WorldWideScience

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. 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.

  3. 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

  4. 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

  5. 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.

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

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    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.

  7. 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.

  8. 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.

  9. 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.

  10. 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 ...

  11. 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.

  12. 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.

  13. 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.

  14. 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

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

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    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

  16. 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.

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

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    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.

  18. 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.

  19. 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

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

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    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.

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

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    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

  2. 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 ...

  3. 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.

  4. Coping with Mental Illness in the Family.

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    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…

  5. 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

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

    Directory of Open Access Journals (Sweden)

    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.

  7. 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.

  8. 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

  9. 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.

  10. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

  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. Foreign-born care givers in Washington State nursing homes: characteristics, associations with quality of care, and views of administrators.

    Science.gov (United States)

    Acker, Katherine; Pletz, Anna Maria; Katz, Aaron; Hagopian, Amy

    2015-06-01

    Following national trends, Washington State relies heavily on foreign-born workers to provide long-term care. Our study assesses state nursing facility characteristics, quality ratings, and the views of facility administrators about the implications of an increasing number of foreign-born employees. We used independently available data to supplement a survey of nursing home administrators. Nearly half of the administrators reported difficulty hiring U.S.-born job applicants. Three in four administrators reported problems related to language differences, and just more than a third reported challenges related to cultural and/or religious differences. Nonetheless, the proportion of foreign-born employees was positively associated with independent facility quality ratings. Almost half of the administrators reported discrimination by patients/clients toward their foreign-born workers. Quality ratings were negatively associated with for-profit, chain, or multi-ownership status. The proportion of foreign-born employees in nursing facilities may be associated with improved performance. © The Author(s) 2014.

  14. 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.

  15. [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.

  16. 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

  17. 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

  18. 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.

  19. 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。

  20. 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.

  1. 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

  2. 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.

  3. 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 ...

  4. 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…

  5. 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)

  6. Agreement between clinicians' and care givers' assessment of intelligence in Nigerian children with intellectual disability: 'ratio IQ' as a viable option in the absence of standardized 'deviance IQ' tests in sub-Saharan Africa

    Directory of Open Access Journals (Sweden)

    Aguocha Chinyere M

    2009-09-01

    Full Text Available Abstract Background There may be need to assess intelligent quotient (IQ scores in sub-Saharan African children with intellectual disability, either for the purpose of educational needs assessment or research. However, modern intelligence scales developed in the western parts of the world suffer limitation of widespread use because of the influence of socio-cultural variations across the world. This study examined the agreement between IQ scores estimation among Nigerian children with intellectual disability using clinicians' judgment based on International Classification of Diseases, tenth Edition (ICD - 10 criteria for mental retardation and caregivers judgment based on 'ratio IQ' scores calculated from estimated mental age in the context of socio-cultural milieu of the children. It proposed a viable option of IQ score assessment among sub-Saharan African children with intellectual disability, using a ratio of culture-specific estimated mental age and chronological age of the child in the absence of standardized alternatives, borne out of great diversity in socio-cultural context of sub-Saharan Africa. Methods Clinicians and care-givers independently assessed the children in relation to their socio-cultural background. Clinicians assessed the IQ scores of the children based on the ICD - 10 diagnostic criteria for mental retardation. 'Ratio IQ' scores were calculated from the ratio of estimated mental age and chronological age of each child. The IQ scores as assessed by the clinicians were then compared with the 'ratio IQ' scores using correlation statistics. Results A total of forty-four (44 children with intellectual disability were assessed. There was a significant correlation between clinicians' assessed IQ scores and the 'ratio IQ' scores employing zero order correlation without controlling for the chronological age of the children (r = 0.47, df = 42, p = 0.001. First order correlation controlling for the chronological age of the children

  7. Agreement between clinicians' and care givers' assessment of intelligence in Nigerian children with intellectual disability: 'ratio IQ' as a viable option in the absence of standardized 'deviance IQ' tests in sub-Saharan Africa.

    Science.gov (United States)

    Bakare, Muideen O; Ubochi, Vincent N; Okoroikpa, Ifeoma N; Aguocha, Chinyere M; Ebigbo, Peter O

    2009-09-15

    There may be need to assess intelligent quotient (IQ) scores in sub-Saharan African children with intellectual disability, either for the purpose of educational needs assessment or research. However, modern intelligence scales developed in the western parts of the world suffer limitation of widespread use because of the influence of socio-cultural variations across the world. This study examined the agreement between IQ scores estimation among Nigerian children with intellectual disability using clinicians' judgment based on International Classification of Diseases, tenth Edition(ICD - 10) criteria for mental retardation and caregivers judgment based on 'ratio IQ' scores calculated from estimated mental age in the context of socio-cultural milieu of the children. It proposed a viable option of IQ score assessment among sub-Saharan African children with intellectual disability, using a ratio of culture-specific estimated mental age and chronological age of the child in the absence of standardized alternatives, borne out of great diversity in socio-cultural context of sub-Saharan Africa. Clinicians and care-givers independently assessed the children in relation to their socio-cultural background. Clinicians assessed the IQ scores of the children based on the ICD - 10 diagnostic criteria for mental retardation. 'Ratio IQ' scores were calculated from the ratio of estimated mental age and chronological age of each child. The IQ scores as assessed by the clinicians were then compared with the 'ratio IQ' scores using correlation statistics. A total of forty-four (44) children with intellectual disability were assessed. There was a significant correlation between clinicians' assessed IQ scores and the 'ratio IQ' scores employing zero order correlation without controlling for the chronological age of the children (r = 0.47, df = 42, p = 0.001). First order correlation controlling for the chronological age of the children showed higher correlation score between clinicians

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

    Directory of Open Access Journals (Sweden)

    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.

  9. 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.

  10. 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.

  11. 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…

  12. 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.

  13. "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.

  14. 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.

  15. 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.

  16. 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

  17. 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.

  18. 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.

  19. 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…

  20. 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.

  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. Humanized care in the family health strategy

    Directory of Open Access Journals (Sweden)

    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.

  3. 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.

  4. 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.

  5. 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...

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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

  11. 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

  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. 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...

  14. AIDS: Secretions and Implications for Nursing Care-Givers.

    Science.gov (United States)

    1992-05-06

    insides the females’ vaginas and the males’ urethras. In each case the virus was placed on undamaged tissues. These findings of mucosal infection support...more vulnerable to acquiring HIV infections, although the precise reasons are unclear. One theory is that the vagina can act as a reservoir for HIV...misunderstandings and myths . Since HIV has become an entity that touches all specialties of nursing, schools of nursing must formulate curricula

  15. 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.

  16. 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

  17. 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.

  18. 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.

  19. 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.

  20. 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

  1. 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…

  2. 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.

  3. 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.

  4. O trabalho e a saúde de cuidadores de adolescentes com deficiência: uma aproximação a partir do ponto de vista da atividade Work and health status of care-givers of disable adolescents: an approach from the activity point of view

    Directory of Open Access Journals (Sweden)

    Letícia Pessoa Masson

    2008-12-01

    Janeiro City Council. The objective was to understand how the work activity of caregivers (which is natural and invisible due to its association with domestic-maternal work is related to the health-disease process experienced by these workers. The chosen method has been a combination of field observations, individual and collectives half-structured interviews using the ergological perspective and, mainly, its concepts. We point out the following important results: naturalized prescriptions of care; high intensity in work performance; problems related to planning and time-management; building cooperation among care givers, enabling, even though in a poor manner, to achieve the work; great affective ties among users as a job demand, as an important agent of the health-disease process, and also to give meaning to the work. Because the care giving work is seen as natural, /parental, it contributes to the low offer of theoretic-practical tools for the professional practice. The scarce qualification level seems to increase health risks in these workers, since they have limited access to techniques and work conditions that make a successful result possible. Thus, these factors, associated to relational work invisibility occurring in that setting, leads to weakening in the fight for health status and the ability to recreate work norms.

  5. 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.

  6. 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.

  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. 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.

  9. 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.

  10. 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.

  11. 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.

  12. 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

  13. 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.

  14. 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.

  15. Military Families: Child Care Support During Deployments

    Science.gov (United States)

    ... temporary caregiver far in advance will make your children feel more secure. Try to have the caregiver connect prior to deployment through visits, phone calls, or social media. If you will be relocating to a family ...

  16. [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.

  17. 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...

  18. 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.

  19. 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.

  20. 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…

  1. 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.

  2. 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.

  3. 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.

  4. 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

  5. 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.

  6. 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…

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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.

  12. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. Family Models for Earning and Caring: Implications for Child Care and for Family Policy

    Directory of Open Access Journals (Sweden)

    Ravanera, Zenaida

    2009-01-01

    Full Text Available AbstractCanadian 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 infamilies. 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 andtoddler 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 parentalpreferences 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.RésuméLa famille canadiennes a changé, dû en partie à une économie qui offre plus de possibilités d’emploi pour les femmes, et à une tendance culturelle qui valorise l’égalité des chances et la diversité dans les familles. En dépit de ces changements, les preuves quantitatives et qualitatives suggèrent une préférence continue pour les mères de passer plus de temps avec les enfants, particulièrement quand il s’agit de nouveau-nés ou d’enfants en bas âge. Donc, pour un couple moyen, la présence de jeunes enfants au foyer pousse les femmes à réduire leurs emplois rémunérés et les maris à augmenter les leurs. Notre étude des préférences parentales suggère un intérêt pour un accroissement des services pour jeunes enfants sous la forme d’éducation préscolaire et de garde d’enfants, et aussi un intérêt pour des politiques qui permettraient aux parents de passer plus de temps avec leurs enfants tels que cong

  20. 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.

