Determinants of depression in primary caregivers of disabled older relatives: a path analysis

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Rafael del -Pino-Casado

2017-11-01

Full Text Available Abstract Background Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives. Methods Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200 was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression. Results Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure and an internal obligation (beliefs of obligation; (b our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

Quality of Life among Primary Caregivers of Women with Breast Cancer: A Review

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Jawad Ghaleb Obaidi

2013-04-01

Full Text Available Background: Cancer diagnosis has a significant impact not only on women, but also on their Primary caregivers. Understanding the effects of a breast cancer diagnosis on physical and mental health outcomes in caregivers is important because these variables are key components of quality of life. Quality of life is a multi-dimensionalconstruct measuring overall enjoyment of life. This study intends to describe the impact of caring for women with breast cancer on the quality of life among their primary caregivers.Method: We conducted a comprehensive search in PubMed, MEDLINE andCINAHL. In addition, we used the web search engine “Google” for abstracts from 2007 to 2012. A total of eight studies were reviewed that met the following inclusion criteria: adult women with breast cancer, research conducted in English. Studies ranged from 2007-2011. The total sample size in the eight studies on adult caregivers totaled 789 participants. The average age of participants in all of the studies was 49.55 years.There were seven studies that had a quantitative focus,which mainly used a questionnaire and survey to estimate quality of life among primary caregivers. The qualitative approach included in-depth interviews and a focus group.Results: Accumulating evidence has supported the concept that cancer affects not only the patients but also their primary caregiver's quality of life.They face multiple challenges in caring for women with breast cancer, including physical, emotional, social, and financial stress that affects the caregiver's quality of life.Conclusion: Breast cancer diagnosis not only affects the patient's quality of life, but in parallel, also affects the quality of life of the primary caregiver. Thus more focus should be placed on providing moral and social support, and educational resources to improve the level of the caretaker's quality of life.

Association between Primary Caregiver Education and Cognitive and Language Development of Preterm Neonates.

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Asztalos, Elizabeth V; Church, Paige T; Riley, Patricia; Fajardo, Carlos; Shah, Prakesh S

2017-03-01

Objective  This study aims to explore the association between primary caregiver education and cognitive and language composite scores of the Bayley Scales of Infant and Toddler Development, 3rd ed. (Bayley-III) in preterm infants at 18 to 21 months corrected age. Design  An observational study was performed on preterm infants born before 29 weeks' gestation between 2010 and 2011. Primary caregivers were categorized by their highest education level and cognitive and language composite scores of the Bayley-III were compared among infants between these groups with adjustment for perinatal and neonatal factors. Results  In total, 1,525 infants/caregivers were included in the multivariate analysis. Compared with those with less than a high school education, infants with primary caregivers who received partial college/specialized training displayed higher cognitive (adjusted difference [AD]: 4.6, 95% confidence interval [CI]: 1.8-7.4) and language scores (AD: 4.0, 95% CI: 0.8-7.1); infants with primary caregivers with university graduate education or above also demonstrated higher cognitive (AD: 6.4, 95% CI: 2.6-10.1) and language scores (AD: 9.9, 95% CI: 5.7-14.1). Conclusion  Higher levels of education of the primary caregiver were associated with increased cognitive and language composite scores at 18 to 21 months corrected age in preterm infants. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Caregivers' satisfaction and supervision of primary health care ...

African Journals Online (AJOL)

Caregivers' satisfaction and supervision of primary health care services in Nnewi, ... made in the reduction of childhood health indicators in the previous decade, ... supervision of PHCs should also improve the quality of child health services.

Caregiving process and caregiver burden: Conceptual models to guide research and practice

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Brehaut Jamie

2004-01-01

Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Caregiving process and caregiver burden: Conceptual models to guide research and practice

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Raina, Parminder; O'Donnell, Maureen; Schwellnus, Heidi; Rosenbaum, Peter; King, Gillian; Brehaut, Jamie; Russell, Dianne; Swinton, Marilyn; King, Susanne; Wong, Micheline; Walter, Stephen D; Wood, Ellen

2004-01-01

Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area. PMID:14723791

Treatment of childhood tuberculosis: caregivers' practices and perceptions in Cape Town, South Africa

NARCIS (Netherlands)

Bélard, Sabine; Isaacs, Washiefa; Black, Faye; Bateman, Lindy; Madolo, Lucia; Munro, Jacinta; Workman, Lesley; Grobusch, Martin P.; Zar, Heather J.

2015-01-01

A child's caregiver is key to the successful drug delivery and outcome of tuberculosis (TB) treatment. Understanding caregivers' practices and perceptions is important in the management of childhood TB. To investigate caregivers' practices and perceptions regarding TB treatment of children. A

The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness.

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Dionne-Odom, J Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A; Rocque, Gabrielle B; Azuero, Andres; Acemgil, Aras; Martin, Michelle Y; Astin, Meka; Ejem, Deborah; Kvale, Elizabeth; Heaton, Karen; Pisu, Maria; Partridge, Edward E; Bakitas, Marie A

2017-08-01

Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes 1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

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Hsiao, Chiu-Yueh; Tsai, Yun-Fang

2015-06-01

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help

Family functioning and depression in primary caregivers of stroke patients in China

OpenAIRE

Yuan-li Guo; Yan-jin Liu

2015-01-01

Objective: To determine the relationship between family functioning and depression in primary caregivers of stroke survivors in China. Design: Baseline cross-sectional data from an intervention study for stroke survivors and their families were used. Setting: Neurology inpatient service of a large urban hospital. Participants: Stroke survivors (n = 180), each with a primary caregiver, were enrolled in this study. The mean age of stroke survivors was 65.60 years, and the mean age of p...

Home based care practices by caregivers of under five children with ...

African Journals Online (AJOL)

Background: Home treatment for childhood febrile illness is a common practice among caregivers in Nigeria as well as some other countries in sub- Saharan Africa. The aim of the study was to assess the home based care practices of caregivers of under- five children with febrile illnesses as seen in the general paediatric ...

[22q11.2 deletion: handicap-related problems and coping strategies of primary caregivers].

Science.gov (United States)

Briegel, Wolfgang; Schneider, Marco; Schwab, K Otfried

2009-11-01

To investigate handicap-related problems of children and adolescents with 22q11.2 deletion syndrome and their primary caregivers' coping strategies. Primary caregivers of 153 subjects aged 2-16 years were anonymously asked to fill out questionnaires, e.g., the Handicap Related Problems for Parents Inventory. Primary caregivers of 96 subjects (53 males, 43 females; mean age: 7;0 [2;1-16;11] years) sent back questionnaires. Patient's behaviour and discipline were the most important handicap-related problems. Significant correlations could be found between the patient's age and his/her relationship with the primary caregiver (rho=0.228; p=.029) and other family members (rho=0.293; p=.004). Compared to other parents of physically handicapped children or those with multiple handicaps, these parents did not experience increased stress. The more the coping strategies "self-fulfillment" and "intensification of partnership" were used, the lower parental stress was (p=.012, p=.025, respectively). "Focusing on the handicapped child" was positively correlated with high parental stress (p=.000). With regard to parental stress and coping strategies, primary caregivers of children and adolescents with 22q11.2 deletion do not significantly differ from other parents of physically handicapped children. As handicap-related family problems increase with the patient's age, a growing need for counseling, especially for aspects of parenting and discipline, and for treatment can be presumed.

Factors Related to Perceived Needs of Primary Caregivers of Patients with Schizophrenia

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Ling-Ling Yeh

2008-08-01

Conclusion: Four clusters of caregivers' perceived needs were identified and found to be related to psychopathologic and demographic factors. These data are of value in designing appropriate community psychiatric programs to improve the quality of care and enhance the capacity of primary caregivers to care for patients.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient

DEFF Research Database (Denmark)

Lund, Line; Ross, Lone; Petersen, Morten Aagaard

2014-01-01

BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and t...

Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers.

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Adams, Deana; Dahdah, Marie

2016-06-27

Qualitative research methods allowed the investigator to contribute to the development of new theories and to examine change in processes over time, which added rich detail to existing knowledge of the use of coping and adaptive strategies by traumatic brain injury survivors and their primary caregivers (Ponsford, Sloan, & Snow, 2013). The advantages of phenomenological study were that it allows flexibility to explore and understand meanings attached by people to well-studied concepts such as coping, resiliency, and adaptation or compensation. Phenomenological study was sensitive to contextual factors. It also permitted the study of in-depth dynamics of coping and adaptive strategies of TBI survivors and primary caregivers, while understanding the social and psychological implications of the phenomenon. To explore the needs and deficits of adult traumatic brain injury (TBI) survivors and primary caregivers; and to identify their self-initiated coping and adaptive strategies. Significant to this study was the development of coping and adaptive strategies by the participants after their discharge from inpatient and rehabilitation treatment. The compensatory skills taught in treatment settings did not transfer to the home environment. Therefore, these strategies developed independently from previous treatment recommendations contributed to the development of theory related to rehabilitation and counseling. Distinctive to this study was the similarity of coping and adaptive strategies developed from both mild and severe traumatic brain injury survivors. This study consisted of eleven with TBI and six primary caregivers (N = 17), who participated in a series of semi-structured interviews aimed at discovering the coping and adaptive strategies utilized in dealing with the effects of brain injury. A Qualitative Phenomenological design was employed. Patience and understanding, support, and professional help were identified by TBI survivors and caregivers as being their

Review of informal care. Discovering the primary caregiver

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María Pilar Catalán Edo

2012-03-01

Full Text Available Introduction. The concept of informal care is complex and multidimensional. Caring involves tasks, relationships, feelings and costs. Women socialization as family welfare providers become them into “health agents” but not “health subjects”. Method. A cross-sectional study regarding the informal care situation during the last decade was performed. The profile of the caregiver and how this role had influenced in his the quality of life was analyzed. Several searches were performed at the following electronic databases: Cochrane Plus, Pubmed, OSM, ODS, RISG, IMSERSO, using the following terms: Gender identity, caregivers, inequality, and home care services. 40 articles were included. Results. The primary caregiver profile is a middle-aged woman, housewife, with low education level and ties of kinship with the person who is cared. It is the daughter who mostly takes this role, followed by the spouse. They perceive that their life is conditioned by this task. Care activity has important health implications for people who perform it, pointing out the negative impact on psychological health, which causes stress and anxiety and overload. Social support is directly related to psychological welfare, and it affects positively to their quality of life. Caring causes positive effects on the caregiver but they are rarely studied. Discussion. The landscape of care in the last ten years has changed a little. Formal services’ is minority. Studies focused exclusively on female caregivers generate biased information.

Validity and reliability of the Early Childhood Caries Perceptions Scale (ECCPS) to assess health beliefs related to early childhood caries prevention among primary caregivers of children under 5 years of age.

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Pisarnturakit, Pagaporn P; Shaw, Bret R; Tanasukarn, Chanuantong; Vatanasomboon, Paranee

2012-09-01

Primary caregivers' child oral health care beliefs and practices are major factors in the prevention of Early Childhood Caries (ECC). This study assessed the validity and reliability of a newly-developed scale--the Early Childhood Caries Perceptions Scale (ECCPS)--used to measure beliefs regarding ECC preventive practices among primary caregivers of young children. The ECCPS was developed based on the Health Belief Model. The construct validity and reliability of the ECCPS were examined among 254 low-socioeconomic status primary caregivers with children under five years old, recruifed from 4 Bangkok Metropolitan Administration Health Centers and a kindergarten school. Exploratory factor analysis (EFA) revealed a four-factor structure. The four factors were labeled as Perceived Susceptibility, Perceived Severity, Perceived Benefits and Perceived Barriers. Internal consistency measured by the Cronbach's coefficient alpha for those four factors were 0.897, 0.971, 0.975 and 0.789, respectively. The ECCPS demonstrated satisfactory levels of reliability and validity for assessing the health beliefs related to ECC prevention among low-socioeconomic primary caregivers.

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

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Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

2016-06-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

Formal caregivers of older adults: reflection about their practice

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Marina Picazzio Perez Batista

2014-10-01

Full Text Available OBJECTIVE To understand the job function of caregivers of older adults and contribute to the debate on the consolidation of this professional practice. METHODOLOGICAL PROCEDURES This is a descriptive, qualitative, and exploratory study. Four focal group sessions were performed in 2011 with 11 elderly companions, formal caregivers of older adults in the Programa Acompanhante de Idosos (Program for Caregivers of Older Adults, Sao Paulo, SP, Southeastern Brazil. These sessions, guided by a semi-structured script, were audio-recorded and fully transcribed. Data were analyzed using the Content Analysis technique, Thematic Modality. RESULTS In view of considering the caregivers of older adults as a new category of workers, it was difficult to define their duties. The elderly companions themselves as well as the care receivers, their families, and the professionals that comprised the team were unclear about their duties. The professional practice of these formal caregivers has been built on the basis of constant discussions and negotiations among them and other team members in Programa Acompanhante de Idosos during daily work. This was achieved via a recognition process of their job functions and by setting apart other workers’ exclusive responsibilities. CONCLUSIONS The delimitation of specific job functions for elderly companions is currently one of the greatest challenges faced by these workers to develop and consolidate their professional role as well as improve Programa Acompanhante de Idosos.

A study of knowledge, attitude and practice regarding administration of pediatric dosage forms and allied health literacy of caregivers for children

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Amrita Sil

2017-01-01

Full Text Available Context: Caregivers of sick children have to be careful with medicine dosing and giving medicines to a reluctant child can be challenging. Aim: To assess the knowledge, attitude, and practices of caregivers regarding pediatric medicine administration and health literacy allied to this task. Settings and Design: This cross-sectional study was carried out on outpatient and inpatient basis in the pediatrics department of a teaching hospital over 6 months. Subjects and Methods: Data regarding sociodemographic profile of patient and caregiver, idea regarding pediatric dosage forms, dosing of medicines, and medication errors during administration were recorded from 377 caregivers. Reconstitution of dry powder and measurement of 5 mL liquid medicine using measuring cup of the medicine phial was demonstrated by the caregivers. Statistical Analysis: Association assessed by point biserial correlation and Spearman's rank correlation. Results: Majority of the primary caregivers surveyed were young, educated, homemaker mothers. Liquid medicines were used maximally (88.9%. Majority (87.3% of the caregivers used standardized dosing instruments to measure liquids and reconstitution (85.9%, and teaspoon measurement task (91% was performed satisfactorily by most. Some potentially wrong practices (e.g., adding medicine to milk, redilution of reconstituted medicine, and storing beyond the recommended period were recorded. Medication errors were reported by 44.5% caregivers, significantly more in the outpatient setting. Although the statistical correlation was weak, the chance of medication error was less, and the precision of measurement was better with increasing education of the caregiver. Conclusions: Physicians need to be aware of the limitations of knowledge and the possibility of wrong administration practices among caregivers of children. Remedial measures in this regard can reduce the risk of medication errors.

Primary care practice and health professional determinants of immunisation coverage.

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Grant, Cameron C; Petousis-Harris, Helen; Turner, Nikki; Goodyear-Smith, Felicity; Kerse, Ngaire; Jones, Rhys; York, Deon; Desmond, Natalie; Stewart, Joanna

2011-08-01

To identify primary care factors associated with immunisation coverage. A survey during 2005-2006 of a random sample of New Zealand primary care practices, with over-sampling of practices serving indigenous children. An immunisation audit was conducted for children registered at each practice. Practice characteristics and the knowledge and attitudes of doctors, nurses and caregivers were measured. Practice immunisation coverage was defined as the percentage of registered children from 6 weeks to 23 months old at each practice who were fully immunised for age. Associations of practice, doctor, nurse and caregiver factors with practice immunisation coverage were determined using multiple regression analyses. One hundred and twenty-four (61%) of 205 eligible practices were recruited. A median (25th-75th centile) of 71% (57-77%) of registered children at each practice was fully immunised. In multivariate analyses, immunisation coverage was higher at practices with no staff shortages (median practice coverage 76% vs 67%, P = 0.004) and where doctors were confident in their immunisation knowledge (72% vs 67%, P= 0.005). Coverage was lower if the children's parents had received information antenatally, which discouraged immunisation (67% vs 73%, P = 0.008). Coverage decreased as socio-economic deprivation of the registered population increased (P < 0.001) and as the children's age (P = 0.001) and registration age (P = 0.02) increased. CONCLUSIONS Higher immunisation coverage is achieved by practices that establish an early relationship with the family and that are adequately resourced with stable and confident staff. Immunisation promotion should begin antenatally. © 2011 The Authors. Journal of Paediatrics and Child Health © 2011 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome.

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Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L

1999-10-01

Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.

[Association between anxiety and coping strategies employed by primary caregivers of bedridden patients].

Science.gov (United States)

Cedillo-Torres, Arianna Gabriela; Grijalva, María Guadalupe; Santaella-Hidalgo, Guadalupe B; Cuevas-Abad, Martha; González Pedraza-Avilés, Alberto

2015-01-01

The primary caregiver faces a set of problems derived from the responsibility to provide care to his patient; this leads to the creation of complex psychological responses that act as a mechanism known as cognitive and behavioral coping. The objective was to determine if there was a correlation between the level of anxiety and the coping strategies used by primary caregivers of bedridden patients. Transversal, descriptive and correlational study. Beck Anxiety Inventory and the Coping Strategies Inventory were used. We used Spearman's rank correlation coefficient, a significance level of 0.05 and the statistical program SPSS, version 15. We included 60 primary caregivers. The most common score for anxiety was moderate (28 %). The most frequently used strategy was problem solving (average = 14.7). By relating the level of anxiety and coping strategies a significant correlation was obtained with problem solving: r = 0.260; self-criticism, r = 0.425; wishful thinking, r = 0.412; and social withdrawal, r = 0.453. The anxiety has an impact on the way caregivers cope; most of the population who have moderate to severe anxiety use desadaptive strategies focused on emotion.

[Coping and subjective burden in primary caregivers of dependent elderly relatives in Andalusia, Spain].

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Pérez-Cruz, Margarita; Muñoz-Martínez, M Ángeles; Parra-Anguita, Laura; Del-Pino-Casado, Rafael

To analyse the relationship between the type of coping and subjective burden in caregivers of dependent elderly relatives in Andalusia (Spain). Cross-sectional study. Primary Health Care (autonomous community of Andalusia, Spain). A convenience sample of 198 primary caregivers of dependent elderly relatives. Coping (Brief COPE), subjective burden (caregiver stress index), objective burden (functional capacity [Barthel Index], cognitive impairment [Pfeiffer Test], behavioural problems of the care recipient [Neuropsychiatric Inventory], and caregivers' dedication to caring), gender and kinship. Most caregivers were women (89.4%), daughters of the care recipient (57.1%), and shared home with him/her (69.7%). On controlling for objective burden, gender and kinship, it was found that subjective burden was positively associated with dysfunctional coping (β=0.28; P<.001) and negatively with emotion-focused coping (β=-0.25; P=.001), while no association was found with problem-focused coping. Dysfunctional coping may be a risk factor for subjective burden, and emotion-focused coping may be a protective factor for that subjective burden regardless of the objective burden, and gender and kinship of the caregivers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Correlates of caregiver burden among family caregivers of older Korean Americans.

Science.gov (United States)

Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers

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Yi Eng J

2011-06-01

Full Text Available Abstract Background Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. Methods A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS assessed the stress level due to life events. Results The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36, 61.32 (15.52, 62.77 (17.33, 64.02 (14.86 consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. Conclusion Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL.

Hiring and screening practices of agencies supplying paid caregivers to older adults.

Science.gov (United States)

Lindquist, Lee A; Cameron, Kenzie A; Messerges-Bernstein, Joanne; Friesema, Elisha; Zickuhr, Lisa; Baker, David W; Wolf, Michael

2012-07-01

To assess what screening practices agencies use in hiring caregivers and how caregiver competency is measured before assigning responsibilities in caring for older adults. One-to-one phone interviews in which interviewers posed as prospective clients seeking a caregiver for an older adult relative. Cross-sectional cohort of agencies supplying paid caregivers to older adults in Illinois, California, Florida, Colorado, Arizona, Wisconsin, and Indiana. Four hundred sixty-two home care agencies were contacted, of which 84 were no longer in service, 165 offered only nursing care, and 33 were excluded; 180 agencies completed interviews. Agencies were surveyed about their hiring methods, screening measures, training practices, skill competencies assessments, and supervision. Two coders qualitatively analyzed open-ended responses. To recruit caregivers, agencies primarily used print and Internet (e.g., Craigslist.com) advertising (n = 69, 39.2%) and word-of-mouth referrals (n = 49, 27.8%). In hiring, agencies required prior "life experiences" (n = 121, 68.8%) few of which (n = 33, 27.2%) were specific to caregiving. Screening measures included federal criminal background checks (n = 96, 55.8%) and drug testing (n = 56, 31.8%). Agencies stated that the paid caregiver could perform skills, such as medication reminding (n = 169, 96.0%). Skill competency was assessed according to caregiver self-report (n = 103, 58.5%), testing (n = 62, 35.2%), and client feedback (n = 62, 35.2%). General caregiver training length ranged from 0 to 7 days. Supervision ranged from none to weekly and included home visits, telephone calls, and caregivers visiting the central office. Using an agency to hire paid caregivers may give older adults and their families a false sense of security regarding the background and skill set of the caregiver. © 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.

Knowledge, Attitudes and Practices of Caregivers of People with Disabilities in Processes of Social Inclusion in the Municipality Madrid, Cundinamarca

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Diana Camargo Rojas

2015-05-01

Full Text Available Introduction: The social inclusion of people with disabilities (PWD, dependent on many economic, social, political and cultural factors that affect their social development. One factor that generates greater social exclusion, corresponding to attitudinal barriers identified in the immediate environment. Objective: To identify knowledge, attitudes and practices of primary caregivers, about disability and care they provide to PcD linked to services Outpatient Gustavo Escallon Cayzedo of Santa Fe de Bogota Foundation (CAGEC, municipality of Madrid, Cundinamarca. Material and methods: Research with mixed approach, descriptive study aimed at caregivers of PcD, whom a semi-structured interview was applied. The quantitative analysis was performed using descriptive statistics and qualitative analysis was performed by generating an array of established and emerging categories. Results: economic and labor conditions affecting significantly the lives of caregivers, who spend more than 10 hours a day to care PcD, resulting in some symptoms of “caregiver syndrome” are evident. Most caregivers do not know the rights and duties of the population, and those who know they associate with the access to services. Participation is associated with assistance to certain activities, and not from his political notion. These skills relate to the practices of caregivers which are oriented on the biomedical model. Discussion: Being studied the conditions of the caregiver barriers, attitudes and support networks, observed how are you affecting your life project. Despite this, the activities of public and private entities are directed to the PcD, so the implementation of actions that promote the health of the caregiver is suggested.

[The resilience and health status of primary caregivers of schizophrenia patients].

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Fan, Ya-Chi; Chen, Mei-Bih; Lin, Kuan-Chia; Bai, Ya-Mei; Wei, Shiow-Jing

2014-12-01

Resilience has been shown to have a positive effect on health status. However, little research has been conducted on the impact of resilience on the health of primary caregivers of schizophrenia patients. This study investigated the correlations between resilience and the health status of caregivers of schizophrenia patients. A cross-sectional, descriptive research design was used. Data collection was conducted using a set of questionnaires that included a demographic datasheet, the SOC-13 (Sense of Coherence), the DASS-21 (Depression Anxiety Stress Scales), and the SF-36 (short form). Seventy caregivers of schizophrenia patients were enrolled as participants at the psychiatric inpatient department of a medical center. SPSS 17.0 and SAS.9.2 statistical software packages were used to conduct descriptive analysis, the Sobel test, and Tobit model analysis. (1) The mean QOL (quality of life) scale score was 67.46 (SD = 17.74). Nearly one-fifth (18.6%) of caregivers were classified in the low to high depression range; 17.1% were classified in the low to high anxiety level; and 10% were classified in low to high stress level. (2) Duration of the caring period correlated negatively with caregiver QOL; having a concomitant disease significantly impacted QOL and resilience; and number of patient hospitalization days correlated negatively with level of caregiver anxiety. (3) The numbers of incidents of patient violence and patient suicide attempts correlated negatively with caregiver resilience and QOL. (4) Resilience was a mediator between care-giver demographic data and QOL. (5) Caregiver resilience was a predictor of QOL, depression, anxiety, and stress. The findings of the present study increase our understanding of the impact of resilience on the health status of caregivers of schizophrenia patients. The authors hope these finding may be referenced in the development of resilience-based nursing caring models in the future.

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

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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.

Co-creating healthful eating behaviors with very young children: The impact of information overload on primary caregivers.

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Norton, Julie L; Raciti, Maria M

2017-01-01

Primary caregivers of very young children are subject to excessive and often disparate information regarding the instilling of healthful eating behaviors. Our study focuses on the integration of the operant resources of primary caregivers (i.e., their knowledge and modeling skills) and that of their very young children (i.e., their self-regulation of energy intake and food preferences) to co-create healthful eating behaviors as a measure to curb overweight and obesity in adulthood. Our two-stage qualitative study makes original contributions demonstrating that primary caregivers' efforts to co-create healthful eating behaviors with their very young children are adversely affected by information overload.

Pediatric caregiver attitudes toward email communication: survey in an urban primary care setting.

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Dudas, Robert Arthur; Crocetti, Michael

2013-10-23

Overall usage of email communication between patients and physicians continues to increase, due in part to expanding the adoption of electronic health records and patient portals. Unequal access and acceptance of these technologies has the potential to exacerbate disparities in care. Little is known about the attitudes of pediatric caregivers with regard to their acceptance of email as a means to communicate with their health care providers. We conducted a survey to assess pediatric caregiver access to and attitudes toward the use of electronic communication modalities to communicate with health care providers in an urban pediatric primary care clinic. Participants were pediatric caregivers recruited from an urban pediatric primary care clinic in Baltimore, Maryland, who completed a 35-item questionnaire in this cross-sectional study. Of the 229 caregivers who completed the survey (91.2% response rate), 171 (74.6%) reported that they use email to communicate with others. Of the email users, 145 respondents (86.3%) stated that they would like to email doctors, although only 18 (10.7%) actually do so. Among email users, African-American caregivers were much less likely to support the expanded use of email communication with health care providers (adjusted OR 0.34, 95% CI 0.14-0.82) as were those with annual incomes less than US $30,000 (adjusted OR 0.26, 95% CI 0.09-0.74). Caregivers of children have access to email and many would be interested in communicating with health care providers. However, African-Americans and those in lower socioeconomic groups were much less likely to have positive attitudes toward email.

