishing Ltd.

  4. [Meaning of family confrontation for nurses of intensive care units for adult people - Medellín 2013].

    Science.gov (United States)

    Montoya Tamayo, D P; Monsalve Ospina, T P; Forero Pulido, C

    2015-01-01

    To comprehend the meaning nurses give to family confrontation, from their experiences while patients are in adult intensive care units in Medellin 2013. A qualitative research study was carried out using a phenomenological approach and theoretical convenience sampling of subjects was used. Interviews with open questions were conducted with nurses that worked in different intensive care units in the city of Medellin, with more than one year of experience in these units. The information was coded and categorised to perform the analysis, and some concept maps were created for the final report. This study showed that nurses focus their care on the critical patient and not on the patient's family. They considered that there is family confrontation when its members comprehend the processes that are carried out in the intensive care unit, and can contribute to the patient's care, while if families do not have confrontations, it is because they do not understand the process, or feel desperate or are absent. The interventions that nurses consider must be done to help in the family confrontation are: information, interdisciplinary support, visits, and companionship. For the nurses, family confrontation means that family members understand, comprehend, accept, know, bear and go on with the situation; therefore, they can make good decisions regarding the patient's care in the adult intensive care units. Copyright © 2015 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

  5. Giver kvinder og mænd forskellige karakterer? Køn og karaktergivning på universitetet

    Directory of Open Access Journals (Sweden)

    Lotte Bøgh Andersen

    2014-09-01

    Full Text Available Er kvindelige universitetsansatte mere orienteret mod at hjælpe den enkelte studerende end deres mandlige kolleger, og giver de derfor bedre karakterer? Artiklen undersøger dette i en panelundersøgelse af bedømmelsesadfærd på to danske universitetsinstitutter mellem 2004 og 2010. På baggrund af spørgeskemaer fra 78 universitetslærere kombineret med registerdata fra 381 eksaminationer er svarene ”ja” og ”nej”. Selvom kvindelige bedømmere faktisk er mere orienteret mod den enkelte studerende, og selvom dette generelt er forbundet med at give højere karakter, giver kvinderne ikke signifikant anderledes karakterer end deres mandlige kolleger. Det tyder på, at kvinder aktivt modvirker kønsstereotyper, hvilket er betryggende i den forstand, at studerende ikke bliver behandlet forskelligt alt efter, om de bliver bedømt af en mand eller en kvinde.Are female university teachers more motivated to helping individual students than their male colleagues, and if so, does this mean that students with female teachers achieve higher grades than those taught by men? This article investigates this question using a panel study of examination behavior at two Danish university departments between 2004 and 2010 (381 examinations relating to courses given by 78 university teachers. The analyses show that even though female teachers are more likely to be motivated to support students individually, and this is associated with high grades, in this study there was no difference between the grade distributions given by the female and the male teachers. These apparently inconsistent results might be due to the female teachers actively counteracting the perceived gender stereotypes when marking the papers they set. Alternatively, it may show that professional norms are more important than gender. In either instance it is reassuring in the sense that students are not treated differently, depending on whether the teacher who marks the examination papers is

  6. Experiences of caring for a family member with Parkinson's disease: a meta-synthesis.

    Science.gov (United States)

    Theed, Rachael; Eccles, Fiona; Simpson, Jane

    2017-10-01

    The aim of this qualitative meta-synthesis was to search and then synthesise family caregivers' experiences of providing care to individuals with Parkinson's disease (PD). A systematic search resulted in the identification of 11 qualitative studies. Noblit and Hare's seven-stage approach was used to provide a higher-order interpretation of how family caregivers' experienced the effects of taking on a caregiving role. The process of reciprocal translation resulted in four overarching themes: (1) the need to carry on as usual - 'the caregiver must continue with his life'; (2) the importance of support in facilitating coping - 'I'm still going back to the support group'; (3) the difficult balancing act between caregiving and caregiver needs - 'I cannot get sick because I'm a caregiver'; (4) conflicts in seeking information and knowledge - 'maybe better not to know'. The themes reflected different aspects of family caregivers' lives that were affected as a result of caring for a relative diagnosed with PD and these raise challenges for more simplistic theories of family caring and appropriate support structures. The findings also highlight several recommendations for clinical practice.

  7. In Search of Dignity: One Family Caring for Their Child's Incontinence

    Science.gov (United States)

    Coelho, Amy

    2009-01-01

    This article shares a story of a family with a child who has a spastic quadriplegia cerebral palsy, a form of cerebral palsy (CP) that affects all four limbs and torso with debilitating muscle dysfunction. It describes how the family cares for their child's incontinence. It also shares the experience of the child's mother, Kathy, who attributes…

  8. Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

    Science.gov (United States)

    van Eechoud, Ineke J; Piers, Ruth D; Van Camp, Sigrid; Grypdonck, Mieke; Van Den Noortgate, Nele J; Deveugele, Myriam; Verbeke, Natacha C; Verhaeghe, Sofie

    2014-05-01

    Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  9. Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

    OpenAIRE

    Paulson, Daniel; Lichtenberg, Peter A.

    2011-01-01

    The present research investigates differences between primary informal caregivers who were in the care recipient’s immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were ...

  10. Supportive Housing for Homeless Families: Foster Care Outcomes and Best Practices. Summary

    Science.gov (United States)

    Lenz-Rashid, Sonja

    2013-01-01

    The "Supportive Housing for Homeless Families: Foster Care Outcomes and Best Practices" report describes the outcome evaluation of Cottage Housing Incorporated's Serna Village program in Sacramento, California. Serna Village is a supportive housing program serving homeless families. Outcomes from the program illustrate that it is…

  11. Information-Seeking in Family Day Care: Access, Quality and Personal Cost

    Science.gov (United States)

    Corr, L.; Davis, E.; Cook, K.; Mackinnon, A.; Sims, M.; Herrman, H.

    2014-01-01

    Family day-care (FDC) educators work autonomously to provide care and education for children of mixed ages, backgrounds and abilities. To meet the demands and opportunities of their work and regulatory requirements, educators need access to context-relevant and high quality information. No previous research has examined how and where these workers…

  12. Management of patients with coronary heart disease in family medicine: correlates of quality of care.

    Science.gov (United States)

    Tušek-Bunc, Ksenija; Petek, Davorina

    2018-04-10

    Family medicine plays an important role in quality of care (QoC) of coronary heart disease (CHD) patients. This study's aim was to determine the quality of secondary cardiovascular disease prevention in the everyday practice of family physicians. This study was observational cross-sectional. About 36 randomly selected family medicine practices stratified by size and location in Slovenia. CHD patients randomly selected from a patient register available in family medicine practices. The instrument for assessment of quality included a form for collecting data from medical records, a general practice assessment questionnaire and a patient questionnaire. QoC was defined by two composite variables, namely risk factor registration and CHD patient process of care, as the two care outcomes. In multivariate analysis, we performed multilevel regression analysis to identify the associations between QoC, the patient and the practice characteristics. The final sample included 423 CHD patients from 36 family medicine practices. Risk factor registration was associated with the practice organisation score (P = 0.004), practice size (P = 0.042), presence of comorbid atherosclerotic diseases (P = 0.043) and a lower age of CHD patients (P = 0.001). CHD patient process of care was associated with the practice organisation score (0.045) and a lower age of CHD patients (P = 0.035). The most important factors affecting the quality of CHD patient care were linked to the organisational characteristics of the family medicine practices.

  13. Important questions asked by family members of intensive care unit patients.

    Science.gov (United States)

    Peigne, Vincent; Chaize, Marine; Falissard, Bruno; Kentish-Barnes, Nancy; Rusinova, Katerina; Megarbane, Bruno; Bele, Nicolas; Cariou, Alain; Fieux, Fabienne; Garrouste-Orgeas, Maite; Georges, Hugues; Jourdain, Merce; Kouatchet, Achille; Lautrette, Alexandre; Legriel, Stephane; Regnier, Bernard; Renault, Anne; Thirion, Marina; Timsit, Jean-Francois; Toledano, Dany; Chevret, Sylvie; Pochard, Frédéric; Schlemmer, Benoît; Azoulay, Elie

    2011-06-01

    Relatives often lack important information about intensive care unit patients. High-quality information is crucial to help relatives overcome the often considerable situational stress and to acquire the ability to participate in the decision-making process, most notably regarding the appropriate level of care. We aimed to develop a list of questions important for relatives of patients in the intensive care unit. This was a multicenter study. Questions asked by relatives of intensive care unit patients were collected from five different sources (literature, panel of 28 intensive care unit nurses and physicians, 1-wk survey of nurses and 1-wk survey of physicians in 14 intensive care units, and in-depth interviews with 14 families). After a qualitative analysis (framework approach and thematic analysis), questions were rated by 22 relatives and 14 intensive care unit physicians, and the ratings were analyzed using principal component analysis and hierarchical clustering. The five sources produced 2,135 questions. Removal of duplicates and redundancies left 443 questions, which were distributed among nine predefined domains using a framework approach ("diagnosis," "treatment," "prognosis," "comfort," "interaction," "communication," "family," "end of life," and "postintensive care unit management"). Thematic analysis in each domain led to the identification of 46 themes, which were reworded as 46 different questions. Ratings by relatives and physicians showed that 21 of these questions were particularly important for relatives of intensive care unit patients. This study increases knowledge about the informational needs of relatives of intensive care unit patients. This list of questions may prove valuable for both relatives and intensive care unit physicians as a tool for improving communication in the intensive care unit.

  14. Family reintegration of children and adolescents in foster care in Brazilian municipalities with different population sizes.

    Science.gov (United States)

    Iannelli, Andrea M; Assis, Simone Gonçalves; Pinto, Liana Wernersbach; Pinto, Liana Wenersbach

    2015-01-01

    The scope of this article is to present and analyze data from Brazilian foster care services for children / adolescents from the perspective of family reintegration. It also seeks to support the implementation of public policies in order to provide effective reintegration in accordance with the differing local contexts. It uses data from 1,157 municipalities that have foster care services. The methodology takes into account the data collection of 2,624 Brazilian centers and 36,929 children and adolescents in care. The growing number of children/adolescents in care is in line with the increase in population size: 8.4 per small city; 60 per large city and 602.4 per metropolis. With respect to care residence in a different municipality there are varying indices: 12.4% in metropolises and 33.6% in small cities, revealing the absence of centers close to family units in the smaller communities. Regarding the activities promoted together with families, it was seen that there are still units that do not perform any activities, which runs contrary to Brazilian law. It is clear that policies for the child/adolescent in foster care centers need to consider the capacity of the municipality in accordance with population size to implement support actions for families to assist in family reintegration.

  15. Family reintegration of children and adolescents in foster care in Brazilian municipalities with different population sizes

    Directory of Open Access Journals (Sweden)

    Andrea M. Iannelli

    2015-01-01

    Full Text Available The scope of this article is to present and analyze data from Brazilian foster care services for children / adolescents from the perspective of family reintegration. It also seeks to support the implementation of public policies in order to provide effective reintegration in accordance with the differing local contexts. It uses data from 1,157 municipalities that have foster care services. The methodology takes into account the data collection of 2,624 Brazilian centers and 36,929 children and adolescents in care. The growing number of children/adolescents in care is in line with the increase in population size: 8.4 per small city; 60 per large city and 602.4 per metropolis. With respect to care residence in a different municipality there are varying indices: 12.4% in metropolises and 33.6% in small cities, revealing the absence of centers close to family units in the smaller communities. Regarding the activities promoted together with families, it was seen that there are still units that do not perform any activities, which runs contrary to Brazilian law. It is clear that policies for the child/adolescent in foster care centers need to consider the capacity of the municipality in accordance with population size to implement support actions for families to assist in family reintegration.