  1. 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.

  2. 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

  3. 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…

  4. 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...

  5. [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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. Care management actions in the Family Health Strategy

    Directory of Open Access Journals (Sweden)

    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.

  12. 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

  13. 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

  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. "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.

  16. 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.

  17. 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 ...

  18. Canadian Families' Strategies for Employment and Care for Preschool Children

    Science.gov (United States)

    Ornstein, Michael; Stalker, Glenn J.

    2013-01-01

    Based on the 2006 Canadian Census "long form" sample of one in every five households, the authors develop a detailed typology of family strategies for employment and the care of preschool children. The analysis is restricted to opposite-sex couples with at least one child under age 6 and no older child or other adult in the household.…

  19. 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…

  20. 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.

  1. 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.

  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. 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.

  4. 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.

  5. 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…

  6. 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.

  7. 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…

  8. 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.

  9. 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.

  10. 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

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

    Directory of Open Access Journals (Sweden)

    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

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

    Directory of Open Access Journals (Sweden)

    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.

  13. 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.

  14. 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...

  15. 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.

  16. 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.

  17. 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)…

  18. 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.

  19. 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.

  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. 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...

  2. 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.

  3. 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.

  4. 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...

  5. 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.

  6. 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.

  7. Challenges in mental health care in the Family Health Strategy

    Directory of Open Access Journals (Sweden)

    Consuelo Helena Aires de Freitas

    2011-06-01

    Full Text Available Objective: To discuss the practice of mental health care performed by healthcare professionals from the Family Health Strategy in Fortaleza-CE, Brazil. Methods: This is a critical and reflective study conducted in six Basic Health Units in Fortaleza-Ce. The study subjects were 12 health workers of the following professions: doctor, nurse, community health agents and technical and/or nursing assistant. Semi-structured interviews, systematic observationand questionnaire were used for data collection. The empirical analysis was based on an understanding of the discourses through critical hermeneutics. Results: It was evident that the mental health services are developed by some health workers in the ESF, such as, matrix support, relational technologies, home visits and community group therapy. However, there is still deficiency in training/coaching by most professionals in primary care, due to anenduring model of pathological or curative health care. Conclusion: Mental health care is still occasionally held by some workers in primary care. However, some progresses are already present as matrix support, relational technologies in health care, home visits andcommunity therapy.

  8. 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

  9. 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...

  10. 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…

  11. 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…

  12. 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.

  13. 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.

  14. 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

  15. 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…

  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. 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.

  18. 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.

  19. 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…

  20. 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 ...

  1. 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.

  2. 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…

  3. 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.

  4. 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

  5. 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

  6. (Transnational intergenerational care contract. Attitudes and practises of transnational families towards elderly care

    Directory of Open Access Journals (Sweden)

    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.

  7. 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.

  8. Cancer patients' use of family practice and secondary care

    DEFF Research Database (Denmark)

    Sokolowski, Ineta; Kjeldgaard, Anette Hvenegaard; Olesen, Frede

    Aims: We know that in Denmark some 90% of citizens have contact with family practice (FP) during a year and around 40% has contact with secondary care.  This demands efforts to create integrated and shared care. The aim of this study is to document the pattern of contacts with FP among patients...... population b) about 33,000 patients diagnosed with cancer in 2007, and c) about 220,000 patients living with a previous diagnosis of cancer.        Results: Data for the total population is known. The total number of contacts with FP in daytime is about 38.4 million, with out of hours service about 2...

  9. Family caregivers: Competence in the care of the chronically ill

    Directory of Open Access Journals (Sweden)

    Olga Marina Vega Angarita

    2018-01-01

    Full Text Available Introduction: Because of the high demand and costs of care, chronic diseases have shown an increasing number of caregivers who develop their role without the required training and skill. Objective: To describe the capacity for home care of caregivers of patients with chronic illness in a service provider institution of San José de Cúcuta. Materials and methods: Descriptive quantitative cross-sectional study, developed in the fi rst half of 2017. The sample was composed by 360 caregivers of patients with chronic disease. We used the instruments developed by the Chronic Patient Care Group of the Faculty of Nursing of the National University of Colombia called: GCPC-UN-C © - technical characterization chart for family caregivers of patients with chronic non-transferable disease and the instrument “Caring” - short version to measure the competence of care at home. Results: In the study, low and medium levels of competence of the caregivers were reported in the exercise of their role, and the categories Knowledge and Enjoyment (Welfare were more affected. It is important to note that caregivers with a high level of competence were not reported. Conclusion: The results show that the need for nursing intervention in strengthening the competence of caregivers remains an important constant of professional performance.

  10. 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.

  11. Trusting families: Responding to Mary Ann Meeker, "Responsive care management: family decision makers in advanced cancer".

    Science.gov (United States)

    Nelson, James Lindemann

    2011-01-01

    Mary Ann Meeker's article admirably reminds readers that family members are involved in--or "responsively manage"--the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There's reason to be worried, however, that one explicit aim of the article--to ease the standing anxieties that many clinicians and ethicists have about the reliability of family members as proxy decision makers--will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients' interests and the actions of professional providers. To determine whether and when such alterations are something to be concerned about, we'll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients' interests above those of non-patients--as Meeker's own results suggest--any strict allegiance to such a framework may be more notional than normative--as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that.

  12. 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.

  13. 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.

  14. 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

  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. [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.

  17. The perfect family: decision making in biparental care.

    Science.gov (United States)

    Akçay, Erol; Roughgarden, Joan

    2009-10-13

    Previous theoretical work on parental decisions in biparental care has emphasized the role of the conflict between evolutionary interests of parents in these decisions. A prominent prediction from this work is that parents should compensate for decreases in each other's effort, but only partially so. However, experimental tests that manipulate parents and measure their responses fail to confirm this prediction. At the same time, the process of parental decision making has remained unexplored theoretically. We develop a model to address the discrepancy between experiments and the theoretical prediction, and explore how assuming different decision making processes changes the prediction from the theory. We assume that parents make decisions in behavioral time. They have a fixed time budget, and allocate it between two parental tasks: provisioning the offspring and defending the nest. The proximate determinant of the allocation decisions are parents' behavioral objectives. We assume both parents aim to maximize the offspring production from the nest. Experimental manipulations change the shape of the nest production function. We consider two different scenarios for how parents make decisions: one where parents communicate with each other and act together (the perfect family), and one where they do not communicate, and act independently (the almost perfect family). The perfect family model is able to generate all the types of responses seen in experimental studies. The kind of response predicted depends on the nest production function, i.e. how parents' allocations affect offspring production, and the type of experimental manipulation. In particular, we find that complementarity of parents' allocations promotes matching responses. In contrast, the relative responses do not depend on the type of manipulation in the almost perfect family model. These results highlight the importance of the interaction between nest production function and how parents make decisions

  18. The perfect family: decision making in biparental care.

    Directory of Open Access Journals (Sweden)

    Erol Akçay

    Full Text Available Previous theoretical work on parental decisions in biparental care has emphasized the role of the conflict between evolutionary interests of parents in these decisions. A prominent prediction from this work is that parents should compensate for decreases in each other's effort, but only partially so. However, experimental tests that manipulate parents and measure their responses fail to confirm this prediction. At the same time, the process of parental decision making has remained unexplored theoretically. We develop a model to address the discrepancy between experiments and the theoretical prediction, and explore how assuming different decision making processes changes the prediction from the theory.We assume that parents make decisions in behavioral time. They have a fixed time budget, and allocate it between two parental tasks: provisioning the offspring and defending the nest. The proximate determinant of the allocation decisions are parents' behavioral objectives. We assume both parents aim to maximize the offspring production from the nest. Experimental manipulations change the shape of the nest production function. We consider two different scenarios for how parents make decisions: one where parents communicate with each other and act together (the perfect family, and one where they do not communicate, and act independently (the almost perfect family.The perfect family model is able to generate all the types of responses seen in experimental studies. The kind of response predicted depends on the nest production function, i.e. how parents' allocations affect offspring production, and the type of experimental manipulation. In particular, we find that complementarity of parents' allocations promotes matching responses. In contrast, the relative responses do not depend on the type of manipulation in the almost perfect family model. These results highlight the importance of the interaction between nest production function and how parents make

  19. 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.

  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. 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.

  2. 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...

  3. 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.

  4. 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…

  5. 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

  6. 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.

  7. 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.

  8. 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.

  9. 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

  10. 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) ...