Nutritional Deficiencies, the Absence of Information and Caregiver Shortcomings: A Qualitative Analysis of Infant Feeding Practices in Rural China.

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Ai Yue

Full Text Available Development during the first two years of life is critical and has a lasting impact on a child's health. Poor infant and child nutrition can lead to deficiencies in essential micronutrients, which may cause a weakened immune system and lasting effects on children's growth and development. Recent studies in rural Shaanxi Province found an anemia prevalence of 54.3% among rural children aged six to twelve months. While new large-scale, quantitative research has begun to catalogue the extent of child malnutrition and anemia, no effort has yet been made to look more closely at the potential reasons for rural children's nutritional deficiencies through qualitative analysis. This study aims to elucidate some of the fundamental causes of poor complementary feeding practices that may lead to anemia among children in rural Shaanxi Province, China.We interviewed sixty caregivers participating in a large survey on child health and nutrition. We conducted three waves of interviews with children's primary caregivers in seventeen rural villages within four nationally-designated poverty counties in the southern part of Shaanxi Province.The qualitative analysis reveals that poor complementary feeding practices are common across our sample. Information gathered from our interviews suggests that complementary feeding practices are impeded by two constraints: absence of understanding topics related to infant health and nutrition under caregivers, as well as inadequate sources of information on these topics. Poverty does not appear to constrain child feeding practices.Our results uncover lack of proper knowledge on infant and child nutrition among rural caregivers in China. This situation causes them to fail incorporating micronutrient rich foods in their children's diet. Age-appropriate complementary feeding can stimulate children's physical and cognitive development, but in its absence it leads to iron-deficiency anemia. We suggest that steps be taken to educate

Understanding caregivers' attitudes towards physical punishment of children: evidence from 34 low- and middle-income countries.

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Cappa, Claudia; Khan, Shane M

2011-12-01

This article presents findings on caregivers' attitudes towards physical punishment of children from 34 household surveys conducted in low- and middle-income countries in 2005 and 2006. The article analyzes the variability in attitudes by background characteristics of the respondents to examine whether various factors at the individual and family levels correlate with the caregivers' beliefs in the need for violent discipline. The article also examines to what extent attitudes influence behaviors and compares groups of respondents to see how attitudes relate to disciplinary practices across caregivers of different socio-economic backgrounds. The analysis is based on nationally representative data from 33 MICS and 1 DHS surveys. Questions on child discipline were addressed to the mother (or primary caregiver) of one randomly selected child aged 2-14 years in each household. The questionnaire asked whether any member of the household had used various violent and non-violent disciplinary practices with that child during the past month. Additionally, the interviewers asked the respondent if she believed that, in order to bring up that child properly, physical punishment was necessary. The sample included 166,635 mothers/primary caregivers. The analysis shows that, in most countries, the majority of mothers/primary caregivers did not think there was a need for physical punishment. Overall, characteristics such as household wealth and size, educational level and age, as well as place of residence were significantly associated with caregivers' attitudes. The analysis confirms that beliefs influence disciplinary practices to a large degree: in all the countries but two, children were significantly more likely to experience physical punishment if their mothers/primary caregivers thought such punishment was needed. However, large proportions of children were found to be subject to physical punishment even if their mothers/primary caregivers did not consider this method

Double Bind: Primary Caregivers of Children with Special Health Care Needs and Their Access to Leave Benefits

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Chung, Paul J.; Garfield, Craig F.; Elliott, Marc N.; Vestal, Katherine D.; Klein, David J.; Schuster, Mark A.

2013-01-01

Objective Family leave benefits are a critical tool allowing parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). Methods We conducted telephone interviews with three successive cohorts of employed parents of CSHCN, randomly sampled from a California children’s hospital. At Wave 1 (November 2003 to January 2004) we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006) we conducted 396 parent interviews. At Wave 3 (November 2007 to December 2008) we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses, using wave indicators and sample weights. Results Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs. 82%, Ppaid leave outside of sick leave/vacation (41% vs. 51%, Pleave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child’s illness and to report being unable to miss work when they needed to. Conclusions Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve health for CSHCN and their families. PMID:23477748

Self-administered acupressure for symptom management among Chinese family caregivers with caregiver stress: a randomized, wait-list controlled trial.

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Tiwari, Agnes; Lao, Lixing; Wang, Amy Xiao-Min; Cheung, Denise Shuk Ting; So, Mike Ka Pui; Yu, Doris Sau Fung; Lum, Terry Yat Sang; Yuk Fung, Helina Yin King; Yeung, Jerry Wing Fai; Zhang, Zhang-Jin

2016-10-28

Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. This study will provide evidence for the effectiveness of self-administered acupressure in reducing stress and improving

Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study.

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Jeyagurunathan, Anitha; Sagayadevan, Vathsala; Abdin, Edimansyah; Zhang, YunJue; Chang, Sherilyn; Shafie, Saleha; Rahman, Restria Fauziana Abdul; Vaingankar, Janhavi Ajit; Chong, Siow Ann; Subramaniam, Mythily

2017-05-19

This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia. A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses. The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms

Access to leave benefits for primary caregivers of children with special health care needs: a double bind.

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Chung, Paul J; Garfield, Craig F; Elliott, Marc N; Vestal, Katherine D; Klein, David J; Schuster, Mark A

2013-01-01

Family leave benefits are a key tool that allow parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). We conducted telephone interviews with 3 successive cohorts of employed parents of CSHCN, randomly sampled from a California children's hospital. At Wave 1 (November 2003 to January 2004), we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006), we conducted 396 parent interviews. At Wave 3 (November 2007 to January 2008), we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses by using wave indicators and sample weights. Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs 82%, P paid leave outside of sick leave/vacation (41% vs 51%, P Leave Act benefits (28% vs 44%, P leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child's illness and to report being unable to miss work when they needed to. Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve the circumstances of CSHCN and their families. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

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Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

2016-09-01

The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.

Burden and depression in primary caregivers of persons with visual impairment

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Shubhank Khare

2016-01-01

Full Text Available Context: Caregivers who assist persons with visual impairment often neglect their needs, resulting in burden and depression. Rehabilitation efforts, directed to the disabled, seldom target the caregiver. Aim: To assess burden and depression in persons caring for blind individuals. Settings and Design: This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. Materials and Methods : Institutional Ethical Board approval was obtained and written informed consent too was obtained from the participants involved in this study. Persons with best-corrected vision <20/200 in the better eye, and their primary caregivers, were recruited. We recorded demography, other illness/disability, household income, relationship with disabled person, and caregiver burden (Caregiver Burden Scale and depression (Centre for Epidemiologic Studies Depression Scale. Statistical Analysis: Statistical analysis was carried out using SPSS version 20 (Released 2011. Armonk, NY: IBM Corp.; range, average, and standard deviation were determined for age, burden, and depression. The association between burden and depression was determined using Pearson′s correlation; the relationship between degree of disability and caregiver burden and depression was determined using unpaired t-test; using multiple linear regression, factors were found to be statistically significant; significance was taken at P < 0.05. Results: Twenty-seven (53.0% men and 24 (47.0% women had visual impairment. Most caregivers (n = 40; 81.6% were first-degree relatives or a spouse; 32 (65% had schooling <5 years; and 29 (59% were unemployed. Depression ranged from 21 to 52 (average 43.2 ± 5.71; it correlated with degree of disability (P = 0.012, household income (r = −0.320; P = 0.025, and burden (r = 0.616; P < 0.001. Burden ranged from 30 to 73 (average 54.5 ± 6.73 and correlated with degree of disability (P = 0.006. On multiple linear

Psychological Trauma and LGBT Caregivers: A Conceptual Framework to Guide Practice.

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Glaesser, Richard S; Patel, Bina R

2016-01-01

LGBT adults face unique risk factors such as social isolation, discrimination, and victimization, and occasionally th ey engage in detrimental behaviors like high alcohol and drug use and risky sexual activity that negatively impacts psychological/physical health. These risks can affect their overall health and stress the relationship with an older caregiver/recipient-partner following exposure to acute medical event. The experience of an acute medical event among a LGBT caregiving partner can result in psychological trauma. In this article the authors present a conceptual framework involving stress process theory, life course theory, and family systems perspective to understand the effect of stressors on LGBT caregiving partners. Implications for social work practice include assessing, coordinating care, counseling and negotiating services at micro level, engaging family-centered approaches to support positive transition to caregiving role at mezzo level, and advocating for policy and cultural shifts to supports and diminish stigma of this group.

Feasibility of central meditation and imagery therapy for dementia caregivers.

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Jain, Felipe A; Nazarian, Nora; Lavretsky, Helen

2014-08-01

Family dementia caregivers are at high risk of depression and burnout. We assessed the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress because of caregiving responsibilities. Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality of life, and mindfulness. Changes over the study and 3 month follow-up were analyzed with non-parametric related samples tests. Correlations of feeling state changes from meditation diaries at 1 week were made with symptom changes post meditation training. Ten participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8 sessions, and turned in home practice logs of 90 ± 10% of the time. Anxiety, depression, and insomnia symptoms decreased, and mindfulness ratings improved with large effects (all p meditation practice was associated with subsequent home meditation practice, anxiety change at 8 weeks, and endpoint satisfaction with CMIT-C. Central Meditation and Imagery Therapy for Caregivers is a feasible intervention for dementia caregivers. Results suggest that this therapeutic technique can reduce symptoms of anxiety, depression, and insomnia, and increase levels of mindfulness. Early response to meditation practice predicted those with the greatest short-term benefits, and this may inform future studies of meditation. Larger controlled efficacy studies of CMIT-C for dementia caregivers are warranted. Copyright © 2014 John Wiley & Sons, Ltd.

The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review.

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Lynch, J; Cahalan, R

2017-11-01

Literature review. To provide a detailed review of the literature regarding the impact of spinal cord injury (SCI) on the quality of life (QOL) of family members who have become the primary caregiver and to highlight potential interventions available. Appropriate databases were searched for relevant peer-reviewed studies. Twenty-five studies (four qualitative and 21 quantitative) were identified which investigated the role that family members play in caring for people with SCI and the impact it has on their QOL. Depression, anxiety, physical symptoms and reduced satisfaction with life in primary family caregivers of patients with SCI were commonly reported across the literature. Isolation, loss of identity and role changes were also regularly reported as negative outcomes of caregiving for someone with an SCI. A range of interventions (including family training, problem-solving training and support groups) have been shown to have benefits for family caregivers' QOL. SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on increasing patient/family education and access to support groups, is recommended.

What cancer means to the patients and their primary caregivers in the family-accounted Korean context: A dyadic interpretation.

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Jeong, Ansuk; An, Ji Yeong; Park, Jong Hyock; Park, Keeho

2017-11-01

When cancer hits a family, the entire family members start to adapt to the new status. This study aimed to investigate the main issue of the family with cancer patient and their way of solving it. In-depth interviews were conducted as a qualitative research. Thirty-three participants described their experience either as cancer patients or as family caregivers. Guided by the grounded theory, we identified the main concern of the families being primary caregiver selection. The primary caregiver was determined by the conditions of the patient and the family, but the primary caregiver accepted his/her role believing no alternative was plausible in the family. The processes of the entire family have change since cancer showed their "adapting living," which was identified as the core variable. On the basis of the current study's limitations, suggestions were made for future studies in which cultural attributes are distinguished from the medical system attributes. Copyright © 2016 John Wiley & Sons, Ltd.

Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

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Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

2017-12-01

To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases

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Hui-Yu Fan

2016-12-01

Full Text Available Rare diseases by definition do not occur often and it is difficult to provide palliative care for those affected due to the lack of information and treatment for those rare diseases. The families of those with rare diseases bear a heavy burden and have a harder time than even the families of disabled people. This research’s goal is to provide the families of those with rare diseases with information on how to provide care for their family members. The study uses the qualitative research method of semi-structured interview. We interviewed 10 rare disease children and adolescents’ primary caregivers. The results of the study indicated that if no one suffers from the rare diseases in their family, primary caregivers are not aware of the rare disease information. After their initial diagnosis, the caregivers will want to know how to best care for their family member, from how best to provide supportive care to providing physical therapy, in order to improve their quality of life and prognosis. When they discover their child’s disease is incurable, primary caregivers need information about social welfare and their child’s future. The main source of medical care information is provided by hospitals and patient-support organizations. Regarding information behavior, primary caregivers employ the information which they obtain and they either check the information they obtain with a professional authority, multiple sources, or compare it with patient experience to validate if the information is accurate or not. Finally, primary caregivers are glad to share what they find with other families that have children with a rare disease. They may use different ways of sharing information such as the Internet or face to face. [Article content in Chinese

Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support.

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Wang, Kai-Wei K; Lin, Hung-Ching; Lee, Chin-Ting; Lee, Kuo-Sheng

2016-07-01

To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support. Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation. The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index. The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used. A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need. To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. © 2016 John Wiley & Sons Ltd.

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

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Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

2008-04-15

This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.

The experience of being a grandmother who is the primary caregiver for her HIV-positive grandchild.

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Caliandro, G; Hughes, C

1998-01-01

The number of grandparents assuming care for their grandchildren is increasing, and this affects grandparents both positively and negatively. The current study builds on an earlier study of the effects of social support, stress, and level of illness on caregiving of children with acquired immune deficiency syndrome (AIDS) that identified both positive and negative effects of caregiving. To identify the lived experience of African American and Latino grandmothers as the primary caregivers for their grandchildren who are human immunodeficiency virus (HIV)-infected or have AIDS and to identify the similarities and differences between the two groups. Using Van Manen's method for hermeneutical phenomenological research, the lived experiences of 10 African American and Latino grandmothers who were the primary caregivers for their HIV-positive grandchildren were investigated. Additionally, the similarities and differences between the two groups were studied. Four themes identified were (a) upholding the primacy of the family, (b) living in the child-centered present, (c) being strong as mature women, and (d) living within a constricting environment. Twelve subthemes expanded and clarified the meaning of these themes. Although there were differences related to family structure and cultural backgrounds, the grandmothers were more alike than different.

Paternal Caregivers' Parenting Practices and Psychological Functioning among African American Youth Living in Urban Public Housing.

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Doyle, Otima; Clark Goings, Trenette; Cryer-Coupet, Qiana R; Lombe, Margaret; Stephens, Jennifer; Nebbitt, Von E

2017-09-01

Structural factors associated with public housing contribute to living environments that expose families to adverse life events that may in turn directly impact parenting and youth outcomes. However, despite the growth in research on fathers, research on families in public housing has practically excluded fathers and the role fathers play in the well-being of their adolescents. Using a sample of 660 African American adolescents recruited from public housing, we examined the relationship between paternal caregivers' (i.e., fathers' and father figures') parenting practices and adolescents' depressive symptoms, attitudes toward deviance, and self-efficacy. Using a latent profile analysis (LPA), we confirmed a four-class model of paternal parenting practices ranging from high to low levels of monitoring and encouragement. Results from a one-way ANOVA indicated that paternal caregivers with high (compared to moderate) levels of encouragement and monitoring were associated with youth who reported less depressive symptoms, higher levels of self-efficacy, and less favorable attitudes toward deviance. Discriminant analysis results indicated that approximately half of the sample were correctly classified into two paternal caregiver classes. The findings provide evidence that some of these caregivers engage in parenting practices that support youths' psychological functioning. More research is needed to determine what accounts for the variability in levels of paternal encouragement and supervision, including environmental influences, particularly for paternal caregivers exhibiting moderate-to-low levels of paternal encouragement and monitoring. © 2016 Family Process Institute.

Consultation etiquette in general practice: a qualitative study of what makes it different for lay cancer caregivers

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Jiwa Moyez

2011-10-01

Full Text Available Abstract Background It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs, who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns. Methods We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically. Results Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties' capacity and willingness to discuss caregivers' health. Nonetheless, some GPs monitor caregivers' health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP's skills. Conclusions Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient's needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers' needs systematically, but it needs to be complemented by GPs' desire and capacity to engage with patients in a

[Validation of the abbreviated Zarit scales for measuring burden syndrome in the primary caregiver of an elderly patient].

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Vélez Lopera, Johana María; Berbesí Fernández, Dedsy; Cardona Arango, Doris; Segura Cardona, Angela; Ordóñez Molina, Jaime

2012-07-01

To determine which abbreviated Zarit Scale (ZS) better evaluates the burden of the caregiver of an elderly patient in Medellin, Colombia. Validation study. Primary Care setting in the city of Medellin. Primary caregiver of dependent elderly patients over 65 years old. Sensitivity, specificity, positive predictive value, and negative predictive value for the different abbreviated Zarit scales, plus performing a reliability analysis using the Cronbach Alpha coefficient. The abbreviated scales obtained a sensitivity of between 36.84 and 81.58%, specificity between 95.99 and 100%, positive predictive values between 71.05 and 100%, and negative predictive values of between 91.64 and 97.42%. The scale that better determined caregiver burden in Primary Care was the Bedard Screening scale, with a sensitivity of 81.58%, a specificity of 96.35% and positive and negative predictive values of 75.61% and 97.42%, respectively. Copyright © 2010 Elsevier España, S.L. All rights reserved.

Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.

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Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia

2014-03-25

, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test). If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice. Clinical trials registrar: NCT02065427.

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

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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 ...

The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities.

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Huus, K; Dada, S; Bornman, J; Lygnegård, F

2016-11-01

Besides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive - particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities. A descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas. The majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas. Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them. © 2016 John Wiley & Sons Ltd.

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography.

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Pindus, Dominika M; Mullis, Ricky; Lim, Lisa; Wellwood, Ian; Rundell, A Viona; Abd Aziz, Noor Azah; Mant, Jonathan

2018-01-01

To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services. Systematic review and meta-ethnography. Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015). Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services. A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria. 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke. Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems. Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not

[Knowledge, attitudes and practices in oral health of parents and caregivers in children's homes in Colombia].

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González Martínez, Farith; Sierra Barrios, Carmen Cecilia; Morales Salinas, Luz Edilma

2011-01-01

To describe knowledge,attitudes and practices in oral health of parents and caregivers. A total of 333 parents and eight caregivers in children's homes in Colombia in 2010 completed questionnaires and participated in focus group interviews.The data was analyzed for frequency using the χ² test to evaluate significance. The qualitative information was interpreted using triangulated comments to detect patterns and discrepancies. For parents, good levels of knowledge (58.9%) and favorable attitudes (74.5%) were observed. In terms of practices, 50.6% of the children brushed their teeth before bed, with 69.6% of the parents applying the toothpaste to the brush. Among caregivers, a positive attitude toward developing promotional strategies was perceived, but they considered parents to have the main responsibility in matters of healthy oral habits. Parents and caregivers demonstrated favorable conditions in terms of their perceptions, which can be considered an opportunity to promote hygiene habits in children.

[Instruments for evaluating oral health knowledge, attitudes and practice for parents /caregivers of small children].

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Martignon, Stefania; Bautista-Mendoza, Gloria; González-Carrera, María; Lafaurie-Villamil, Gloria; Morales, Veicy; Santamaría, Ruth

2008-01-01

Designing three instruments for evaluating oral health knowledge, attitudes and practice in parents/caregivers of low social-economic status 0-5 year-olds. Evaluating the instruments' reliability in terms of internal consistency and analysing items. Three instruments were constructed for evaluating low social-economic status 0-5 year-olds' parents/caregivers' oral health knowledge, attitudes and practice in the municipality of Usaquén , Bogotá , Colombia . 47 parents/caregivers were given a test establishing the instrument's reliability in terms of internal consistency and the adults' level of knowledge, attitudes and practice. A sub-sample was qualitatively analysed (content verification and understanding). Reliability was evaluated using Cronbach's alpha coefficient. Items were analysed for improving constructing and understanding the questions, taking four criteria into account: corrected homogeneity index (CHI), response trend, correlation between items and qualitative analysis. Cronbach's alpha coefficient for knowledge, attitudes and practice was 0,82, 0,80 and 0,62, respectively. Participants' level of knowledge, attitudes and practice was acceptable (60 %, 55 % and 91 %, respectively). This study found two out of the three evaluated instruments to be reliable (knowledge and attitudes); all three of them were then redesigned. The resulting instruments represent a valuable tool which can be used in future studies for describing and evaluating preventative programmes.

Effects of Support on the Attitude of the Primary Caregiver of a Child with Down Syndrome.

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Heritage, Jeannette G.; And Others

Parents of children with mental or physical handicaps often experience overwhelming feelings of stress and anxiety. Research indicates that support for the primary caregiver can help alleviate some stressors involved in raising a child with a handicap. This study examined how level of support affects feelings of satisfaction the primary caregiver…

Evaluation of primary health workers training program to provide psychoeducation to family caregivers of persons with psychotic disorder

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Carla Raymondalexas Marchira

2016-02-01

Full Text Available ABTRACT Many persons suffering psychotic illnesses, such as schizophrenia, are largely untreated in low income countries. In these settings, most persons with severe mental illness live with their families. Thus, families play a particular critical role in determining whether a person with a psychotic illness will receive treatment and what the quality of treatment. Psychoeducation has proven to be extremely effective in helping families develop the knowledge and skills which is necessary to help their family members. Indonesia has a national policy to integrate the management of mental health problems into the primary health care system. However, in practice, such care does not implemented effectively. A preliminary study in primary health centers in two districts of Bantul and Gunung Kidul regency, Yogyakarta province, showed that there was very little or there is not any training for health care workers on diagnosis and treatment of psychotic disorder. This study was conducted to evaluate the effectiveness of the training program for health workers in three primary health centers in Yogyakarta, Indonesia, to provide psychoeducation to family caregivers for persons with psychotic disorder. A quasi-experimental study with the approach of one group pre and posttest design was performed in this study. Fortythree health workers in 3 primary health centers in Bantul and Gunung Kidul, Yogyakarta were trained every week for a month to provide psychoeducation to family caregivers who live with psychotic disorder patient. Result showed that the baseline score of knowledge of schizophrenia among health workers in 3 primary health centers in Bantul and Gunung Kidul before training were not significantly different (p=0.162. After the psychoeducation training program there were significantly different (p=0.003 of the score of knowledge of schizophrenia among health workers in 3 primary health care centers compared with before training. For conclusion, the

An analysis of caregiver profile and its impact on employment situation: primary caregivers of patients of Alzheimer´s and other dementias in the South Western of Spain

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Manuel, Ruiz-Adame Reina

2015-12-01

Full Text Available The aim of this paper is to analyse the main demographic and socio-economic conditions of the primary caregivers of Alzheimer's and dementia sufferers, and their relationship to the employment situation of the caregiver. Material and Methods: Empirical analysis of the data obtained from surveys of 694 primary caregivers of Alzheimer's and dementia sufferers through the Andalusian Associations of Relatives of Alzheimer’s Patients. The sampling procedure was selective non-probabilistic sampling. The SPSS 19 statistical software package was used to process the data. The verification of the hypothesis of independence of variables was performed using the chi square test under the usual parameters. Results: The employment rate of working-age caregivers is much lower than that of the general population, especially in older women with low levels of education who live with the patient. The data revealed that caregiving which takes place in the home represents the main restriction preventing access to the labour market, i.e. living with the patient is an additional handicap, and an even greater one for women. Conclusions: Those who care for dementia patients have greater limitations in accessing the labour market than the rest of the population, and this limitation is significantly greater when care is provided in the home. As such, health and social policy, with a view towards encouraging employment, needs to take into account the option of boosting available resources outside of family care.

Unintentional injury and its prevention in infant: knowledge and self-reported practices of main caregivers.

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Ramdzan, Siti Nurkamilla; Liew, Su May; Khoo, Ee Ming

2014-05-29

Unintentional injuries are the major cause of morbidity and mortality in infants. Prevention of unintentional injuries has been shown to be effective with education. Understanding the level of knowledge and practices of caregivers in infant safety would be useful to identify gaps for improvement. A cross-sectional study was conducted in an urban government health clinic in Malaysia among main caregivers of infants aged 11 to 15 months. Face-to-face interviews were conducted using a semi-structured self-designed questionnaire. Responses to the items were categorised by the percentage of correct answers: poor (70%). A total of 403 caregivers participated in the study. Of the 21 items in the questionnaire on knowledge, 19 had good-to-moderate responses and two had poor responses. The two items on knowledge with poor responses were on the use of infant walkers (26.8%) and allowing infants on motorcycles as pillion riders (27.3%). Self-reported practice of infant safety was poor. None of the participants followed all 19 safety practices measured. Eight (42.1%) items on self-reported practices had poor responses. The worst three of these were on the use of baby cots (16.4%), avoiding the use of infant walkers (23.8%) and putting infants to sleep in the supine position (25.6%). Better knowledge was associated with self-reported safety practices in infants (p safety was good but self-reported practice was poor. Further research in the future is required to identify interventions that target these potentially harmful practices.

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

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Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

2015-01-01

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation

Development of older men's caregiving roles for wives with dementia.

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Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas

2017-12-01

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices. © 2017 Nordic College of Caring Science.

Double- and Triple-Duty Caregiving Men: An Examination of Subjective Stress and Perceived Schedule Control.