  16. Post Stroke Llife in Iranian People: Used and Recommended Strategies

    Directory of Open Access Journals (Sweden)

    Asghar Dalvandi

    2009-04-01

    Full Text Available Objectives: Stroke survivors develop their own strategies to combat disabilities, developing strategies to maintain or reestablish a sense of continuity after the disruptive life event that stroke represents, using strategies to foster hope during the process of adjusting to life after stroke and drawing on spiritual practices. The aim of this study is to identify the used and recommended strategies of life after stroke among Iranian people. Methods: A grounded theory approach was recruited using semi-structured interviews with 10 stroke survivors, 12 family caregivers and 6 formal care givers. Results: Five main concepts emerged describing as the used and recommended strategies of the participants including, improving functional performance, re-learning life skills and educational support, accessing to rehabilitative services, socio-economical support and well-suited coping strategies. Discussion: Participants valued better knowledge and skills regarding the adaptive strategies for stroke survivors and their family care givers are essential in accomplishing with activities of daily living and doing social roles for improving life after stroke. Also developing the socio- economic supports is crucial for assuring a more supportive approach to achieve rehabilitation services and design better educational program for them.

  17. The process of death imminence awareness by family members of patients in adult critical care.

    Science.gov (United States)

    Baumhover, Nancy C

    2015-01-01

    A focus on cost-effective quality end-of-life care remains a high priority in adult critical care given an aging population, high prevalence of death, and aggressive technologies used to extend or sustain life in this setting. A Glaserian grounded theory design was used to conduct this retrospective study to yield a substantive middle-range theory. The data source was semistructured interviews with 14 family members of decedents who died 6 to 60 months prior to the study. The purpose of this study was to generate a theory on how family members of patients in adult critical care come to realize that their loved one is dying. The Process of Death Imminence Awareness by Family Members of Patients in Adult Critical Care middle-range theory contained 6 phases: (1) patient's near-death awareness, (2) dying right in front of me, (3) turning points in the patient's condition, (4) no longer the person I once knew, (5) doing right by them, and (6) time to let go. Patient's near-death awareness preceded all other phases, if communicated by the decedent with their family. Then, family members iteratively moved through all the other key phases in the process until a time to let go became evident. This substantive middle-range theory will guide nursing education, practice, and research aimed at providing quality and cost-effective end-of-life care in adult critical care.

  18. Prehospital Providers' Perceptions on Providing Patient and Family Centered Care.

    Science.gov (United States)

    Ayub, Emily M; Sampayo, Esther M; Shah, Manish I; Doughty, Cara B

    2017-01-01

    A gap exists in understanding a provider's approach to delivering care that is mutually beneficial to patients, families, and other providers in the prehospital setting. The purpose of this study was to identify attitudes, beliefs, and perceived barriers to providing patient and family centered care (PFCC) in the prehospital setting and to describe potential solutions for improving PFCC during critical pediatric events. We conducted a qualitative, cross-sectional study of a purposive sample of Emergency Medical Technicians (EMTs) and paramedics from an urban, municipal, fire-based EMS system, who participated in the Pediatric Simulation Training for Emergency Prehospital Providers (PediSTEPPS) course. Two coders reviewed transcriptions of audio recordings from participants' first simulation scenario debriefings and performed constant comparison analysis to identify unifying themes. Themes were verified through member checking with two focus groups of prehospital providers. A total of 122 EMTs and paramedics participated in 16 audiotaped debriefing sessions and two focus groups. Four overarching themes emerged regarding the experience of PFCC by prehospital providers: (1) Perceived barriers included the prehospital environment, limited manpower, multi-tasking medical care, and concern for interference with patient care; (2) Providing emotional support comprised of empathetically comforting caregivers, maintaining a calm demeanor, and empowering families to feel involved; (3) Effective communication strategies consisted of designating a family point person, narration of actions, preempting the next steps, speaking in lay terms, summarizing during downtime, and conveying a positive first impression; (4) Tactics to overcome PFCC barriers were maintaining a line of sight, removing and returning a caregiver to and from the scene, and providing situational awareness. Based on debriefings from simulated scenarios, some prehospital providers identified the provision of

  19. Meta-Analytic Structural Equation Modeling of the Influences of Family-Centered Care on Parent and Child Psychological Health

    OpenAIRE

    Dunst, Carl J.; Trivette, Carol M.

    2009-01-01

    Background. Family-centered care is now practiced throughout the world by physicians, nurses, and allied health care professionals. The call for adoption of family-centered care is based on the contention that the physical and psychological health of a child is influenced by parents' psychological health where family-centered care enhances parent well-being which in turn influences child well-being. We empirically assessed whether these relationships are supported by available evidence. M...

  20. Patient care in family medicine : what's new in the 2016 literature findings ?

    Science.gov (United States)

    Cohidon, Christine; Senn, Nicolas

    During the last two decades in Europe, the scope of activities regarding chronic diseases management in family medicine has increased while technical activities and preventative care have decreased. A new literature review and meta-analysis confirms that the use of electronic health records improves the quality of care. In the field of interprofessionnality, the task delegation in chronic care management to nurses or medical assistants is a source of satisfaction for these professionals. At the same time, this could improve patients' quality of life. Finally, a systematic literature review reports the major assets according to the family physicians regarding their occupation i.e. freedom to organize and manage their own work, good balance between workload and income and high intellectual stimulation.

  1. Factors associated with constructive staff-family relationships in the care of older adults in the institutional setting.

    Science.gov (United States)

    Haesler, Emily; Bauer, Michael; Nay, Rhonda

    2006-12-01

    Background  Modern healthcare philosophy espouses the virtues of holistic care and acknowledges that family involvement is appropriate and something to be encouraged due to the role it plays in physical and emotional healing. In the aged care sector, the involvement of families is a strong guarantee of a resident's well-being. The important role family plays in the support and care of the older adult in the residential aged care environment has been enshrined in the Australian Commonwealth Charter of Residents' Rights and Responsibilities and the Aged Care Standards of Practice. Despite wide acknowledgement of the importance of family involvement in the healthcare of the older adult, many barriers to the implementation of participatory family care have been identified in past research. For older adults in the healthcare environment to benefit from the involvement of their family members, healthcare professionals need an understanding of the issues surrounding family presence in the healthcare environment and the strategies to best support it. Objectives  The objectives of the systematic review were to present the best available evidence on the strategies, practices and organisational characteristics that promote constructive staff-family relationships in the care of older adults in the healthcare setting. Specifically this review sought to investigate how staff and family members perceive their relationships with each other; staff characteristics that promote constructive relationships with the family; and interventions that support staff-family relationships. Search strategy  A literature search was performed using the following databases for the years 1990-2005: Ageline, APAIS Health, Australian Family and Society Abstracts (FAMILY), CINAHL, Cochrane Library, Dare, Dissertation Abstracts, Embase, MEDLINE, PsycINFO and Social Science Index. Personal communication from expert panel members was also used to identify studies for inclusion. A second search stage

  2. Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

    Science.gov (United States)

    White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

    2018-01-01

    There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

  3. Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care.

    Science.gov (United States)

    Weaver, Meaghann S; Wichman, Brittany; Bace, Sue; Schroeder, Denice; Vail, Catherine; Wichman, Chris; Macfadyen, Andrew

    2018-06-01

    The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage ( P home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.

  4. Holding on while letting go: trauma and growth on the pathway of dementia care in families.

    Science.gov (United States)

    McCormack, Lynne; Tillock, Katrina; Walmsley, Bruce D

    2017-06-01

    Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives. This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis. One superordinate theme, navigating 'system' control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting; authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange. Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.

  5. The role of the bioethicist in family meetings about end of life care.

    Science.gov (United States)

    Watkins, Liza T; Sacajiu, Galit; Karasz, Alison

    2007-12-01

    There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the "consultant" role, in which bioethicists define and support ethical principles such as those enshrined in the "rational choice" model; and the "mediator" role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the "rational choice" decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, "persuader", to official roles of "consultant" and "mediator".

  6. Care coordination, the family-centered medical home, and functional disability among children with special health care needs.

    Science.gov (United States)

    Litt, Jonathan S; McCormick, Marie C

    2015-01-01

    Children with special health care needs (CSHCN) are at increased risk for functional disabilities. Care coordination has been shown to decrease unmet health service use but has yet been shown to improve functional status. We hypothesize that care coordination services lower the odds of functional disability for CSHCN and that this effect is greater within the context of a family-centered medical home. A secondary objective was to test the mediating effect of unmet care needs on functional disability. Our sample included children ages 0 to 17 years participating the 2009-2010 National Survey of Children with Special Health Care Needs. Care coordination, unmet needs, and disability were measured by parent report. We used logistic regression models with covariate adjustment for confounding and a mediation analysis approach for binary outcomes to assess the effect of unmet needs. There were 34,459 children in our sample. Care coordination was associated with lower odds of having a functional disability (adjusted odds ratio 0.82, 95% confidence interval 0.77, 0.88). This effect was greater for care coordination in the context of a medical home (adjusted odds ratio 0.71, 95% confidence interval 0.66, 0.76). The relationship between care coordination and functional disability was mediated by reducing unmet services. Care coordination is associated with lower odds of functional disability among CSHCN, especially when delivered in the setting of a family-centered medical home. Reducing unmet service needs mediates this effect. Our findings support a central role for coordination services in improving outcomes for vulnerable children. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

  7. Finnish Health Care Professionals’ Views of Patients Who Experience Family Violence

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    Inka Koistinen

    2015-01-01

    Full Text Available The aim of this study was to examine the beliefs health care personnel have about patients who experience family violence. This was done by analyzing the positions constructed for such patients using content analysis. The data comprise six focus groups conducted with physicians, nurses, social workers, and psychologists working in a maternity unit, a psychiatric ward, and an emergency department. The research team collected the data in 2006 in Finland. Three main positions were constructed for these patients: as a “victim,” with the classic characteristics of such; as a person damaged or disturbed in such a way that his or her victimization has become hidden behind secondary symptoms; and, as responsible for ending the violence and thus as an active contributor to and supporter of the violence. The results support the notion that health care personnel often have stereotypical beliefs about people experiencing family violence. It would be important to educate personnel about the dynamics of family violence.

  8. Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

    Directory of Open Access Journals (Sweden)

    Imas Rafiyah

    2011-01-01

    Full Text Available Background: Family caregiver is the most important person who cares for patient with schizophrenia. However when care is provided for long time, he/she may experiences the burden.Purpose: The purpose was to review concept and factors related to burden on family caregivers caring for patients with schizophrenia.Method: A literatures were searched from databases: Pubmed, CINAHL, and Science Direct. Key words used to retrieve literature include caregiver burden and schizophrenia. Searching was limited in English language, full text, and the year of publication from 2000 to 2009 was used.Results: Twenty two studies were reviewed in this paper. The result showed that the caregivers caring for patients with schizophrenia experience burden. Burden was defined as a negative impact of caring for the impaired person experienced by caregiver on their activity (objective burden or feeling (subjective burden that involves emotional, physical health, social life, and financial status. Factors related to burden on family caregiver were grouped into: 1 caregiver‟s factors included age, gender, educational level, income, health status, and spent time per day, knowledge of schizophrenia, culture, and coping; 2 patient‟s factors included age, clinical symptoms, and disability in daily life; 3 environmental factors included mental health service and social support.Conclusion: Definition of burden have quite same meaning and mostly factors focus on the patient‟s symptoms, demographic factors of caregiver, and time spent per day. Most of studies cannot be generalized due to small sample used in the study and that too conducted in western countries. For further research, the correlation between burden and resources of family caregiver should be investigated particularly in eastern country.Key words: burden on family caregiver, caring, schizophrenia.