  11. Work-family and family-work conflicts amongst African nurses caring for patients with AIDS.

    Science.gov (United States)

    Makola, Lehlogonolo; Mashegoane, Solomon; Debusho, Legesse K

    2015-12-14

    South African nursing environments are marked by various incapacitating stressors. This study explores work-family (W-F) and family-work (F-W) conflicts as aspects of stress amongst nurses working with patients who have AIDS. The study sought to determine the value of W-F and F-W conflicts as predictors of work and family satisfaction, as well as turnover intentions and the moderating role of supervisor and significant other support, amongst nurses caring for patients with AIDS in public hospitals within the Capricorn and Mopani districts, Limpopo Province. The study used a cross-sectional design, with data collected at one point only. Ninety-one nursing staff provided the data for the study by completing structured, self-administered surveys. Analysis involved computing correlations of all study variables. Thereafter, associated variables were used as predictors. In each predictive analysis, the nurses' stress served as a control variable, W-F and F-W conflicts were the independent variables and significant others and supervisor supports were moderators. Interaction terms were derived from independent and moderator variables. Although the findings of the study were not generally supportive of the hypotheses advanced, they nevertheless showed, amongst other findings, that F-W conflict predicted work satisfaction whilst W-F conflict predicted turnover intentions. Moreover, significant other support had a direct effect on family satisfaction whilst supervisor support moderated reports of W-F conflict and experiences of work satisfaction. The study showed that inter-role models that appear to be established in the context of developed societies require some further investigations in South Africa.

  12. Work-family and family-work conflicts amongst African nurses caring for patients with AIDS

    Directory of Open Access Journals (Sweden)

    Lehlogonolo Makola

    2015-12-01

    Full Text Available Background: South African nursing environments are marked by various incapacitating stressors. This study explores work-family (W-F and family-work (F-W conflicts as aspects of stress amongst nurses working with patients who have AIDS. Objectives: The study sought to determine the value of W-F and F-W conflicts as predictors of work and family satisfaction, as well as turnover intentions and the moderating role of supervisor and significant other support, amongst nurses caring for patients with AIDS in public hospitals within the Capricorn and Mopani districts, Limpopo Province. Methods: The study used a cross-sectional design, with data collected at one point only. Ninety-one nursing staff provided the data for the study by completing structured, self-administered surveys. Analysis involved computing correlations of all study variables. Thereafter, associated variables were used as predictors. In each predictive analysis, the nurses’ stress served as a control variable, W-F and F-W conflicts were the independent variables and significant others and supervisor supports were moderators. Interaction terms were derived from independent and moderator variables. Results: Although the findings of the study were not generally supportive of the hypotheses advanced, they nevertheless showed, amongst other findings, that F-W conflict predicted work satisfaction whilst W-F conflict predicted turnover intentions. Moreover, significant other support had a direct effect on family satisfaction whilst supervisor support moderated reports of W-F conflict and experiences of work satisfaction. Conclusions: The study showed that inter-role models that appear to be established in the context of developed societies require some further investigations in South Africa.

  13. 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.

  14. 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.

  15. Familial hypercholesterolaemia: a model of care for Australasia.

    Science.gov (United States)

    Watts, Gerald F; Sullivan, David R; Poplawski, Nicola; van Bockxmeer, Frank; Hamilton-Craig, Ian; Clifton, Peter M; O'Brien, Richard; Bishop, Warrick; George, Peter; Barter, Phillip J; Bates, Timothy; Burnett, John R; Coakley, John; Davidson, Patricia; Emery, Jon; Martin, Andrew; Farid, Waleed; Freeman, Lucinda; Geelhoed, Elizabeth; Juniper, Amanda; Kidd, Alexa; Kostner, Karam; Krass, Ines; Livingston, Michael; Maxwell, Suzy; O'Leary, Peter; Owaimrin, Amal; Redgrave, Trevor G; Reid, Nicola; Southwell, Lynda; Suthers, Graeme; Tonkin, Andrew; Towler, Simon; Trent, Ronald

    2011-10-01

    Familial hypercholesterolaemia (FH) is a dominantly inherited disorder present from birth that causes marked elevation in plasma cholesterol and premature coronary heart disease. There are at least 45,000 people with FH in Australia and New Zealand, but the vast majority remains undetected and those diagnosed with the condition are inadequately treated. To bridge this major gap in coronary prevention the FH Australasia Network (Australian Atherosclerosis Society) has developed a consensus model of care (MoC) for FH. The MoC is based on clinical experience, expert opinion, published evidence and consultations with a wide spectrum of stakeholders, and has been developed for use primarily by specialist centres intending starting a clinical service for FH. This MoC aims to provide a standardised, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. The MoC for FH is presented as a series of recommendations and algorithms focusing on the standards required for the detection, diagnosis, assessment and management of FH in adults and children. The process involved in cascade screening and risk notification, the backbone for detecting new cases of FH, is detailed. Guidance on treatment is based on risk stratifying patients, management of non-cholesterol risk factors, safe and effective use of statins, and a rational approach to follow-up of patients. Clinical and laboratory recommendations are given for genetic testing. An integrative system for providing best clinical care is described. This MoC for FH is not prescriptive and needs to be complemented by good clinical judgment and adjusted for local needs and resources. After initial implementation, the MoC will require critical evaluation, development and appropriate modification. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  1. 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...

  2. 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

  3. 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

  4. 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.

  5. 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.

  6. 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

  7. 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.

  8. 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.

  9. 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…

  10. 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

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. Caring for a family member with a traumatic brain injury.

    Science.gov (United States)

    Knight, R G; Devereux, R; Godfrey, H P

    1998-06-01

    The responses to a questionnaire on subjective burden are reported for 52 primary caregivers of a group of persons with traumatic brain injuries sustained an average of 6 years previously. The aim of the study was to examine satisfaction with social support, perception of coping skills, and appraisal of symptoms as predictors of strain in the carers. A range of responses, both positive and negative, to the work of caring for a relative with a head injury was reported. A high prevalence rate of emotional and behavioural changes in the persons with head injuries was found and the amount of distress caused by these symptoms was found to be predictive of burden. The other factor important in predicting burden was the carers' ratings of their satisfaction with their ability to cope with the work of caregiving. Social support, injury severity, and the demographic characteristics of the persons with head injury and their carers were not significant predictors. Depression in the carers was also investigated and the variable most predictive of elevated depression scores was coping satisfaction. These findings reinforce the importance of strengthening carers coping resources in rehabilitation work with head injured persons and their families.

  16. 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…

  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. 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…

  19. 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…

  20. 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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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

  6. [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.

  7. 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.

  8. 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.

  9. 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.

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

    Science.gov (United States)

    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.

  11. 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.

  12. 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.

  13. Investments and costs of oral health care for Family Health Care

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    Márcia Stefânia Ribeiro Macêdo

    2016-01-01

    Full Text Available ABSTRACT OBJECTIVE To estimate the investments to implement and operational costs of a type I Oral Health Care Team in the Family Health Care Strategy. METHODS This is an economic assessment study, for analyzing the investments and operational costs of an oral health care team in the city of Salvador, BA, Northeastern Brazil. The amount worth of investments for its implementation was obtained by summing up the investments in civil projects and shared facilities, in equipments, furniture, and instruments. Regarding the operational costs, the 2009-2012 time series was analyzed and the month of December 2012 was adopted for assessing the monetary values in effect. The costs were classified as direct variable costs (consumables and direct fixed costs (salaries, maintenance, equipment depreciation, instruments, furniture, and facilities, besides the indirect fixed costs (cleaning, security, energy, and water. The Ministry of Health’s share in funding was also calculated, and the factors that influence cost behavior were described. RESULTS The investment to implement a type I Oral Health Care Team was R$29,864.00 (US$15,236.76. The operational costs of a type I Oral Health Care Team were around R$95,434.00 (US$48,690.82 a year. The Ministry of Health’s financial incentives for investments accounted for 41.8% of the implementation investments, whereas the municipality contributed with a 59.2% share of the total. Regarding operational costs, the Ministry of Health contributed with 33.1% of the total, whereas the municipality, with 66.9%. Concerning the operational costs, the element of heaviest weight was salaries, which accounted for 84.7%. CONCLUSIONS Problems with the regularity in the supply of inputs and maintenance of equipment greatly influence the composition of costs, besides reducing the supply of services to the target population, which results in the service probably being inefficient. States are suggested to partake in funding

  14. Investments and costs of oral health care for Family Health Care

    Science.gov (United States)

    Macêdo, Márcia Stefânia Ribeiro; Chaves, Sônia Cristina Lima; Fernandes, Antônio Luis de Carvalho

    2016-01-01

    ABSTRACT OBJECTIVE To estimate the investments to implement and operational costs of a type I Oral Health Care Team in the Family Health Care Strategy. METHODS This is an economic assessment study, for analyzing the investments and operational costs of an oral health care team in the city of Salvador, BA, Northeastern Brazil. The amount worth of investments for its implementation was obtained by summing up the investments in civil projects and shared facilities, in equipments, furniture, and instruments. Regarding the operational costs, the 2009-2012 time series was analyzed and the month of December 2012 was adopted for assessing the monetary values in effect. The costs were classified as direct variable costs (consumables) and direct fixed costs (salaries, maintenance, equipment depreciation, instruments, furniture, and facilities), besides the indirect fixed costs (cleaning, security, energy, and water). The Ministry of Health’s share in funding was also calculated, and the factors that influence cost behavior were described. RESULTS The investment to implement a type I Oral Health Care Team was R$29,864.00 (US$15,236.76). The operational costs of a type I Oral Health Care Team were around R$95,434.00 (US$48,690.82) a year. The Ministry of Health’s financial incentives for investments accounted for 41.8% of the implementation investments, whereas the municipality contributed with a 59.2% share of the total. Regarding operational costs, the Ministry of Health contributed with 33.1% of the total, whereas the municipality, with 66.9%. Concerning the operational costs, the element of heaviest weight was salaries, which accounted for 84.7%. CONCLUSIONS Problems with the regularity in the supply of inputs and maintenance of equipment greatly influence the composition of costs, besides reducing the supply of services to the target population, which results in the service probably being inefficient. States are suggested to partake in funding, especially to cover the

  15. Fatigue in family caregivers of adult intensive care unit survivors.

    Science.gov (United States)

    Choi, JiYeon; Tate, Judith A; Hoffman, Leslie A; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P; Given, Barbara A; Sherwood, Paula R

    2014-09-01

    Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  16. 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.