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DePasquale, Nicole; Zarit, Steven H; Mogle, Jacqueline; Moen, Phyllis; Hammer, Leslie B; Almeida, David M

2018-04-01

Based on the stress process model of family caregiving, this study examined subjective stress appraisals and perceived schedule control among men employed in the long-term care industry (workplace-only caregivers) who concurrently occupied unpaid family caregiving roles for children (double-duty child caregivers), older adults (double-duty elder caregivers), and both children and older adults (triple-duty caregivers). Survey responses from 123 men working in nursing home facilities in the United States were analyzed using multiple linear regression models. Results indicated that workplace-only and double- and triple-duty caregivers' appraised primary stress similarly. However, several differences emerged with respect to secondary role strains, specifically work-family conflict, emotional exhaustion, and turnover intentions. Schedule control also constituted a stress buffer for double- and triple-duty caregivers, particularly among double-duty elder caregivers. These findings contribute to the scarce literature on double- and triple-duty caregiving men and have practical implications for recruitment and retention strategies in the health care industry.

Physical disability contributes to caregiver stress in dementia caregivers.

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Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

2005-03-01

Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

Facilitating out-of-home caregiving through health information technology: survey of informal caregivers' current practices, interests, and perceived barriers.

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Zulman, Donna M; Piette, John D; Jenchura, Emily C; Asch, Steven M; Rosland, Ann-Marie

2013-07-10

Many patients with chronic conditions are supported by out-of-home informal caregivers-family members, friends, and other individuals who provide care and support without pay-who, if armed with effective consumer health information technology, could inexpensively facilitate their care. We sought to understand caregivers' use of, interest in, and perceived barriers to health information technology for out-of-home caregiving. We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers' technology use for caregiving. Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients' health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving. Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers' interest

Explanatory models and distress in primary caregivers of patients with acute psychotic presentations: A study from South India.

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Joy, Deepa S; Manoranjitham, S D; Samuel, P; Jacob, K S

2017-11-01

Emotional distress among caregivers of people with mental illness is common, changes overtime and requires appropriate coping strategies to prevent long-term disability. Explanatory models, which underpin understanding of disease and illness, are crucial to coping. To study the association of explanatory models and distress among caregivers of people with acute psychotic illness. A total of 60 consecutive patients and their primary caregivers who presented to the Department of Psychiatry, Christian Medical College, Vellore, were recruited for the study. Positive and Negative Syndrome Scale (PANSS), Short Explanatory Model Interview (SEMI) and the General Health Questionnaire-12 (GHQ-12) were used to assess severity of psychosis, explanatory models of illness and emotional distress. Standard bivariate and multivariable statistics were employed. Majority of the caregivers simultaneously held multiple models of illness, which included medical and non-medical perspectives. The GHQ-12 score were significantly lower in people who held multiple explanatory models of illness when compared to the caregivers who believed single explanations. Explanatory models affect coping in caregivers of patients with acute psychotic presentations. There is a need to have a broad-based approach to recovery and care.

Projecting the effects of long-term care policy on the labor market participation of primary informal family caregivers of elderly with disability: insights from a dynamic simulation model.

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Ansah, John P; Matchar, David B; Malhotra, Rahul; Love, Sean R; Liu, Chang; Do, Young

2016-03-23

Using Singapore as a case study, this paper aims to understand the effects of the current long-term care policy and various alternative policy options on the labor market participation of primary informal family caregivers of elderly with disability. A model of the long-term care system in Singapore was developed using System Dynamics methodology. Under the current long-term care policy, by 2030, 6.9 percent of primary informal family caregivers (0.34 percent of the domestic labor supply) are expected to withdraw from the labor market. Alternative policy options reduce primary informal family caregiver labor market withdrawal; however, the number of workers required to scale up long-term care services is greater than the number of caregivers who can be expected to return to the labor market. Policymakers may face a dilemma between admitting more foreign workers to provide long-term care services and depending on primary informal family caregivers.

Multimedia material about velopharynx and primary palatoplasty for orientation of caregivers of children with cleft lip and palate.

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Costa, Tarcila Lima da; Souza, Olivia Mesquita Vieira de; Carneiro, Homero Aferri; Chiquito Netto, Cristianne; Pegoraro-Krook, Maria Inês; Dutka, Jeniffer de Cássia Rillo

2016-01-01

The objective of this study was to describe the process of elaboration and evaluation of multimedia material for caregivers about velopharynx, speech, and primary palatoplasty in babies with cleft lip and palate. The elaboration of the material involved an interdisciplinary relationship between the fields of Speech Language Pathology and Audiology, Dentistry and Arts. The definition and execution of the following activities were based on the principles of art education involving the following: characterization of audience, characterization of content, identification and elaboration of illustrations, characterization of educational approach, elaboration of text and narratives, definition of audiovisual sequence, and video preparation. The material was evaluated with the participation of 41 caregivers of patients with cleft lip and palate involving the comparison between acquired knowledge using an evaluation script applied before and after presenting the material. An increase was observed in correct responses regarding the role of velopharynx and the importance of primary palatoplasty for speech. The multimedia was effective in optimizing the knowledge of caregivers, suggesting the importance of such material during orientation.

Gender roles, marital intimacy, and nomination of spouse as primary caregiver.

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Allen, S M; Goldscheider, F; Ciambrone, D A

1999-04-01

Using data from a sample of married men and women undergoing treatment for cancer, we tested two potential hypotheses for the unequal representation of husbands and wives as spousal caregivers, including societal gender role norms and emotional closeness in the marital relationship. Multivariate analyses support both hypotheses; wives are only one third as likely as husbands to select their spouses as caregivers, and spouses who name their mates as confidants are three times more likely than those who do not to also name them as caregivers. We conclude that although gender role norms are key to caregiver selection, the intimacy inherent in the caregiving role renders an emotionally close marriage an important criterion to the selection of spouse as caregiver.

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

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Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

Informing social work practice through research with parent caregivers of a child with a life-limiting illness.

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Cadell, Susan; Kennedy, Kimberly; Hemsworth, David

2012-01-01

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.

Perceptions among primary caregivers about the etiology of delirium ...

African Journals Online (AJOL)

Objective: To study caregivers' perceptions about the cause of delirium and their distress caused by symptoms of delirium. Method: Adult caregivers of patients with delirium, who gave consent, were asked about their perceptions of the cause of delirium. Patients were assessed for delirium by using the delirium rating ...

African indigenous care-giving practices: Stimulating early childhood development and education in Kenya

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Pamela Wadende

2016-12-01

Full Text Available The indigenous communities in Africa, specifically Kenya, which is the focus of this article, had their own well-developed motivational systems that positively enhanced teaching and learning programmes in the community. These motivational systems were manifested in behaviours that were presented as sequential cultural tasks that demanded active engagement from children at every stage of development. The philosophical tenets of African indigenous education underscored education as preparation for life. This was a culturally based education that addressed the physical, emotional, mental and social aspects of a child’s successful development. It offered the child an opportunity to participate in practical, productive and responsible livelihood activities. This article suggests that a concert of research into these indigenous motivational care-giving practices and community participation in the activities of early childhood education may offer important insights into transitioning children from life in the home environment to that of the school and its accompanying academic tasks. When these motivational care-giving practices are incorporated in the process of transitioning children to formal schooling, then their chances of success in these new educational programmes could be enhanced.

Validity and reliability of Turkish Caregiver Burden Scale among family caregivers of haemodialysis patients.

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Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. In Turkey, there is a need for a multi-dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. A methodological study. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward-backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach's alpha and item-total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36-Item Short Form Health Survey (SF-36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Cronbach's alpha and item-total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale's five-factor solution. The confirmatory factor analysis five-factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43-0·81. By means of divergent validity, all sub-dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF-36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

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Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination

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Wafa eTrad

2015-09-01

Full Text Available IntroductionThis study aimed to assess psychological distress (PD as scored by the Distress Thermometer (DT in adult primary brain tumor (PBT patients and caregivers in a clinic setting, and ascertain if any high risk sub-groups for PD exist. Material and MethodsFrom May 2012 to August 2013, n=96 patients and n=32 caregivers (CG underwent DT screening at diagnosis, and a differing cohort of n=12 patients and n=14 caregivers at first recurrence. Groups were described by diagnosis (high grade, low grade and benign, and English versus non-English speaking. Those with DT score≥4 met caseness criteria for referral to psycho-oncology services. One-way ANOVA tests were conducted to test for between group differences where appropriate.ResultsAt diagnosis and first recurrence, 37.5% and 75.0% (respectively of patients had DT scores above the cut-off for distress. At diagnosis, 78.1% of caregivers met caseness criteria for distress. All caregivers at recurrence met distress criterion. Patients with high grade glioma had significantly higher scores than those with a benign tumor. For patients at diagnosis, non-English speaking participants did not report significantly higher DT scores than English speaking participants.DiscussionPsychological distress is particularly elevated in caregivers, and in patients with high grade glioma at diagnosis. Effective PD screening, triage and referral by skilled care coordinators is vital to enable timely needs assessment, psychological support and effective intervention.

Practical Diagnosis and Management of Dementia Due to Alzheimer’s Disease in the Primary Care Setting: An Evidence-Based Approach

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Kerwin, Diana R.

2013-01-01

Objective: To review evidence-based guidance on the primary care of Alzheimer’s disease and clinical research on models of primary care for Alzheimer’s disease to present a practical summary for the primary care physician regarding the assessment and management of the disease. Data Sources: References were obtained via search using keywords Alzheimer’s disease AND primary care OR collaborative care OR case finding OR caregivers OR guidelines. Articles were limited to English language from January 1, 1990, to January 1, 2013. Study Selection: Articles were reviewed and selected on the basis of study quality and pertinence to this topic, covering a broad range of data and opinion across geographical regions and systems of care. The most recent published guidelines from major organizations were included. Results: Practice guidelines contained numerous points of consensus, with most advocating a central role for the primary care physician in the detection, diagnosis, and treatment of Alzheimer’s disease. Review of the literature indicated that optimal medical and psychosocial care for people with Alzheimer’s disease and their caregivers may be best facilitated through collaborative models of care involving the primary care physician working within a wider interdisciplinary team. Conclusions: Evidence-based guidelines assign the primary care physician a critical role in the care of people with Alzheimer’s disease. Research on models of care suggests the need for an appropriate medical/nonmedical support network to fulfill this role. Given the diversity and breadth of services required and the necessity for close coordination, nationwide implementation of team-based, collaborative care programs may represent the best option for improving care standards for patients with Alzheimer’s disease. PMID:24392252

A Review of Ethnicity, Culture, and Acculturation Among Asian Caregivers of Older Adults (2000-2012).

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Miyawaki, Christina E

2015-02-01

This review identified domains of care experiences among studies of Chinese, Filipino, Japanese, Korean, and Vietnamese caregivers in the United States and Canada between 2000 and 2012. Using a narrative approach, 46 peer-reviewed journal articles were found through electronic databases and references. Considering caregivers' assimilation to host countries, attention was given to their culture, socioeconomic resources, immigrant status, filial responsibility, generation, and acculturation. Three primary domains were identified across subgroups. The caregivers' experiences domain was a strong sense of filial responsibility and its varied effects on caregiving experience; in the cultural values domain, reciprocity, and familism. In the acculturation domain, caregivers' generations influenced their experiences. Because our society is rapidly changing demographically and culturally, studies of older adults and their caregivers that are not only inclusive of all racial/ethnic groups but also sensitive to specific racial/ethnic and cultural subgroup differences are necessary to inform policy and practice.

Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

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Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

2015-01-01

The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol

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Pérez-Arechaederra Diana

2010-09-01

Full Text Available Abstract Background Although Primary Health Care (PHC Teams are used to deal with prevention and treatment of sanitary problems in adults with chronic diseases, they usually have a lack of experience in development of psychotherapeutic interventions. However, these interventions are the ones that achieve better results to reduce symptomatology and improve emotional state of caregivers. The study aims to evaluate the effectiveness of an intervention of psychotherapy in improving the mental health and Quality of life of caregivers. This intervention is based on theoretical approaches to care adjusted to cognitive theory, in order to be applied in primary health care centres. Methods/Design This is multicentre clinical trials study, randomized in two parallel groups, carry out in two PHC, Study population: 150 caregivers will be included by consecutive sampling and they will be randomized the half to experimental group and the other half to control group. They provide mostly all the assistance to care-dependent familiars receiving attention in PHC Centers. Measurements: Each caregiver will be evaluated on a personal interview. The caregivers' assessment protocol: 1 Assessment of different socio-demographic related to care, and caregiver's personal situation. 2Care-dependent individuals will also be assessed by Barthel Index and Pfeiffer Questionnaire (SPMSQ. 3Change in caregivers will be the principal measure: family function (Family APGAR Questionnaire, burden short questionnaire (Short Zarit Burden Interview, quality of life (Ruiz & Baca: 1993 Questionnaire, the Duke-UNK Functional Social Support Questionnaire, the General Health Questionnaire-12, and changes in Dysfunctional Thoughts about caring. 4 Intervention implementation measures will also be assessed. Intervention: A psychotherapeutic intervention will be 8 sessions of 90 minutes in groups. This intervention has been initially developed for family caregivers of patients with dementia

CAREGIVERS' KNOWLEDGE AND HOME MANAGEMENT OF FEVER IN CHILDREN.

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Koech, P J; Onyango, F E; Jowi, C

2014-05-01

Fever is one of the most common complaints presented to the Paediatric Emergency Unit (PEU). It is a sign that there is an underlying pathologic process, the most common being infection. Many childhood illnesses are accompanied by fever, many of which are treated at home prior to presentation to hospital. Most febrile episodes are benign. Caregivers are the primary contacts to children with fever. Adequate caregivers' knowledge and proper management of fever at home leads to better management of febrile illnesses and reduces complications. To determine the caregivers' knowledge and practices regarding fever in children. A cross-sectional study. Peadiatric Emergency Unit at Kenyatta National Hospital (KNH) SUBJECTS: Two hundred and fifty caregivers of children under 12 years presenting with fever in August to October 2011 to the PEU. Three quarters of the caregivers' defined fever correctly. Their knowledge on the normal body was at 47.6%. Infection was cited as the leading cause of fever (95.2%). Brain damage (77.6%) and dehydration (65.6%) were viewed as the most common complication. Fever was treated at home by 97.2% of caregivers, most of them used medication. Fever was defined correctly by 75.2% of the study participants and a majority of them used touch to detect fever. Fever was managed at home with medications. Public Health Education should be implemented in order to enlighten caregivers on fever and advocate for the use of a clinical thermometer to monitor fever at home.

Being concerned: caregiving for Taiwanese mothers of a child with cerebral palsy.

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Huang, Yu-Ping; Kellett, Ursula; St John, Winsome

2012-01-01

This article explores the Chinese social context and provides insight into Taiwanese mothers' challenging experiences when a disabled child is born into their families. International research indicates that barriers to maternal caregiving for a disabled child revolve around challenging relationships. Giving birth to a disabled child creates a huge challenge for mothers in Chinese society. Data were collected using in-depth interviews and journaling methods. A hermeneutic phenomenological approach, informed by the philosophical world views of Heidegger and Gadamer, provided theoretical guidance in revealing and interpreting mothers' experiences. Interviews were carried out with a purposeful sample of 15 mothers who were primary caregivers for a child aged between 0-18 years who was diagnosed with cerebral palsy and used Mandarin or Taiwanese as their primary language. Shared meanings revealed four modes of being concerned: (1) experiencing burden as a sole primary caregiver; (2) managing the challenges by balancing demands; (3) being marginalised by others; and (4) encountering limited or no professional support. Taiwanese mothers face the strain of managing barriers to caregiving in contexts in which their children are not supported or acknowledged as being important contributors to family and Chinese society at large. This study highlights how the family can be important to caregiving mothers in traditional Chinese family life. Poor support and dynamics will emerge when family members regard disability as a loss of face or a stigma. By learning from Taiwanese mothers who accommodate barriers to caregiving on a daily basis, nurses can seize the impetus to explore ways of reconceptualising nursing practice with families and people with disabilities. The aim is to explore ways that will ultimately align intentions and caring processes and foster coping and positive reward in caring, thereby creating a context that is stress reducing and therapeutic. © 2011 Blackwell

Complementary and alternative medicine for Duchenne and Becker muscular dystrophies: characteristics of users and caregivers.

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Zhu, Yong; Romitti, Paul A; Conway, Kristin M; Andrews, Jennifer; Liu, Ke; Meaney, F John; Street, Natalie; Puzhankara, Soman; Druschel, Charlotte M; Matthews, Dennis J

2014-07-01

Complementary and alternative medicine is frequently used in the management of chronic pediatric diseases, but little is known about its use by those with Duchenne or Becker muscular dystrophy. Complementary and alternative medicine use by male patients with Duchenne or Becker muscular dystrophy and associations with characteristics of male patients and their caregivers were examined through interviews with 362 primary caregivers identified from the Muscular Dystrophy Surveillance, Tracking, and Research Network. Overall, 272 of the 362 (75.1%) primary caregivers reported that they had used any complementary and alternative medicine for the oldest Muscular Dystrophy Surveillance, Tracking, and Research Network male in their family. The most commonly reported therapies were from the mind-body medicine domain (61.0%) followed by those from the biologically based practice (39.2%), manipulative and body-based practice (29.3%), and whole medical system (6.9%) domains. Aquatherapy, prayer and/or blessing, special diet, and massage were the most frequently used therapies. Compared with nonusers, male patients who used any therapy were more likely to have an early onset of symptoms and use a wheel chair; their caregivers were more likely to be non-Hispanic white. Among domains, associations were observed with caregiver education and family income (mind-body medicines [excluding prayer and/or blessing only] and whole medical systems) and Muscular Dystrophy Surveillance, Tracking, and Research Network site (biologically based practices and mind-body medicines [excluding prayer and/or blessing only]). Complementary and alternative medicine use was common in the management of Duchenne and Becker muscular dystrophies among Muscular Dystrophy Surveillance, Tracking, and Research Network males. This widespread use suggests further study to evaluate the efficacy of integrating complementary and alternative medicine into treatment regimens for Duchenne and Becker muscular

Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study.

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McCann, Terence V; Lubman, Dan I; Clark, Eileen

2012-01-01

To explore first-time primary caregivers' experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians. Design.  Qualitative interpretative phenomenological analysis. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data. Two competing themes were identified in the data, highlighting caregivers' contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs' concerns and young people's requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers' commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for

Colorectal cancer patients' preferences for type of caregiver during survivorship care.

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Wieldraaijer, T; Duineveld, L A M; Donkervoort, S C; Busschers, W B; van Weert, H C P M; Wind, J

2018-03-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to contact for symptoms during survivorship care, (2) what patient factors are associated with a preferred caregiver, and (3) whether the type of symptom is associated with a preferred caregiver. A cross-sectional study of CRC survivors at different time points. For 14 different symptoms, patients reported if they would consult a caregiver, and who they would contact if so. Patient and disease characteristics were retrieved from hospital and general practice records. Two hundred and sixty patients participated (response rate 54%) of whom the average age was 67, 54% were male. The median time after surgery was seven months (range 0-60 months). Patients were divided fairly evenly between tumour stages 1-3, 33% had received chemotherapy. Men, patients older than 65 years, and patients with chronic comorbid conditions preferred to consult their general practitioner (GP). Women, patients with stage 3 disease, and patients that had received chemotherapy preferred to consult their secondary care provider. For all symptoms, patients were more likely to consult their GP, except for (1) rectal blood loss, (2) weight loss, and (3) fear that cancer had recurred, in which case they would consult both their primary and secondary care providers. Patients appreciated all caregivers involved in survivorship care highly; with 8 out of 10 points. CRC survivors frequently consult their GP in the current situation, and for symptoms that could alarm them to a possible recurrent disease consult both their GP and secondary care provider. Patient and tumour characteristics influence patients' preferred caregiver.

Primary Caregivers Satisfaction and its Related Factors in Home Health Care Services

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Shu-Ping Wei

2011-06-01

Conclusion: This study showed that the overall perceived performance is higher than expectation for home health care service provided. The primary caregiver who was older than 30 years, who had lower education level, and other than siblings showed higher satisfaction. The four items that need improving included “home health care nurses will provide detailed description of services,” “home health care nurses will provide knowledge of illness,” “home health care nurses can complete the promised tasks,” and “home health care nurses will actively inquire patient’s conditions and needs.”

Anxiety and depressive symptoms in primary caregivers of patients with severe depression. A snapshot from a military mental health care facility

International Nuclear Information System (INIS)

Javed, M.; Ayaz, S.B.; Ullah, A.; Matee, S.

2015-01-01

This study aimed at determining the frequency and severity of anxiety and depressive symptoms in primary caregivers of severely depressed patients and evaluate the impact of demographic factors. Methodology: It was a cross-sectional study conducted in the out-patient as well as the in-patient setting of Armed Forces institute of Mental Health, Rawalpindi, from September 2009 to May 2012. Through non-probability purposive sampling, primary caregivers of patients diagnosed with severe depression by consultant psychiatrists were included and scored by resident psychiatrists on Revised Beck Depression Inventory (BDI-II) and Beck Anxiety Inventory (BAI). Results: Of 316 caregivers (mean age: 37.75 ± 12.26 years), majority (52.8%) were females, married (70.6%), employed (58.5%), earned < Rs. 5,000 per month (40.5%) and literate from grade 1-5 (21.8%). Most of them were mothers (25.3%) of the patients and were the caregivers for less than one year (43.4%). The mean total BDI-II score was 17.29 ± 13.94.It was significantly high in subjects belonging to age group of < 44 years. The mean total BAI score was 14.44 ± 11.56 and it was not significantly related to any demographic factor. Conclusion: Caregivers of severely depressed patients suffered considerable levels of anxiety and depressive symptoms. Younger caregivers were at higher risk of developing depressive symptoms but the age did not significantly affect development of anxiety. Gender, marital status, employment status, monthly income, relationship with the patient, ethnicity based on provinces, educational level and duration of care giving did not appear to be significantly related to the development of anxiety or depressive symptoms in our sample. (author)

Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central-Southern Andes.

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Caqueo-Urízar, Alejandra; Breslau, Joshua; Gilman, Stephen E

2015-02-01

The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical-religious. The sample comprised 253 patients (n=117 Aymara, and n=136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient's primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and non-Aymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia. Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI)=0.05, 0.62) than non-Aymara caregivers. Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical-religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment. © The Author(s) 2014.

Adult caregiving among American Indians: the role of cultural factors.

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Goins, R Turner; Spencer, S Melinda; McGuire, Lisa C; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A

2011-06-01

With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Data came from a cross-sectional study of 5,207 American Indian adults residing on 2 closely related Lakota Sioux reservations in the Northern Plains and one American Indian community in the Southwest. Cultural factors included measures of cultural identity and traditional healing practices. Seventeen percent of our sample reported being caregivers. In both the Northern Plains and Southwest, caregiving was positively correlated with younger age, being a woman, larger household size, attending and participating in Native events, and endorsement of traditional healing practices. In both regions, attendance and participation in Native events and engagement in traditional healing practices were associated with increased odds of caregiving after adjusting for covariates. Only in the Northern Plains did we find that speaking some Native language at home was associated with increased odds of being a caregiver. Examination of interaction terms indicated some sex differences in the association between cultural factors and caregiving in the Northern Plains but not in the Southwest. Our findings indicate that greater cultural identity and engagement in traditional healing practices are related to caregiving in American Indian populations. Caregiving research, intervention efforts, and caregiving programs and services in Native communities should pay special attention to the dynamics of culture and caregiving.

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India.

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Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul

In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

447 Asthma Knowledge among Parents and/or Caregivers of Asthmatic Children Attending a Practical Allergy Course

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Sandoval-Ramírez, Eunice; Livano Prez, Mayra Alondra; Tercero-Quintanilla, Gabriela; Rosas-Vargas, Miguel Angel; del Rio, Blanca; del Río-Chivardí, Jaime Mariano

2012-01-01

Background Asthma is one of the most frequent chronic diseases, with worldwide prevalence of 1 to 18%. Patient and the patient's family education is considered by all International Guides fundamental to achieve this disease control. The aim of this study is to asses the asthma knowledge among parents and/or caregivers of pediatric asthmatic patients before and after attending to a Practical Allergy Course given at Hospital Infantil de Mexico Federico Gomez by the Pediatric Allergy Department. Methods Transversal Study that included 115 persons attending to a Practical Allergy Course that answered the previously validated instrument to asses the asthma knowledge among parents or caregivers NAKQ (Newcastle Asthma Knowledge Questionnaire); its Spanish version consisting in 31 questions; before and after the practical course. A descriptive annalysis was made; usefullness of the course was determinated by x2. Stadistical packagge used was SPSS 17. Results A total of 115 questionnaires were applied, only 99 were properly answered and were included in the analysis; from these 35 were male and 64 female; 80% with high-school and middle school schooling; 92% were small families with 1 to 3 children; 90% of the families had only one child with asthma; 63% was receiving the practical course for the first time. Before attending the practical course the mean answered questions was 30 and after attending the mean answered questions was 31 (LR = 57.465; P < 0.000); for the first evaluation the mean correct answers was 19 and the latter 22 correct answers, finding statistical significant differences (LR = 30.253; P < 0.000). Conclusions We found improved asthma knowledge among parents and caregivers of asthmatic children after attending to a Practical Allergy Course.

Family Child Care Learning Environments: Caregiver Knowledge and Practices Related to Early Literacy and Mathematics

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Phillips, Beth M.; Morse, Erika E.

2011-01-01

This paper presents findings from a stratified-random survey of family child care providers' backgrounds, caregiving environments, practices, attitudes, and knowledge related to language, literacy, and mathematics development for preschool children. Descriptive results are consistent with prior studies suggesting that home-based providers are…

Predictors of Depressive Symptoms in Primary Caregivers of Young Children with or at Risk for Developmental Delay

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Feldman, M.; McDonald, L.; Serbin, L.; Stack, D.; Secco, M. L.; Yu, C. T.