  9. The role of the community nurse in family health care

    OpenAIRE

    JO Goddard

    1981-01-01

    The range of the community nurse’s work in family health care is much wider than that portrayed by the stereotype which many people, both lay and professional, have of it — namely, mother and baby clinics.

  10. Family-centered bereavement practices in Danish intensive care units

    DEFF Research Database (Denmark)

    Egerod, Ingrid; Kaldan, Gudrun; Coombs, Maureen

    2018-01-01

    : Self-administered computerized cross-sectional nation-wide survey of Danish ICUs. RESULTS: Nurses at 46 of 48 (96%) ICUs in Denmark responded. Bereavement care at the time of patient death included viewing the patient in ICU (100%), and in the hospital mortuary (59%). Information about hospital...... of death, a letter of condolence, a phone call to the family, referral to a priest or clergyman, or referral to other counseling. Although many interventions were common, there were variations within the elements offered. Nurses and physicians were the most consistent health care staff involved...

  11. Factors Determining Quality of Care in Family Planning Services in Africa: A Systematic Review of Mixed Evidence.

    Science.gov (United States)

    Tessema, Gizachew Assefa; Streak Gomersall, Judith; Mahmood, Mohammad Afzal; Laurence, Caroline O

    2016-01-01

    Improving use of family planning services is key to improving maternal health in Africa, and provision of quality of care in family planning services is critical to support higher levels of contraceptive uptake. The objective of this systematic review was to synthesize the available evidence on factors determining the quality of care in family planning services in Africa. Quantitative and qualitative studies undertaken in Africa, published in English, in grey and commercial literature, between 1990 and 2015 were considered. Methodological quality of included studies was assessed using standardized tools. Findings from the quantitative studies were summarized using narrative and tables. Client satisfaction was used to assess the quality of care in family planning services in the quantitative component of the review. Meta-aggregation was used to synthesize the qualitative study findings. From 4334 records, 11 studies (eight quantitative, three qualitative) met the review eligibility criteria. The review found that quality of care was influenced by client, provider and facility factors, and structural and process aspects of the facilities. Client's waiting time, provider competency, provision/prescription of injectable methods, maintaining privacy and confidentiality were the most commonly identified process factors. The quality of stock inventory was the most commonly identified structural factor. The quality of care was also positively associated with privately-owned facilities. The qualitative synthesis revealed additional factors including access related factors such as 'pre-requisites to be fulfilled by the clients and cost of services, provider workload, and providers' behaviour. There is limited evidence on factors determining quality of care in family planning services in Africa that shows quality of care is influenced by multiple factors. The evidence suggests that lowering access barriers and avoiding unnecessary pre-requisites for taking contraceptive

  12. Factors Determining Quality of Care in Family Planning Services in Africa: A Systematic Review of Mixed Evidence.

    Directory of Open Access Journals (Sweden)

    Gizachew Assefa Tessema

    Full Text Available Improving use of family planning services is key to improving maternal health in Africa, and provision of quality of care in family planning services is critical to support higher levels of contraceptive uptake. The objective of this systematic review was to synthesize the available evidence on factors determining the quality of care in family planning services in Africa.Quantitative and qualitative studies undertaken in Africa, published in English, in grey and commercial literature, between 1990 and 2015 were considered. Methodological quality of included studies was assessed using standardized tools. Findings from the quantitative studies were summarized using narrative and tables. Client satisfaction was used to assess the quality of care in family planning services in the quantitative component of the review. Meta-aggregation was used to synthesize the qualitative study findings.From 4334 records, 11 studies (eight quantitative, three qualitative met the review eligibility criteria. The review found that quality of care was influenced by client, provider and facility factors, and structural and process aspects of the facilities. Client's waiting time, provider competency, provision/prescription of injectable methods, maintaining privacy and confidentiality were the most commonly identified process factors. The quality of stock inventory was the most commonly identified structural factor. The quality of care was also positively associated with privately-owned facilities. The qualitative synthesis revealed additional factors including access related factors such as 'pre-requisites to be fulfilled by the clients and cost of services, provider workload, and providers' behaviour.There is limited evidence on factors determining quality of care in family planning services in Africa that shows quality of care is influenced by multiple factors. The evidence suggests that lowering access barriers and avoiding unnecessary pre-requisites for taking

  13. A Look at Person- and Family-Centered Care Among Older Adults: Results from a National Survey [corrected].

    Science.gov (United States)

    Wolff, Jennifer L; Boyd, Cynthia M

    2015-10-01

    Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care-but emphasize age-based differences or focus on vulnerable subgroups. We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care. This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n = 2040). Approach to managing health (self-manage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured. Approximately two-thirds of older adults self-manage (69.4 %) and one-third co-manage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden-that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don't get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR = 1.79 (95 % CI, 1.37-2.33) and family/close friends (aOR = 3.12 (95 % CI, 2.23-4.36), and are more likely to experience treatment burden (aOR = 2.37 (95 % CI, 1.61-3.47). Attaining person-centered and family-centered care will require strategies that respect diverse decision

  14. Taking care of the newborn dying and their families: Nurses' experiences of neonatal intensive care

    Directory of Open Access Journals (Sweden)

    Fabiane de Amorim Almeida

    2016-06-01

    Full Text Available Objective To understand the experiences of nurses when caring for dying newborns and their families in the NICU; and redeem their perceptions about acting before the death and grieving process. Method A descriptive exploratory study with a qualitative approach, developed with nine nurses at the ICU of a hospital in São Paulo (SP, Brazil. Data was collected through semi-structured interviews and analyzed using the Collective Subject Discourse (CSD. Results Caring for newborns who are dying and their families is very difficult for nurses, due to the intense involvement. They seek strategies to deal with the situation and, before the newborn’s death, despite the suffering, express the feeling of accomplishment. Conclusions Facing death and grief triggers mechanisms that emerge life references, coming across painful issues. Learning to deal with these questions is a daily challenge for nurses of the NICU.

  15. Dose rate of restroon in facilities using radioisotope

    Energy Technology Data Exchange (ETDEWEB)

    Cho, Yong Gwi [Dept. of uclear Medicine, Inha University hospital, Incheon (Korea, Republic of); An, Seong Min [Dept. of Radiology, Gachon University, Incheon (Korea, Republic of)

    2016-06-15

    This study is therefore aimed at measuring the surface dose rate and the spatial dose rate in and outside the radionuclide facility in order to ensure safety of the patients, radiation workers and family care-givers in their use of such equipment and to provide a basic framework for further research on radiation protection. The study was conducted at 4 restrooms in and outside the radionuclide facility of a general hospital in Incheon between May 1 and July 31, 2014. During the study period, the spatial contamination dose rate and the surface contamination dose rate before and after radiation use were measured at the 4 places−thyroid therapy room, PET center, gamma camera room, and outpatient department. According to the restroom use survey by hospitals, restrooms in the radionuclide facility were used not only by patients but also by family care-givers and some of radiation workers. The highest cumulative spatial radiation dose rate was 8.86 mSv/hr at camera room restroom, followed by 7.31 mSv/hr at radioactive iodine therapy room restroom, 2.29 mSv/hr at PET center restroom, and 0.26 mSv/hr at outpatient department restroom, respectively. The surface radiation dose rate measured before and after radiation use was the highest at toilets, which are in direct contact with patient's excretion, followed by the center and the entrance of restrooms. Unsealed radioactive sources used in nuclear medicine are relatively safe due to short half lives and low energy. A patient who received those radioactive sources, however, may become a mobile radioactive source and contaminate areas the patient contacts−camera room, sedation room, and restroom−through secretion and excretion. Therefore, patients administered radionuclides should be advised to drink sufficient amounts of water to efficiently minimize radiation exposure to others by reducing the biological half-life, and members of the public−family care-givers, pregnant women, and children−be as far away from

  16. Patient-centered care in chronic disease management: a thematic analysis of the literature in family medicine.

    Science.gov (United States)

    Hudon, Catherine; Fortin, Martin; Haggerty, Jeannie; Loignon, Christine; Lambert, Mireille; Poitras, Marie-Eve

    2012-08-01

    The objective was to provide a synthesis of the results of the research and discourse lines on main dimensions of patient-centered care in the context of chronic disease management in family medicine, building on Stewart et al.'s model. We developed search strategies for the Medline, Embase, and Cochrane databases, from 1980 to April 2009. All articles addressing patient-centered care in the context of chronic disease management in family medicine were included. A thematic analysis was performed using mixed codification, based on Stewart's model of patient-centered care. Thirty-two articles were included. Six major themes emerged: (1) starting from the patient's situation; (2) legitimizing the illness experience; (3) acknowledging the patient's expertise; (4) offering realistic hope; (5) developing an ongoing partnership; (6) providing advocacy for the patient in the health care system. The context of chronic disease management brings forward new dimensions of patient-centered care such as legitimizing the illness experience, acknowledging patient expertise, offering hope and providing advocacy. Chronic disease management calls for the adaptation of the family physician's role to patients' fluctuating needs. Literature also suggests the involvement of the family physician in care transitions as a component of patient-centered care. Crown Copyright © 2012. Published by Elsevier Ireland Ltd. All rights reserved.

  17. Assessing the Local Need for Family and Child Care Services: A Small Area Utilization Analysis.

    Science.gov (United States)

    Percy, Andrew; Carr-Hill, Roy; Dixon, Paul; Jamison, James Q.

    2000-01-01

    Describes study of administrative data from Northern Ireland on the costs of family and child care services, using small area utilization modeling, to derive a new set of needs indicators that could be used within the family and child care capitation funding formula. Argues that small area utilization modeling produces a fairer and more equitable…

  18. Improving family satisfaction and participation in decision making in an intensive care unit.

    Science.gov (United States)

    Huffines, Meredith; Johnson, Karen L; Smitz Naranjo, Linda L; Lissauer, Matthew E; Fishel, Marmie Ann-Michelle; D'Angelo Howes, Susan M; Pannullo, Diane; Ralls, Mindy; Smith, Ruth

    2013-10-01

    Background Survey data revealed that families of patients in a surgical intensive care unit were not satisfied with their participation in decision making or with how well the multidisciplinary team worked together. Objectives To develop and implement an evidence-based communication algorithm and evaluate its effect in improving satisfaction among patients' families. Methods A multidisciplinary team developed an algorithm that included bundles of communication interventions at 24, 72, and 96 hours after admission to the unit. The algorithm included clinical triggers, which if present escalated the algorithm. A pre-post design using process improvement methods was used to compare families' satisfaction scores before and after implementation of the algorithm. Results Satisfaction scores for participation in decision making (45% vs 68%; z = -2.62, P = .009) and how well the health care team worked together (64% vs 83%; z = -2.10, P = .04) improved significantly after implementation. Conclusions Use of an evidence-based structured communication algorithm may be a way to improve satisfaction of families of intensive care patients with their participation in decision making and their perception of how well the unit's team works together.