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

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    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.

  18. 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.

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

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    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

  20. 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.

  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. 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. 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.

  4. 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.

  5. 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.

  6. The practice of nurses caring for families of pediatric inpatients in light of Jean Watson

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    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.

  7. 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.

  8. 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.

  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. 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.

  11. 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.

  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. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

  15. "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.

  16. 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.

  17. 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…

  18. 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.

  19. 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.

  20. 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.

  1. 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.

  2. [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.

  3. [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.

  4. 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.

  5. 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

  6. 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

  7. 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.

  8. The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients

    Science.gov (United States)

    Hudson, Peter; Aranda, Sanchia

    2014-01-01

    Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195

  9. 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.

  10. 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.

  11. The experiences of family caregivers concerning their care of HIV ...

    African Journals Online (AJOL)

    Although government and non-government organisations have responded by ... most of Africa's orphans have been absorbed into extended family networks. ... social workers and home-based caregivers be trained on available social support.

  12. The SASPREN primary care survey - who consults the family doctor?

    African Journals Online (AJOL)

    Sentinel Practitioner Research Networ1< (SASPREN). Participants. All patients who ... research-minded family doctors, distributed across the country, who voluntarily ..... Organization, Objectives, Policies and Methods. S AIr Fain PT

  13. The experiences of family caregivers concerning their care of HIV ...

    African Journals Online (AJOL)

    2008-11-13

    AIDS) are ... lead to depression and burnout. According to Gale ... on-one interview technique in which family caregivers of HIV/AIDS orphans were ..... and the orphan's grandmother was that there was no formal agreement of who ...

  14. 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.

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

    Directory of Open Access Journals (Sweden)

    Elisabete Alves

    2016-01-01

    Conclusions: The Short Form of the NICU 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.

  16. 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.

  17. Quotidian of accompanying family members in an environment of care: the emergence of hospital tribes

    Directory of Open Access Journals (Sweden)

    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.

  18. 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.

  19. Recruitment of family child care homes for an obesity prevention intervention study

    Directory of Open Access Journals (Sweden)

    Dianne S. Ward

    2016-08-01

    Conclusion: Results of these enhanced recruitment strategies demonstrate the many lessons learned about successful recruitment of a difficult-to-reach population, family child care homes; specifically, the importance of building relationships, communicating clearly, and identifying key motivators.

  20. Opinions of Primary Care Family Physicians About Family Medicine Speciality Training Program

    Directory of Open Access Journals (Sweden)

    Hamit Sirri Keten

    2014-04-01

    Material and Method: A total of 170 family physicians working in Kahramanmaras were included in the study. After obtaining informed consent a questionnaire comprising questions regarding socio-demographic properties, conveying contracted family physicians as family medicine specialists and organization of the training program was applied to participants. Results: Among physicians participating in the study 130 (76.5% were male and 40 (23.5% were female, with a mean age of 40.7±7.1 (min = 26 years, max = 64 years. The mean duration of professional experience of physicians was 15.3±7.0 (min = 2 years, max = 40 years years. Of all, 91 (53.5% participants had already read the decree on family medicine specialist training program for contracted family physicians. A hundred and fifteen (67.6% family physicians supported that Family Medicine Specialty program should be taken part-time without interrupting routine medical tasks. Only 51 (30.0% participants stated the requirement of an entrance examination (TUS for family medicine specialty training. Conclusion: Family medicine specialty training program towards family physicians should be considered in the light of scientific criteria. In family medicine, an area exhibited a holistic approach to the patient; specialty training should be through residency training instead of an education program. For this purpose, family medicine departments in medical faculties should play an active role in this process. Additionally further rotations in needed branches should be implemented with a revision of area should be performed. In medicine practical training is of high importance and distant or part-time education is not appropriate, and specialist training shall be planned in accordance with the medical specialty training regulations. [Cukurova Med J 2014; 39(2.000: 298-304

  1. 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

  2. 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.

  3. Re-Imagining Language, Culture, and Family in Foster Care

    Science.gov (United States)

    Puig, Victoria I.

    2013-01-01

    Nearly half a million children in the United States are currently being served by the foster care system. Infants and toddlers represent the largest single group entering foster care. While these very young children are at the greatest peril for physical, mental health, and developmental issues and tend to spend the longest time in the foster care…

  4. Palliative Care for Patients and Families With Parkinson's Disease

    NARCIS (Netherlands)

    Bouca-Machado, R.; Titova, N.; Chaudhuri, K.R.; Bloem, B.R.; Ferreira, J.J.

    2017-01-01

    Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of

  5. 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.

  6. 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

  7. 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.

  8. 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.

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

    Science.gov (United States)

    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.

  10. 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.

  11. 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.

  12. 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.

  13. 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

  14. 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)

  15. 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,…

  16. 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 ...

  17. Family participation in care plan meetings : Promoting a collaborative organizational culture in nursing homes

    NARCIS (Netherlands)

    Dijkstra, Ate

    In this study, the author evaluated a project in The Netherlands that aimed to promote family members' participation in care plan meetings at a psychogeriatric nursing home. The small-scale pilot project, which was conducted in four wards of the nursing home, was designed to involve families in

  18. 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)

  19. 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…

  20. 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…

  1. [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.

  2. 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…

  3. 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.

  4. 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...

  5. Family Care giving in Bipolar disorder: Experiences of Stigma.

    Directory of Open Access Journals (Sweden)

    Farshid Shamsaei

    2013-12-01

    Full Text Available Stigma is a serious impediment to the well-being of those who experience it. Many family- caregivers are challenged by the stereotypes and prejudice that result from misconceptions about bipolar disorder.The purpose of this study was to explore the stigma experienced by family caregivers of patients with bipolar disorder.This was a qualitative and phenomenological study. In this study, we selected the family caregivers of patients with bipolar disorder in a psychiatric hospital (Iran using purposive sampling in 2011. By reaching data saturation, the number of participant was 12. Data were gathered through in-depth interviews and analyzed by the "Collaizi" method.Stigma was a pervasive concern to almost all participants. Family caregivers of patients with Bipolar disorders reported feelings and experiences of stigma and were most affected by them. Analysis of the interviews revealed 3 themes: Negative judgment, Shame, Stigmatization and Social Isolation.For a person with bipolar disorder, this illness is associated with the following problems: worse recovery, difficulty accessing health services, receiving poor treatment and support, and difficulty gaining community acceptance. Rejection of people with mental illness might also affect their family caregivers at various levels.

  6. Most important needs of family members of critical patients in light of the critical care family needs inventory.

    Science.gov (United States)

    Padilla Fortunatti, Cristóbal Felipe

    2014-01-01

    This work sought to identify the most important needs for family members of adult critical patients as described in the literature pursuant to the dimensions established in the "Critical Care Family Needs Inventory" (CCFNI) by Molter and Leske. A literature review was carried out by using the CCFNI instrument. The databases used were: Pubmed, CINAHL, Proquest Nursing & Allied Health Source, Proquest Psychology Journals, LILACS, Science Direct, Ovid SP, PsyicINFO, and SciELO. The following limitations for the search were identified: adult patients, articles in English and Spanish, with abstract and complete text available and which had been published from 2003 to June 2013; 15 articles were included. The family's hope on desired results and sincere communication with the healthcare staff turned out to be the most relevant needs, while the least important were related to comfort and having support structures or systems. Most of the studies were conducted in Asia and North America revealing differences in the order of importance assigned to each necessity. Certain sociodemographic and cultural characteristics impact upon how family members rank their needs; this also occurs with the nature of the most important needs for the family and the factors determining their prioritization. The articles included in this review mention the frequent interaction with the family and their holistic view of the person beyond the illness, determine that nurses are the most appropriate professionals to know and satisfy the family needs of critical patients.