2007-01-01

Background: Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child,…

Knowledge and practice of malaria prevention among caregivers of children with malaria admitted to a teaching hospital in Ghana

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Emmanuel Ameyaw

2015-08-01

Full Text Available Objective: To assess the knowledge and practice of malaria prevention among caregivers of children admitted to a teaching hospital in Ghana. Methods: A descriptive cross-sectional survey was conducted on caregivers of children who were hospitalized at the paediatric wards of the Komfo Anokye Teaching Hospital from March 2009 to June 2009. Data were analysed using StataTM version 8.2. Results: Nearly all caregivers (97.1% had heard of malaria. Of this proportion, 89.7% knew mosquito bite as a cause of malaria. The proportion of caregivers who were able to recognise the signs and symptoms of malaria were 87.6% (for fever, 47.1% (for vomiting and 28.1% (for headache. Radio and television were the major sources of information about malaria. Conclusions: Caregivers of children have adequate knowledge about malaria and its mode of transmission. Further education on the implementation of the preventive methods is still needed to help reduce the incidence of malaria among children.

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

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Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

2014-01-01

Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study.

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López-Ortega, Mariana; García-Peña, Carmen; Granados-García, Víctor; García-González, José Juan; Pérez-Zepeda, Mario Ulises

2013-02-08

The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens.The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less overall economic burden to

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

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Van Houtven Courtney

2011-11-01

Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient

Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

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Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.

Coping Skills Practice and Symptom Change: A Secondary Analysis of a Pilot Telephone Symptom Management Intervention for Lung Cancer Patients and Their Family Caregivers.

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Winger, Joseph G; Rand, Kevin L; Hanna, Nasser; Jalal, Shadia I; Einhorn, Lawrence H; Birdas, Thomas J; Ceppa, DuyKhanh P; Kesler, Kenneth A; Champion, Victoria L; Mosher, Catherine E

2018-05-01

Little research has explored coping skills practice in relation to symptom outcomes in psychosocial interventions for cancer patients and their family caregivers. To examine associations of coping skills practice to symptom change in a telephone symptom management (TSM) intervention delivered concurrently to lung cancer patients and their caregivers. This study was a secondary analysis of a randomized pilot trial. Data were examined from patient-caregiver dyads (n = 51 dyads) that were randomized to the TSM intervention. Guided by social cognitive theory, TSM involved four weekly sessions where dyads were taught coping skills including a mindfulness exercise, guided imagery, pursed lips breathing, cognitive restructuring, problem solving, emotion-focused coping, and assertive communication. Symptoms were assessed, including patients' and caregivers' psychological distress and patients' pain interference, fatigue interference, and distress related to breathlessness. Multiple regression analyses examined associations of coping skills practice during the intervention to symptoms at six weeks after the intervention. For patients, greater practice of assertive communication was associated with less pain interference (β = -0.45, P = 0.02) and psychological distress (β = -0.36, P = 0.047); for caregivers, greater practice of guided imagery was associated with less psychological distress (β = -0.30, P = 0.01). Unexpectedly, for patients, greater practice of a mindfulness exercise was associated with higher pain (β = 0.47, P = 0.07) and fatigue interference (β = 0.49, P = 0.04); greater practice of problem solving was associated with higher distress related to breathlessness (β = 0.56, P = 0.01) and psychological distress (β = 0.36, P = 0.08). Findings suggest that the effectiveness of TSM may have been reduced by competing effects of certain coping skills. Future interventions should consider focusing on assertive communication

Concept Analysis: Alzheimer's Caregiver Stress.

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Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Caserta, Michael

2016-01-01

The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer's disease and related dementias. Currently, there are more than 15 million unpaid caregivers for persons suffering from Alzheimer's disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. The paper incorporates the modified method of Wilson's concept analysis procedure to analyze the concept of caregiver stress. A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. © 2014 Wiley Periodicals, Inc.

Nurses caring for the spirit: patients with cancer and family caregiver expectations.

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Taylor, Elizabeth Johnston

2003-01-01

To determine what patients with cancer and primary family caregivers expect from nurses with regard to having their spiritual needs addressed. Descriptive, cross-sectional, qualitative study using Miles and Huberman s approach to data reduction. Outpatient and inpatient settings in a county hospital and a comprehensive cancer center, both located in a large, southwestern, metropolitan area. 28 African American and Euro-American adult patients with cancer and primary family caregivers were purposively selected to provide variation of experiences (e.g., religious backgrounds). In-depth, semistructured, tape-recorded interviews conducted by the investigator. Analysis of transcribed interviews concurrently with data collection followed a process of data concentration, data display, and conclusion drawing. Spiritual needs, spiritual care. Informants identified nursing approaches for spiritual needs, including kindness and respect; talking and listening; prayer; connecting with symmetry, authenticity, and physical presence; quality temporal nursing care; and mobilizing religious or spiritual resources. To provide spiritual care, nurses must possess requisites of a personal, relational, or professional nature. Although some patients or caregivers do not want overt forms of spiritual care, others are eager for them. Many recognize nonreligious actions or attitudes that nurses can practice to care for spiritual needs. Nurses must consider how they can address patient preconceptions and requisites for spiritual caregiving. Nurses may need to educate the public regarding their role as holistic and spiritual healthcare providers.

Effects of primary caregiver participation in vestibular rehabilitation for unilateral neglect patients with right hemispheric stroke: a randomized controlled trial

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Dai CY

2013-04-01

Full Text Available Chin-Ying Dai,1,2 Yu-Hui Huang,3,4 Li-Wei Chou,5,6 Shiao-Chi Wu,7 Ray-Yau Wang,8 Li-Chan Lin9 1School of Nursing, National Yang Ming University, Taipei, Taiwan; 2Department of Nursing, Central Taiwan University of Science and Technology, Taichung, Taiwan; 3Department of Physical Medicine and Rehabilitation, Chung Shan Medical University Hospital, Taichung, Taiwan; 4School of Medicine, Chung Shan Medical University, Taichung, Taiwan; 5Department of Physical Medicine and Rehabilitation, China Medical University Hospital, Taichung, Taiwan; 6School of Chinese Medicine, College of Chinese Medicine, China Medical University, Taichung, Taiwan; 7Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan; 8Department of Physical Therapy and Assistive Technology, National Yang-Ming University, Taipei, Taiwan; 9Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan, Republic of China Introduction: The current study aims to investigate the effects of primary caregiver participation in vestibular rehabilitation (VR on improving the measures of neglect, activities of daily living (ADL, balance, and falls of unilateral neglect (UN patients. Methods: This study is a single-blind randomized controlled trial. Both experimental (n = 24 and control groups (n = 24 received conventional rehabilitation. The experimental group undertook VR for a month. During the first and second weeks, a registered nurse trained the experimental group in VR. The primary caregivers in the experimental group supervised and guided their patients in VR during the third and fourth weeks. The outcome measures were neglect, ADL, balance, and falls. Results: The two groups of UN patients showed a significant improvement in neglect, ADL, and balance over time. Based on the generalized estimating equations model, an interaction was observed between groups and times. Significant interactions were observed between the VR group

Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study.

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Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace

2013-05-01

To report the moderating effects of work-related conditions and interactive family-care-giving variables, including mutuality and preparedness, on caregiver role strain and mental health for family caregivers of patients with dementia. Few studies have examined the interrelationships among caregivers' working conditions, care-giving dynamics and caregiver well-being. Cross-sectional, correlational study. Data were collected by self-completed questionnaires from 176 primary family caregivers of patients with dementia in Taiwan from May 2005-January 2006. Caregiver role strain and mental health were analysed by multiple regressions using a hierarchical method to enter independent variables and two- and three-way interaction terms after controlling for caregiver age and gender, employment status, and work flexibility and the simple effect of each independent variable. More preparedness was associated with less role strain for family caregivers with less work/care-giving conflict. More care-giving demand was associated with poorer mental health only for caregivers with low work/care-giving conflict and with average and low preparedness, but not high preparedness. For family caregivers with less work/care-giving conflict, more preparedness decreased role strain and maintained mental health even when care-giving demand was high. These results provide a knowledge base for understanding complex family caregiver phenomena and serve as a guide for developing interventions. Future studies with longitudinal follow-ups are suggested to explore actual causal relationships. © 2012 Blackwell Publishing Ltd.

"Mi Bebé y Yo": A Primary Care Group for Latina/o Infants and Their Spanish-Speaking Caregivers

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Margolis, Kate L.; Dunn, Dena M.; Herbst, Rachel Becker; Bunik, Maya; Buchholz, Melissa; Martinez, Dailyn; Talmi, Ayelet

2015-01-01

Culturally informed health interventions for linguistic minorities are crucial in promoting optimal child development. "Mi Bebé y Yo" is a primary care group for Spanish-speaking, Latina/o caregivers and their babies during their first year. Group visits occur in conjunction with well-baby checks and are designed to support families with…

A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention.

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Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J

2013-05-01

(1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

Barriers to meditation by gender and age among cancer family caregivers.

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Williams, Anna-Leila; Ness, Peter Van; Dixon, Jane; McCorkle, Ruth

2012-01-01

Despite solid basic science research supporting meditation's physiologic benefits, meditation remains a marginalized practice for many Westerners; observational and descriptive studies indicate a spectrum of barriers to meditation practice. The aim of this study was to determine differences in barriers to meditation by gender and age. A cross-sectional survey study of 150 family caregivers to adults with cancer visiting an outpatient chemotherapy center in Connecticut was conducted. The primary outcome was the Determinants of Meditation Practice Inventory. Explanatory variables included demographic characteristics, Center for Epidemiologic Studies-Depression Scale, Big Five Inventory, and Caregiver Reaction Assessment. Participants included 98 women and 52 men. Age range was 18-84 years (M = 52.3 years). The highest frequency of barriers for both genders related to misconceptions about meditation. The total number of barriers to meditation did not significantly vary by gender (p = .10) nor age (p = .27). After adjusting for personality trait, reactions to caregiving, and emotional distress, gender (adjusted β = 0.81, SE = 1.70, p = .63) and age (adjusted β = 0.02, SE = 0.05, p = .67) still did not predict the number of barriers to meditation. Backward elimination in model building showed that personality trait and reactions to caregiving account for 32% of the variability in barriers. The total number of barriers to meditation was examined, and a difference was not found by age or gender. It is possible that differences by age and gender exist at the item level of evaluation but were not evident when evaluating total scores. Further study is needed with samples large enough to have statistical power for item-level analysis.

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

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Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

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Henriksson, Anette; Årestedt, Kristofer

2013-07-01

Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

Associations of Caregiver Stress with Working Conditions, Caregiving Practices, and Child Behaviour in Home-Based Child Care

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Rusby, Julie C.; Jones, Laura Backen; Crowley, Ryann; Smolkowski, Keith

2013-01-01

Home-based child caregivers face unique stressors related to the nature of their work. One hundred and fifty-five home-based child care providers in Oregon, USA, participated in this cross-sectional correlational study. We investigated associations between indicators of caregiver stress and child care working conditions, the quality of caregiver…

"Fat is really a four-letter word": Exploring weight-related communication best practices in children with and without disabilities and their caregivers.

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McPherson, A C; Knibbe, T J; Oake, M; Swift, J A; Browne, N; Ball, G D C; Hamilton, J

2018-05-15

Health care professionals play a critical role in preventing and managing childhood obesity, but the American Academy of Pediatrics recently stressed the importance of using sensitive and nonstigmatizing language when discussing weight with children and families. Although barriers to weight-related discussions are well known, there are few evidence-based recommendations around communication best practices. Disability populations in particular have previously been excluded from work in this area. The objectives were to present the findings of a recent scoping review to children with and without disabilities and their caregivers for their reactions; and to explore the experiences and perceptions of the children and their caregivers regarding weight-related communication best practices. Focus group and individual interviews were conducted with 7-18-year olds with and without disabilities and their caregivers. The interview guide was created using findings from a recent scoping review of weight-related communication best practices. Inductive thematic analysis was employed. Eighteen children (9 boys; 7 children with disabilities) and 21 caregivers (17 mothers, 1 step-father, 3 other caregivers) participated in 8 focus group and 7 individual interviews. Preferred communication strategies were similar across those with and without disabilities, although caregivers of children with autism spectrum disorder endorsed more concrete approaches. Discussions emphasizing growth and health were preferred over weight and size. Strengths-based, solution-focused approaches for weight conversations were endorsed, although had not been widely experienced. Perceptions of weight-related communication were similar across stakeholder groups, regardless of children's disability or weight status. Participants generally agreed with the scoping review recommendations, suggesting that they apply broadly across different settings and populations; however, tailoring them to specific circumstances

The Effects of Caregiving Resources on the Incidence of Depression over One Year in Family Caregivers of Disabled Elderly

OpenAIRE

矢嶋, 裕樹

2007-01-01

The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...

The effects of caregiving resources on the incidence of depression over one year in family caregivers of disabled elderly

OpenAIRE

Yajima, Yuki; Tsutsui, Takako; Nakajima, Kazuo; Li, Hui-Ying; Takigawa, Tomoko; Wang, Da-Hong; Ogino, Keiki

2007-01-01

The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...

Effects of a Psychological Intervention in a Primary Health Care Center for Caregivers of Dependent Relatives: A Randomized Trial

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Rodriguez-Sanchez, Emiliano; Patino-Alonso, Maria C.; Mora-Simon, Sara; Gomez-Marcos, Manuel A.; Perez-Penaranda, Anibal; Losada-Baltar, Andres; Garcia-Ortiz, Luis

2013-01-01

Purpose: To assess, in the context of Primary Health Care (PHC), the effect of a psychological intervention in mental health among caregivers (CGs) of dependent relatives. Design and Methods: Randomized multicenter, controlled clinical trial. The 125 CGs included in the trial were receiving health care in PHC. Inclusion criteria: Identifying…

Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

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Taub Anita

2004-01-01

Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.

Grooming and cultural socialization: A mixed method study of caregiving practices in Burma (Myanmar) and the United States†

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Thein-Lemelson, Seinenu M

2015-01-01

Grooming behaviours are thought to be a crucial aspect of parenting and integral to the sociality of non-human mammals, but there have been few empirical studies on how grooming might be relevant to parenting and socialization processes in humans. Study 1 is a quantitative cross-cultural comparison of grooming practices in two cultural settings: an urban centre in Burma (Myanmar) and an urban centre in the United States. The study uses naturalistic video data of 57 families to analyse grooming behaviours directed at children. A broad range of ages was sampled in each culture to examine the developmental trajectory of grooming behaviours. Results indicate that significant cultural differences exist between Burma and the United States, with Burmese children being groomed by their caregivers more often than U.S. children. Results also indicate that cultural differences in grooming practices begin early and remain constant across age. An unexpected finding was that Burmese families were more variable in their behaviour than U.S. families. Study 2 attempts to explain this variability by using ethnography to describe how sociodemographic changes in Burma are leading to changes in parental values and socialization practices in the schools, but how embodied primary care in the homes appear resistant to change. PMID:25530498

Distress in cancer patients and their caregivers and association with the caregivers' perception of dyadic communication.

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Haun, Markus W; Sklenarova, Halina; Brechtel, Anette; Herzog, Wolfgang; Hartmann, Mechthild

2014-01-01

Discrepancies within cancer-affected couples can disrupt security within the dyadic relationship during cancer treatment. This study investigated the patients' and caregivers' distress and associations between the caregivers' perception of the patients' degree of open communication and their distress. In a cross-sectional survey, 189 pairs of cancer patients (31% gastrointestinal, 34% lung, 35% urological cancers) and their partners were assessed for distress (QSC-R10), depression and anxiety (PHQ-2/GAD-2). The caregivers also reported their perception of the patients' degree of disclosure regarding cancer-relevant topics (CCAT-F Disclosure subscale), caregiver strain (CSI), and unmet needs (SCNS-P&C). Prevalences of clinically significant distress were calculated. Associations were calculated between the caregivers' and the patients' ratings and between the caregivers' distress and their perception of the patients' degree of disclosure. 33% of the caregivers and 25% of the patients exhibited significant anxiety, with a tendency towards a higher frequency in the caregivers (p = 0.10). The prevalence of depression was lower but equally high in caregivers and patients. The caregivers' perceived non-disclosure by the patients was primarily associated with their anxiety (r = 0.31), disease-specific distress (r = 0.32), and psychological/emotional needs (r = 0.35). The identification of caregivers reporting problems in communicating with patients should be pursued in clinical practice as this might indicate that caregivers are particularly burdened. © 2014 S. Karger GmbH, Freiburg.

Identifying the substance abuse treatment needs of caregivers involved with child welfare.

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Chuang, Emmeline; Wells, Rebecca; Bellettiere, John; Cross, Theodore P

2013-07-01

Parental substance use significantly increases risk of child maltreatment, but is often under-identified by child protective services. This study examined how agency use of standardized substance use assessments and child welfare investigative caseworker education, experience, and caseload affected caseworkers' identification of parental substance abuse treatment needs. Data are from a national probability sample of permanent, primary caregivers involved with child protective services whose children initially remained at home and whose confidential responses on two validated instruments indicated harmful substance use or dependence. Investigative caseworkers reported use of a formal assessment in over two thirds of cases in which substance use was accurately identified. However, weighted logistic regression indicated that agency provision of standardized assessment instruments was not associated with caseworker identification of caregiver needs. Caseworkers were also less likely to identify substance abuse when their caseloads were high and when caregivers were fathers. Implications for agency practice are discussed. Copyright © 2013 Elsevier Inc. All rights reserved.

Primary Care Practice: Uncertainty and Surprise

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Crabtree, Benjamin F.

I will focus my comments on uncertainty and surprise in primary care practices. I am a medical anthropologist by training, and have been a full-time researcher in family medicine for close to twenty years. In this talk I want to look at primary care practices as complex systems, particularly taking the perspective of translating evidence into practice. I am going to discuss briefly the challenges we have in primary care, and in medicine in general, of translating new evidence into the everyday care of patients. To do this, I will look at two studies that we have conducted on family practices, then think about how practices can be best characterized as complex adaptive systems. Finally, I will focus on the implications of this portrayal for disseminating new knowledge into practice.

Bereaved Caregivers to Patients With High-Grade Glioma

DEFF Research Database (Denmark)

Piil, Karin; Jarden, Mary

2018-01-01

PURPOSE: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have...... care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations....

A Pilot Trial of a Stress Management Intervention for Primary Caregivers of Children Newly Diagnosed With Cancer: Preliminary Evidence That Perceived Social Support Moderates the Psychosocial Benefit of Intervention

OpenAIRE

Marsland, Anna L.; Long, Kristin A.; Howe, Chelsea; Thompson, Amanda L.; Tersak, Jean; Ewing, Linda J.

2013-01-01

Objectives (1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. Methods 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived str...

Patient Suffering and Caregiver Compassion: New Opportunities for Research, Practice, and Policy

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Schulz, Richard; Hebert, Randy S.; Dew, Mary Amanda; Brown, Stephanie L.; Scheier, Michael F.; Beach, Scott R.; Czaja, Sara J.; Martire, Lynn M.; Coon, David; Langa, Kenneth M.; Gitlin, Laura N.; Stevens, Alan B.; Nichols, Linda

2007-01-01

The purpose of this article is to stimulate discussion and research about patient suffering and caregiver compassion. It is our view that these constructs are central to understanding phenomena such as family caregiving, and that recognizing their unique role in the caregiving experience provides new directions for intervention research, clinical…

Bridging the gap in ageing: Translating policies into practice in Malaysian Primary Care

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Ambigga Krishnapillai S

2011-03-01

Full Text Available Abstract Population ageing is poised to become a major challenge to the health system as Malaysia progresses to becoming a developed nation by 2020. This article aims to review the various ageing policy frameworks available globally; compare aged care policies and health services in Malaysia with Australia; and discuss various issues and challenges in translating these policies into practice in the Malaysian primary care system. Fundamental solutions identified to bridge the gap include restructuring of the health care system, development of comprehensive benefit packages for older people under the national health financing scheme, training of the primary care workforce, effective use of electronic medical records and clinical guidelines; and empowering older people and their caregivers with knowledge, skills and positive attitudes to ageing and self care. Ultimately, family medicine specialists must become the agents for change to lead multidisciplinary teams and work with various agencies to ensure that better coordination, continuity and quality of care are eventually delivered to older patients across time and settings.

Concept Analysis: Alzheimer’s Caregiver Stress

Science.gov (United States)

Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Honor’s, BA; Caserta, Michael

2015-01-01

AIM The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias. BACKGROUND Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. PMID:24787468

Childhood Caregiving Roles, Perceptions of Benefits, and Future Caregiving Intentions among Typically Developing Adult Siblings of Individuals with Autism Spectrum Disorder

Science.gov (United States)

Nuttall, Amy K.; Coberly, Ben; Diesel, Sara J.

2018-01-01

Typically developing siblings (TDS) of individuals with Autism Spectrum Disorder (ASD) frequently serve as caregivers during childhood, known as parentification, and primary caregivers for siblings in adulthood. In order to evaluate mechanisms linking these roles, we surveyed emerging-adult TDS (N = 108) about childhood parentification roles…

Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

NARCIS (Netherlands)

Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

2008-01-01

AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'

Providing care to relatives with mental illness: reactions and distress among primary informal caregivers.

Science.gov (United States)

Chang, Sherilyn; Zhang, Yunjue; Jeyagurunathan, Anitha; Lau, Ying Wen; Sagayadevan, Vathsala; Chong, Siow Ann; Subramaniam, Mythily

2016-03-25

The responsibility of caring for relatives with mental illness often falls on the family members. It has been reported that the reactions to or consequences of providing care are what rendered the role of a caregiver challenging and hence a source of distress. This present study thus aimed to identify socio-demographic correlates of caregiving experiences using the Caregiver Reaction Assessment (CRA) and to examine the associations between reactions to caregiving and psychological distress. A total of 350 caregivers with relatives seeking outpatient care at a tertiary psychiatric hospital were recruited for this study. Distress among caregivers was assessed using the Patient Health Questionnaire (PHQ-9). The CRA was administered to measure reactions from caregiving in four domains including impact on schedule and health (ISH), impact on finance (IF), lack of family support (LFS) and caregiver esteem (CE). Participants also completed a questionnaire that asked for their socio-demographic information. Multivariable linear regression analysis was first used with domains of CRA as outcome variables and socio-demographic variables as predictors in the models. The next set of multivariable linear regression analysis tested for the association between CRA domains and distress with CRA domain scores as outcome variables and PHQ-9 score as predictor, controlling for socio-demographic variables. Socio-demographic correlates of CRA domains identified were age, education, employment, income and ethnicity. Domain scores of CRA were significantly associated with PHQ-9 score even after controlling for socio-demographic variables. A higher distress score was associated with greater impact felt in the domain of ISH (β = 0.080, P social care support in these domains may help to address caregiver distress.

Child-Caregiver Interaction in Two Remote Indigenous Australian Communities

Directory of Open Access Journals (Sweden)

Jill eVaughan

2015-04-01

Full Text Available This paper reports on a study in two remote multilingual Indigenous Australian communities: Yakanarra in the Kimberley region of Western Australia and Tennant Creek in the Barkly region of the Northern Territory. In both communities, processes of language shift are underway from a traditional language (Walmajarri and Warumungu respectively to a local creole variety (Fitzroy Valley Kriol and Wumpurrarni English respectively. The study focuses on language input from primary caregivers to a group of preschool children, and on the children’s productive language. The study further highlights child-caregiver interactions as a site of importance in understanding the broader processes of language shift. We use longitudinal data from two time-points, approximately two years apart, to explore changes in adult input over time and developmental patterns in the children’s speech.At both time points, the local creole varieties are the preferred codes of communication for the dyads in this study, although there is some use of the traditional language in both communities. Results show that for measures of turn length (MLT, there are notable differences between the two communities for both the focus children and their caregivers. In Tennant Creek, children and caregivers use longer turns at Time 2, while in Yakanarra the picture is more variable. The two communities also show differing trends in terms of conversational load (MLT ratio. For measures of morphosyntactic complexity (MLU, children and caregivers in Tennant Creek use more complex utterances at Time 2, while caregivers in Yakanarra show less complexity in their language at that time point. The study’s findings contribute to providing a more detailed picture of the multilingual practices at Yakanarra and Tennant Creek, with implications for understanding broader processes of language shift. They also elucidate how children’s language and linguistic input varies diachronically across time. As

Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties.

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Leggett, Amanda N; Polenick, Courtney A; Maust, Donovan T; Kales, Helen C

2018-03-19

Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being.

The presence of a primary male caregiver affects children's ...

African Journals Online (AJOL)

caregiver has an influence, direct or indirect, on children's language skills. Keywords: ... the presence/absence of a father figure on language development were mainly conducted in ... centres via the classroom teachers or day mothers.

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

Science.gov (United States)

Orfila, Francesc; Coma-Solé, Montserrat; Cabanas, Marta; Cegri-Lombardo, Francisco; Moleras-Serra, Anna; Pujol-Ribera, Enriqueta

2018-01-22

The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). Prevalence of risk of abuse is

Influence of home care services on caregivers' burden and satisfaction.

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Kim, Eun-Young; Yeom, Hyun-E

2016-06-01

To examine the factors affecting the burden and satisfaction of family caregivers, focusing on the beneficial impacts of home care service use. Long-term care for older patients is a multifaceted process that brings both burden and satisfaction to family caregivers. It is expected that home care services offered by the Korean long-term care insurance may contribute to decreasing the burden of family caregivers and enhancing their satisfaction by assisting with practical caregiving tasks. A cross-sectional study. A convenience sample of 157 family caregivers was recruited from five home care service agencies in South Korea. Information about the caregivers, caregiving history, older care recipients and use of home care services was assessed. The effects of home care service use on caregiving burden and satisfaction were tested using hierarchical multiple regression analyses after adjusting for the characteristics of the caregivers, caregiving history and older care recipients. There was no significant influence of home care service use on reducing caregiving burden or on increasing caregivers' satisfaction. Although several factors were associated with caregiving burden and satisfaction, family functioning was the most unique factor to significantly affect both caregiving burden and satisfaction. Home care services might not automatically have a positive impact on caregivers' burden and satisfaction, but maintaining healthy family functioning is an important issue for family caregivers. The findings highlight the important need to reconsider ways to provide home care services and to develop nursing interventions to reinforce supportive family functioning. Practical strategies for providing home care services should be developed through a concrete assessment of the family dynamics and the needs of family caregivers. Health professionals should play a pivotal role in performing the assessment and in developing interventions to strengthen supportive family functioning

Assessment of Facilities and Best Practices in Orphanages in Benin ...