  19. Family Physicians May Benefit From Cognitive Behavioral Therapy Skills in Primary Care Setting.

    Directory of Open Access Journals (Sweden)

    Omer Serkan Turan

    2017-08-01

    Full Text Available Dr Francis Peabody commented that the swing of the pendulum toward specialization had reached its apex, and that modern medicine had fragmented the health care delivery system too greatly. Thus the system was in need of a generalist physician to provide comprehensive personalized care. Family physician is the perfect candidate to fill the gap which Dr Peabody once speaks of and grants biopsychosocial model as its main philosophy. Biopsychosocial model proposes physician to consider multiple aspects of patient's life in order to manage disease. Behavioral pathogens such as poor diet, lack of physical activity, stress, substance abuse, unsafe sexual activity, inadequate emotional support, nonadherence to medical advice contribute to disease progress. Family physician can guide patient like a coach to obtain higher levels in Maslow’s hierarchy of needs as biopsychosocial model suggests and obtain the change in behavior towards a healthier life with using cognitive behavioral therapy skills. So family physician, biopsychosocial model and cognitive behavioral skills are three pillars of comprehensive personalized care and family physicians having these skill sets can be very helpful in making positive changes in the life of the patient. [JCBPR 2017; 6(2.000: 98-100

  20. The needs of the relatives in the adult intensive care unit: Cultural adaptation and psychometric properties of the Chilean-Spanish version of the Critical Care Family Needs Inventory.

    Science.gov (United States)

    Rojas Silva, Noelia; Padilla Fortunatti, Cristobal; Molina Muñoz, Yerko; Amthauer Rojas, Macarena

    2017-12-01

    The admission of a patient to an intensive care unit is an extraordinary event for their family. Although the Critical Care Family Needs Inventory is the most commonly used questionnaire for understanding the needs of relatives of critically ill patients, no Spanish-language version is available. The aim of this study was to culturally adapt and validate theCritical Care Family Needs Inventory in a sample of Chilean relatives of intensive care patients. The back-translated version of the inventory was culturally adapted following input from 12 intensive care and family experts. Then, it was evaluated by 10 relatives of recently transferred ICU patients and pre-tested in 10 relatives of patients that were in the intensive care unit. Psychometric properties were assessed through exploratory factor analysis and Cronbach's α in a sample of 251 relatives of critically ill patients. The Chilean-Spanish version of the Critical Care Family Needs Inventoryhad minimal semantic modifications and no items were deleted. A two factor solution explained the 31% of the total instrument variance. Reliability of the scale was good (α=0.93), as were both factors (α=0.87; α=0.93). The Chilean-Spanish version of theCritical Care Family Needs Inventory was found valid and reliable for understanding the needs of relatives of patients in acute care settings. Copyright © 2017 Elsevier Ltd. All rights reserved.

  1. The conceptions of care among family caregivers of persons living with HIV/AIDS in Addis Ababa, Ethiopia.

    Science.gov (United States)

    Aga, Fekadu; Kylmä, Jari; Nikkonen, Merja

    2009-01-01

    This focused ethnographic study explores and describes the conceptions of care among family caregivers of people living with HIV/AIDS (PLWAs) in Addis Ababa, Ethiopia. Leininger's theory of culture care diversity and universality is the conceptual anchor of this ethnographic study. Using semistructured interviews and participant observation, 6 key informants and 12 general informants were interviewed in their home in Amharic language. Data were analyzed in Amharic using Leininger's phases of ethnonursing analysis for qualitative data and then translated to English. Four major themes representing family caregivers' conceptions of care were identified: nourishing the PLWA while struggling with poverty, maintenance of cleanliness and hygiene of the person and surroundings, comforting the PLWA, and sacrificing self to sustain the PLWA. Valuable data were gathered about the family caregivers' conceptions of care. Nurses can use this knowledge to design and provide culturally congruent care to family caregivers and PLWAs in the community.

  2. An Integrated Framework for Effective and Efficient Communication with Families in the Adult Intensive Care Unit.

    Science.gov (United States)

    Seaman, Jennifer B; Arnold, Robert M; Scheunemann, Leslie P; White, Douglas B

    2017-06-01

    The increased focus on patient and family-centered care in adult intensive care units (ICUs) has generated multiple platforms for clinician-family communication beyond traditional interdisciplinary family meetings (family meetings)-including family-centered rounds, bedside or telephone updates, and electronic family portals. Some clinicians and administrators are now using these platforms instead of conducting family meetings. For example, some institutions are moving toward using family-centered rounds as the main platform for clinician-family communication, and some physicians rely on brief daily updates to the family at the bedside or by phone, in lieu of family meetings. We argue that although each of these platforms is useful in some circumstances, there remains an important role for family meetings. We outline five goals of clinician-family communication-establishing trust, providing emotional support, conveying clinical information, understanding the patient as a person, and facilitating careful decision making-and we examine the extent to which various communication platforms are likely to achieve the goals. We argue that because no single platform can achieve all communication goals, an integrated strategy is needed. We present a model that integrates multiple communication platforms to effectively and efficiently support families across the arc of an ICU stay. Our framework employs bedside/telephone conversations and family-centered rounds throughout the admission to address high informational needs, along with well-timed family meetings that attend to families' emotions as well as patients' values and goals. This flexible model uses various communication platforms to achieve consistent, efficient communication throughout the ICU stay.

  3. Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives.

    Science.gov (United States)

    Thompson, Rose; Kerr, Mike; Glynn, Mike; Linehan, Christine

    2014-11-01

    To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy. An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities. Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior. The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families. Copyright © 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

  4. Health care restructuring and family physician care for those who died of cancer

    Directory of Open Access Journals (Sweden)

    Johnston Grace

    2005-01-01

    Full Text Available Abstract Background During the 1990s, health care restructuring in Nova Scotia resulted in downsized hospitals, reduced inpatient length of stay, capped physician incomes and restricted practice locations. Concurrently, the provincial homecare program was redeveloped and out-of-hospital cancer deaths increased from 20% (1992 to 30% (1998. These factors all pointed to a transfer of end-of-life inpatient hospital care to more community-based care. The purpose of this study was to describe the trends in the provision of Family Physician (FP visits to advanced cancer patients in Nova Scotia (NS during the years of health care restructuring. Methods Design Secondary multivariate analysis of linked population-based datafiles including the Queen Elizabeth II Health Sciences Centre Oncology Patient Information System (NS Cancer Registry, Vital Statistics, the NS Hospital Admissions/Separations file and the Medical Services Insurance Physician Services database. Setting Nova Scotia, an eastern Canadian province (population: 950,000. Subjects: All patients who died of lung, colorectal, breast or prostate cancer between April 1992 and March 1998 (N = 7,212. Outcome Measures Inpatient and ambulatory FP visits, ambulatory visits by location (office, home, long-term care facility, emergency department, time of day (regular hours, after hours, total length of inpatient hospital stay and number of hospital admissions during the last six months of life. Results In total, 139,641 visits were provided by family physicians: 15% of visits in the office, 10% in the home, 5% in the emergency department (ED, 5% in a long-term-care centre and 64% to hospital inpatients. There was no change in the rate of FP visits received for office, home and long-term care despite the fact that there were 13% fewer hospital admissions, and length of hospital stay declined by 21%. Age-sex adjusted estimates using negative binomial regression indicate a decline in hospital inpatient FP

  5. [End-of-Life Care in Intensive Care Units: Nursing strategies of family involvement at the end of life].

    Science.gov (United States)

    Cyrol, Katharina; Fröhlich, Martin R; Piatti, Francesca; Imhof, Lorenz

    2018-06-01

    Background: Family members of people dying in the intensive care unit (ICU) are exposed to many stress factors and they often do not experience involvement in End-of-Life (EoL) situations. For example, they criticize a low degree of participation in patients care, delayed or incomplete information and lack of privacy. Even nursing staff is facing various obstacles in EoL situations in ICUs. Aim: This study investigates strategies used by ICU nursing staff in German-speaking Switzerland to increase family members participation in situations at the end of life. Method: Data was collected by conducting 12 semi-structured interviews using an approach based on Grounded Theory. A model was developed to explain nursing strategies for family involvement in EoL situations in the ICU. Conclusions: Nurses provide personal space and tranquillity for family members and allow them to be present at any time. Against this background, they support family members and enable them to say goodbye consciously to a loved one. Subsequent work should examine the effectiveness of the strategies described, particularly in terms of stress reactions displayed by family members in the aftermath of EoL situations. In practice, family members should be provided space for privacy. The entire healthcare team is recommended to identify and pursue common values and objectives. Moreover, intradisciplinary exchange and mentoring need to be encouraged. In order to prepare future nursing staff for EoL situations in the ICU, recognizing and promoting their educational skills is mandatory.

  6. Partnering With a Family Advisor to Improve Communication in a Pediatric Intensive Care Unit.

    Science.gov (United States)

    Czulada, Laura; Leino, Patience; Willis, Tina Schade

    2016-11-01

    Inadequate communication between medical teams and families can lead to errors and poor-quality care. The objective was to understand why communication between the clinical team and families was not occurring consistently in the pediatric intensive care unit and improve the system using a multidisciplinary improvement team including a family advisor. This improvement project used Lean Six Sigma. The team observed updates and collected documented communication, survey, interview, and focus group data from families and staff. Root causes of failures included lack of assigned responsibility, lack of defined daily update, and lack of a daily communication standard. Process changes were implemented, resulting in an increased mean documented communication rate from 13% pre intervention to 65% post intervention that was sustained for more than 2 years (P < .001). Including a family advisor as an equal member of an improvement team provides family empowerment and a greater chance of success in complex areas. © The Author(s) 2015.

  7. Engaging patients and families in communication across transitions of care: an integrative review protocol.

    Science.gov (United States)

    Bucknall, Tracey K; Hutchinson, Alison M; Botti, Mari; McTier, Lauren; Rawson, Helen; Hewitt, Nicky A; McMurray, Anne; Marshall, Andrea P; Gillespie, Brigid M; Chaboyer, Wendy

    2016-07-01

    To describe an integrative review protocol to analyse and synthesize peer-reviewed research evidence in relation to engagement of patients and their families in communication during transitions of care to, in and from acute care settings. Communication at transitions of care in acute care settings can be complex and challenging, with important information about patients not always clearly transferred between responsible healthcare providers. Involving patients and their families in communication during transitions of care may improve the transfer of clinical information and patient outcomes and prevent adverse events during hospitalization and following discharge. Recently, optimizing patient and family participation during care transitions has been acknowledged as central to the implementation of patient-centred care. Integrative review with potential for meta-analysis and application of framework synthesis. The review will evaluate and synthesize qualitative and quantitative research evidence identified through a systematic search. Primary studies will be selected according to inclusion criteria. Data collection, quality appraisal and analysis of the evidence will be conducted by at least two authors. Nine electronic databases (including CINAHL and Medline) will be searched. The search will be restricted to 10 years up to December 2013. Data analysis will include content and thematic analysis. The review will seek to identify all types of patient engagement activities employed during transitions of care communication. The review will identify enablers for and barriers to engagement for patients, families and health professionals. Key strategies and tools for improving patient engagement, clinical communication and promoting patient-centred care will be recommended based on findings. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.