  7. Most Important Needs of Family Members of Critical Patients in Light of the Critical Care Family Needs Inventory

    Directory of Open Access Journals (Sweden)

    Cristóbal Felipe Padilla Fortunatti

    2014-07-01

    Full Text Available Objective. This work sought to identify the most important needs for family members of adult critical patients as described in the literature pursuant to the dimensions established in the "Critical Care Family Needs Inventory" (CCFNI by Molter and Leske. Methodology. A literature review was carried out by using the CCFNI instrument. The databases used were: Pubmed, CINAHL, Proquest Nursing & Allied Health Source, Proquest Psychology Journals, LILACS, Science Direct, Ovid SP, PsyicINFO, and SciELO. The following limitations for the search were identified: adult patients, articles in English and Spanish, with abstract and complete text available and which had been published from 2003 to June 2013; 15 articles were included. Results. The family's hope on desired results and sincere communication with the healthcare staff turned out to be the most relevant needs, while the least important were related to comfort and having support structures or systems. Most of the studies were conducted in Asia and North America revealing differences in the order of importance assigned to each necessity. Certain sociodemographic and cultural characteristics impact upon how family members rank their needs; this also occurs with the nature of the most important needs for the family and the factors determining their prioritization. Conclusion. The articles included in this review mention the frequent interaction with the family and their holistic view of the person beyond the illness, determine that nurses are the most appropriate professionals to know and satisfy the family needs of critical patients.

  8. [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.

  9. [Relationship of the effectiveness of care management services and burdens of primary family caregivers].

    Science.gov (United States)

    Lee, Chia-Ling; Liu, Li-Fan; Chen, Shuh-Sin; Lin, Hsiu-Chun

    2014-02-01

    In Taiwan, long-term care management centers hold primary responsibility for administering long-term care services, assisting with long-term care placements, and sharing the care burden with family caregivers in need. Research into the effectiveness of current care management services and the effectiveness of these services in reducing care burdens remains limited. This study investigates the relationship among care management center service effectiveness, care management personnel, and burdens in relation to the provision of care services from the prospective of caregivers. A purposive sampling method and structured questionnaire survey were used to conduct telephone interviews with 154 home caregivers who had been transferred from care management centers to homecare service centers. Participants expressed overall satisfaction with care management centers and with the services provided by these centers. Satisfaction toward the care managers' professional competence was associated with lower physical burden for caregivers. Participants' psychological and social burdens were associated with overall satisfaction with the care management centers and their satisfaction with the services provided by care managers. The implementation of care management services has improved satisfaction. However, center services remain inadequate to reduce the psychological and social burdens of caregivers. Greater focus on these two aspects will be critical to the successful implementation of the proposed intensive care management model and multiple services intervention in order to meet the complex care needs of home service recipients and their primary caregivers.

  10. Taking care of the newborn dying and their families: Nurses' experiences of neonatal intensive care.

    Science.gov (United States)

    Almeida, Fabiane de Amorim; Moraes, Mariana Salim de; Cunha, Mariana Lucas da Rocha

    2016-06-01

    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. 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). 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. 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. Compreender as experiências vivenciadas por enfermeiros ao cuidar de neonatos que estão morrendo e seus familiares na UTIN; e resgatar as suas percepções sobre a atuação diante do processo de morte e luto. Estudo descritivo exploratório, de abordagem qualitativa, desenvolvido com nove enfermeiras da UTIN de um hospital de São Paulo (SP), Brasil. Os dados foram coletados por meio de entrevista semi-estruturada e analisados pela técnica do Discurso de Sujeito Coletivo (DSC). Cuidar de neonatos que estão morrendo e suas famílias é muito difícil para as enfermeiras, devido ao intenso envolvimento. Buscam estratégias para lidar com a situação e, diante do óbito do neonato, apesar do sofrimento, manifestam o sentimento de dever cumprido. Enfrentar a morte e o luto aciona mecanismos que afloram referências de vida, deparando-se com questões dolorosas. Aprender a lidar com essas questões é um desafio diário para os enfermeiros de UTIN.

  11. Aggressive behaviour towards a care-giver: a case report of a ...

    African Journals Online (AJOL)

    Paranoid schizophrenic patients may show dysfunctional impulsive aggression which may be caused by several factors such as environmental frustration. ... Conclusions: Elevated risk forviolent-offending in paranoid schizophrenia is not just ...

  12. Family-focused dementia care - a qualitative interview study

    DEFF Research Database (Denmark)

    Mohrsen Busted, Laila; Nielsen, Dorthe; Birkelund, Regner

    to decrease the experienced burden that relatives to persons with dementia experience. The qualitative research project consists of three parts; 1) An interview study to investigate the problem area as experienced by 24 relatives. 2) Initiate family intervention, conducted by professional caregivers......Relatives to persons with dementia are in the literature described as the "invisible second patients." They get a more burdensome responsibility to the family’s everyday life and relation within the family. Furthermore, relatives as caregivers provide most of the assistance and supervision...... to fulfill the basic needs of the person with dementia. The experience of being close to a person with dementia may seem as a burden that involves emotional chaos and uncertainty which can lead to stress and depressions. Family health therapeutic conversations may be an intervention to relieve the suffering...

  13. 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.

  14. 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.

  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. 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…

  17. 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…

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

    NARCIS (Netherlands)

    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.

    2017-01-01

    Objective: 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

  19. Who's Watching the Babies? Improving the Quality of Family, Friend, and Neighbor Child Care

    Science.gov (United States)

    Powell, Douglas R.

    2008-01-01

    One of the important influences on a child's development is the quality of his or her early care and education experiences. It is estimated that more than 1 million children in the U.S. are cared for while their parents are at work by nonlicensed caregivers who are family, friends, or neighbors - and these caregivers can be difficult to reach…

  20. 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

  1. Family Caregiving for Patients With Heart Failure : Types of Care Provided and Gender Differences

    NARCIS (Netherlands)

    Hwang, Boyoung; Luttik, Marie Louise; Dracup, Kathleen; Jaarsma, Tiny

    Background: Knowledge about the potential burden for family caregivers related to the care of patients with heart failure (HF) is limited. The aims of the study were to compare the kind and amount of care provided by partners of HF patients and partners of healthy individuals and to examine the

  2. Dental Care Issues for African Immigrant Families of Preschoolers

    Science.gov (United States)

    Obeng, Cecilia S.

    2008-01-01

    This article examines dental health issues for African immigrant families of preschoolers living in the United States. The study was done within the framework of narrative inquiry and ethnographic impressionism. Through personal interviews and questionnaire completion, 125 parents of children ages 3 to 5 answered questions about ways in which…

  3. Building Communities of Care for Military Children and Families

    Science.gov (United States)

    Kudler, Harold; Porter, Rebecca I.

    2013-01-01

    Military children don't exist in a vacuum; rather, they are embedded in and deeply influenced by their families, neighborhoods, schools, the military itself, and many other interacting systems. To minimize the risks that military children face and maximize their resilience, write Harold Kudler and Colonel Rebecca Porter, we must go beyond…

  4. 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...

  5. Care in Family Relations : The Case of Surrogacy Leave

    NARCIS (Netherlands)

    Burri, Susanne

    2015-01-01

    The advance of reproductive technologies, like surrogacy arrangements, confronts courts with new demands and dilemmas. This contribution analyses the potential of EU law towards a better and more balanced reconciliation of work, private and family life when no national law applies. In two recent

  6. Pharmacist contributions for basic care from the perspective of professionals of familial health care teams

    Directory of Open Access Journals (Sweden)

    Gecioni Loch-Neckel

    2009-06-01

    Full Text Available This study aimed to investigate the social representations of professionals included in the team of Family Health Strategy (physicians, nurses and dentists respecting the action possibilities and contributions of the pharmacist for the basic care, and based on social psychology and, particularly, on the theory of social representations. The epistemological basis of the research is qualitative, and the data were collected by means of individual semi-structured interviews, which were submitted to analysis of categorical thematic content. Apparently, the majority of professionals already inserted in the team know and recognize the importance of professional pharmacists in the basic care, as well as their potential contribution to this topic. The representations were constructed according to the following parameters: a the study object and the intervention area, b the individual practice of every professional and c his/her action in specific cases. The quality of the professional or personal experience concerning the action of these professionals has contributed for the knowledge about the possibilities of pharmacists' intervention in basic care.Este estudo teve por objetivo investigar as representações sociais dos profissionais incluídos na equipe de Estratégia em Saúde da Família (médico, enfermeiro e odontólogo, sobre as possibilidades de atuação e as contribuições do farmacêutico na atenção básica, tendo por fundamento a psicologia social e, particularmente, a teoria das representações sociais. A base epistemológica da pesquisa é qualitativa, sendo os dados coletados por meio de entrevistas individuais semi-estruturadas e analisados por meio de análise de conteúdo categorial temático. Constatou-se que a maioria dos profissionais já inseridos na equipe conhece e reconhece a importância do profissional farmacêutico na atenção básica e as suas possibilidades de contribuição. As representações foram construídas a

  7. [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.

  8. 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....

  9. 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.

  10. 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.

  11. 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

  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. 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.

  14. [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.

  15. 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.

  16. 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.

  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. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

  20. Patient- and family-centred care in the intensive care unit: a challenge in the daily practice of healthcare professionals.