African Journals Online (AJOL)

adedamla

Acquired Immune Deficiency Syndrome (AIDS), disasters (such as ... Journal of Community Medicine and Primary Health Care. 28 (2) 69-76 ... practices, caregiver,. Nigeria, orphanage, orphans, over- crowding, standard. Correspondence to:.

Resilience of family caregivers of elderly with Alzheimer

Directory of Open Access Journals (Sweden)

Carlene Souza Silva Manzini

2016-12-01

Full Text Available Resilience is the capacity that people have to cope positively with adversities. A cross-sectional, quantitative study, that aimed to assess factors associated with the resilience of family caregivers of elderly with Alzheimer’s disease. Sixty-six caregivers composed the sample, who were accompanied in a neurology ambulatory. Most caregivers presented moderate resilience. Linear regression showed that some factors interfered with caregivers’ resilience, being those: overload, the increment of days dedicated to caregiving, the level of kinship daughter-in-law/son-in-law or spouse, and practice of other activities besides caregiving. The findings can be useful in care-related areas, once we identified variables interfering in resilience, and those can be worked and improved to benefit the caregiver and the patient.

Current practice of preconception care by primary caregivers in the Netherlands

NARCIS (Netherlands)

S.F. van Voorst (Sabine); S. Plasschaert (Sophie); L.C. de Jong-Potjer (L.); E.A.P. Steegers (Eric); S. Denktaş (Semiha)

2016-01-01

textabstractObjectives: Over the past decade the value of preconception care (PCC) consultations has been acknowledged. Investments have been made to promote delivery and uptake of PCC consultations in the Dutch primary care setting. We assessed current activities, perceptions and prerequisites for

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

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Toyama, Hiroko; Honda, Akiko

2016-01-01

Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss. PMID:28462354

Family Conflict as a Mediator of Caregiver Strain

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Scharlach, Andrew; Li, Wei; Dalvi, Tapashi B.

2006-01-01

The present study used structural equation modeling to examine the potential mediating effect of family conflict on caregiver strain in a randomly drawn household sample of 650 adults with primary care responsibility for an adult age 50 or older with a mental disability. Caregiver strain was directly influenced by the conflict, disagreements, and…

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

OpenAIRE

Christian J. Hendriksz MD; Christine Lavery; Mahmut Coker MD; Sema Kalkan Ucar MD; Mohit Jain PhD; Lisa Bell PhD; Christina Lampe MD

2014-01-01

This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with fami...

Grooming and cultural socialization: a mixed method study of caregiving practices in Burma (Myanmar) and the United States.

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Thein-Lemelson, Seinenu M

2015-02-01

Grooming behaviours are thought to be a crucial aspect of parenting and integral to the sociality of non-human mammals, but there have been few empirical studies on how grooming might be relevant to parenting and socialization processes in humans. Study 1 is a quantitative cross-cultural comparison of grooming practices in two cultural settings: an urban centre in Burma (Myanmar) and an urban centre in the United States. The study uses naturalistic video data of 57 families to analyse grooming behaviours directed at children. A broad range of ages was sampled in each culture to examine the developmental trajectory of grooming behaviours. Results indicate that significant cultural differences exist between Burma and the United States, with Burmese children being groomed by their caregivers more often than U.S. children. Results also indicate that cultural differences in grooming practices begin early and remain constant across age. An unexpected finding was that Burmese families were more variable in their behaviour than U.S. families. Study 2 attempts to explain this variability by using ethnography to describe how sociodemographic changes in Burma are leading to changes in parental values and socialization practices in the schools, but how embodied primary care in the homes appear resistant to change. © 2014 The Authors. International Journal of Psychology published by John Wiley & Sons Ltd on behalf of International Union of Psychological Science.

Christianity and Resilience as Experienced by Caregivers of Dementia Patients

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Lackey, Steven L.

2014-01-01

The purpose of this study was to examine the role and relationship of the practice of Christian beliefs and resilience in the context of dementia patient caregivers' lives. The guiding question was "What is the relational nature of the practice of Christian beliefs and resilience in the lived experiences of caregivers of dementia…

Emotional hyperreactivity in response to childhood abuse by primary caregivers in patients with borderline personality disorder.

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Lobbestael, Jill; Arntz, Arnoud

2015-09-01

One of the core postulated features of borderline personality disorder (BPD) is extreme emotional reactivity to a wide array of evocative stimuli. Findings from previous experimental research however are mixed, and some theories suggest specificity of hyper emotional responses, as being related to abuse, rejection and abandonment only. The current experiment examines the specificity of emotional hyperreactivity in BPD. The impact of four film clips (BPD-specific: childhood abuse by primary caregivers; BPD-nonspecific: peer bullying; positive; and neutral) on self-reported emotional affect was assessed in three female groups; BPD-patients (n = 24), cluster C personality disorder patients (n = 17) and non-patient controls (n = 23). Results showed that compared to the neutral film clip, BPD-patients reacted with more overall negative affect following the childhood abuse clip, and with more anger following the peer bullying clip than the two other groups. The current study was restricted to assessment of the impact of evocative stimuli on self-reported emotions, and the order in which the film clips were presented to the participants was fixed. Results suggest that BPD-patients only react generally excessively emotional to stimuli related to childhood abuse by primary caregivers, and with excessive anger to peer-bullying stimuli. These findings are thus not in line with the core idea of general emotional hyperreactvity in BPD. Copyright © 2015 Elsevier Ltd. All rights reserved.

First aid practices, beliefs, and sources of information among caregivers regarding paediatric burn injuries in Harare, Zimbabwe: A cross-sectional study.

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Chirongoma, Farai; Chengetanai, Samson; Tadyanemhandu, Cathrine

2017-06-01

While burns take seconds to occur, injuries incurred result in pain and undesirable long term effects that might take a lifetime to overcome. The study was carried out to determine the measures of first aid delivered by caregivers after a burn injury and sources of the information. A cross- sectional study was carried out over a period of 3 months at two central hospitals in Harare. A questionnaire was administered to the caregivers of children within the age group of 0-60 months admitted in burns wards to elicit information on the circumstances of the burn injury and the first aid methods which were administered. Out of the 50 children who were recruited, 54.0% were females and the mean age was 29.5 months (SD= 15.5). After the burn injury 30(60.0%) of the caregivers, cooled the burn injury with cold running water whilst some caregivers also applied eggs, margarine and some traditional herbs as first aid. The other practices reported by the caregivers included use of urine and crushed cockroaches after burn injury in 40 (80.0%) whilst 20 (40.0%) reported used aloe vera gel after a burn injury. About half of the caregivers got first aid information mainly from family members and very few indicated that the information was obtained from mass media, 3 (6.0%). The first aid measures used by the majority of caregivers were either incomplete or inadequate. Although some caregivers had adequate knowledge of what to do after an injury, there still was widespread use of alternatives therapies in burn management.

Caregiver psychoeducation for first-episode psychosis.

LENUS (Irish Health Repository)

McWilliams, Stephen

2010-01-01

International best-practice guidelines for the management of first-episode psychosis have recommended the provision of psychoeducation for multifamily groups. While there is ample evidence of their efficacy in multiepisode psychosis, there is a paucity of evidence supporting this approach specifically for first-episode psychosis. We sought to determine whether a six-week caregiver psychoeducation programme geared specifically at first-episode psychosis improves caregiver knowledge and attitudes.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

OpenAIRE

Phillips, Sara S.; Ragas, Daiva M.; Hajjar, Nadia; Tom, Laura S.; Dong, XinQi; Simon, Melissa A.

2016-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55...

Personhood-Based Dementia Care: Using the Familial Caregiver as a Bridging Model for Professional Caregivers

Directory of Open Access Journals (Sweden)

Michael Gabriel Fetterolf

2015-05-01

Full Text Available With biomedicine at the forefront of our culture's understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer's disease in nursing homes or long-term care facilities that do not always regard the sufferers' well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer's sufferer. Furthermore, through the modeling of professional caregiving strategies, I show how one might form meaningful relationships in long-term care facilities, and likewise provide the aging and afflicted person with forms of healing.

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

Science.gov (United States)

White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

2018-01-01

community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

The influence of culture on the experiences of Korean, Korean American, and Caucasian-American family caregivers of frail older adults: a literature review.

Science.gov (United States)

Kong, Eun-Hi

2007-03-01

The purpose of this review is to explore cultural influences on the experiences of Korean, Korean American, and Caucasian American family caregivers caring for frail older adults in terms of the selection of a primary caregiver, caregiving motivation, support/help-seeking, and negative emotional responses(depression and burden). Seven electronic databases were searched to retrieve studies from 1966 to 2005. Thirty-two studies were identified. This review supported cultural influences on the selection of primary caregiver, caregiving motivation, and support/help-seeking among the three caregiver groups. In Korean caregivers, the major primary caregivers were daughters-in-law while among Korean American and Caucasian American caregivers, the major primary caregivers were daughters or spouses. As a major caregiving motivation, Caucasian American caregivers reported filial affection while Korean caregivers and Korean American caregivers reported filial obligation. Korean caregivers reported higher extended family support, while Caucasian American caregivers reported higher utilization of formal support. Korean caregivers showed the highest levels of depression followed by Korean American caregivers and Caucasian American caregivers. In order to develop culturally appropriate interventions and policies, more research is needed to further explain these differences among the three groups, especially regarding support/help-seeking and negative emotional responses.

An Exploratory Study Examining Risk Communication among Adolescent Children, Their Incarcerated Mothers, and Their Caregivers.

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Robillard, Alyssa G; Holliday, Rhonda C; DeHart, Dana D; Lewis, Kaleea; Rutherford, Yamisha; Amutah, Ndidi N

2016-01-01

Adolescent children of incarcerated mothers (ACIM) are typically left in the care of adults (primary caregivers) who play a crucial role in children's care and guidance, as well as in the facilitation of contact and communication with incarcerated mothers. The purpose of this study was to explore the nature of relationships and communication among adolescent children of incarcerated mothers, primary caregivers, and incarcerated mothers using pilot data. Semi-structured individual interviews were conducted with youth aged 12-17 (n=7) and caregivers (n=6) recruited through a non-profit organization working with incarcerated mothers and their children. Incarcerated mothers and primary caregivers represent an important family unit for ACIMs and may play a role in preventing risk behavior. A conceptual framework is offered for further consideration of mother and caregiver communication with youth and youth risk.

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults With Down Syndrome

OpenAIRE

Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30–53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure activities, with low participation in physical and mentally stimulating leisure activities. Residence and time spent with primary caregiver were assoc...

Attitudes, beliefs, and perceptions of caregivers and rehabilitation providers about disabled children's sleep health: a qualitative study.

Science.gov (United States)

Chen, Xiaoli; Gelaye, Bizu; Velez, Juan Carlos; Pepper, Micah; Gorman, Sara; Barbosa, Clarita; Zafonte, Ross D; Redline, Susan; Williams, Michelle A

2014-10-01

Children with disabilities are more likely to have sleep disturbances than children without disabilities. Identifying attitudes, beliefs, knowledge, and perceptions of caregivers and health professionals is essential in developing effective intervention programs to improve disabled children's sleep health. However, no such qualitative data about adults who have key roles in the life and daytime activities of children with disabilities are available. This qualitative study aimed to understand attitudes, beliefs, knowledge, and perceptions about disabled children's sleep hygiene among caregivers and rehabilitation providers of children with disabilities. Twenty seven adults, including nine primary caregivers and eighteen rehabilitation providers, participated in five focus group discussions between September and December 2012 at the Rehabilitation Center in Punta Arenas, Chile. A trained facilitator guided focus group discussions using a semi-structured script. Audiotapes and transcripts of focus group discussions were reviewed and analyzed for recurrent themes. Participants identified seven themes related to children's sleep hygiene: lifestyle behaviors, family factors, children's disabilities and/or comorbidities, environmental factors, adults' responsibilities for children's sleep, perception of good sleep, and parental distress about children's sleep problems. While both caregivers and rehabilitation providers recognized the importance of sleep for children's health and functioning, they differed in their understanding of how sleep hygiene practices influence sleep. Rehabilitation providers recognized the negative influence of electronics on sleep and the positive influence of sleep routines. In contrast, caregivers reported use of television/movie watching and stimulants as coping strategies for managing children's sleep problems. Caregivers may benefit from better understanding the influence of electronics and stimulant use on child sleep health. Rehabilitation

A Review of Ethnicity, Culture, and Acculturation Among Asian Caregivers of Older Adults (2000-2012

Directory of Open Access Journals (Sweden)

Christina E. Miyawaki

2015-02-01

Full Text Available This review identified domains of care experiences among studies of Chinese, Filipino, Japanese, Korean, and Vietnamese caregivers in the United States and Canada between 2000 and 2012. Using a narrative approach, 46 peer-reviewed journal articles were found through electronic databases and references. Considering caregivers’ assimilation to host countries, attention was given to their culture, socioeconomic resources, immigrant status, filial responsibility, generation, and acculturation. Three primary domains were identified across subgroups. The caregivers’ experiences domain was a strong sense of filial responsibility and its varied effects on caregiving experience; in the cultural values domain, reciprocity, and familism. In the acculturation domain, caregivers’ generations influenced their experiences. Because our society is rapidly changing demographically and culturally, studies of older adults and their caregivers that are not only inclusive of all racial/ethnic groups but also sensitive to specific racial/ethnic and cultural subgroup differences are necessary to inform policy and practice.

Substantial changes in mastery perceptions of dementia caregivers with the placement of a care recipient.

Science.gov (United States)

Infurna, Frank J; Gerstorf, Denis; Zarit, Steven H

2013-03-01

The current study examined how a key component of caregiving stress processes, global mastery perceptions, changes with placing the care recipient in a nursing home or institution. We also explored the role of primary stressors in accounting for mastery changes with placement and whether characteristics of the caregiver and care recipient moderate reactions to placement. We applied multiphase growth curve models to prospective longitudinal data from 271 caregivers in the Caregiver Stress and Coping Study who experienced placement of their care recipient. Using a time-to/from-placement metric, we found that caregivers typically experienced declines in mastery preceding placement, followed by a significant increase within 1 year after placement and further increases thereafter. Corresponding changes in primary stressors (role overload) mediated the placement-related increase in mastery. Caregivers who reported more depressive symptoms and activities of daily living/instrumental activities of daily living dependencies of the care recipient were more likely to experience larger placement-related increases in mastery perceptions. Our findings suggest that placement alters psychological resources of caregivers and this effect is driven by corresponding changes in primary stressors. Findings also underscore the importance of examining change processes across salient life events and transitions.

Associations Between Orphan and Vulnerable Child Caregiving, Household Wealth Disparities, and Women's Overweight Status in Three Southern African Countries Participating in Demographic Health Surveys.

Science.gov (United States)

Kanamori, Mariano J; Carter-Pokras, Olivia D; Madhavan, Sangeetha; Lee, Sunmin; He, Xin; Feldman, Robert H

2015-08-01

This study examines whether orphan and vulnerable children (OVC) primary caregivers are facing absolute household wealth (AWI) disparities, the association between AWI and women's overweight status, and the modifying role of OVC primary caregiving status on this relationship. Demographic Health Surveys data (2006-2007) from 20 to 49 year old women in Namibia (n = 6,305), Swaziland (n = 2,786), and Zambia (n = 4,389) were analyzed using weighted marginal means and logistic regressions. OVC primary caregivers in Namibia and Swaziland had a lower mean AWI than other women in the same country. In Zambia, OVC primary caregivers had a lower mean AWI score than non-primary caregivers living with an OVC but a higher mean AWI score than non-OVC primary caregivers. In Swaziland and Zambia, even small increases in household wealth were associated with higher odds for being overweight regardless of women's caregiving status. Only in Namibia, OVC primary caregiving modified the effect of the previous association. Among Namibian OVC primary caregivers, women who had at least medium household wealth (4 or more AWI items) were more likely to be overweight than their poorest counterparts (0 or 1 AWI items). OVC primary caregivers are facing household wealth disparities as compared to other women from their communities. Future studies/interventions should consider using population-based approaches to reach women from every household wealth level to curb overweight in Swaziland and Zambia and to focus on specific household wealth characteristics that are associated with OVC primary caregivers' overweight status in Namibia.

Family Typology and Appraisal of Preschoolers' Behavior by Female Caregivers.

Science.gov (United States)

Coke, Sallie P; Moore, Leslie C

2015-01-01

Children with vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic, and therefore, research examining the accuracy of the caregivers' perceptions of children's behaviors is needed. The purpose of this study was to use the resiliency model of family stress, adjustment, and adaptation as the theoretical foundation to explore family factors associated with the primary female caregiver's appraisal of her child's behavior, the extent to which the primary female caregiver's appraisal of her child's behavior may be distorted, and the child's level of risk of having a behavioral problem. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers (N = 117). Family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children's behaviors, and distortion in the ratings were measured. Associations were studied using ANOVA, ANCOVA, and chi-squared tests. Family typology was not associated with the female caregiver's appraisals of her child's behavior (p = .31). Distortion of the caregiver's rating of her child's behavior was not associated with family hardiness (high or low; p = .20.) but was associated with having a child with an elevated risk for behavioral problems (p < .01). Families classified as vulnerable were significantly more likely to have a child with elevated risks of having behavioral problems than families classified as secure or regenerative. Findings emphasized the association between family factors (hardiness and coherence) and young children's behaviors. Additional research is needed into how these factors affect the young child's behavior and what causes a caregiver to have a distorted view of her child's behavior.

Child-caregiver interaction in two remote Indigenous Australian communities

Science.gov (United States)

Vaughan, Jill; Wigglesworth, Gillian; Loakes, Deborah; Disbray, Samantha; Moses, Karin

2015-01-01

This paper reports on a study in two remote multilingual Indigenous Australian communities: Yakanarra in the Kimberley region of Western Australia and Tennant Creek in the Barkly region of the Northern Territory. In both communities, processes of language shift are underway from a traditional language (Walmajarri and Warumungu, respectively) to a local creole variety (Fitzroy Valley Kriol and Wumpurrarni English, respectively). The study focuses on language input from primary caregivers to a group of preschool children, and on the children's productive language. The study further highlights child-caregiver interactions as a site of importance in understanding the broader processes of language shift. We use longitudinal data from two time-points, approximately 2 years apart, to explore changes in adult input over time and developmental patterns in the children's speech. At both time points, the local creole varieties are the preferred codes of communication for the dyads in this study, although there is some use of the traditional language in both communities. Results show that for measures of turn length (MLT), there are notable differences between the two communities for both the focus children and their caregivers. In Tennant Creek, children and caregivers use longer turns at Time 2, while in Yakanarra the picture is more variable. The two communities also show differing trends in terms of conversational load (MLT ratio). For measures of morphosyntactic complexity (MLU), children and caregivers in Tennant Creek use more complex utterances at Time 2, while caregivers in Yakanarra show less complexity in their language at that time point. The study's findings contribute to providing a more detailed picture of the multilingual practices at Yakanarra and Tennant Creek, with implications for understanding broader processes of language shift. They also elucidate how children's language and linguistic input varies diachronically across time. As such, we contribute to

Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: an initiative of medical social workers.

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Chan, Wallace Chi Ho; Chan, Christopher L F; Suen, Margaret

2013-11-01

Family caregivers may often experience caregiving stress and burden. To systematically assess this issue, medical social workers may need to use a brief and valid measurement in their practice. In the Hong Kong Chinese context, one additional challenge is to examine whether a measurement developed in the West is valid for Hong Kong Chinese caregivers. Thus, medical social workers in Hong Kong initiated this research study to validate the Chinese version of the Modified Caregiver Strain Index (C-M-CSI). A total of 223 Chinese caregivers of patients with various chronic illnesses were recruited for this validation study. C-M-CSI demonstrated good reliability (Cronbach's alpha coefficient = .91), concurrent validity with the Chinese version of the Caregiver Burden Inventory, and discriminant validity with the Chinese version of the Meaning in Life Questionnaire. Factor analysis yielded a single factor as the original M-CSI, which explained 49 percent of variance. Construct validity was shown by differentiating spousal and nonspousal caregivers, as well as caregivers of patients with and without behavioral problems. C-M-CSI is recommended as a brief and valid measurement that can be used by medical social workers in assessing the caregiving strain of Chinese caregivers of patients in Hong Kong.

Implementation of a Psychoeducational Program for Cancer Survivors and Family Caregivers at a Cancer Support Community Affiliate: A Pilot Effectiveness Study.

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Dockham, Bonnie; Schafenacker, Ann; Yoon, Hyojin; Ronis, David L; Kershaw, Trace; Titler, Marita; Northouse, Laurel

2016-01-01

Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them. This study examined the effectiveness of the FOCUS Program on cancer survivors' and their family caregivers' outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction. A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads' homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance. Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high. It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity. Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.

More caregiving, less working: caregiving roles and gender difference.

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Lee, Yeonjung; Tang, Fengyan

2015-06-01

This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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Christian J. Hendriksz MD

2014-07-01

Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

Intestinal Helminths in caregivers working in Orphanages in Benin ...

African Journals Online (AJOL)

Health knowledge and health care practices of caregivers are important determinants of quality of care of any child. These caregivers in closed institutions such as the orphanages could be a sourceof environmental contamination and transmission of diseases including intestinal helminthic infections.This study was carried ...

The relationship between family obligation and religiosity on caregiving.

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Epps, Fayron

2014-01-01

The purpose of this study was to examine the relationship between family obligation and religiosity on the positive appraisal of caregiving among African-American, Hispanic and non-Hispanic Caucasian family caregivers of older adults. Roy's adaptation model guided formulation of the aims and study design. A cross-sectional, correlational study design was employed to examine the relationship amongst variables for the family caregiver participants. Study participants (N = 69) completed a demographic tool and four instruments the: (1) Katz index, (2) obligation scale, (3) Duke University religion index, and (4) positive appraisal of care scale. There was a significant correlation between family obligation and positive appraisal of caregiving. However, there was no relationship between the family caregiver's religiosity and positive appraisal of caregiving overall. Demographic variables were also examined to show a higher marginal mean for Hispanic primary caregivers in relation to the positive appraisal of caregiving. Future studies should consider replicating these findings in a larger sample to provide health care professionals with substantial evidence to incorporate culturally sensitive interventions aimed at promoting positive outcomes and healthy family behaviors. Copyright © 2014 Mosby, Inc. All rights reserved.

Reinventing your primary care practice: becoming an MDCEO™

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Conard SE

2013-03-01

Full Text Available Scott E Conard,1 Maureen Reni Courtney21ACAP Health, Dallas, 2College of Nursing, University of Texas, Arlington, TX, USAAbstract: Primary care medicine in the United States is undergoing a revolutionary shift. Primary care providers and their staff have an extraordinary chance to create and participate in exciting new approaches to care. New strategies will require courage, flexibility, and openness to change by every member of the practice team, especially the lead clinician who is most often the physician, but can also be the nurse practitioner or physician's assistant. Providers must first recognize their need to alter their fundamental identity to incorporate a new kind of leadership role—that of the MDCEO™ (i.e., the individual clinician who leads the practice to ensure that quality, service, and financial systems are developed and effectively managed. This paper provides a practical vision and rationale for the required transition in primary care, pointing the way for how to achieve new practice effectiveness through new leadership roles. It also provides a model to evaluate the status of a primary care practice. The authors have extensive experience in working with primary care providers to radically evolve their clinical practices to become MDCEOs™. The MDCEO™ will articulate the vision and strategy for the practice, define and foster the practice culture, and create and facilitate team development and overall high level functioning. Each member of the team can then begin to lead their part of the practice: a 21st century population-oriented, purpose-based practice resulting in increased quality of care, improved patient outcomes, greater financial success, and enhanced peace of mind.Keywords: primary health care organization and administration, health care reform, leadership, patient-centered care

Caregiver and expecting caregiver support for early peanut introduction guidelines.

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Greenhawt, Matthew; Chan, Edmond S; Fleischer, David M; Hicks, Allison; Wilson, Rachel; Shaker, Marcus; Venter, Carina; Stukus, David

2018-03-07

Recent guidelines recommend early peanut introduction (EPI) beginning around 4 to 6 months of age in infants with severe eczema and/or egg allergy and around 6 months for all other infants. Caregiver preferences for such practices are unknown. We explored preferences for EPI and in-office allergy risk assessment (IRA) through a nationally representative survey of expecting (n = 1,000) and new caregivers of infants younger than 1 year (n = 1,000). Among a primarily female (99.7%), married (80.3%), and white (74.4%) sample, 29% had no or vague awareness of the new guidelines, 61% had no or minimal concern for their child developing food allergy, but 54% felt timing of food introduction has moderate to strong importance for developing food allergy. Only 31% expressed willingness for EPI before or around 6 months of age, with 40% reporting willingness to introduce peanut after 11 months of age, similar to tree nuts and seafood. However, 60% reported willingness to introduce egg before 8 months of age. A total of 51% and 56.8% were unwilling to allow IRA methods, such as skin testing and oral challenge, before 11 months of age, respectively. Odds of willingness to delay peanut introduction (odds ratio, 0.79; 95% confidence interval, 0.65-0.96) and undergo challenge (odds ratio, 0.67; 95% confidence interval, 0.54-0.82) after 6 months of age were lower among expecting caregivers. Among new and expecting caregivers, there is poor current willingness and questionable support for early allergenic solid food recommendations, including IRA before introduction. Willingness was better among expecting vs current caregivers. These trends underscore a need for broader formal implementation planning to facilitate early allergen introduction and maximize its preventive benefits. Copyright © 2018 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

Colorectal cancer patients' preferences for type of caregiver during survivorship care

NARCIS (Netherlands)

Wieldraaijer, T.; Duineveld, L. A. M.; Donkervoort, S. C.; Busschers, W. B.; van Weert, H. C. P. M.; Wind, J.