  8. The needs of patient family members in the intensive care unit in ...

    African Journals Online (AJOL)

    Background. The admission of a relative to an intensive care unit (ICU) is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda. Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda. Methods. This study used a ...

  9. Patient’s and parents’ expectations of orthodontic treatment

    NARCIS (Netherlands)

    Hiemstra, R.; Bos, A.; Hoogstraten, J.

    2009-01-01

    Objective: To investigate the expectations of children and their primary care-givers towards orthodontic treatment and to compare the results with those of a UK sample. Design: A questionnaire survey of children and their primary care-givers attending for their first consultation. Setting: The

  10. The role of the community nurse in family health care

    Directory of Open Access Journals (Sweden)

    JO Goddard

    1981-09-01

    Full Text Available The range of the community nurse’s work in family health care is much wider than that portrayed by the stereotype which many people, both lay and professional, have of it — namely, mother and baby clinics.

  11. [Access to prenatal care and quality of care in the Family Health Strategy: infrastructure, care, and management].

    Science.gov (United States)

    Guimarães, Wilderi Sidney Gonçalves; Parente, Rosana Cristina Pereira; Guimarães, Thayanne Louzada Ferreira; Garnelo, Luiza

    2018-05-10

    This study focuses on access to prenatal care and quality of care in the Family Health Strategy in Brazil as a whole and in the North region, through evaluation of infrastructure characteristics in the health units, management, and supply of care provided by the teams, from the perspective of regional and state inequalities. A cross-sectional evaluative and normative study was performed, drawing on the external evaluation component of the second round of the Program for Improvement of Access and Quality of Primary Care, in 2013-2014. The results revealed the inadequacy of the primary healthcare network's infrastructure for prenatal care, low adequacy of clinical actions for quality of care, and the teams' low management capacity to guarantee access and quality of care. In the distribution according to geopolitical regions, the findings pertaining to the units' infrastructure indicate a direct relationship between the infrastructure's adequacy and social contexts with higher municipal human development indices and income. For the clinical actions in patient care, the teams in all the regions scored low on adequacy, with slightly better results in the North and South regions of the country. There were important differences between the states of the North, and the states with higher mean income and human development scored higher on adequacy. The results indicate important organizational difficulties in both access and quality of care provided by the health teams, in addition to visible insufficiency in management activities aimed to improve access and quality of prenatal care.

  12. The use of medicinal plants and the role of faith in family care.

    Science.gov (United States)

    Lima, Crislaine Alves Barcellos de; Lima, Ângela Roberta Alves; Mendonça, Cledenir Vergara; Lopes, Caroline Vasconcellos; Heck, Rita Maria

    2017-05-04

    To understand the use of medicinal plants and the role of faith in the family care system. The adopted methodology is qualitative research, conducted in April and July 2015, in a municipality of Rio Grande do Sul, Brazil, Brazil, with three informants who have knowledge of the healthcare practices. The data were interpreted using interpretive anthropology. Data interpretation led to two categories: Medicinal plants in health care and Care with the use of plants in the blessing ritual. It was identified that the use of plants and faith healing is a particular form of self-care in that given community. The purpose of this practice is to cure people from a biological and comprehensive perspective, involving the body, soul, spirit, and environment. The research revealed that medicinal plants go beyond the merely biological relationship in the family care system. Use of these plants is not based on the principle of buying and selling, but rather on the act of exchanging, giving, receiving, and reciprocating.

  13. The ethical leadership challenge: creating a culture of patient- and family-centered care in the hospital setting.

    Science.gov (United States)

    Piper, Llewellyn E

    2011-01-01

    The growing number of medical errors and resulting preventable deaths in hospitals presents an ethical dilemma that must be addressed by health care leaders and managers. These medical errors and deaths raise questions about safety and quality issues resulting in rising public mistrust and patient dissatisfaction. Many of these medical errors and deaths could have been avoided by including the patient and family in the care. The ethical challenge for leadership is creating a culture of patient- and family-centered care as a means to improve quality, safety, patient satisfaction, and public trust. This article addresses ways to improve safety, quality, patient satisfaction, and cost and thereby reduce medical errors and deaths by implementing a patient- and family-centered care culture. The first critical step for improvement is for hospital leaders and managers to answer the ethical call to create a culture centered on patient- and family-centered care in the hospital setting.

  14. Experiences and needs of families regarding prognostic communication in an intensive care unit: supporting families at the end of life.

    Science.gov (United States)

    Gutierrez, Karen M

    2012-01-01

    This article reports the results of a study designed to explore the experiences and needs of family members for prognostic communication at end of life in an intensive care unit (ICU). Subjects in this qualitative study included 20 family members of patients at high risk for death in 1 adult medical/surgical ICU. All subjects were interviewed once utilizing a semistructured interview format, with approximately half interviewed multiple times during the ICU stay. Families described 5 themes of information-related "work": (1) hearing and recalling, (2) accessing, (3) interpreting, (4) retaining, and (5) utilizing information for decision making. Barriers, including accessing physicians and cognitive issues from high levels of stress, made this work difficult. Families described a need for prognostic information, especially if the prognosis was poor. Because hearing this news was difficult, they needed it communicated with respect, sensitivity, and compassion. Suggestions for clinical practice to support families in their information-related work are presented. Overall, the importance of providers approaching communication from a holistic perspective, extending beyond simply passing on information, is emphasized. Viewing communication as a therapeutic modality, and communicating with compassion, sensitivity, and a genuine sense of caring, can help provide both the information and the emotional support and comfort families desperately need.

  15. Assessment of the Patient-Centered and Family-Centered Care Experience of Total Joint Replacement Patients Using a Shadowing Technique.

    Science.gov (United States)

    Marcus-Aiyeku, Ulanda; DeBari, Margaret; Salmond, Susan

    2015-01-01

    In 2030, when baby boomers reach 65 years of age and represent 18% of the population, it is anticipated that 67 million adults will have a diagnosis of arthritis increasing the demand for total hip and knee arthroplasty. With the growing emphasis on patient- and family-centered care, the aim of this project was to assess the patient experience of patients and families throughout the entire spectrum of the total joint replacement service line care at a university regional trauma hospital. A shadowing methodology as defined by the Institute for Health Improvement was utilized. Eight patient/family groups undergoing total joint replacements were shadowed. The mapped care experience included time, caregiver, activity, shadower observations, and impressions. Findings revealed inconsistencies in the delivery of patient- and family-centered care. Communication and interactions were predominantly provider-centric, with a focus on care routines versus the patient and family, and anticipation that care would be medically directed.

  16. Family-centered depression treatment for older men in primary care: a qualitative study of stakeholder perspectives.

    Science.gov (United States)

    Hinton, Ladson; Sciolla, Andrés F; Unützer, Jürgen; Elizarraras, Edward; Kravitz, Richard L; Apesoa-Varano, Ester Carolina

    2017-09-29

    Family members often play important roles in the lives of depressed older men and frequently attend primary care visits with their loved ones, yet surprisingly little is known about how to most effectively engage and include family members in depression treatment. However, including family in depression treatment may be difficult due to several factors, such as depression stigma and family conflicts. The objective of this study was to describe challenges in engaging family members in older men's depression treatment and potential strategies to overcome those challenges. A cross-sectional, qualitative descriptive interview study was conducted in a safety-net, Federally Qualified Health Center in California's Central Valley. A total of 37 stakeholders were recruited, including 15 depressed older (i.e. age ≥ 60) men, 12 family members, and 10 clinic staff. Depressed men were identified through mail outreach, waiting room screening, and referral. Depressed men identified family members who were later approached to participate. We also recruited a purposeful sample of clinic staff. Interviews explored stakeholder perspectives on family involvement in men's depression treatment as part of a primary care intervention. Interviews were conducted using a semi-structured interview guide, tape-recorded, transcribed verbatim, and translated if the interview was conducted in Spanish. Four themes were identified representing core challenges: engaging men at the right time; preserving men's sense of autonomy; managing privacy concerns; and navigating family tensions. Stakeholders also provided practical suggestions and advice about how each of these challenges might be addressed. While engaging family is a promising approach to strengthen depression care for older men in primary care settings, several potential challenges exist. Family- centered depression intervention development and clinical practice need to anticipate these challenges and to develop approaches and

  17. Dementia and Migration: Family Care Patterns Merging With Public Care Services.

    Science.gov (United States)

    Sagbakken, Mette; Spilker, Ragnhild Storstein; Ingebretsen, Reidun

    2018-01-01

    This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties. Consequently, health personnel should be wary of stereotyping and generalizing groups through "othering" ideologies and rather try to explore, understand, and adjust to the present and often fluctuating set of needs, as well as be aware of how and by whom these needs are articulated.

  18. Geriatric core competencies for family medicine curriculum and enhanced skills: care of elderly.

    Science.gov (United States)

    Charles, Lesley; Triscott, Jean A C; Dobbs, Bonnie M; McKay, Rhianne

    2014-06-01

    There is a growing mandate for Family Medicine residency programs to directly assess residents' clinical competence in Care of the Elderly (COE). The objectives of this paper are to describe the development and implementation of incremental core competencies for Postgraduate Year (PGY)-I Integrated Geriatrics Family Medicine, PGY-II Geriatrics Rotation Family Medicine, and PGY-III Enhanced Skills COE for COE Diploma residents at a Canadian University. Iterative expert panel process for the development of the core competencies, with a pre-defined process for implementation of the core competencies. Eighty-five core competencies were selected overall by the Working Group, with 57 core competencies selected for the PGY-I/II Family Medicine residents and an additional 28 selected for the PGY-III COE residents. The core competencies follow the CanMEDS Family Medicine roles. Both sets of core competencies are based on consensus. Due to demographic changes, it is essential that Family Physicians have the required skills and knowledge to care for the frail elderly. The core competencies described were developed for PGY-I/II Family Medicine residents and PGY-III Enhanced Skills COE, with a focus on the development of geriatric expertise for those patients that would most benefit.

  19. Home Based Care | Chukwukelu | Nigerian Journal of Family Practice

    African Journals Online (AJOL)

    Cost considerations thus tend to shift the burden of both acute and long-term care to the family. In the very poor countries, health centres are overwhelmed, staff are not paid for months, drugs and equipment are often unavailable, patients' expectations of service quality are not met, etc. Most common ailments are therefore ...

  20. The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

    Directory of Open Access Journals (Sweden)

    Lisete dos Santos Mendes Mónico

    2017-08-01

    Full Text Available Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007, the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995 and the Barthel Index (Mahoney & Barthel, 1965. Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy levels. The main reason for maintaining caregivers was family/personal obligation (95.7%. Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI; M = 101.0, SD = 15.0. There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.