    Science.gov (United States)

    van Mol, Margo Mc; Boeter, Trudi Gw; Verharen, Lisbeth; Kompanje, Erwin Jo; Bakker, Jan; Nijkamp, Marjan D

    2017-10-01

    To evaluate the impact of supportive interventions perceived by both the intensive care unit patients' relatives and the healthcare providers, such as deferred intake interviews for providing information and discussing the emotional impacts, encouragement to keep a diary, and the introduction of weekly psychosocial rounds, on the perceptions of relatives of patients in the intensive care unit. Patient- and family-centred care is gaining interest, with a shift from provider-centric norms to care arranged around patients' and relatives individual beliefs and needs. This is expected to have a positive influence on the quality of care. Communication is one of the most important factors impacting the perceived quality of care in the intensive care unit from the perspective of patients' relatives. New interventions have been introduced to help the patients' relatives to meet their communication needs. A time-trend quantitative design. Two convenience samples of relatives were included (in 2012 and 2013) in four different intensive care units from a large university medical centre in the Netherlands. Survey data from 211 relatives (75% net response rate in 2012) and 123 relatives (66% net response rate in 2013) were used for the analysis. The second measurement showed significant improvements regarding informational aspects of care, clarification of roles in participatory caretaking and shared decision-making. The results suggest that the additional support offered to patients' relatives increased perceived quality of care, particularly with respect to informational needs. However, patient- and family-centred care still requires a change in the mindset of healthcare professionals. This new point of view should overcome perceived barriers and foster a culture of partnership with patients' relatives in the intensive care unit. Training in providing psychosocial support for the needs of relatives leads to a stronger perception of patient-centredness. © 2016 John Wiley

  1. The family working time model: Toward more gender equality in work and care

    OpenAIRE

    Müller, Kai-Uwe; Neumann, Michael; Wrohlich, Katharina

    2016-01-01

    Since the millennium, the labor market participation of women and mothers is increasing across European countries. Several work/care policy measures underlie this evolution. At the same time, the labor market behavior of men and fathers, as well as their involvement in care work, is relatively unchanging, meaning that employed mothers are facing an increased burden with respect to gainful employment and providing care. We propose a family working time model that incentivizes fathers and mothe...

  2. 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.

  3. 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.

  4. 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.

  5. 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...

  6. 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.

  7. 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.

  8. Care in Family Relations : The Case of Surrogacy Leave

    OpenAIRE

    Burri, Susanne

    2015-01-01

    The advance of reproductive technologies, like surrogacy arrangements, confronts courts with new demands and dilemmas. This contribution analyses the potential of EU law towards a better and more balanced reconciliation of work, private and family life when no national law applies. In two recent cases of the Court of Justice of the EU on leave for surrogacy mothers, the Advocates General Kokott and Wahl published diverging opinions on similar prejudicial questions of national courts. These op...

  9. 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…

  10. 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.

  11. 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.

  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. 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.

  14. 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.

  15. 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

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

    African Journals Online (AJOL)

    The HIV/AIDS pandemic put significant strain on healthcare services in the country. Hospitals were no longer coping with the escalating number of AIDS patients. This resulted in the early discharge of patients, with some patients, too ill to be nursed at home, being sent to hospices for continued care. The Batswana had ...

  17. Targeting Adolescents for Family Planning and Post Abortion Care ...

    African Journals Online (AJOL)

    Context: Adolescent sexuality and its outcome in developed and developing countries differs most significantly at the point of prevention of adverse reproductive outcome. Objective: This article reviews the role of health care providers in meeting the peculiar challenges of the adolescent population in developing countries.

  18. Modern Family: Adoption and Foster Care in Children's Literature

    Science.gov (United States)

    Meese, Ruth Lyn

    2012-01-01

    Teachers often have no preparation for handling the questions and conversations that arise in the classroom when discussing literature having adoption or foster care themes. Instead of relying on personal experiences or stereotypes portrayed through the media, teachers are advised to understand the developmental tasks of children from families…

  19. The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients.

    Science.gov (United States)

    Hudson, Peter; Aranda, Sanchia

    2014-09-01

    A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  20. A systematic review of instruments for assessing parent satisfaction with family-centred care in neonatal intensive care units.

    Science.gov (United States)

    Dall'Oglio, Immacolata; Mascolo, Rachele; Gawronski, Orsola; Tiozzo, Emanuela; Portanova, Anna; Ragni, Angela; Alvaro, Rosaria; Rocco, Gennaro; Latour, Jos M

    2018-03-01

    This systematic review synthesised and described instruments measuring parent satisfaction with the increasing standard practice of family-centred care (FCC) in neonatal intensive care units. We evaluated 11 studies published from January 2006 to March 2016: two studies validated a parent satisfaction questionnaire, and nine developed or modified previous questionnaires to use as outcome measures in their local settings. Most instruments were not tested on reliability and validity. Only two validated instruments included all six of the FCC principles and could assess parent satisfaction with FCC in neonatal intensive care units and be considered as outcome indicators for further research. ©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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;

  6. 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

  7. 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.

  8. 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.

  9. 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.

  10. 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

  11. Family-centered care to promote successful community reintegration after war: it takes a nation.

    Science.gov (United States)

    Glynn, Shirley M

    2013-12-01

    The papers in this section focus on public health responses and implementation considerations in addressing the challenges military families confront when parents go to war. While many military families show resilience, the challenges resulting from a decade of war with multiple deployments are detailed, as are innovative military and civilian programs designed to help service members and their families reintegrate successfully into the community. As more and more service members leave active duty, the burden of meeting military families' psychological needs will transition from the Department of Defense (DoD) and into the Veterans Administration (VA) and civilian arenas. While many strategies to support successful readjustment are offered, in this time of dwindling mental health resources and competing needs, it is unclear what priority the broader society places on meeting the needs of returning service members and their families. A growing emphasis on family-centered care in the Veterans Administration may help meet this gap.

  12. Work-family conflict, psychological distress, and sleep deficiency among patient care workers.

    Science.gov (United States)

    Jacobsen, Henrik B; Reme, Silje Endresen; Sembajwe, Grace; Hopcia, Karen; Stoddard, Anne M; Kenwood, Christopher; Stiles, Tore C; Sorensen, Glorian; Buxton, Orfeu M

    2014-07-01

    This study examined whether work-family conflict was associated with sleep deficiencies, both cross-sectionally and longitudinally. In this two-phase study, a workplace health survey was completed by a cohort of patient care workers (n = 1,572). Additional data were collected 2 years later from a subsample of the original respondents (n = 102). Self-reported measures included work-family conflict, workplace factors, and sleep outcomes. The participants were 90% women, with a mean age of 41 ± 11.7 years. At baseline, after adjusting for covariates, higher levels of work-family conflict were significantly associated with sleep deficiency. Higher levels of work-family conflict also predicted sleep insufficiency nearly 2 years later. The first study to determine the predictive association between work-family conflict and sleep deficiency suggests that future sleep interventions should include a specific focus on work-family conflict. Copyright 2014, SLACK Incorporated.

  13. 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.

  14. 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.

  15. [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.

  16. 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.

  17. 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.

  18. The Effects of a Family Support Program Including Respite Care on Parenting Stress and Family Quality of Life Perceived by Primary Caregivers of Children with Disabilities in Korea

    Science.gov (United States)

    Sung, Minjung; Park, Jiyeon

    2012-01-01

    In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

  19. Latino values in the context of palliative care: illustrative cases from the Family Focused Grief Therapy trial.

    Science.gov (United States)

    Del Gaudio, F; Hichenberg, S; Eisenberg, M; Kerr, E; Zaider, T I; Kissane, D W

    2013-05-01

    Clinicians meet a variety of ethnicities among patients and families in hospice programs. This article focuses on Latino families. Within a controlled trial of family therapy in the context of palliative care, 17 families identified as Hispanic. Five were examined qualitatively herein. A synopsis of each family's narrative is presented here. Patterns of strong family loyalty (Familismo), the gender roles of Machismo and Marianismo, the importance of family tradition, expectations about caregiving, and the place of faith and religion emerged as prominent and able potentially to impact on the therapy. Family therapists need to be thoughtful about cultural issues as they strive to support families.

  20. 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.

  1. 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.

  2. 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.

  3. A primary care audit of familial risk in patients with a personal history of breast cancer.

    Science.gov (United States)

    Nathan, Paul; Ahluwalia, Aneeta; Chorley, Wendy

    2014-12-01

    Breast cancer is the most common cancer diagnosed in women, both in the UK and worldwide. A small proportion of women are at very high risk of breast cancer, having a particularly strong family history. The National Institute for Health and Clinical Excellence (NICE) has advised that practitioners should not, in most instances, actively seek to identify women with a family history of breast cancer. An audit was undertaken at an urban primary care practice of 15,000 patients, using a paper-based, self-administered questionnaire sent to patients identified with a personal history of breast cancer. The aim of this audit was to determine whether using targeted screening of relatives of patients with breast cancer to identify familial cancer risk is worthwhile in primary care. Since these patients might already expected to have been risk assessed following their initial diagnosis, this audit acts as a quality improvement exercise. The audit used a validated family history questionnaire and risk assessment tool as a screening approach for identifying and grading familial risk in line with the NICE guidelines, to guide referral to the familial cancer screening service. The response rate to family history questionnaires was 54 % and the majority of patients responded positively to their practitioner seeking to identify familial cancer risks in their family. Of the 57 returned questionnaires, over a half (54 %) contained pedigrees with individuals eligible for referral. Patients and their relatives who are often registered with the practice welcome the discussion. An appropriate referral can therefore be made. The findings suggest a role for primary care practitioners in the identification of those at higher familial risk. However integrated systems and processes need designing to facilitate this work.