2018-01-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

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Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

2014-09-01

Pancreatic cancer presents a wide spectrum of significant symptomatology. The high symptom burden, coupled with a rapidly fatal diagnosis, limits preparation or time for adjustment for both patients and their family caregivers. From the initial diagnosis and throughout the illness experience, the physical and emotional demands of caregiving can predispose caregivers themselves to illness and a greater risk of mortality. Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role. To provide feasibility data for a larger, mixed methods, longitudinal study focused on the experience of family caregivers of patients with advanced pancreatic cancer and preliminary qualitative data to substantiate the significance of studying this caregiver population. This was a mixed methods study guided by the Stress Process Model. Eight family caregivers of patients with advanced pancreatic cancer from oncology practices of a university-affiliated medical center were surveyed. The pilot results supported the ability to recruit and retain participants and informed recruitment and data collection procedures. The qualitative results provided preliminary insights into caregiver experiences during the diagnosis and treatment phases. Key findings that substantiated the significance of studying these caregivers included the caregiving context of the history of sentinel symptoms, the crisis of diagnosis, the violation of assumptions about life and health, recognition of the circle of association, and contextual factors, as well as primary and secondary stressors, coping strategies, resources, discoveries, gains and growth, associated changes/transitions, and unmet caregiver needs. Findings indicated caregivers' willingness to participate in research, highlighted the negative and positive aspects of the caregiver experience, and reinforced the

Conceptual challenges in the study of caregiver-care recipient relationships.

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Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth

2008-01-01

In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Caregivers' practices, knowledge and beliefs of antibiotics in paediatric upper respiratorytract infections in Trinidad and Tobago: a cross-sectional study

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Pereira Lexley

2004-12-01

Full Text Available Abstract Background Antibiotic overuse and misuse for upper respiratory tract infections in children is widespread and fuelled by public attitudes and expectations. This study assessed knowledge, beliefs, and practices regarding antibiotic use for these paediatric infections among children's caregivers' in Trinidad and Tobago in the English speaking Caribbean. Methods In a cross-sectional observational study, by random survey children's adult caregivers gave a telephone interview from November 1998 to January 1999. On a pilot-tested evaluation instrument, respondents provided information about their knowledge and beliefs of antibiotics, and their use of these agents to treat recent episodes ( Results Of the 417 caregivers, 70% were female and between 18–40 years, 77% were educated to high school and beyond and 43% lived in urban areas. Two hundred and forty nine (60% respondents scored high (≥ 12 on antibiotic knowledge and 149 (34% had used antibiotics in the preceding year. More caregivers with a high knowledge score had private health insurance (33%, (p Conclusions In Trinidad and Tobago, caregivers scoring low on antibiotic knowledge have erroneous beliefs and use antibiotics inappropriately. Children in their care receive antibiotics for upper respiratory tract infections without visiting a health clinic or a physician. Educational interventions in the community on the consequences of inappropriate antibiotic use in children are recommended. Our findings emphasise the need to address information, training, legislation and education at all levels of the drug delivery system towards discouraging self-medication with antibiotics in children.

Sex disparities in access to caregiving in Parkinson disease.

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Dahodwala, Nabila; Shah, Krunal; He, Ying; Wu, Samuel S; Schmidt, Peter; Cubillos, Fernando; Willis, Allison W

2018-01-02

To compare access to caregiving between men and women with Parkinson disease (PD). This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver. A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders. Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed. Copyright © 2017 American Academy of Neurology.

The Art of Sharing the Diagnosis and Management of Alzheimer's Disease With Patients and Caregivers: Recommendations of an Expert Consensus Panel

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Christensen, Daniel D.; Griffith, Patrick A.; Kerwin, Diana R.; Hunt, Gail; Hall, Eric J.

2010-01-01

Objective: To develop a set of recommendations for primary care physicians (PCPs) suggesting how best to communicate with patients, caregivers, and other family members regarding the diagnosis and management of Alzheimer's disease (AD). Participants: A national roundtable of 6 leading professionals involved in treating or advocating for patients with AD was convened on March 14, 2008. This roundtable included 4 leading academic physicians with diverse backgrounds (a geriatric psychiatrist, a neuropsychiatrist, a neurologist, and a geriatrician) from geographically diverse regions of the United States, who were invited on the basis of their national reputation in the field and experience working with minority populations with dementia; the executive director of a national AD advocacy organization; the executive director of a national advocacy organization for caregivers; and a medical correspondent with expertise in interviewing and small group leadership. Evidence: Expert opinion supported by academic literature (search limited to PubMed, English language, 1996–2008, search terms: Alzheimer's disease, primary care, diagnosis, management, caregiver, family, patient-physician relationship). Consensus Process: Moderated dialogue aimed at generating consensus opinion; only statements endorsed by all authors were included in the final article. Conclusions: Diagnosis and management of AD by PCPs, utilizing specialist consultation as needed, may contribute to earlier diagnosis and treatment, improved doctor-patient and doctor-caregiver communication, increased attention to caregiver needs, and better clinical and quality-of-life outcomes for patients and caregivers. A set of expert panel recommendations describing practical strategies for achieving these goals was successfully developed. PMID:20582302

Structural equation and log-linear modeling: a comparison of methods in the analysis of a study on caregivers' health

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Rosenbaum Peter L

2006-10-01

Full Text Available Abstract Background In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. Methods The data were collected from a cross-sectional population-based sample of 468 families in Ontario, Canada who had a child with cerebral palsy (CP. The self-completed questionnaires and the home-based interviews used in this study included scales reflecting socio-economic status, child and caregiver characteristics, and the physical and psychological well-being of the caregivers. Both analytic models were used to evaluate the relationships between child behaviour, caregiving demands, coping factors, and the well-being of primary caregivers of children with CP. Results The results were compared, together with an assessment of the positive and negative aspects of each approach, including their practical and conceptual implications. Conclusion No important differences were found in the substantive conclusions of the two analyses. The broad confirmation of the Structural Equation Modeling (SEM results by the Log-linear Modeling (LLM provided some reassurance that the SEM had been adequately specified, and that it broadly fitted the data.

Assessment of Health-Related Quality of Life among Primary Caregivers of Children with Autism Spectrum Disorders

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Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Patrick, Julie H.; Tworek, Cindy; Becker-Cottrill, Barbara

2011-01-01

The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had…

Private prayer among Alzheimer's caregivers: mediating burden and resiliency.

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Wilks, Scott E; Vonk, M Elizabeth

2008-01-01

This study examined whether the coping method of private prayer served as a protective factor of resiliency among a sample (N = 304) of Alzheimer's caregivers. Participants in caregiver support groups completed questionnaires that assessed a number of constructs, including caregiving burden; prayer frequency; use of private prayer as a means of coping; and perceived resiliency. The sample averaged a moderate level of burden and a great extent of prayer usage. Caregiving burden had positively affected the extent of prayer usage and negatively influenced perceived resiliency. Findings from hierarchical regression analysis showed that caregiving burden and private prayer significantly influenced variation in perceived resiliency scores. Results from a regression equation series and path analysis provided support for prayer as a mediator between burden and perceived resiliency. Implications for social work practice and education are discussed.

Perspectives and Practice of HIV Disclosure to Children and Adolescents by Healthcare Providers and Caregivers in Sub-Saharan Africa: A Systematic Review

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Oluyemisi Aderomilehin

2016-08-01

Full Text Available Background: Sub-Saharan Africa has the highest prevalence of HIV globally, and this is due to persistent new HIV infections and decline in HIV/AIDS-related mortality from improved access to antiretroviral therapy. There is a limited body of work on perspectives of healthcare providers concerning disclosing outcomes of HIV investigations to children and adolescents in Sub-Saharan Africa. Most studies are country-specific, indicating a need for a regional scope. Objective: To review the current literature on the perspectives of healthcare providers and caregivers of children and adolescents on age group-specific and culture-sensitive HIV disclosure practice. Methods: Electronic database search in PubMed, Google scholar and the University of South Florida (USF Library Discovery Tool (January 2006 up to February 2016. Further internet search was conducted using the Journal Author Name Estimator (JANE search engine and extracting bibliographies of relevant articles. Search terms included ‘disclosure*’, ‘HIV guidelines’, ‘Sub-Saharan Africa’, ‘clinical staff’, ‘ART’, ‘antiretroviral adherence’, ‘People living with HIV’, ‘pediatric HIV’, ‘HIV’, ‘AIDS’, ‘healthcare provider’ (HCP, ‘caregiver’, ‘adolescent’, ‘primary care physicians’, ‘nurses’, ‘patients’. Only studies related to HIV/AIDS disclosure, healthcare providers, caregivers that clearly described perspectives and interactions during disclosure of HIV/AIDS sero-status to affected children and adolescents were included. Independent extraction of articles was conducted by reviewers using predefined criteria. Nineteen articles met inclusion criteria. Most studies were convenience samples consisting of combinations of children, adolescents, HCPs and caregivers. Key findings were categorized into disclosure types, prevalence, facilitators, timing, process, persons best to disclose, disclosure setting, barriers and outcomes of disclosure

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

Science.gov (United States)

Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

2017-07-01

Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

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Ratkowski, Kristy L; Washington, Karla T; Craig, Kevin W; Albright, David L

2015-11-01

A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike. © The Author(s) 2014.

Distributed Practice and Retrieval Practice in Primary School Vocabulary Learning

NARCIS (Netherlands)

N.A.M.C. Goossens (Nicole)

2015-01-01

markdownabstractThe aim of this thesis was to investigate whether particular memory strategies stemming from cognitive and educational psychology, enhance primary school vocabulary learning. Th e memory strategies investigated in this thesis were distributed practice and retrieval practice. Th e

Economic expenditures associated with instrumental caregiving roles of adult siblings of persons with severe mental illness.

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Lohrer, Steven P; Lukens, Ellen P; Thorning, Helle

2007-04-01

Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

Science.gov (United States)

Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

2012-04-01

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

Assessment of facilities and best practices in orphanages in Benin ...

African Journals Online (AJOL)

Journal of Community Medicine and Primary Health Care ... nutritional status, housing and security, the availability of potable water, playground/ playing materials and the adequacy of child-caregivers ratio was used to obtain information about the orphanages and the findings were compared with the standard practices.

Caring for seniors living with dementia means caring for their caregivers too.

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Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc

2018-01-22

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

Natural Helpers: A Study of Primary Caregivers among Migrant Women.

Science.gov (United States)

Greenfield, Wilma L.

Natural helpers exist even among the most oppressed populations in this country, particularly migrant women, and recognition of their helping networks can give professional caregivers access to a resource that is often more adaptive, more efficient, and more humane than many static, impersonal, and obsolete human service bureaucracies. Migrant…

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

Science.gov (United States)

Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Cross-cultural adaptation of the Caregiver Reaction Assessment for use in Brazil with informal caregivers of the elderly

Directory of Open Access Journals (Sweden)

Fernanda Rochelly do Nascimento Mota

2015-06-01

Full Text Available This study aimed to carry out the cross-cultural adaptation of the Caregiver Reaction Assessment CRA for use in Brazil with informal caregivers of dependent elderly METHOD A methodological study, of five steps: initial translation, synthesis of translations, retro-translation, evaluation by a judge committee and a pre-test, with 30 informal caregivers of older persons in Fortaleza, Brazil. Content validity was assessed by five experts in gerontology and geriatrics. The cross-cultural adaptation was rigorously conducted, allowing for inferring credibility. RESULTS The Brazilian version of the CRA had a simple and fast application (ten minutes, easily understood by the target audience. It is semantically, idiomatically, experimentally and conceptually equivalent to the original version, with valid content to assess the burden of informal caregivers for the elderly (Content Validity Index = 0.883. CONCLUSION It is necessary that other psychometric properties of validity and reliability are tested before using in care practice and research.

Extra-Required Service: A Radical Shift in Frontline Geriatric Caregiving

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Clarke, Egerton

2011-01-01

Much research examines the professional nursing practices of traditional and modern caregivers, but it remains unclear whether the delivery of extra-required services is diminished as the caregiver moves from traditional to modern community. Building on the classical works of sociologists Ferdinand Tonnies, Max Weber, and Emile Durkheim, this…

Developing a cultural model of caregiving obligations for elderly Chinese wives.

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Holroyd, Eleanor

2005-06-01

This article addresses the dilemmas of elderly Chinese women as spousal caregivers in Hong Kong in the 1990s. An in-depth ethnographic approach was used to draw on a convenience sample of 20 elderly wives who were caregivers from Hong Kong. At the conceptual level, the discussion highlights how caregiving is rooted in complex, culturally-based models of contemporary practices, sociohistoric patterns, and gender-specific obligations. The key themes identified were marital duty-bound roles and responsibilities, reciprocity and burden, public guidelines and upholding reputations as Chinese wives, monetary restrictions, affection as an emotional force to sustain caregiving, effects of the caregiving role, and the creation of self-identity through caregiving. The model proposed for interpreting elderly Chinese wives' caregiving obligations highlights the tension-filled links between Confucianism and government guidelines, early and ongoing socializing experiences, and self-identity.

Child's autism severity: effect on West Virginia caregiver satisfaction with school services.

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Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child's autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR's from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child's autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child's Individualized Education Program(IEP) and evaluation of caregiver satisfaction with the IEP.

Sociodemographic Variation of Caries Risk Factors in Toddlers and Caregivers

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G. J. Eckert

2010-01-01

Full Text Available Objectives. Dental caries is the most common chronic childhood disease, with numerous identified risk factors. Risk factor differences could indicate the need to target caregiver/patient education/preventive care intervention strategies based on population and/or individual characteristics. The purpose of this study was to evaluate caries risk factors differences by race/ethnicity, income, and education. Methods. We enrolled 396 caregiver-toddler pairs and administered a 105-item questionnaire addressing demographics, access to care, oral bacteria transmission, caregiver's/toddler's dental and medical health practices, caregiver's dental beliefs, and caregiver's/toddler's snacking/drinking habits. Logistic regressions and ANOVAs were used to evaluate the associations of questionnaire responses with caregiver's race/ethnicity, income, and education. Results. Caregivers self-identified as Non-Hispanic African-American (44%, Non-Hispanic White (36%, Hispanic (19%, and “other” (1%. Differences related to race/ethnicity, income, and education were found in all risk factor categories. Conclusions. Planning of caregiver/patient education/preventive care intervention strategies should be undertaken with these caries risk factor differences kept in mind.

The Prince Henry Hospital dementia caregivers' training programme.

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Brodaty, H; Gresham, M; Luscombe, G

1997-02-01

To describe the theory, elements and practice of a successful caregiver training programme; and report the 8-year outcome. Prospective, randomized control trial and longitudinal follow-up over approximately 8 years. Psychiatry unit, general teaching hospital, Sydney, Australia. 96 persons less than 80 years old with mild to moderate dementia and their cohabiting caregivers. All patients received a 10-day structured memory retraining and activity programme. Caregivers in the immediate and wait-list caregiver training groups received a structured, residential, intensive 10-day training programme, boosted by follow-ups and telephone conferences over 12 months. Those in the wait-list group entered the programme after waiting 6 months. The third group of caregivers received 10 days' respite (while patients underwent their memory retraining programme) and 12 months booster sessions as for the other groups. Nursing home admission; time until patient death. 64% of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of memory retraining patients had died. Nursing home admission had occurred in 79% of the immediate training, 83% of the delayed and 90% of the memory retraining group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (p = 0.037) and tended to live longer (p = 0.08). Caregiver training programmes demonstrably can delay institutionalization of people with dementia.

The psychological impact of child sexual abuse on primary caregivers

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Symptoms of psychological distress experienced by caregivers after an incident of CSA included anxiety, fear, depression, anger, insomnia, and functional impairment. About half the care givers in the study (n= 19, 55.88%) showed support and protection for their children; others (n = 15, 44.12%) were hostile toward and ...

Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease.

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Melchiorre, Maria Gabriella; Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Lattanzio, Fabrizia; Chiatti, Carlos

2017-01-01

Introduction . Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives . To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods . The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results . The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions . The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.

Caregivers' experiences of interaction with families expecting a fetally impaired child.

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Maijala, Hanna; Paavilainen, Eija; Väisänen, Leena; Astedt-Kurki, Päivi

2004-03-01

On the basis of earlier research, caregivers' actions when interacting with clients should be developed. However, nursing research has focused little attention on the interaction between caregivers and families expecting a fetally impaired child. The study aimed at generating a practical family nursing theory of caregivers' interaction with families expecting a malformed child. A grounded theory study was undertaken at Tampere University Hospital in Finland in 1999-2000. Data consisted of semi-structured interviews with 22 (n=22) nurses and doctors. The data were analysed using the constant comparative method. The interaction process starts when a caregiver informs the parents of the fetal impairment. The process is influenced by caregivers' attitude towards issues related to the family's life situation. Caregivers' views of their job, and of human coping and cultural attitudes towards these issues are also of importance. These factors account for their goals in the interaction, which, in turn, underlie their actions. When the caregiver's interpretation is that the family accepted the help provided, the outcome of the interaction is satisfaction with having been able to help. Correspondingly, in the case of an opposite interpretation, the caregiver experiences strain caused by inadequacy of the help he/she is providing. The core of interaction consists of two dimensions: gaining strength and losing strength in relation to impairment issues. Caregivers' views of helpful interaction were consistent with earlier research on the subject, but the findings of this study showed that more attention should be focused on the family as a whole. Furthermore, caregivers rarely criticized their own actions, thus their interaction skills should be upgraded by focusing on systematic self-assessment through training. Nursing research deepening our understanding of why interaction fails is warranted. The study results can be used in the family nursing practice as tools in

Feeding styles of caregivers of children 6-23 months of age in Derashe special district, Southern Ethiopia

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Wondafrash Mekitie

2012-03-01

Full Text Available Abstract Background Apart from basic determinants, appropriate child care practices are important in prevention of growth faltering and undernutrition. Providing safe and appropriate quality complementary foods is crucial to child growth and development. However, some children in low-income communities grow normally mainly due to proper caregiver feeding behaviors. Hence, the objective of this study was to determine caregivers' feeding styles as well as to indentify predictors in Derashe special district, Southern Ethiopia. Methods A community based cross-sectional study design was employed in the seven randomly selected Kebeles (smallest administrative unit of Derashe special district. A total of 826 caregivers provided data pertaining to socio-demographic variables. However, 764 caregivers had complete data for the outcome variable (caregiver feeding style. A multistage stratified sampling technique was used to identify study subjects. An adapted Caregiver's Feeding Styles Questionnaire (CFSQ was used to gather information about caregivers' feeding styles. Multivariate multinomial logistic regression was employed to identify predictors of caregivers' feeding style. Results The majority (80.6% of caregivers were biological mothers. Nearly seventy-six percent of the caregivers practiced a responsive feeding style. Caregivers other than the biological mother favoured a laissez-faire feeding style, while caregivers residing in rural Kebeles were more responsive. Caregivers with a breastfeeding frequency of more than eight times predicted both laissez-faire (RRR = 1.88; 95% CI = 1.03-3.41 and controlling (RRR = 1.7; 95% CI = 1.02-2.85 feeding styles as compared to responsive feeding. Conclusion Responsive feeding was the commonest style practiced by the caregivers. Many of the caregivers who were rural residents and birth parents have been responsive in child feeding. The instruments needed to be validated in the Ethiopian context and an additional

Feeding styles of caregivers of children 6-23 months of age in Derashe special district, Southern Ethiopia.

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Wondafrash, Mekitie; Amsalu, Tseganeh; Woldie, Mirkuzie

2012-03-23

Apart from basic determinants, appropriate child care practices are important in prevention of growth faltering and undernutrition. Providing safe and appropriate quality complementary foods is crucial to child growth and development. However, some children in low-income communities grow normally mainly due to proper caregiver feeding behaviors. Hence, the objective of this study was to determine caregivers' feeding styles as well as to indentify predictors in Derashe special district, Southern Ethiopia. A community based cross-sectional study design was employed in the seven randomly selected Kebeles (smallest administrative unit) of Derashe special district. A total of 826 caregivers provided data pertaining to socio-demographic variables. However, 764 caregivers had complete data for the outcome variable (caregiver feeding style). A multistage stratified sampling technique was used to identify study subjects. An adapted Caregiver's Feeding Styles Questionnaire (CFSQ) was used to gather information about caregivers' feeding styles. Multivariate multinomial logistic regression was employed to identify predictors of caregivers' feeding style. The majority (80.6%) of caregivers were biological mothers. Nearly seventy-six percent of the caregivers practiced a responsive feeding style. Caregivers other than the biological mother favoured a laissez-faire feeding style, while caregivers residing in rural Kebeles were more responsive. Caregivers with a breastfeeding frequency of more than eight times predicted both laissez-faire (RRR = 1.88; 95% CI = 1.03-3.41) and controlling (RRR = 1.7; 95% CI = 1.02-2.85) feeding styles as compared to responsive feeding. Responsive feeding was the commonest style practiced by the caregivers. Many of the caregivers who were rural residents and birth parents have been responsive in child feeding. The instruments needed to be validated in the Ethiopian context and an additional prospective study based on direct observation of caregiver

CAREGIVER BURDEN AMONG PEOPLE CARING FOR PATIENTS WITH SCHIZOPHRENIA

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Shivani Bansal

2017-04-01

Full Text Available BACKGROUND Caregivers of patients suffering from mental illness report burden in different areas including effects on family functioning, psychological problems, financial problems and health. The aim of the study is to determine the sociodemographic profile and caregiver burden among caregivers of persons with schizophrenia and to study the effect of patients’ psychopathology on caregiver burden scale. MATERIALS AND METHODS The present study was conducted in the Psychiatry Department, Government Medical College, Amritsar. A sample size of 34 was taken who were primary caregivers (preferably parents or spouse of schizophrenia patients diagnosed using ICD10. Measures included caregiver’s demographic variables and caregiver’s burden using the Zarit burden interview and PANSS scale in patients. Statistical Analysis- Data was analysed using SPSS software version 21. RESULTS The mean age of the caregiver was 42 SD (12.16 years. The majority of the caregivers were parents, married and employed. The mean average score of the responses to Zarit burden interview was (SD=59.52 ± 20.92. Majority of the caregivers experienced severe burden (52.9%, 9 (26.4% caregivers had reported moderate burden and 6 (17.6% had reported mild burden. The mean duration of illness was 6.89 (SD=5.03 years. The level of burden experienced was significantly associated with total PANSS score, negative symptoms, positive symptoms, general psychopathology score and duration of schizophrenia illness (p=0.00. CONCLUSION There is need for psychological assistance and social support for the vulnerable caregivers to help them reduce the burden levels and employ positive coping strategies.

Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

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Sorrell, Jeanne M

2014-03-01

Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

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Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

2018-05-21

This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

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Tornatore, Jane B; Grant, Leslie A

2004-03-01

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

Measuring comfort in caregivers and patients during late end-of-life care.

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Novak, B; Kolcaba, K; Steiner, R; Dowd, T

2001-01-01

The purpose of this study was to test several formats of end-of-life comfort instruments for patients and closely involved caregivers. Kolcaba's Comfort Theory was the theoretical framework utilized. Different response formats for two end-of-life (EOL) comfort questionnaires (for patients and caregivers, respectively), and horizontal and vertical visual analog scales for total comfort (TC) lines were compared in two phases. Evaluable data were collected from both members of 38 patient-caregiver dyads in each phase. Suitable dyads were recruited from two hospice agencies in northeastern Ohio. Cronbach's alpha for the EOL comfort questionnaire (six response Likert-type format) tested during phase I for patients was .98 and for caregivers was .97. Test-retest reliability for the vertical TC line tested during phase I for patients was .64 and for caregivers was .79. The implications of this study for nursing practice and research are derived from the American Nursing Association (ANA) position statement about EOL care, which states that comfort is the goal of nursing for this population. These instruments will be useful for assessing comfort in actively dying patients and comfort of their caregivers as well as for developing evidence-based practice for this population.

Emotional Labour of Caregivers Confronted With Aggressive Brain-injured Patients.

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Huet, Magali; Dany, Lionel; Apostolidis, Thémistoklis

2018-06-01

Aggressive behaviours are common with people who have suffered brain injuries and induce difficult emotions among certified nursing assistants and medical-psychological assistants who take care of them. These caregivers carry out emotional labour whose content and strategies are little known. The study explores the emotional labour of certified nursing assistants and medical-psychological assistants faced with the aggressive behaviours of brain-injured patients. Semi-structured interviews were conducted with 37 caregivers. Interviews were analysed via a thematic content analysis. The analysis shows that the emotional labour of caregivers varies in accordance with the state of "consciousness" or "non-consciousness" that they attribute to the brain-injured patient with regard to this aggressive behaviour. This is a deep acting strategy. Moreover, caregivers shut off their emotions in order not to transmit them to the patient. This surface acting has the first objective for the caregiver of maintaining control of the situation and a second objective of protecting the patient emotionally and therefore of being perceived as a "good" caregiver. Emotional labour also meets a need to preserve the professional self-image and professional status negatively affected in the interaction with the aggressive brain-injured patient. Our study specifies the different strategies of the emotional labour of caregivers and their circumstances of use when they are confronted with aggressive behaviour by brain-injured patients. Targeted support for this emotional labour, such as training and practical analysis, is essential for the development of care practices promoting a caring relationship. Copyright © 2017 Elsevier Inc. All rights reserved.

Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment.

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Biru, Mulatu; Lunqvist, Pia; Molla, Mitikie; Jerene, Degu; Hallström, Inger

2017-12-08

Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers' lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers' lived experience was shown in two main themes comprising "lifelong medication gives hope for the future" and "support challenged by the fear of stigma." The family caregivers experienced hope and dreams for the future as they saw their child as healthy and they had regained normality in life after the child's diagnosis. The caregivers still feared the disclosure of the child's diagnosis, which gave rise to conflicts with the child, the family, and society. Good quality support from the healthcare staff lightened their burdens. Further studies are recommended on the strategies of stigma reduction and developing need-specific modalities to support caregivers in the community.

Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.

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Hsiao, Chiu-Yueh

2010-12-01

The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.

Non-pharmacological interventions for caregivers of stroke survivors.

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Legg, Lynn A; Quinn, Terry J; Mahmood, Fahd; Weir, Christopher J; Tierney, Jayne; Stott, David J; Smith, Lorraine N; Langhorne, Peter

2011-10-05

A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs).  To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). We searched the Cochrane Stroke Group Trials Register (March 2011), CENTRAL (The Cochrane Library Issue 2010, Issue 4), MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) and 11 additional databases. In an effort to identify further published, unpublished and ongoing studies, we searched conference proceedings and trials registers, scanned reference lists of relevant articles and contacted authors and researchers. There were no language restrictions. We included RCTs if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. We included trials of interventions delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. We excluded studies which included stroke survivors and caregivers if the stroke survivors were the primary target of the intervention. Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. We sought original data from trialists. We categorised interventions into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. We resolved

Justifications for caregiving in white, Asian American, and native Hawaiian grandparents raising grandchildren.

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Yancura, Loriena A

2013-01-01

Race has been found to predict justifications for caregiving in family caregivers for older adults. However, little is known about this relationship in another type of family caregiver, Grandparents Raising Grandchildren (GRG). This study examined relationships between race and justifications for caregiving in Asian American, Native Hawaiian, and White GRG. A sample of 259 GRG registered as students' primary caregivers with a public school system completed a modified version of the 10-item Cultural Justifications for Caregiving (CJCG) scale. CJCG items did not load onto a single analytic factor. Two factors, custom and responsibility, emerged. Race was predictive of custom, with Native Hawaiian GRG having significantly higher scores than White or Asian American GRG. Native Hawaiian GRG also scored higher than Asian American, but not White, GRG on responsibility. Justifications for raising grandchildren appear to differ among groups based on racial identification. Findings elucidate cultural justification for caregiving in understudied GRG populations and suggest that justifications for caregiving are configured differently in GRG and family caregivers for older adults. Future studies should examine justifications for caregiving in GRG of other races.

Caregiving and early infant crying in a danish community.

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Alvarez, Marissa

2004-04-01

Maternal caregiving and fussing/crying in Danish infants at 3, 6, and 12 weeks were examined using self-report scales and 24-hour behavior diaries. Mothers reported practices commonly associated with responsive caregiving: frequent feeding, prompt response to infant cries, and considerable time holding the infant. Fuss/cry durations peaked in the first 2 months, were highest in evenings, and decreased approximately 50% by 12 weeks. Fussing was the majority behavior, and 9.2% of the infants fussed and cried more than 3 hours per day. In contrast with other Western studies, 24-hour fuss/cry durations were lower, and fussing accounted for up to 80% of total distress. Danish caregiving practices may partially explain the lower durations of infant distress and the lower ratio of cry to fuss. However, some infants fuss/cry a great deal despite sensitive care, which may reflect individual differences in infant maturation of behavior regulation.

Healthcare-seeking behaviour of primary caregivers for acute otitis media in children aged 6 months to Panama: results of a cross-sectional survey.

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Villarreal, Iris; Turner, Rosario; Jo, Hyejin; Park, Julie; Gemmen, Eric; Pirçon, Jean-Yves; Castrejon, Maria M; Hausdorff, William P

2017-01-05

Acute otitis media (AOM) is the most common bacterial childhood infection. However, caregivers with children having mild episodes often do not seek healthcare services, which may lead to an under-appreciation of the disease experienced by the community. The objectives of this survey were to estimate the proportion of primary caregivers who went to a healthcare facility when they suspected that their child aged 6 to Panama (March to May 2013). A 28-item paper questionnaire was administered to assess demographic data, AOM symptoms, as well as potential healthcare-seeking behaviour and factors influencing this behaviour. Potential confounding effects were individually assessed using Chi-squared or Cochran-Mantel-Haenszel tests, and all together in logistic regression models. The total number of eligible participants was 1330 (mean age 28.5 ± 8.0 years). Of these, 245 participants had at least one child whom they suspected had an AOM episode during the past 6 months. Of the 245 participants, 213 (86.9%) sought healthcare at a facility. Several factors were associated with healthcare usage: perceived severity of illness (p = 0.001), occupational status of the caregiver (p = 0.002), household income (p = 0.016) and length of time since the last suspected AOM episode (p = 0.032). When confronted with a child with obvious symptoms of AOM, the majority of caregivers reported seeking healthcare. This behaviour appeared to be associated with factors related to the severity of the illness, the length of time since the last episode, as well as with the income and occupational status of the caregivers themselves. As many episodes of AOM present with non-specific respiratory symptoms, our results apply only to caregivers who were confronted with children with an obvious symptom.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers].

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Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura

2016-12-01

To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. Primary, secondary and intermediate care. Osona (Barcelona). The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Health-related quality of life in caregivers of patients with Alzheimer's disease.

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Garzón-Maldonado, F J; Gutiérrez-Bedmar, M; García-Casares, N; Pérez-Errázquin, F; Gallardo-Tur, A; Martínez-Valle Torres, M D

2017-10-01

Informal caregivers of patients with Alzheimer's disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. Ninety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients' clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. At 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for 'physical function' and 'social function'. Baseline scores in our sample were lower than those of the general population. 'Vitality' is the dimension that presented the lowest scores. HRQOL in caregivers of patients with Alzheimer's disease deteriorates over time and is poorer than that of the age- and sex-matched general population. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

"We both just trusted and leaned on the Lord": a qualitative study of religiousness and spirituality among African American breast cancer survivors and their caregivers.

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Sterba, Katherine Regan; Burris, Jessica L; Heiney, Sue P; Ruppel, Megan Baker; Ford, Marvella E; Zapka, Jane

2014-09-01

Most breast cancer (BC) survivorship research focuses on the general population of survivors. Scant research investigates the potentially unique experiences of minorities, especially during and after the difficult transition from primary treatment to post-treatment. This qualitative study explored African American BC survivors' and caregivers' quality-of-life in the post-treatment period with a focus on social and spiritual well-being. Participants included a convenience sample of African American women with stage I-III BC (N = 23) who completed treatment 6-24 months before enrollment. Primary caregivers (N = 22) included friends, spouses and other family members (21 complete dyads). Participants completed separate semi-structured telephone interviews. Template analysis was used to evaluate themes related to religiousness and spirituality, both across and within dyads. After treatment, religiousness and spirituality played a major role in both survivors' and caregivers' lives by: (1) providing global guidance, (2) guiding illness management efforts and (3) facilitating recovery. Participants described a spiritual connectedness with God and others in their social networks. Dyad members shared the goal of keeping a positive attitude and described positive growth from cancer. Few future concerns were expressed due to the belief that survivors were healed and "done" with cancer. Beyond practical and emotional support, provision of spiritual assistance was common. Results highlight the principal, positive role of religiousness and spirituality for African American BC survivors and caregivers after treatment. Findings emphasize the need to assess the importance of religious and spiritual beliefs and practices, and if appropriate, to provide resources that promote spiritual well-being.

Caregiver Depression

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... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

Caregiving burden and its determinants in Polish caregivers of stroke survivors.

Science.gov (United States)

Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

2014-10-27

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure.

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Wingham, Jennifer; Frost, Julia; Britten, Nicky

2017-07-20

Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. 1. To identify the factors that contribute to the experience of anguish.2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes-emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health-that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

LGBT Caregiver Concerns

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LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...

Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

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Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

2009-01-01

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer’s Disease

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Maria Gabriella Melchiorre

2017-01-01

Full Text Available Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer’s disease (AD and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman’s correlation coefficients, principal-component analysis, and Cronbach’s alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach’s alpha = 0.86. CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.

Extended child and caregiver benefits of behavior-based child contingency learning games.

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Dunst, Carl J; Raab, Melinda; Trivette, Carol M; Wilson, Linda L; Hamby, Deborah W; Parkey, Cindy

2010-08-01

Findings from 2 studies of the relationship between response-contingent child behavior and child, caregiver-child, and caregiver behavior not directly associated with child contingency learning are described. The participants were 19 children with significant developmental delays and their mothers in 1 study and 22 children with significant developmental delays and their teachers in the second study. Caregivers engaged the children in learning games characterized by behavior-based contingencies for 15 weeks. Research staff observed the children and their caregivers in everyday routines and activities and rated child and caregiver behavior while the children and caregivers were not playing the games. Results from both studies showed that the degree of response-contingent responding during the games was related to child and caregiver behavior, not the focus of the contingency learning opportunities afforded the children. Implications for practice are described.

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis

OpenAIRE

Williams, Allison M.; Tompa, Emile; Lero, Donna S.; Fast, Janet; Yazdani, Amin; Zeytinoglu, Isik U.

2017-01-01

Background Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (econom...

Primary care practice organization influences colorectal cancer screening performance.

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Yano, Elizabeth M; Soban, Lynn M; Parkerton, Patricia H; Etzioni, David A

2007-06-01

To identify primary care practice characteristics associated with colorectal cancer (CRC) screening performance, controlling for patient-level factors. Primary care director survey (1999-2000) of 155 VA primary care clinics linked with 38,818 eligible patients' sociodemographics, utilization, and CRC screening experience using centralized administrative and chart-review data (2001). Practices were characterized by degrees of centralization (e.g., authority over operations, staffing, outside-practice influence); resources (e.g., sufficiency of nonphysician staffing, space, clinical support arrangements); and complexity (e.g., facility size, academic status, managed care penetration), adjusting for patient-level covariates and contextual factors. Chart-based evidence of CRC screening through direct colonoscopy, sigmoidoscopy, or consecutive fecal occult blood tests, eliminating cases with documented histories of CRC, polyps, or inflammatory bowel disease. After adjusting for sociodemographic characteristics and health care utilization, patients were significantly more likely to be screened for CRC if their primary care practices had greater autonomy over the internal structure of care delivery (pmanagement and referral procedures are associated with significantly lower CRC screening performance. Competition with hospital resource demands may impinge on the degree of internal organization of their affiliated primary care practices.

Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.

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Camic, Paul M; Baker, Erin L; Tischler, Victoria

2016-12-01

Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caregiving for Dementia in Asian Communities: Implications for Practice

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Wang, Donna S.

2012-01-01

Dementia can be debilitating not only for the older adult suffering from memory loss and confusion, but for family members as well. Understanding caregiving for ethnic minorities is critical. In Asian communities, addressing dementia and other mental health issues can be compounded by cultural factors such as perceptions of mental health and…

Family medical leave as a resilience resource for family caregivers.

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Swanke, Jayme; Zeman, Laura Dreuth

2009-01-01

Case managers mobilize family networks to care for patients. Family medical leave can be a resource for case managers who seek to enhance resilience among family caregivers. The Family Medical Leave Act, passed in 1993, was the first U.S. policy to regulate employee leaves from work for family care purposes (29 CFR 825.102). This policy offers family caregivers increased flexibility and equality. Current and emerging policies also can reduce financial strain. The discussion examines how case managers can integrate family medical leave into best-practice models to support patients and family caregivers.

Information-seeking at a caregiving website: a qualitative analysis.

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Kernisan, Leslie P; Sudore, Rebecca L; Knight, Sara J

2010-07-28

The Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of "e-caregivers" and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents. The objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging. From March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?" and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes. Of the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included "health information," "practical caregiving," and "support." Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to

Stress and depression in informal caregivers of patients with bipolar affective disorder

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Ximena Palacios-Espinosa

2009-10-01

Full Text Available This study aims to establish the stress and depression´s prevalence in informal primary caregivers of patients with bipolar affective disorder of the Clínica de Nuestra Señora de la Paz (Bogotá, Colombia. The sample consisted of 40 informal primary caregivers who were tested by several tools: a survey filter, a sociodemographic record, the Beck Depression Inventory (BDI and the Daily Stress Questionnaire. Results indicate that there is much more presence of depression than of daily stress in the sample.

The Relationship Between Caregiving and Mortality After Accounting for Time-Varying Caregiver Status and Addressing the Healthy Caregiver Hypothesis.

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Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M

2015-09-01

Previous studies have shown inconsistent associations between caregiving and mortality. This may be due to analyzing caregiver status at baseline only, and that better health is probably related to taking on caregiving responsibilities and continuing in that role. The latter is termed The Healthy Caregiver Hypothesis, similar to the Healthy Worker Effect in occupational epidemiology. We applied common approaches from occupational epidemiology to evaluate the association between caregiving and mortality, including treating caregiving as time-varying and lagging exposure up to 5 years. Caregiving status among 1,068 women (baseline mean age = 81.0 years; 35% caregivers) participating in the Caregiver-Study of Osteoporotic Fractures study was assessed at five interviews conducted between 1999 and 2009. Mortality was determined through January 2012. Cox proportional hazards models were used to estimate adjusted hazard ratios and 95% confidence intervals adjusted for sociodemographics, perceived stress, and functional limitations. A total of 483 participants died during follow-up (38.8% and 48.7% of baseline caregivers and noncaregivers, respectively). Using baseline caregiving status, the association with mortality was 0.77, 0.62-0.95. Models of time-varying caregiving status showed a more pronounced reduction in mortality in current caregivers (hazard ratios = 0.54, 0.38-0.75), which diminished with longer lag periods (3-year lag hazard ratio = 0.68, 0.52-0.88, 5-year lag hazard ratios = 0.76, 0.60-0.95). Overall, caregivers had lower mortality rates than noncaregivers in all analyses. These associations were sensitive to the lagged period, indicating that the timing of leaving caregiving does influence this relationship and should be considered in future investigations. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The mediating effect of caregiver burden on the caregivers' quality of life.

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Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

Nursing home care educational intervention for family caregivers of older adults post stroke (SHARE): study protocol for a randomised trial.

Science.gov (United States)

Day, Carolina Baltar; Bierhals, Carla Cristiane Becker Kottwitz; Santos, Naiana Oliveira Dos; Mocellin, Duane; Predebon, Mariane Lurdes; Dal Pizzol, Fernanda Laís Fengler; Paskulin, Lisiane Manganelli Girardi

2018-02-09

Family caregivers of aged stroke survivors face challenging difficulties such as the lack of support and the knowledge and skills to practice home care. These aspects negatively influence the caregivers' burden and quality of life, the use of health services, and hospital readmissions of the stroke survivor. The aim of this research is to describe an educational intervention focused on family caregivers of stroke survivors for the development of home care in the south of Brazil. A randomized clinical trial with 48 family caregivers of stroke survivors will be recruited and divided into two groups: 24 in the intervention group and 24 in the control group. The intervention will consist of the systematic follow-up by nurses who will perform three home visits over a period of 1 month. The control group will not receive the visits and will have the usual care guidelines of the health services. Primary outcomes: burden and quality of life of the caregiver. functional capacity and readmissions of the stroke survivors; the use of health services of the stroke survivors and their family caregivers. Outcomes will be measured 2 months after discharge. The project was approved in April 2016. This research offers information for conducting educational intervention with family caregivers of stroke survivors, presenting knowledge so that nurses can structure and plan the actions aimed at the education of the family caregiver. It is expected that the educational intervention will contribute to reducing caregiver burden and improving their quality of life, as well as avoiding readmissions and inadequate use of health services by stroke survivors. ClinicalTrials.gov, ID: NCT02807012 . Registered on 3 June 2016. Name: Nursing Home Care Intervention Post Stroke (SHARE).

The Kusamala Program for primary caregivers of children 6-59 months of age hospitalized with severe acute malnutrition in Malawi: study protocol for a cluster-randomized controlled trial

NARCIS (Netherlands)

Daniel, Allison I.; van den Heuvel, Meta; Voskuijl, Wieger P.; Gladstone, Melissa; Bwanali, Mike; Potani, Isabel; Bourdon, Celine; Njirammadzi, Jenala; Bandsma, Robert H. J.

2017-01-01

Background: Severe acute malnutrition (SAM) is associated with high mortality rates and impairments in growth and development in children that do survive. There are complex nutritional, health, and behavioural risk factors involving severely malnourished children and their primary caregivers,

Predictors of caregiving satisfaction in informal caregivers of people with dementia

DEFF Research Database (Denmark)

de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana

2015-01-01

Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...

Exploring youth and caregiver preferences for asthma education video content.

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Geryk, Lorie L; Arrindell, Courtney C; Sage, Adam J; Blalock, Susan J; Reuland, Daniel S; Coyne-Beasley, Tamera; Lee, Charles; Sleath, Betsy L; Carpenter, Delesha M

2016-01-01

This study examines (1) whether youth and their caregivers have different preferences for asthma education video topics and (2) if education topic preferences vary by youth and caregiver sociodemographic characteristics. Youth (n = 83) ages 7-17 years with persistent asthma and their caregivers were recruited at two pediatric practices in North Carolina. Sociodemographic information and youth and caregiver preferences for nine asthma video education topics were collected during in-person interviews. Bonferroni-corrected Chi-square or McNemar tests (α = 0.0056) were used to compare youth and caregivers differences in topic preferences and topic preferences by youth and caregiver sociodemographic characteristics, including gender, race, ethnicity, and age. Youth were primarily male (52%) and from low-income families (74%; caregiver annual income less than $30,000) and many were Hispanic (45%). Youth and parents expressed the most interest in the following two topics: "how to deal with triggers" (90% and 95%, respectively) and "how to keep asthma under control" (87% and 96%, respectively). Caregivers and children were discordant for two topics: "the difference between a rescue and controller medicine" and "how to [help your child] talk to your [his/her] friends about asthma." No differences were found between youth and caregiver sociodemographic characteristics and video topic preferences. Youth with persistent asthma and their caregivers differed in their asthma education topic preferences, but preferences did not vary by caregiver or youth sociodemographic characteristics. Studies examining the effectiveness of interventions tailored to differences in educational preferences of youth with asthma and their caregivers are needed.

Emotional and social perception of main caregiver in a rural health district

Directory of Open Access Journals (Sweden)

Fabiola Yonte Huete

2012-03-01

Full Text Available Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. Results: The age of dependent patient immobilized is rising particulary in women, with mental deterioration and dementia as principal diseases. The most of main caregivers are women, married women and daughters of dependent patient immobilized patients, with primary studies, in the middle age. They work almost the complete day in patient care, having less than two hour for themselves. The lack of money is the principal need felt it. The most of caregivers suffer mild to moderate stress and higher anxiety levels than general population, especially in females. Caregiver perceived quality of life is lower than general population too. Conclusions: To know the profile of dependent patient immobilized patient´s caregiver and the factors perceived burden caregiver´s, it is important developing interventions and plans to improve their quality of life related to health in order to reduce the syndrome of main caregiver.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

Science.gov (United States)

Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

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Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

2017-12-01

To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

Gender Differences in Caregiving at End of Life: Implications for Hospice Teams.

Science.gov (United States)

Washington, Karla T; Pike, Kenneth C; Demiris, George; Parker Oliver, Debra; Albright, David L; Lewis, Alexandria M

2015-12-01

Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.

Traumatic brain injury: unmet support needs of caregivers and families in Florida.

Directory of Open Access Journals (Sweden)

Christina Dillahunt-Aspillaga

Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

Pediatric acute gastroenteritis: understanding caregivers' experiences and information needs.

Science.gov (United States)

Albrecht, Lauren; Hartling, Lisa; Scott, Shannon D

2017-05-01

Pediatric acute gastroenteritis (AGE) is a common condition with high health care utilization, persistent practice variation, and substantial family burden. An initial approach to resolve these issues is to understand the patient/caregiver experience of this illness. The objective of this study was to describe caregivers' experiences of pediatric AGE and identify their information needs, preferences, and priorities. A qualitative, descriptive study was conducted. Caregivers of a child with AGE were recruited for this study in the pediatric emergency department (ED) at a tertiary hospital in a major urban centre. Individual interviews were conducted (n=15), and a thematic analysis of interview transcripts was completed using a hybrid inductive/deductive approach. Five major themes were identified and described: 1) caregiver management strategies; 2) reasons for going to the ED; 3) treatment and management of AGE in the ED; 4) caregivers' information needs; and 5) additional factors influencing caregivers' experiences and decision-making. A number of subthemes within each major theme were identified and described. This qualitative descriptive study has identified caregiver information needs, preferences, and priorities regarding pediatric AGE. This study also identified inconsistencies in the treatment and management of pediatric AGE at home and in the ED that influence health care utilization and patient outcomes related to pediatric AGE.

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

Science.gov (United States)

Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Interventions for supporting informal caregivers of patients in the terminal phase of a disease.

Science.gov (United States)

Candy, Bridget; Jones, Louise; Drake, Robyn; Leurent, Baptiste; King, Michael

2011-06-15

Patients in the terminal phase of a disease may have complex needs. It is often family and friends who play a central role in providing support, despite health professional input and regardless of whether the patient is at home or elsewhere. Such informal caring may involve considerable physical, psychological, and economic stresses. A range of supportive programmes for caregivers is being developed including psychological support and practical assistance. To assess the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness. We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 2 2010); MEDLINE (1950 to May 2010); EMBASE (1980 to May 2010); PsycINFO (1872 to May 2010); CINAHL (1937 to May 2010); National Health Service Research Register (2000 to November 2008) and Dissertation Abstracts (1716 to May 2010). We searched the reference lists of relevant studies; contacted experts; and handsearched journals. Randomised controlled trials (RCTs) of interventions to support adults who were caring for a friend or relative with a disease in the terminal phase. Interventions could include practical and emotional support and/or the facilitation of coping skills. Interventions could support caregivers indirectly via patient care. Two authors independently screened citations against the selection criteria. Data were extracted by one author and checked by another. This included extraction of any adverse effects. Risk of bias assessment was undertaken by two authors. We contacted trial authors to obtain missing information. Trial data were combined, where appropriate, on the review's primary outcomes. We included eleven RCTs involving 1836 caregiver participants. Nine interventions were delivered directly to the caregiver. Seven of these provided support in the caring role, another involved a family life review, and one

Caregiver Confidence: Does It Predict Changes in Disability among Elderly Home Care Recipients?

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Li, Lydia W.; McLaughlin, Sara J.

2012-01-01

Purpose of the study: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional…

Assessment of Depression in Dementia Patients: Association of Caregiver Mood with Depression Ratings.

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Teri, Linda; Truax, Paula

1994-01-01

Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…

Validation of a model of family caregiver communication types and related caregiver outcomes.

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Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Directory of Open Access Journals (Sweden)

Karina Javalkar

2017-05-01

Full Text Available Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5, with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047, a diagnosis of attention-deficit/hyperactivity disorder (ADHD in addition to the primary medical condition (β = 0.216, p = 0.008, frequent visits with a primary care provider (PCP (β = 0.209, p = 0.026 and emergency room (ER visits (β = 0.197, p = 0.038, and lower child self-efficacy (β = −0.241, p = 0.041 were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

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Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

2016-09-23

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

Orphan/vulnerable child caregiving moderates the association between women's autonomy and their BMI in three African countries.

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Kanamori, Mariano; Carter-Pokras, Olivia; Madhavan, Sangeetha; Feldman, Robert; He, Xin; Lee, Sunmin

2014-01-01

Enhancement of women's autonomy is a key factor for improving women's health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers' nutrition is fundamental. We investigated the association between married women's autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used the data from Demographic Health Surveys collected during 2006-2007 from 20- to 49-year-old women in Namibia (n = 2633), Swaziland (n = 1395), and Zambia (n = 2920). Analyses included logistic regression, Sobel, and Goodman tests. Our results indicated that women's educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers' BMI in Zambia (Z = 2.13, p value = 0.03). We concluded that depending on each country's contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia education has an effect on women's overweight status only among women who are caring for a child.

Health care seeking practices of caregivers of children under 5 with diarrhea in two informal settlements in Nairobi, Kenya.

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Mukiira, Carol; Ibisomi, Latifat

2015-06-01

In Kenya, as in other developing countries, diarrhea is among the leading causes of child mortality. Despite being easy to prevent and treat, care seeking for major child illnesses including diarrhea remains poor in the country. Mortality due to diarrhea is even worse in informal settlements that are characterized by poor sanitary conditions and largely unregulated health care system among other issues. The study aims to examine the health care seeking practices of caregivers of children under 5 with diarrhea in two informal settlements in Nairobi, Kenya. The article used data from a maternal and child health (MCH) prospective study conducted between 2006 and 2010. Results show that more than half (55%) of the caregivers sought inappropriate health care in the treatment of diarrhea of their child. Of the 55%, about 35% sought no care at all. Use of oral rehydration solution and zinc supplements, which are widely recommended for management of diarrhea, was very low. The critical predictors of health care seeking identified in the study are duration of illness, informal settlement of residence, and the child's age. The study showed that appropriate health care seeking practices for childhood diarrhea remain a great challenge among the urban poor in Kenya. © The Author(s) 2013.

Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver Syndrome in Taiwan.

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Weng, Hsin-Ju; Niu, Dau-Ming; Turale, Sue; Tsao, Lee-Ing; Shih, Fu-Jong; Yamamoto-Mitani, Noriko; Chang, Chun-Chi; Shih, Fu-Jin

2012-01-01

To extend nursing knowledge of distress experienced by family caregivers of children with rare genetic disorders, by exploring the perspectives of caregivers of children with Russell-Silver Syndrome in Taiwan. Caring for a child with a rare genetic disorder often has profound effects on families, especially when diagnosis and treatment is complex or not yet well developed, such as that in Russell-Silver Syndrome (or Silver-Russell syndrome). This disorder causes dwarfism and developmental difficulties, requiring long-term care planning. Previous research has focused mostly on medical care, but little is known about families' perspectives of caring difficulties, the help they need and nursing care required. An exploratory qualitative approach was used to inform this study. Family caregivers, whose children were undergoing medical care in a leading Taiwan medical centre, were invited to participate in face-to-face, in-depth interviews. Data were analysed by content analysis. Fifteen caregivers including 11 mothers, two fathers and two grandmothers participated. Five major themes and 13 sub-themes of care-giving distress were identified: endless psychological worries; the lengthy process to confirm a medical diagnosis; adjustment efforts in modifying family roles; dilemmas in deciding between Western or Chinese traditional medicine; and negative responses to society's concerns. Their primary sources of support were spouses, parents and health professionals, accordingly. Complex physio-psycho-social and decision-making distress in caring for children with a rare genetic disorder were systematically revealed from the perspectives of ethnic-Chinese family caregivers. Long-term care plans for children with a rare genetic disorder such as Russell-Silver Syndrome need to focus on positive dynamic family interactions, life-stage development and family caregiver support. Research on care-giving in rare genetic disorders is also warranted across cultures and countries to

Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration.