  1. Children in family foster care have greater health risks and less involvement in Child Health Services.

    Science.gov (United States)

    Köhler, M; Emmelin, M; Hjern, A; Rosvall, M

    2015-05-01

    This study investigated the impact of being in family foster care on selected health determinants and participation in Child Health Services (CHS). Two groups of 100 children, born between 1992 and 2008, were studied using data from Swedish Child Health Services for the preschool period up to the age of six. The first group had been in family foster care, and the controls, matched for age, sex and geographic location, had not. Descriptive statistics were used to describe differences in health determinants and participation in Child Health Services between the two groups. The foster care group had higher health risks, with lower rates of breastfeeding and higher levels of parental smoking. They were less likely to have received immunisations and attended key nurse or physician visits and speech and vision screening. Missing data for the phenylketonuria test were more common in children in family foster care. Children in family foster care were exposed to more health risks than the control children and had lower participation in the universal child health programme during the preschool period. These results call for secure access to high-quality preventive health care for this particularly vulnerable group of children. ©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

  2. Family bedside orientations: An innovative peer support model to enhance a culture of family-centred care at the Stollery Children's Hospital.

    Science.gov (United States)

    Wodinski, Lindsay M; Mattson McCrady, Heather M; Oswald, Christie M; Lyste, Nicole J M; Forbes, Karen L L

    2017-10-01

    This paper presents family bedside orientations, an innovative bedside peer support model for families of paediatric patients piloted in one unit at the Stollery Children's Hospital in Edmonton, Alberta. The model invites family members of former patients back to the hospital as volunteer peer mentors responsible for meeting one-on-one with current inpatient families to provide a listening presence, discuss patient safety practices and encourage families to participate in their child's care. Using qualitative and quantitative data collection methods, the model was evaluated over 1 year (December 2014 to December 2015). Data sources included peer mentor field notes (from 163 visits) detailing the number of family bedside orientations completed by peer mentors and how they interacted with families, as well as post-visit family (n=35) surveys, Hospital-Child Inpatient Experience Survey data, peer mentor (n=6) questionnaires, focus groups with unit staff (n=10) and interviews with members of the project leadership team (n=5). Our findings indicated that family bedside orientations became an established practice in the pilot unit and positively impacted family care experiences. We attribute these successes to championing and support from unit staff and our multidisciplinary project leadership team. We discuss how our team addressed family privacy and confidentiality while introducing peer mentors in the unit. We also highlight strategies used to integrate peer mentors as part of the staff team and enhance peer support culture in the pilot unit. Practical considerations for implementing this model in other paediatric environments are provided.

  3. BURDEN AND QUALITY OF LIFE– A COMPARISON OF THOSE CARING FOR PSYCHIATRICALLY ILL AND MEDICALLY ILL

    Directory of Open Access Journals (Sweden)

    Shweta Rupendu

    2018-02-01

    Full Text Available BACKGROUND Despite epidemiological transitions, communicable diseases are widely prevalent world over, concomitantly non-communicable diseases are also on the rise. Mental and behavioural disorders account for 12% of the global burden of disease. Caregiving for both groups of patients, rests with an identified primary caregiver. Caregiving lays a great deal of burden on the caregiver, adversely affecting his quality of life. These factors influence the quality of caregiving, and thereby the long-term well-being of the patient. Differences between the two groups of caregivers has not been studied, more so in the Indian context. MATERIALS AND METHODS 60 caregivers of psychiatrically ill and 63 caregivers of the medically ill were studied. Burden of care was assessed using Elmstahl burden scale, and quality of life (QOL using WHOQOL BREF. RESULTS The socio demographic profile of both groups was similar. All subjects experienced a burden of care, with those caring for the psychiatrically ill experiencing a greater burden. QOL was poorer in the care givers of the psychiatrically ill, especially in those married, employed, and in a lower income group. The female care giver, mostly the spouse, experienced a greater burden of care and a poorer QOL. CONCLUSION Chronicity, stigma, poor insight and disabling dependence of the psychiatrically ill, are probably contributory. A higher caregiver burden and a lower QOL will influence quality of caregiving, and have an adverse effect on the course and prognosis of the illness. There is thus a need for routine assessment of the caregiver, and planned intervention for the same.

  4. Protocol for implementation of family health history collection and decision support into primary care using a computerized family health history system

    Directory of Open Access Journals (Sweden)

    Agbaje Astrid B

    2011-10-01

    Full Text Available Abstract Background The CDC's Family History Public Health Initiative encourages adoption and increase awareness of family health history. To meet these goals and develop a personalized medicine implementation science research agenda, the Genomedical Connection is using an implementation research (T3 research framework to develop and integrate a self-administered computerized family history system with built-in decision support into 2 primary care clinics in North Carolina. Methods/Design The family health history system collects a three generation family history on 48 conditions and provides decision support (pedigree and tabular family history, provider recommendation report and patient summary report for 4 pilot conditions: breast cancer, ovarian cancer, colon cancer, and thrombosis. All adult English-speaking, non-adopted, patients scheduled for well-visits are invited to complete the family health system prior to their appointment. Decision support documents are entered into the medical record and available to provider's prior to the appointment. In order to optimize integration, components were piloted by stakeholders prior to and during implementation. Primary outcomes are change in appropriate testing for hereditary thrombophilia and screening for breast cancer, colon cancer, and ovarian cancer one year after study enrollment. Secondary outcomes include implementation measures related to the benefits and burdens of the family health system and its impact on clinic workflow, patients' risk perception, and intention to change health related behaviors. Outcomes are assessed through chart review, patient surveys at baseline and follow-up, and provider surveys. Clinical validity of the decision support is calculated by comparing its recommendations to those made by a genetic counselor reviewing the same pedigree; and clinical utility is demonstrated through reclassification rates and changes in appropriate screening (the primary outcome

  5. Parent-professional alliance and outcomes of child and family care: A systematic review

    NARCIS (Netherlands)

    Greef, M. de; Pijnenburg, H.M.P.H.M.; Hattum, M.J.C. van; McLeod, B.D.; Scholte, R.H.J.; Valle, J.F. del; Bravo, A.; López, M.

    2016-01-01

    This presentation is based on a systematic review on the association between the parent-professional alliance and outcomes of youth and family care. In child and family social services, parents play an important role (Accurso, Hawley, & Garland, 2013; Chaffin & Bard, 2011). They are either the main

  6. How family physicians address diagnosis and management of depression in palliative care patients.

    NARCIS (Netherlands)

    Warmenhoven, F.C.; Rijswijk, H.C.A.M. van; Hoogstraten, E. van; Spaendonck, K.P.M. van; Lucassen, P.L.B.J.; Prins, J.B.; Vissers, K.; Weel, C. van

    2012-01-01

    PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in

  7. How to Measure the Cost of Foster Family Care.

    Science.gov (United States)

    Settles, Barbara H.; And Others

    This report presents a method for measuring the cost of foster family care in local areas through use of governmental and other available data on costs relating to non-foster children. The cost measurement procedures used, for which 32 pages of tables and worksheet forms are provided, are designed to measure average costs in a particular area…

  8. Putting the Family Back in the Center: A Teach-Back Protocol to Improve Communication During Rounds in a Pediatric Intensive Care Unit.

    Science.gov (United States)

    Bogue, Terri L; Mohr, Lynn

    2017-06-01

    Patient- and family-centered care is endorsed by leading health care organizations. To incorporate the family in interdisciplinary rounds in the pediatric intensive care unit, it is necessary to prepare the family to be an integral member of the child's health care team. When the family is part of the health care team, interdisciplinary rounds ensure that the family understands the process of interdisciplinary rounds and that it is an integral part of the discussion. An evidence-based protocol to provide understanding and support to families related to interdisciplinary rounds has significant impact on satisfaction, trust, and patient outcomes. Copyright © 2017 Elsevier Inc. All rights reserved.

  9. Service-Learning Linking Family Child Care Providers, Community Partners, and Preservice Professionals

    Science.gov (United States)

    Garner, Pamela W.; Parker, Tameka S.

    2016-01-01

    This article describes the implementation of a service-learning project, which was infused into a child development course. The project linked family child care providers, their licensing agency, and 39 preservice teachers in a joint effort to develop a parent handbook to be used by the providers in their child care businesses and to support…

  10. Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: an ethnographic study.

    Science.gov (United States)

    Van Keer, Rose-Lima; Deschepper, Reginald; Francke, Anneke L; Huyghens, Luc; Bilsen, Johan

    2015-12-22

    Conflicts during communication in multi-ethnic healthcare settings is an increasing point of concern as a result of societies' increased ethno-cultural diversity. We can expect that conflicts are even more likely to arise in situations where difficult medical decisions have to be made, such as critical medical situations in hospital. However, in-depth research on this topic is rather scarce. During critical care patients are often unable to communicate. We have therefore investigated factors contributing to conflicts between healthcare professionals and family members from ethnic minority groups in critical medical situations in hospital. Ethnographic fieldwork was done in one intensive care unit of a multi-ethnic urban hospital in Belgium over 6 months (January 2014 to June 2014). Data were collected through negotiated interactive observation, in-depth interviews with healthcare professionals, from patients' medical records, and by making notes in a logbook. Data were analysed by using grounded theory procedures. Conflicts were essentially related to differences in participants' views on what constitutes 'good care' based on different care approaches. Healthcare professionals' views on good care were based predominantly on a biomedical care model, whereas families' views on good care were mainly inspired by a holistic lifeworld-oriented approach. Giving good care, from the healthcare professionals' point of view, included great attention to regulations, structured communication, and central decision making. On the other hand, good care from the families' point of view included seeking exhaustive information, and participating in end-of-life decision making. Healthcare professionals' biomedical views on offering good care were strengthened by the features of the critical care context whereas families' holistic views on offering good care were reinforced by the specific characteristics of families' ethno-familial care context, including their different ethno

  11. Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

    Science.gov (United States)

    Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

    2015-08-01

    Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia. © The Author(s) 2015.

  12. Strategies to Improve Stroke Care Services in Low- and Middle-Income Countries

    DEFF Research Database (Denmark)

    Pandian, Jeyaraj Durai; William, Akanksha G; Kate, Mahesh P

    2017-01-01

    subsidies. Adherence to secondary preventive drugs is affected by limited availability and affordability, emphasizing the importance of primary prevention. Training of paramedics, care-givers and nurses in post-stroke care is feasible. CONCLUSION: In this systematic review, we found several reports...... on evidence-based implementable stroke services in LMICs. Some strategies are economic, feasible and reproducible but remain untested. Data on their outcomes and sustainability is limited. Further research on implementation of locally and regionally adapted stroke-services and cost-effective secondary......BACKGROUND: The burden of stroke in low- and middle-income countries (LMICs) is large and increasing, challenging the already stretched health-care services. AIMS AND OBJECTIVES: To determine the quality of existing stroke-care services in LMICs and to highlight indigenous, inexpensive, evidence...

  13. Work engagement and attitudes toward caring for dying patients and families among home-visiting nurses in Japan.

    Science.gov (United States)

    Mahiro, Sakai; Takashi, Naruse; Satoko, Nagata

    2014-07-01

    Nurses with higher levels of work engagement tend to be highly efficient in their work and more willing to keep working and to provide patient-centred care. However, whether more engaged nurses provide end-of-life care more proactively has not been examined in the home-care setting. This study aimed to examine work engagement among home-visiting nurses in Japan and its relationship with their attitudes toward caring for dying patients and their families. A total of 343 nurses working in 62 agencies across Chiba prefecture, eastern Japan, received an anonymous self-administered questionnaire from July to August 2012. The authors performed multiple regression analysis to explore the relationships between home-visiting nurses' work engagement and attitudes. Data from 184 nurses (53.6%) was analysed. Work engagement was significantly positively related to the nurses' attitudes toward caring for dying patients and their families. As more engaged nurses tend to have more positive attitudes toward caring for dying patients and their families, further research is needed to identify the factors that might help nursing managers to enhance their staff's engagement and perhaps thereby improve their attitudes, with the ultimate aim of achieving better outcomes for patients and families.