  4. 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

  5. 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.

  6. Implications of Health Care Reform for Farm Businesses and Families

    OpenAIRE

    Mary Clare Ahearn; James M. Williamson; Nyesha Black

    2015-01-01

    The Affordable Care Act has implications for the source of health insurance for farm households and potentially how much of their time they allocate to off-farm jobs and even the rate at which new operators enter farming. The Act will likely have impacts for the 1% of farms defined to be large employers, which are required to provide coverage for their workers or pay a penalty. While a very small share of all farms, they account for upward of 40% of the production for some commodities. How th...

  7. Patient and family perceptions of physical therapy in the medical intensive care unit.

    Science.gov (United States)

    Sottile, Peter D; Nordon-Craft, Amy; Malone, Daniel; Schenkman, Margaret; Moss, Marc

    2015-10-01

    Patient and family member perceptions of physical therapy (PT) in the intensive care unit and the factors that influence their degree of satisfaction have not been described. A panel of experts developed a questionnaire that assessed patient and family perceptions of PT. Critically ill patients and their family members were asked to complete the survey. Patient and family member scores were compared and stratified by age, sex, and mechanical ventilation for greater than 14 days compared to 14 days or less. A total of 55 patients and 49 family members completed the survey. Patients and family members reported that PT was necessary and beneficial to recovery, despite associating PT with difficulty, exertion, and discomfort. Patient perceptions were similar regardless of age or sex. Family members underestimated a patient's enjoyment of PT (P = .03). For individuals who required prolonged mechanical ventilation (>14 days), patients reported that PT was more difficult (P = .03) and less enjoyable (P = .049), and family members reported PT as causing greater discomfort (P = .005). In addition, family members of patients who required prolonged mechanical ventilation felt that PT was less beneficial (P = .01). Physical therapy is perceived as necessary and beneficial to recovery by critically ill patients and family members. Copyright © 2015 Elsevier Inc. All rights reserved.

  8. The failure of suicide prevention in primary care: family and GP perspectives - a qualitative study.

    Science.gov (United States)

    Leavey, Gerard; Mallon, Sharon; Rondon-Sulbaran, Janeet; Galway, Karen; Rosato, Michael; Hughes, Lynette

    2017-11-21

    Although Primary care is crucial for suicide prevention, clinicians tend to report completed suicides in their care as non-preventable. We aimed to examine systemic inadequacies in suicide prevention from the perspectives of bereaved family members and GPs. Qualitative study of 72 relatives or close friends bereaved by suicide and 19 General Practitioners who have experienced the suicide of patients. Relatives highlight failures in detecting symptoms and behavioral changes and the inability of GPs to understand the needs of patients and their social contexts. A perceived overreliance on anti-depressant treatment is a major source of criticism by family members. GPs tend to lack confidence in the recognition and management of suicidal patients, and report structural inadequacies in service provision. Mental health and primary care services must find innovative and ethical ways to involve families in the decision-making process for patients at risk of suicide.

  9. 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.

  10. 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

  11. 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.

  12. 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

  13. Investments and costs of oral health care for Family Health Care.

    Science.gov (United States)

    Macêdo, Márcia Stefânia Ribeiro; Chaves, Sônia Cristina Lima; Fernandes, Antônio Luis de Carvalho

    2016-07-21

    To estimate the investments to implement and operational costs of a type I Oral Health Care Team in the Family Health Care Strategy. This is an economic assessment study, for analyzing the investments and operational costs of an oral health care team in the city of Salvador, BA, Northeastern Brazil. The amount worth of investments for its implementation was obtained by summing up the investments in civil projects and shared facilities, in equipments, furniture, and instruments. Regarding the operational costs, the 2009-2012 time series was analyzed and the month of December 2012 was adopted for assessing the monetary values in effect. The costs were classified as direct variable costs (consumables) and direct fixed costs (salaries, maintenance, equipment depreciation, instruments, furniture, and facilities), besides the indirect fixed costs (cleaning, security, energy, and water). The Ministry of Health's share in funding was also calculated, and the factors that influence cost behavior were described. The investment to implement a type I Oral Health Care Team was R$29,864.00 (US$15,236.76). The operational costs of a type I Oral Health Care Team were around R$95,434.00 (US$48,690.82) a year. The Ministry of Health's financial incentives for investments accounted for 41.8% of the implementation investments, whereas the municipality contributed with a 59.2% share of the total. Regarding operational costs, the Ministry of Health contributed with 33.1% of the total, whereas the municipality, with 66.9%. Concerning the operational costs, the element of heaviest weight was salaries, which accounted for 84.7%. Problems with the regularity in the supply of inputs and maintenance of equipment greatly influence the composition of costs, besides reducing the supply of services to the target population, which results in the service probably being inefficient. States are suggested to partake in funding, especially to cover the team's operational cost. Estimar os investimentos

  14. 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.

  15. 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.

  16. [Family Health Teams in Ontario: Ideas for Germany from a Canadian Primary Care Model].

    Science.gov (United States)

    Ulrich, Lisa-R; Pham, Thuy-Nga Tia; Gerlach, Ferdinand M; Erler, Antje

    2017-07-11

    The German healthcare system is struggling with fragmentation of care in the face of an increasing shortage of general practitioners and allied health professionals, and the time-demanding healthcare needs of an aging, multimorbid patient population. Innovative interprofessional, intersectoral models of care are required to ensure adequate access to primary care across a variety of rural and urban settings into the foreseeable future. A team approach to care of the complex multimorbid patient population appears particularly suitable in attracting and retaining the next generation of healthcare professionals, including general practitioners. In 2014, the German Advisory Council on the Assessment of Developments in the Health Care System highlighted the importance of regional, integrated care with community-based primary care centres at its core, providing comprehensive, population-based, patient-centred primary care with adequate access to general practitioners for a given geographical area. Such centres exist already in Ontario, Canada; within Family Health Teams (FHT), family physicians work hand-in-hand with pharmacists, nurses, nurse practitioners, social workers, and other allied health professionals. In this article, the Canadian model of FHT will be introduced and we will discuss which components could be adapted to suit the German primary care system. © Georg Thieme Verlag KG Stuttgart · New York.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  1. 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.

  2. Interior design for ambulatory care facilities: how to reduce stress and anxiety in patients and families.

    Science.gov (United States)

    Frasca-Beaulieu, K

    1999-01-01

    The following article illustrates some important factors to consider when designing ambulatory care facilities (ACFs), and focuses on how wayfinding, noise control, privacy, security, color and lighting, general ambience, textures, and nature can have a profound influence on patient and family stress, consumer satisfaction, health and well-being. Other important design issues: convenience and accessibility, accommodation to various populations, consumer and family focus, patient education, image, as well as current equipment needs and future growth are examined in light of the prevailing trends in health care delivery. In sum, this feature explores the important stress-reducing and health-promoting elements involved in successful ACF design.

  3. 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

  4. 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.

  5. Path Toward Economic Resilience for Family Caregivers: Mitigating Household Deprivation and the Health Care Talent Shortage at the Same Time

    OpenAIRE

    Simon, Melissa A.; Gunia, Brian; Martin, Emily J.; Foucar, Charles E.; Kundu, Tapas; Ragas, Daiva M.; Emanuel, Linda L.

    2013-01-01

    Rising costs and a workforce talent shortage are two of the health care industry’s most pressing challenges. In particular, serious illnesses often impose significant costs on individuals and their families, which can place families at an increased risk for multigenerational economic deprivation or even an illness–poverty trap. At the same time, family caregivers often acquire a wide variety of health care skills that neither these caregivers nor the health care industry typically use. As the...

  6. 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 ...

  7. Supportive and palliative care needs of families of children who die from cancer: an Australian study.

    Science.gov (United States)

    Monterosso, Leanne; Kristjanson, Linda J

    2008-01-01

    To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. A qualitative study with semi-structured interviews. 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.

  8. Interprofessional collaboration at transition of care: perspectives of child and family health nurses and midwives.

    Science.gov (United States)

    Psaila, Kim; Schmied, Virginia; Fowler, Cathrine; Kruske, Sue

    2015-01-01

    To examine collaboration in the provision of universal health services for children and families in Australia from the perspective of midwives and child health and family health nurses. Collaboration is identified as a key concept contributing to families' smooth transition between maternity and child health services. However, evidence suggests that collaboration between services is often lacking. Few studies have explored how maternity and child health and family health services or professionals collaborate to facilitate a smooth transition. This study reports on data collected in phases 1 and 2 of a three-phase mixed-methods study investigating the feasibility of implementing a national approach to child health and family health services in Australia (Child Health: Researching Universal Services study). In phase 1, consultations (via discussion groups, focus groups and teleconferences) were held with 45 midwives and 60 child health and family health nurses. Themes identified were used to develop phase 2 surveys. In phase 2, 1098 child health and family health nurses and 655 midwives returned surveys. Midwives and child health and family health nurses reported 'some collaboration'. Midwives and child health and family health nurses indicated that collaboration was supported by having agreement on common goals and recognising and valuing the contributions of others. Organisational barriers such as poor communication and information transfer processes obstructed relationships. Good collaboration was reported more frequently when working with other professionals (such as allied health professionals) to support families with complex needs. This study provides information on the nature and extent of collaboration from the perspective of midwives and child health and family health nurses providing universal health services for children and families. Both professional groups emphasised the impact of service disconnection on families. However, their ability to negotiate

  9. 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.

  10. 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.

  11. An Early Assessment of Accountable Care Organizations Efforts to Engage Patients and Their Families

    Science.gov (United States)

    Shortell, Stephen M.; Sehgal, Neil; Bibi, Salma; Ramsay, Patricia P.; Neuhauser, Linda; Colla, Carrie H.; Lewis, Valerie A.

    2017-01-01

    Accountable Care Organizations (ACOs) have incentives to meet quality and expenditure targets and share in resulting savings. Achieving these goals will require ACOs to engage more actively with patients and their families. The extent to which ACOs do so is currently unknown. Using mixed-methods including a national survey, phone interviews and site-visits; we examine the extent to which ACOs actively engage patients and their families, explore challenges involved; and consider approaches for dealing with those challenges. Results indicate that greater ACO use of patient activation and engagement (PAE) activities at the point-of-care may influence more positive leadership perceptions of the impact of PAE investments on ACO costs, quality, and outcomes of care. We identify a number of important practices associated with greater PAE, including high-level leadership commitment, goal-setting supported by adequate resources, extensive provider training and use of inter-disciplinary care teams, and frequent monitoring and reporting on progress. PMID:26038349

  12. Dominance of paternalism in family-centered care in the pediatric intensive care unit (PICU): an ethnographic study.

    Science.gov (United States)

    Vasli, Parvaneh; Dehghan-Nayeri, Nahid; Borim-Nezhad, Leili; Vedadhir, AbouAli

    2015-06-01

    This article examines the culture of family-centered care (FCC) in the pediatric intensive care unit (PICU) using focused ethnography. Data collection strategy was participant observation, fieldwork, and interviews with main actors of the PICU, namely supervisors, nurses, and parents. This study took place in one PICU in a hospital in Tehran, Iran. The results were in the main named as paternalism and were presented as five themes: "non-possessed environment," "separation of the children from their parents," non-interactive communication," "limited participation," and "affection and sympathy combined with superiority." In conclusion, the prevailing atmosphere in care was paternalistic as there was a huge gap between conceptually or theoretically accepted application of FCC in PICU and what is practically administrated. Bridging such a gap between theory and practice can be helpful in improving social, environment, and organizational culture for the children, their parents, and health care providers as well as their performance in the context of PICU.

  13. 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.

  14. A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

    Science.gov (United States)

    Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; van Vliet, Liesbeth; Nicholson, Caroline; Evans, Catherine J; George, Rob; Bailey, Katharine; Davies, Joanna M; Guo, Ping; Daveson, Barbara A; Higginson, Irene J; Murtagh, Fliss Em

    2018-02-01

    Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. In-depth qualitative interviews, analysed using Framework analysis. Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target

  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. 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.

  17. 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.

  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. Family reintegration of children and adolescents in foster care in Brazilian municipalities with different population sizes

    OpenAIRE

    Andrea M. Iannelli; Simone Gonçalves Assis; Liana Wernersbach Pinto

    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 an...

  20. 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.

  1. 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.

  2. Quality Primary Care and Family Planning Services for LGBT Clients: A Comprehensive Review of Clinical Guidelines.

    Science.gov (United States)

    Klein, David A; Malcolm, Nikita M; Berry-Bibee, Erin N; Paradise, Scott L; Coulter, Jessica S; Keglovitz Baker, Kristin; Schvey, Natasha A; Rollison, Julia M; Frederiksen, Brittni N

    2018-04-01

    LGBT clients have unique healthcare needs but experience a wide range of quality in the care that they receive. This study provides a summary of clinical guideline recommendations related to the provision of primary care and family planning services for LGBT clients. In addition, we identify gaps in current guidelines, and inform future recommendations and guidance for clinical practice and research. PubMed, Cochrane, and Agency for Healthcare Research and Quality electronic bibliographic databases, and relevant professional organizations' websites, were searched to identify clinical guidelines related to the provision of primary care and family planning services for LGBT clients. Information obtained from a technical expert panel was used to inform the review. Clinical guidelines meeting the inclusion criteria were assessed to determine their alignment with Institute of Medicine (IOM) standards for the development of clinical practice guidelines and content relevant to the identified themes. The search parameters identified 2,006 clinical practice guidelines. Seventeen clinical guidelines met the inclusion criteria. Two of the guidelines met all eight IOM criteria. However, many recommendations were consistent regarding provision of services to LGBT clients within the following themes: clinic environment, provider cultural sensitivity and awareness, communication, confidentiality, coordination of care, general clinical principles, mental health considerations, and reproductive health. Guidelines for the primary and family planning care of LGBT clients are evolving. The themes identified in this review may guide professional organizations during guideline development, clinicians when providing care, and researchers conducting LGBT-related studies.

  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. 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.

  5. Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

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    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 

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

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    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.

  7. Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

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    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.

  8. Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN).

    Science.gov (United States)

    Ranade-Kharkar, Pallavi; Weir, Charlene; Norlin, Chuck; Collins, Sarah A; Scarton, Lou Ann; Baker, Gina B; Borbolla, Damian; Taliercio, Vanina; Del Fiol, Guilherme

    2017-09-01

    Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN). We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes. The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes. Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions. © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com

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

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    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.

  10. 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.

  11. 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.

  12. 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.

  13. 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

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    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

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

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    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

  15. The impact of team-based primary care on health care services utilization and costs: Quebec's family medicine groups.

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    Strumpf, Erin; Ammi, Mehdi; Diop, Mamadou; Fiset-Laniel, Julie; Tousignant, Pierre

    2017-09-01

    We investigate the effects on health care costs and utilization of team-based primary care delivery: Quebec's Family Medicine Groups (FMGs). FMGs include extended hours, patient enrolment and multidisciplinary teams, but they maintain the same remuneration scheme (fee-for-service) as outside FMGs. In contrast to previous studies, we examine the impacts of organizational changes in primary care settings in the absence of changes to provider payment and outside integrated care systems. We built a panel of administrative data of the population of elderly and chronically ill patients, characterizing all individuals as FMG enrollees or not. Participation in FMGs is voluntary and we address potential selection bias by matching on GP propensity scores, using inverse probability of treatment weights at the patient level, and then estimating difference-in-differences models. We also use appropriate modelling strategies to account for the distributions of health care cost and utilization data. We find that FMGs significantly decrease patients' health care services utilization and costs in outpatient settings relative to patients not in FMGs. The number of primary care visits decreased by 11% per patient per year among FMG enrolees and specialist visits declined by 6%. The declines in costs were of roughly equal magnitude. We found no evidence of an effect on hospitalizations, their associated costs, or the costs of ED visits. These results provide support for the idea that primary care organizational reforms can have impacts on the health care system in the absence of changes to physician payment mechanisms. The extent to which the decline in GP visits represents substitution with other primary care providers warrants further investigation. Copyright © 2017 The Author(s). Published by Elsevier B.V. All rights reserved.

  16. Family-centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology.

    Science.gov (United States)

    Watt, L; Dix, D; Gulati, S; Sung, L; Klaassen, R J; Shaw, N T; Klassen, A F

    2013-03-01

    Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit. © 2011 Blackwell Publishing Ltd.

  17. The Family in Care for the Elderly: Managing the Overload and Coping with Difficulties

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    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.

  18. Family members' experiences with intensive care unit diaries when the patient does not survive.

    Science.gov (United States)

    Johansson, Maria; Wåhlin, Ingrid; Magnusson, Lennart; Runeson, Ingrid; Hanson, Elizabeth

    2018-03-01

    The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU). A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos. The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting. Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient. © 2017 Nordic College of Caring Science.

  19. Developing the concept of family involvement and the alienation questionnaire in the context of psychiatric care.

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    Ewertzon, Mats; Lützén, Kim; Svensson, Elisabeth; Andershed, Birgitta

    2008-12-01

    Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

  20. Food and Nutrition Practices and Education Needs in Florida's Adult Family Care Homes

    Science.gov (United States)

    Dahl, Wendy J.; Ford, Amanda L.; Gal, Nancy J.

    2014-01-01

    A statewide survey was carried out to determine food and nutrition practices and education needs of Florida's adult family care homes (AFCHs). The 30-item survey included questions on food and nutrition education, supplement use, and menu planning. Infrequent use of menus and nutrition supplements was reported. A strong need was indicated for…

  1. 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.