  14. Differential Family Experience of Palliative Sedation Therapy in Specialized Palliative or Critical Care Units.

    Science.gov (United States)

    Shen, Hui-Shan; Chen, Szu-Yin; Cheung, Denise Shuk Ting; Wang, Shu-Yi; Lee, Jung Jae; Lin, Chia-Chin

    2018-02-21

    No study has examined the varying family experience of palliative sedation therapy (PST) for terminally ill patients in different settings. To examine and compare family concerns about PST use and its effect on the grief suffered by terminally ill patients' families in palliative care units (PCUs) or intensive care units (ICUs). A total of 154 family members of such patients were recruited in Taiwan, of whom 143 completed the study, with 81 from the PCU and 62 from the ICU. Data were collected on their concerns regarding PST during recruitment. Grief levels were assessed at three days and one month after the patient's death with the Texas Revised Inventory of Grief. Families' major concern about sedated patients in the PCU was that "there might be other ways to relieve symptoms" (90.2%), whereas families of ICU sedated patients gave the highest ratings to "feeling they still had something more to do" (93.55%), and "the patient's sleeping condition was not dignified" (93.55%). Family members recruited from the ICU tended to experience more grief than those from the PCU (P = 0.005 at Day 3 and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  15. The needs of patient family members in the intensive care unit in Kigali Rwanda

    Directory of Open Access Journals (Sweden)

    Petra Brysiewicz

    2014-07-01

    Full Text Available Background. The admission of a relative to an intensive care unit (ICU is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda.Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda.Methods. This study used a quantitative exploratory design focused on exploring the needs of patient family members in ICU at one hospital in Kigali, Rwanda. Family members (N=40 were recruited using the convenience sampling strategy. The Critical Care Family Needs Inventory was used to collect relevant data.Results. The participants identified various needs to be met for the family during the patient’s admission in ICU. The most important was the need for assurance, followed by the need for comfort, information, proximity and lastly support. Three additional needs specific to this sample group were also identified, related to resource constraints present in the hospital where the study was carried out.Conclusion. These results offer insight for nurses and other healthcare professionals as to what the important needs are that must be considered for the patient family members in ICUs within a resource-constrained environment.

  16. Balancing Work and Family Responsibilities: Flextime and Child Care in the Federal Government.

    Science.gov (United States)

    Ezra, Marni; Deckman, Melissa

    1996-01-01

    Analysis of a sample from the 1991 Survey of Federal Employees (n=28,329, 37% parents) found that satisfaction with the work-family balance is a vital component of job satisfaction. Such policies as onsite child care and flextime help employees face the demands of work and family. (SK)

  17. Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities.

    Science.gov (United States)

    Wallerstedt, Birgitta; Andershed, Birgitta; Benzein, Eva

    2014-12-01

    To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation. Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

  18. Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

    Science.gov (United States)

    Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

    2015-06-01

    Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare

  19. Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers.

    Science.gov (United States)

    Hutchison, Lauren A; Raffin-Bouchal, Donna S; Syme, Charlotte A; Biondo, Patricia D; Simon, Jessica E

    2017-09-01

    Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until "illness burden necessitates," so there is little "advance" care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient's illness trajectory, distinguished from end-of-life decision making.

  20. Integration of Mobile Devices to Facilitate Patient Care and Teaching During Family-Centered Rounds.

    Science.gov (United States)

    Byrd, Angela S; McMahon, Pamela M; Vath, Richard J; Bolton, Michael; Roy, Melissa

    2018-01-01

    The increasing prevalence of mobile devices in clinical settings has the potential to improve both patient care and education. The benefits are particularly promising in the context of family-centered rounds in inpatient pediatric settings. We aimed to increase mobile device usage by inpatient rounding teams by 50% in 6 months. We hoped to demonstrate that use of mobile devices would improve access to patient care and educational information and to determine if use would improve efficiency and perceptions of clinical teaching. We designed a mixed-methods study involving pre- and post-implementation surveys to residents, families, and faculty as well as direct observations of family-centered rounds. We conducted rapid cycles of continual quality improvement by using the Plan-Do-Study-Act framework involving 3 interventions. Pre-intervention, the mobile computing cart was used for resident education on average 3.3 times per rounding session. After cycle 3, teaching through the use of mobile devices increased by ∼79% to 5.9 times per rounding session. On the basis of survey data, we determined there was a statistically significant increase in residents' perception of feeling prepared for rounds, receiving teaching on clinical care, and ability to teach families. Additionally, average time spent per patient on rounds decreased after implementation of mobile devices. Integration of mobile devices into a pediatric hospital medicine teaching service can facilitate patient care and perception of resident teaching by extending the utility of electronic medical records in care decisions and by improving access to knowledge resources. Copyright © 2018 by the American Academy of Pediatrics.

  1. Evidence-based medicine in primary care: qualitative study of family physicians

    Directory of Open Access Journals (Sweden)

    Dantas Guilherme

    2003-05-01

    Full Text Available Abstract Background The objectives of this study were: a to examine physician attitudes to and experience of the practice of evidence-based medicine (EBM in primary care; b to investigate the influence of patient preferences on clinical decision-making; and c to explore the role of intuition in family practice. Method Qualitative analysis of semi-structured interviews of 15 family physicians purposively selected from respondents to a national survey on EBM mailed to a random sample of Canadian family physicians. Results Participants mainly welcomed the promotion of EBM in the primary care setting. A significant number of barriers and limitations to the implementation of EBM were identified. EBM is perceived by some physicians as a devaluation of the 'art of medicine' and a threat to their professional/clinical autonomy. Issues regarding the trustworthiness and credibility of evidence were of great concern, especially with respect to the influence of the pharmaceutical industry. Attempts to become more evidence-based often result in the experience of conflicts. Patient factors exert a powerful influence on clinical decision-making and can serve as trumps to research evidence. A widespread belief that intuition plays a vital role in primary care reinforced views that research evidence must be considered alongside other factors such as patient preferences and the clinical judgement and experience of the physician. Discussion Primary care physicians are increasingly keen to consider research evidence in clinical decision-making, but there are significant concerns about the current model of EBM. Our findings support the proposed revisions to EBM wherein greater emphasis is placed on clinical expertise and patient preferences, both of which remain powerful influences on physician behaviour.

  2. Evidence-based medicine in primary care: qualitative study of family physicians.

    Science.gov (United States)

    Tracy, C Shawn; Dantas, Guilherme Coelho; Upshur, Ross E G

    2003-05-09

    The objectives of this study were: a) to examine physician attitudes to and experience of the practice of evidence-based medicine (EBM) in primary care; b) to investigate the influence of patient preferences on clinical decision-making; and c) to explore the role of intuition in family practice. Qualitative analysis of semi-structured interviews of 15 family physicians purposively selected from respondents to a national survey on EBM mailed to a random sample of Canadian family physicians. Participants mainly welcomed the promotion of EBM in the primary care setting. A significant number of barriers and limitations to the implementation of EBM were identified. EBM is perceived by some physicians as a devaluation of the 'art of medicine' and a threat to their professional/clinical autonomy. Issues regarding the trustworthiness and credibility of evidence were of great concern, especially with respect to the influence of the pharmaceutical industry. Attempts to become more evidence-based often result in the experience of conflicts. Patient factors exert a powerful influence on clinical decision-making and can serve as trumps to research evidence. A widespread belief that intuition plays a vital role in primary care reinforced views that research evidence must be considered alongside other factors such as patient preferences and the clinical judgement and experience of the physician. Primary care physicians are increasingly keen to consider research evidence in clinical decision-making, but there are significant concerns about the current model of EBM. Our findings support the proposed revisions to EBM wherein greater emphasis is placed on clinical expertise and patient preferences, both of which remain powerful influences on physician behaviour.

  3. Palliative care for Latino patients and their families: whenever we prayed, she wept.

    Science.gov (United States)

    Smith, Alexander K; Sudore, Rebecca L; Pérez-Stable, Eliseo J

    2009-03-11

    Latinos account for 15% of the US population, a proportion projected to grow to 30% by the year 2050. Although there is tremendous diversity within this community, commonalities of language, beliefs, attitudes, and behaviors unite Latinos, making them more similar than different. Differences by national origin, although important, are attenuated when immigrants come to the United States, dominated by an English-language, Anglo-centric culture. For non-Latino and non-Spanish-speaking clinicians, communication barriers and cultural misunderstandings can impede the care of dying Latino patients and their families. We present the case of a young, pregnant, Spanish-speaking woman from Central America diagnosed with a fatal leukemia. As illustrated by this case, Latino immigrants face a number of external challenges to optimal end-of-life care: (1) geographic distance as well as political and economic realities often separate patients from their valued families; (2) undocumented immigrants are frequently uninsured and fear of deportation may create a barrier to accessing health services; (3) language and literacy barriers; and (4) concerns about discrimination. Other Latino issues that may be more pronounced in end-of-life settings include cultural themes and religious and spiritual influences. We recommend that professional interpreters must be used for discussions about goals of care with Spanish-speaking patients and families or when negotiating conflict between the patient, family, and the health care team. Concrete suggestions are provided for clinicians in working with interpreters, eliciting culturally based attitudes and beliefs, and implementing universal strategies for clear health communication.

  4. Study of American and Chinese family members' evaluations on institutionalized care for their older parents: potential development in the future.

    Science.gov (United States)

    Li, Yushi; Buechel, Annie

    2007-01-01

    The evaluations on institutionalized care facilities from family members, after their loved ones moved into such services, are very different from culture to culture, family to family and person to person. According to a recent survey in the United States and China, it is found that different cultures and the different health conditions of the residents strongly influence family member's viewpoints on institutionalized care services. It is also found that the availability of the institutionalized care facilities plays a significant role, which strongly affects family members' evaluations on nursing home services.

  5. Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults.

    Science.gov (United States)

    Beach, Scott R; Schulz, Richard

    2017-03-01

    To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  6. A Comparison of Surgery and Family Medicine Residents' Perceptions of Cross-Cultural Care Training of Cross-Cultural Care Training

    OpenAIRE

    Chun, Maria BJ; Jackson, David S; Lin, Susan Y; Park, Elyse R

    2010-01-01

    The need for physicians formally trained to deliver care to diverse patient populations has been widely advocated. Utilizing a validated tool, Weissman and Betancourt's Cross-Cultural Care Survey, the aim of this current study was to compare surgery and family medicine residents' perceptions of their preparedness and skillfulness to provide high quality cross-cultural care. Past research has documented differences between the two groups' reported impressions of importance and level of instruc...

  7. Advance Care Planning in Nursing Home Patients With Dementia: A Qualitative Interview Study Among Family and Professional Caregivers.

    Science.gov (United States)

    van Soest-Poortvliet, Mirjam C; van der Steen, Jenny T; Gutschow, Giselka; Deliens, Luc; Onwuteaka-Philipsen, Bregje D; de Vet, Henrica C W; Hertogh, Cees M P M

    2015-11-01

    The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. A qualitative descriptive study. A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most

  8. Geriatric Core Competencies for Family Medicine Curriculum and Enhanced Skills: Care of Elderly

    OpenAIRE

    Charles, Lesley; Triscott, Jean A.C.; Dobbs, Bonnie M.; McKay, Rhianne

    2014-01-01

    Background There is a growing mandate for Family Medicine residency programs to directly assess residents’ clinical competence in Care of the Elderly (COE). The objectives of this paper are to describe the development and implementation of incremental core competencies for Postgraduate Year (PGY)-I Integrated Geriatrics Family Medicine, PGY-II Geriatrics Rotation Family Medicine, and PGY-III Enhanced Skills COE for COE Diploma residents at a Canadian University. Methods Iterative expert panel...

  9. Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Frieda Finlay

    2011-10-01

    Full Text Available PurposeRespite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services.  However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.MethodThis qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers.  Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters, were held in seven locations across the Republic of Ireland. ResultsThree main themes dominated the discussions.  The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers.  The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability.  The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services. ConclusionsRespite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals.  This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.doi 10.5463/DCID.v22i2.22Key wordsIntellectual disability, respite, family members, Ireland 

  10. Doctor-patient communication without family is most frequently practiced in patients with malignant tumors in home medical care settings.

    Science.gov (United States)

    Kimura, Takuma; Imanaga, Teruhiko; Matsuzaki, Makoto

    2014-01-01

    Promotion of home medical care is absolutely necessary in Japan where is a rapidly aging society. In home medical care settings, triadic communications among the doctor, patient and the family are common. And "communications just between the doctor and the patient without the family" (doctor-patient communication without family, "DPC without family") is considered important for the patient to frankly communicate with the doctor without consideration for the family. However, the circumstances associated with DPC without family are unclear. Therefore, to identify the factors of the occurrence of DPC without family, we conducted a cross-sectional mail-in survey targeting 271 families of Japanese patients who had previously received home medical care. Among 227 respondents (83.8%), we eventually analyzed data from 143, excluding families of patients with severe hearing or cognitive impairment and severe verbal communication dysfunction. DPC without family occurred in 26.6% (n = 38) of the families analyzed. A multivariable logistic regression analysis was performed using a model including Primary disease, Daily activity, Duration of home medical care, Interval between doctor visits, Duration of doctor's stay, Existence of another room, and Spouse as primary caregiver. As a result, DPC without family was significantly associated with malignant tumor as primary disease (OR, 3.165; 95% CI, 1.180-8.486; P = 0.022). In conclusion, the visiting doctors should bear in mind that the background factor of the occurrence of DPC without family is patient's malignant tumors.

  11. Family child care providers' self-perceived role in obesity prevention: working with children, parents, and external influences.

    Science.gov (United States)

    Rosenthal, Marjorie S; Crowley, Angela A; Curry, Leslie

    2013-01-01

    To describe the perspective and strategies of family child care providers (FCCPs) to reduce children's suboptimal weight trajectories. In-person, in-depth interviews with FCCPs. Family child care homes. Seventeen FCCPs caring for children 6 weeks to 9 years old; 94% caring for children paying with a state subsidy. Strategies of FCCP to reduce children's suboptimal weight trajectories. Constant comparative method of qualitative data analysis. Family child care providers described 3 core strategies: (1) improving children's behavior, (2) engaging and educating parents, and (3) leveraging influences external to their relationship with parents to effect positive change and to avoid parental conflict. These strategies were framed within their knowledge of child development, parental communication, and community services. The findings suggest that FCCPs' role in obesity prevention may be framed within knowledge that may be commonly expected of a child care provider. Partnerships between public health policy makers and FCCP may reduce obesigenic environments by employing training and resources that link obesity prevention and child care provider expertise. Copyright © 2013 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.

  12. Intervention for depression among palliative care patients and their families: A study protocol for evaluation of a training program for professional care staff.

    Science.gov (United States)

    Hallford, David J; McCabe, Marita P; Mellor, David; Davison, Tanya E; Goldhammer, Denisa L; George, Kuruvilla; Storer, Shane

    2011-06-13

    Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described. A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention. This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members. Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088.

  13. Physician Approaches to Conflict with Families Surrounding End-of-Life Decision-making in the Intensive Care Unit. A Qualitative Study.

    Science.gov (United States)

    Mehter, Hashim M; McCannon, Jessica B; Clark, Jack A; Wiener, Renda Soylemez

    2018-02-01

    Families of critically ill patients are often asked to make difficult decisions to pursue, withhold, or withdraw aggressive care or resuscitative measures, exercising "substituted judgment" from the imagined standpoint of the patient. Conflict may arise between intensive care unit (ICU) physicians and family members regarding the optimal course of care. To characterize how ICU physicians approach and manage conflict with surrogates regarding end-of-life decision-making. Semistructured interviews were conducted with 18 critical care physicians from four academically affiliated hospitals. Interview transcripts were analyzed using methods of grounded theory. Physicians described strategies for engaging families to resolve conflict about end-of-life decision-making and tending to families' emotional health. Physicians commonly began by gauging family receptiveness to recommendations from the healthcare team. When faced with resistance to recommendations for less aggressive care, approaches ranged from deference to family wishes to various persuasive strategies designed to change families' minds, and some of those strategies may be counterproductive or harmful. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family's "substituted judgment" and the ability to control patient pain and suffering. Physicians reported concern for the family's emotional needs and made efforts to alleviate the burden on families by assuming decision-making responsibility and expressing nonabandonment and commitment to the patient. Physicians were attentive to repairing damage to their relationship with the family in the aftermath of conflict. Finally, physicians described their own emotional responses to conflict, ranging from frustration and anxiety to satisfaction with successful resolution of conflict. Critical care physicians described a complex and multilayered approach to physician-family conflict. The reported strategies

  14. Telecare and older people: who cares where?

    Science.gov (United States)

    Milligan, Christine; Roberts, Celia; Mort, Maggie

    2011-02-01

    'Telecare solutions' are seen as a potential means of addressing the future care needs of ageing societies in Western economies. The development of these remote care systems runs in parallel with policies aimed at 'ageing in place'; and is targeted at supporting the perceived care needs of frail older people within the home. Drawing on ethnographic and deliberative panel data from European Community funded research, we consider how these developments contribute to a reshaping of the place and experience of care for older people. We do so by addressing the ways in which remote care systems can, firstly, act to change the experience of home; and secondly, re-order the place of care-work and responsibilities to care as new actors become enrolled within the care network and existing care-givers take on differing roles and responsibilities. Finally, we consider how this paper contributes to conceptual debates around institution and extitution - that is, the de-territorialisation of the physical structure of the institution and its re-manifestation through new spaces and times that seek to end interior and exterior distinctions. Copyright © 2010 Elsevier Ltd. All rights reserved.

  15. You Can't Fight the System: Strategies of Family Justice in Foster Care Reintegration.

    Science.gov (United States)

    Crenshaw, Wes; Barnum, David

    2001-01-01

    Discusses the issue of justice in family therapy interventions and shares several strategies and ways of thinking about the therapy of foster care. Illustrates a case study and the interventions used to restore justice to a family caught up in the "system." (GCP)

  16. Iranian family caregivers' challenges and issues in caring of multiple sclerosis patients: A descriptive explorative qualitative study.

    Science.gov (United States)

    Masoudi, Reza; Abedi, Heidar Ali; Abedi, Parvin; Mohammadianinejad, Seyed Ehsan

    2014-07-01

    The broad spectrum of problems caused by multiple sclerosis (MS) imposes heavy responsibility to caregivers in caring of their patients. Therefore, they encounter many issues and challenges in this situation. The purpose of this study was to explore the experiences and challenges of MS family caregivers. A qualitative design, based on a thematic analysis approach, was used to reach the study aim. Data were collected and analyzed concurrently through in-depth unstructured interviews, field notes, and observations that were held with 23 participants (14 family caregivers and 9 MS patients) at two referral centers in Ahvaz, Iran. THREE MAJOR THEMES WERE EXTRACTED FROM THE ANALYSIS OF THE TRANSCRIPTS: "emotional exhaustion of caregivers," "uncertain atmosphere of caring," and "insularity care." The first theme consisted of three subthemes: "stressful atmosphere of caring," "conflict and animism," and "continuing distress affecting the caregiver." The second theme consisted of three subthemes: "unstable and complicacy of disease," "caring with trial and error," and "frequent hospitalization of patients," and the third theme consisted of two subthemes: "caring gap and disintegration" and "lack of sufficient support." This study will be useful to healthcare system for managing the challenges of MS patients' family caregivers. Improving the conditions and performance of family caregivers is crucial in order to provide high-quality care to people with MS.

  17. The needs of family members of intensive care unit patients: A ...

    African Journals Online (AJOL)

    ARTICLE. 44 SAJCC November 2016, Vol. 32, No. 2. The needs of family members of intensive care unit patients: A ... loved one will be survival, disability or death.[1] .... the participants of this study (the constructivist paradigm, which was.

  18. Family Satisfaction With Nursing Home Care: The Role of Facility Characteristics and Resident Quality-of-Life Scores

    Science.gov (United States)

    Shippee, Tetyana P.; Henning-Smith, Carrie; Gaugler, Joseph E.; Held, Robert; Kane, Robert L.

    2018-01-01

    This article explores the factor structure of a new family satisfaction with nursing home care instrument and determines the relationship of resident quality of life (QOL) and facility characteristics with family satisfaction. Data sources include (1) family satisfaction interviews (n = 16,790 family members), (2) multidimensional survey of resident QOL (n = 13,433 residents), and (3) facility characteristics (n = 376 facilities). We used factor analysis to identify domains of family satisfaction and multivariate analyses to identify the role of facility-level characteristics and resident QOL on facility-mean values of family satisfaction. Four distinct domains were identified for family satisfaction: “care,” “staff,” “environment,” and “food.” Chain affiliation, higher resident acuity, more deficiencies, and large size were all associated with less family satisfaction, and resident QOL was a significant (albeit weak) predictor of family satisfaction. Results suggest that family member satisfaction is distinct from resident QOL but is associated with resident QOL and facility characteristics. PMID:26534835

  19. [Home care to the elderly who had stroke].

    Science.gov (United States)

    Pedreira, Larissa Chaves; Lopes, Regina Lúcia Mendonça

    2010-01-01

    The purpose was to Identify the knowledge production about the stroke in elderly under home care. Bibliographic research whose data were collected though the abstracts from 1997 to 2007, contained in LILACS and SciELO databases. The following key words were used: home assistance, aged people and cerebrovascular accident. Fifty-two references were found in the LILACS database, nine in the SciELO Brazil, and three in the SciELO Cuba. Most of the researches were carried out in 2000. Regarding the method, qualitative method predominance were observed, and central theme is related to the care giver, as well as to the clinical and epidemiologic aspects of the disease. It was observed that this knowledge is still established in Brazil, and the themes related to the person submitted to home care and violence to the aged are still little explored.

  20. Efficacy of psychosocial intervention in patients with mild Alzheimer's disease: the multicentre, rater blinded, randomised Danish Alzheimer Intervention Study (DAISY)

    DEFF Research Database (Denmark)

    Waldorff, F.B.; Buss, D.V.; Eckermann, A.

    2012-01-01

    To assess the efficacy at 12 months of an early psychosocial counselling and support programme for outpatients with mild Alzheimer's disease and their primary care givers.......To assess the efficacy at 12 months of an early psychosocial counselling and support programme for outpatients with mild Alzheimer's disease and their primary care givers....