Directory of Open Access Journals (Sweden)

Rishma Gohil

Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.

Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis

NARCIS (Netherlands)

Suikers, Esther; Tissing, Wim J.E.; Brinksma, Aeltsje; Roodbol, Petrie F.; Kamps, Willem A.; Stewart, Roy E.; Sanderman, Robbert; Fleer, Joke

2015-01-01

Objective This study investigated the course, predictors, and impact of caregiving stress on the functioning of primary caregivers of children with cancer during the first year after a child's cancer diagnosis. Methods Primary caregivers (N = 95, 100% mother, 86% response rate) of consecutive newly

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

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Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2016-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR’s from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child’s autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child’s Individualized Education Program (IEP) and evaluation of caregiver satisfaction with the IEP. PMID:25643472

Food and Personal Hygiene Perceptions and Practices among Caregivers Whose Children Have Diarrhea: A Qualitative Study of Urban Mothers in Tangerang, Indonesia

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Usfar, Avita A.; Iswarawanti, Dwi N.; Davelyna, Devy; Dillon, Drupadi

2010-01-01

Objective: To examine caregivers' perceptions and practices related to food and personal hygiene and its association with diarrhea in children 6 to 36 months of age who suffered recurrent diarrhea. Design: This qualitative study, conducted in March and April 2006, used both in-depth interviews and direct observation data. Setting: Urban Tangerang,…

Help for the Caregiver

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... patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain ... be caused by the cancer or the treatments. What the caregiver is expected to do Caregivers report that they ...

Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

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Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-01-01

Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.

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Epstein-Lubow, Gary P; Beevers, Christopher G; Bishop, Duane S; Miller, Ivan W

2009-06-01

To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke. Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families. Neurology inpatient service of a large urban hospital. Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white. Not applicable. Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index). Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning. Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.

Knowledge and perception of mothers and caregivers on childhood ...

African Journals Online (AJOL)

lmboera

malaria, acquired immunodeficiency syndrome (AIDS) and tuberculosis (TB) combined ... mothers/caregivers on childhood diarrhoea focusing on three main aspects viz. .... no formal education while 37 (53%) and 11 (15.7%) had primary and ...

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

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Williams, Allison M; Tompa, Emile; Lero, Donna S; Fast, Janet; Yazdani, Amin; Zeytinoglu, Isik U

2017-09-20

Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s) to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s) for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s) in each participating workplace in order to determine: the degree of support for the intervention(s) (reflected in the workplace culture); how sex and gender are implicated; co-workers' responses to the chosen intervention(s), and

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

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Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

2015-01-01

This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

Exploring Engagement in Shared Reading Activities Between Children with Autism Spectrum Disorder and Their Caregivers.

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Fleury, Veronica P; Hugh, Maria L

2018-06-05

Reading aloud to children is a valued practice to promote emergent literacy and language skills that form the foundation for future reading success. We conducted a descriptive study of shared book reading practices between caregivers and their children with autism spectrum disorder (n = 17) and caregivers and their typically developing children (n = 20) to identify factors that can promote or inhibit children's engagement in reading. Caregivers and their children read nine books (familiar, non-fiction, fiction). Children with ASD demonstrated lower levels of passive engagement (looking at the book) and higher levels of non-engaged behavior compared to typically developing children. Caregiver reading quality and book type contributed to joint engagement during reading. Implications of these findings for intervention development are discussed.

Health Trajectories of Family Caregivers: Associations With Care Transitions and Adult Day Service Use

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Liu, Yin; Kim, Kyungmin; Zarit, Steven H.

2017-01-01

Objective The study examines family caregivers’ health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. Method The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Results Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers’ trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives’ placement. Discussion Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. PMID:25348275

Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

Science.gov (United States)

Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-09-01

In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Association of Filial Responsibility, Ethnicity, and Acculturation Among Japanese American Family Caregivers of Older Adults.

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Miyawaki, Christina E

2017-03-01

Challenges of filial caregiving practices by 1st-generation immigrants due to differences in caregiving values between their home and host countries are well documented. This study explored the filial responsibility of later generation Japanese American caregivers of older adults. Acculturation and filial responsibility were measured using the Suinn-Lew Asian Self Identity Acculturation scale and Filial Values Index, respectively. A qualitative interview guide was developed using Gordon's assimilation theory, and 21 caregivers ( M age = 68 years, 86% female, seven in each generation) were interviewed. Despite the 3rd-generation caregivers' high acculturation level, their filial responsibility scores remained high. Qualitative interviews also revealed later generation caregivers' strong filial responsibility and continued caregiving involvement. Unexpectedly, caregivers' own future expectancy of care included placement in mainstream residential facilities rather than ethnic-specific settings. Findings point to the need to develop caregiver services that consider later generation caregivers' culture and level of assimilation.

Family Relationships and Psychosocial Dysfunction among Family Caregivers of Patients with Advanced Cancer

DEFF Research Database (Denmark)

Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis

2016-01-01

CONTEXT: Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. OBJECTIVES......: To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. METHODS: Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer...... Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal...

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

Science.gov (United States)

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

Changes in perceived filial obligation norms among coresident family caregivers in Japan.

Science.gov (United States)

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-10-01

Japan introduced a nationwide long-term care insurance (LTCI) system in 2000, making long-term care (LTC) a right for older adults regardless of income and family availability. To shed light on its implications for family caregiving, we investigated perceived filial obligation norms among coresident primary family caregivers before and after the policy change. Descriptive and multiple regression analyses were conducted to examine changes in perceived filial obligation norms and its subdimensions (financial, physical, and emotional support), using 2-wave panel survey data of coresident primary family caregivers (N = 611) in 1 city. The baseline survey was conducted in 1999, and a follow-up survey 2 years later. On average, perceived filial obligation norms declined (p family caregivers. In particular, physical support, which Japan's LTC reform targeted, declined significantly among daughters and daughters-in-law (p perceived filial obligation norms after the policy introduction than sons and daughters (p < .01 and p < .05, respectively), controlling for the baseline filial obligation and situational factors. Our research indicates declining roles of daughters-in-law in elder care during Japan's LTCI system implementation period. Further international efforts are needed to design and implement longitudinal studies that help promote understanding of the interplay among national LTC policies, social changes, and caregiving norms and behaviors. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America.

Psychometrics of the Zarit Burden Interview in Caregivers of Patients With Heart Failure.

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Al-Rawashdeh, Sami Y; Lennie, Terry A; Chung, Misook L

Identification of family caregivers who are burdened by the caregiving experience is vital to prevention of poor outcomes associated with caregiving. The Zarit Burden Interview (ZBI), a well-known measure of caregiving burden in caregivers of patients with dementia, has been used without being validated in caregivers of patients with heart failure (HF). The purpose of this study is to examine the reliability and validity of the ZBI in caregivers of patients with HF. A total of 124 primary caregivers of patients with HF completed survey questionnaires. Caregiving burden was measured by the ZBI. Reliability was examined using Cronbach's α and item-total/item-item correlations. Convergent validity was examined using correlations with the Oberst Caregiving Burden Scale. Construct validity was demonstrated by exploratory factor analysis and known hypothesis testing (ie, the hypothesis of the association between caregiving burden and depressive symptoms). Cronbach's α for the ZBI was .921. The ZBI had good item-total (r = 0.395-0.764) and item-item (mean r = 0.365) correlations. Significant correlations between the ZBI and the Oberst Caregiving Burden Scale (r = 0.466 for the caregiving time subscale and 0.583 for the caregiving task difficulty subscale; P < .001 for both) supported convergent validity. Four factors were identified (ie, consequences of caregiving, patient's dependence, exhaustion with caregiving and uncertainty, and guilt and fear for the patient's future) using factor analysis, which are consistent with previous studies. Caregivers with high burden scores had significantly higher depressive symptoms than did caregivers with lower burden scores (7.0 ± 6.8 vs 3.1 ± 4.3; P < .01). The findings provide evidence that the ZBI is a reliable and valid measure for assessing burden in caregivers of patients with HF.

Problem-solving intervention for caregivers of children with mental health problems.

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Gerkensmeyer, Janis E; Johnson, Cynthia S; Scott, Eric L; Oruche, Ukamaka M; Lindsey, Laura M; Austin, Joan K; Perkins, Susan M

2013-06-01

Building Our Solutions and Connections (BOSC) focused on enhancing problem-solving skills (PSS) of primary caregivers of children with mental health problems. Aims were determining feasibility, acceptability, and effect size (ES) estimates for depression, burden, personal control, and PSS. Caregivers were randomized to BOSC (n=30) or wait-list control (WLC) groups (n=31). Data were collected at baseline, post-intervention, and 3 and 6 months post-intervention. Three-months post-intervention, ES for burden and personal control were .07 and .08, respectively. ES for depressed caregivers for burden and personal control were 0.14 and 0.19, respectively. Evidence indicates that the intervention had desired effects. Published by Elsevier Inc.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

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Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Caregiver Soothing Behaviors After Immunization and Infant Attachment: A Longitudinal Analysis.

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Hillgrove-Stuart, Jessica; Pillai Riddell, Rebecca; Flora, David B; Greenberg, Saul; Garfield, Hartley

2015-01-01

There were 2 primary objectives to the current study: (1) to relate caregiver behavior trajectories across immunization appointments over the first year of life to subsequent infant attachment and (2) to relate caregiver behavior trajectories within each immunization appointment over the first year of life to subsequent infant attachment. A subsample of 130 caregivers and their infants were recruited from a sample of 760 caregivers who were part of an ongoing longitudinal cohort that videotaped infants' 2-, 4-, 6-, and 12-month immunization appointments. This subsample of caregivers and their infants (n = 130) were invited to participate in an assessment of attachment when infants were between 12 and 18 months of age at the local children's hospital. Caregiver proximal soothing behaviors were the only caregiver behaviors postimmunization that were related to subsequent infant attachment. Higher frequencies of caregiver proximal soothing at 12 months were related to infants' organized attachment, whereas steeper decreases in proximal soothing across the first year were associated with disorganized infant attachment. In addition, when caregivers engaged in proximal soothing for longer after their 12 month olds' immunizations, these infants were more likely to be secure or organized in their attachment. These results provide empirical support for the ecological validity of studying infant attachment in a pediatric pain context. The pediatric "well-baby" visit may provide a potential opportunity to feasibly integrate brief infant mental health screening and intervention.

Psychosocial Challenges Associated with Caregiving in the Context of Pediatric HIV in Rural Eastern Cape

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Antonio G. Lentoor

2017-06-01

Full Text Available BackgroundWhile survival among human immunodeficiency virus (HIV-infected children has increased due to combination antiretroviral therapy, many children remain vulnerable to the adverse effects of poverty and family disruptions as a result of the loss of one or both biological parents to acquired immunodeficiency syndrome. The aim of this qualitative study was to develop an understanding of the psychosocial challenges experienced by caregivers caring for a child with perinatally acquired HIV.MethodA series of interviews were conducted with 44 HIV-positive and -negative primary caregivers of HIV+ children. Data were analyzed through interpretative phenomenological analysis using NVivo8 software.FindingsThe findings suggest that caregiving is compromised by inadequate, financial resources and single-headed households where mainly grandparents assume the role of primary caregivers of HIV+ children. HIV remains a stigmatized illness that weakens support networks, as well as timeous and free accessibility to healthcare. This has a negative impact on the mental health of caregivers, with the majority of women in the study displaying symptoms of depression.ConclusionThe findings highlight the contextual challenges of caregiving in the presence of HIV, which impacts negatively on social ecology of the families. The need for interventions to enhance resilience and coping in families confronted with HIV is indicated.

Cultural significance of primary teeth for caregivers in Northeast Brazil O significado cultural dos dentes decíduos para cuidadoras no Nordeste do Brasil

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Marilyn K Nations

2008-04-01

Full Text Available This anthropological study critically evaluates Brazilian caregivers' symbolic production and significance of their malnourished offspring's primary teeth, as well as their own, and describes popular dental practices. From January to June 2004, ethnographic interviews of 27 poor, low-literacy mothers were conducted at a public Malnutrition Treatment Center in Fortaleza, Ceará State. Participant observation of clinical pathways and home environments supplemented the data. Content analysis was performed. Results confirm that primary teeth are imbued with cultural significance in Northeast Brazil. Mothers examine mouths, perceive signs of decay, associate primary with permanent tooth healthiness, identify ethnodental illnesses, seek assistance, and perform rituals with exfoliated teeth. The mother's motivation to care for primary teeth is sparked by her memories of past toothache and attempts to avoid stigma and discrimination. Social determinants, not mothers' beliefs or behaviors, are the most critical obstacles to effective dental care. Legitimizing lay knowledge and empowering caregivers and children can improve oral health in Northeast Brazil.Este estudo antropológico analisa a produção simbólica de cuidadoras brasileiras sobre a sua dentição e a de seus filhos desnutridos, descrevendo práticas populares de cuidados em saúde bucal. De janeiro a junho de 2004, foram conduzidas entrevistas etnográficas com 27 cuidadoras, numa instituição pública, no tratamento de desnutrição em Fortaleza, Ceará. A observação participante da dinâmica de atendimento e do ambiente domiciliar suplementaram os dados. Foi utilizada a análise temática. Os resultados confirmam que os dentes decíduos são imbuídos de significados culturais no nordeste brasileiro. As mães examinam as bocas dos filhos, percebem sinais de cárie, associam dentes decíduos saudáveis com permanentes hígidos, identificam enfermidades etnodentárias, procuram assist

Potential Use of Food/Activity, Parenting Style, and Caregiver Feeding Style Measurement Tools with American Indian Families: A Brief Report.

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Hughes, Sheryl O; Hayes, Jenna T; Sigman-Grant, Madeleine; VanBrackle, Angela

2017-02-01

Objective To provide preliminary descriptive data on caregiver and child weight status, parenting styles, feeding styles, and feeding practices of a small American Indian sample. Methods Participants included a subsample of American Indian caregivers (n = 23) identified from a larger study that was conducted in five states. Using previously validated instruments, means, standard deviations, and ranges for general parenting styles, feeding styles, and feeding practices were explored. Results In general, most caregivers reported healthy feeding practices. Most caregivers scored higher on responsive compared to restrictive or permissive in general parenting. Of the sample, 12 caregivers (52.2 %) were classified in the indulgent feeding style category, 5 caregivers (21.7 %) were classified as authoritative, 5 (21.7 %) uninvolved, and 1 (4.3 %) authoritarian. Conclusions More investigations are needed to explore questions raised by this study about using common tools that measure childhood obesity with American Indian families.

A Research Study on Secure Attachment Using the Primary Caregiving Approach

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Ebbeck, Marjory; Phoon, Dora Mei Yong; Tan-Chong, Elizabeth Chai Kim; Tan, Marilyn Ai Bee; Goh, Mandy Lian Mui

2015-01-01

A child's positive sense of well-being is central to their overall growth and development. With an increasing number of mothers in the workforce, many infants and toddlers spend much time in child care services. Hence it is crucial that caregivers provide a secure base for the child to develop secure attachment with educarers. Given multiple…

Late-Stage Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Middle-State Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Early-Stage Caregiving

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... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

Family caregivers' attributions about care-recipient behaviour: does caregiver relationship satisfaction mediate the attribution-distress relationship?

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Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra

2011-09-01

The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.

Psychometrics of the AAN Caregiver Driving Safety Questionnaire and contributors to caregiver concern about driving safety in older adults.

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Carvalho, Janessa O; Springate, Beth; Bernier, Rachel A; Davis, Jennifer

2018-03-01

ABSTRACTBackground:The American Academy of Neurology (AAN) updated their practice parameters in the evaluation of driving risk in dementia and developed a Caregiver Driving Safety Questionnaire, detailed in their original manuscript (Iverson Gronseth, Reger, Classen, Dubinsky, & Rizzo, 2010). They described four factors associated with decreased driving ability in dementia patients: history of crashes or citations, informant-reported concerns, reduced mileage, and aggressive driving. An informant-reported AAN Caregiver Driving Safety Questionnaire was designed with these elements, and the current study was the first to explore the factor structure of this questionnaire. Additionally, we examined associations between these factors and cognitive and behavioral measures in patients with mild cognitive impairment or early Alzheimer's disease and their informants. Exploratory factor analysis revealed a four-component structure, consistent with the theory behind the AAN scale composition. These four factor scores also were significantly associated with performance on cognitive screening instruments and informant reported behavioral dysfunction. Regressions revealed that behavioral dysfunction predicted caregiver concerns about driving safety beyond objective patient cognitive dysfunction. In this first known quantitative exploration of the scale, our results support continued use of this scale in office driving safety assessments. Additionally, patient behavioral changes predicted caregiver concerns about driving safety over and above cognitive status, which suggests that caregivers may benefit from psychoeducation about cognitive factors that may negatively impact driving safety.

Web-Based Tools for Educating Caregivers About Childhood Fever: A Randomized Controlled Trial.

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Hart, Lara; Nedadur, Rashmi; Reardon, Jaime; Sirizzotti, Natalie; Poonai, Caroline; Speechley, Kathy N; Loftus, Jay; Miller, Michael; Salvadori, Marina; Spadafora, Amanda; Poonai, Naveen

2016-10-04

Fever is a common reason for an emergency department visit and misconceptions abound. We assessed the effectiveness of an interactive Web-based module (WBM), read-only Web site (ROW), and written and verbal information (standard of care [SOC]) to educate caregivers about fever in their children. Caregivers in the emergency department were randomized to a WBM, ROW, or SOC. Primary outcome was the gain score on a novel questionnaire testing knowledge surrounding measurement and management of fever. Secondary outcome was caregiver satisfaction with the interventions. There were 77, 79, and 77 participants in the WBM, ROW, and SOC groups, respectively. With a maximum of 33 points, Web-based interventions were associated with a significant mean (SD) pretest to immediate posttest gain score of 3.5 (4.2) for WBM (P ROW > SOC (P Web-based interventions are associated with significant improvements in caregiver knowledge about fever and high caregiver satisfaction. These interventions should be used to educate caregivers pending the demonstration of improved patient-centered outcomes.

Conditioned to eat while watching television? Low-income caregivers' perspectives on the role of snacking and television viewing among pre-schoolers.

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Blaine, Rachel E; Fisher, Jennifer Orlet; Blake, Christine E; Orloski, Alexandria; Younginer, Nicholas; Bruton, Yasmeen; Ganter, Claudia; Rimm, Eric B; Geller, Alan C; Davison, Kirsten K

2016-06-01

Although television (TV) viewing is frequently paired with snacking among young children, little is known about the environment in which caregivers promote this behaviour. We describe low-income pre-schoolers' snacking and TV viewing habits as reported by their primary caregivers, including social/physical snacking contexts, types of snacks and caregiver rationales for offering snacks. These findings may support the development of effective messages to promote healthy child snacking. Semi-structured interviews assessed caregiver conceptualizations of pre-schoolers' snacks, purpose of snacks, snack context and snack frequency. Interviews occurred in Boston, Massachusetts and Philadelphia, Pennsylvania, USA. Forty-seven low-income multi-ethnic primary caregivers of children aged 3-5 years (92 % female, 32 % Hispanic/Latino, 34 % African American) described their child's snacking in the context of TV viewing. TV viewing and child snacking themes were described consistently across racial/ethnic groups. Caregivers described snacks offered during TV viewing as largely unhealthy. Labels for TV snacks indicated non-nutritive purposes, such as 'time out', 'enjoyment' or 'quiet.' Caregivers' primary reasons for providing snacks included child's expectations, behaviour management (e.g. to occupy child) and social time (e.g. family bonding). Some caregivers used TV to distract picky children to eat more food. Child snacking and TV viewing were contextually paired by providing child-sized furniture ('TV table') specifically for snacking. Low-income caregivers facilitate pre-schoolers' snacking and TV viewing, which are described as routine, positive and useful for non-nutritive purposes. Messages to caregivers should encourage 'snack-free' TV viewing, healthy snack options and guidance for managing children's behaviour without snacks or TV.

QOL in caregivers of Japanese patients with Prader-Willi syndrome with reference to age and genotype.

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Ihara, Hiroshi; Ogata, Hiroyuki; Sayama, Masayuki; Kato, Aya; Gito, Masao; Murakami, Nobuyuki; Kido, Yasuhiro; Nagai, Toshiro

2014-09-01

This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader-Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children (aged from 6 to 12 years) and 23 adolescents (aged from 13 to 19 years), including 6 children and 7 adolescents with maternal uniparental disomy (mUPD) and 16 children and 16 adolescents with deletion (DEL). The QOL of the primary family caregiver for each patient was assessed using the Japanese version of the WHOQOL-BREF. To examine the effect that age (children vs. adolescents) and genotype (DEL vs. mUPD) have on the QOL of caregivers, a two-way ANOVA was conducted, followed by the Bonferroni procedure to test the simple main effects. The two age groups and the two genotypes of PWS were used as independent variables and the total QOL of caregivers as a dependent variable. The two-way ANOVA (F(1, 41) = 6.98, P caregivers of DEL adolescents showed little difference from that with DEL children, but the QOL of caregivers for mUPD adolescents was shown to be lower than that with mUPD children along with that of caregivers with DEL adolescents. There is hence a growing tendency for the deterioration in the QOL of caregivers to manifest itself later in the patients' adolescence, found mainly with mUPD patients. © 2014 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc.

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults with Down Syndrome

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Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley, T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30-53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure…

Exploring the Link between Caregiver Affect and Adolescent Sexual Behavior: Does Neighborhood Disadvantage Matter?

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Gardner, Margo; Martin, Anne; Brooks-Gunn, Jeanne

2012-01-01

In a sample of urban youth (N = 1,070), we examined the links between primary caregiver affect (i.e., warmth and hostility) and two measures of sexual behavior in adolescence--early sexual initiation and sex with multiple partners. We also examined the extent to which neighborhood disadvantage moderated associations between caregiver affect and…

Caregivers of patients with cancer: anxiety, depression and distribution of dependency.

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Cipolletta, Sabrina; Shams, Malihe; Tonello, Fabio; Pruneddu, Alessandra

2013-01-01

Assisting a patient with cancer implies assuming a role that may fit in with the previous role of the person or that may contrast with it, thereby provoking suffering. This research explores if it is possible to identify different profiles of caregivers on the basis of different levels of anxiety and depression as well as on different ways of distributing one's own dependency. There were 50 Italian primary caregivers of patients with cancer who completed the Beck Anxiety Inventory, the Beck Depression Inventory-II, and Kelly's Dependency Grids. Cluster analysis was conducted on the indices derived from the three instruments. Three profiles were found on the basis of how the caregivers used their resources to give and to receive help. If there was congruence between the situation of giving help that the caregivers experienced and their personal role, then anxiety and depression decreased, otherwise, they increased. The implications of the balance/imbalance between the usual and the present role depended also on the typicality of the caregivers' experience, as related to their caring role. These results suggest the usefulness of planning different kinds of support for different experiences of caregiving. Copyright © 2011 John Wiley & Sons, Ltd.

The effects of caregiver and household HIV on child development: a community-based longitudinal study of young children.

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Sherr, L; Skeen, S; Hensels, I S; Tomlinson, M; Macedo, A

2016-11-01

Many studies that document child outcomes in the context of parental HIV - which has been established as a risk factor for child development - focus on older children/adolescents. Studies also concentrate on the status of the primary caregiver, not other household members who might be infected. This study examined the effects of caregiver and household HIV on child development (4-13 years) in South Africa and Malawi (2011-2014). Data were gathered from 989 children and their primary caregivers at baseline and repeated at 12-15 months follow-up (86.5% follow-up rate). Only caregivers of a single child and caregiver/child dyads without missing data were included, providing a sample of 808 dyads for analysis. Children were divided into three groups according to caregiver-reported HIV burden: having an HIV-positive primary caregiver (19.8%), having HIV in the household (14.2%) or no HIV (66%). The HIV burden was positively associated with an array of negative child outcomes, often mediated by caregiver depression levels. Family HIV burden at baseline affected child behavioural problems at follow-up indirectly through carer depression (B = 0.02; CI = 0.003, 0.06). Internalizing (B = 0.02; CI = 0.002, 0.05) and externalizing problems at follow-up (B = 0.01; CI = 0.0002, 0.03) were also indirectly affected by family HIV burden through caregiver depression. The data suggest that family HIV can affect child development, emphasizing the important role of depression in the pathway to such an effect. Community-based interventions directed at alleviating parental depression in the presence of HIV may help to interrupt the cycle of family HIV and adverse child outcomes. © 2016 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.

Family Caregiver Alliance

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... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... AiA18 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Studies show ...

Tacit definitions of informal caregiving.

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Wrubel, J; Richards, T A; Folkman, S; Acree, M C

2001-01-01

This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.

Relationship-Focused Child Care Practices: Quality of Care and Child Outcomes for Children in Poverty

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Owen, Margaret Tresch; Klausli, Julia F.; Mata-Otero, Ana-Maria; Caughy, Margaret O'Brien

2008-01-01

Research Findings: Child care delivery practices promoting continuous, primary caregiver-child relationships (relationship-focused child care) were evaluated for 223 preschool-age children (45% African American, 55% Latino) attending child care centers serving low-income children. Both relationship-focused and non-relationship-focused centers were…

Resilience in family caregivers of persons with acquired brain injury.

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Las Hayas, Carlota; López de Arroyabe, Elena; Calvete, Esther

2015-08-01

The authors' purpose was to develop the Questionnaire of Resilience in Caregivers of Acquired Brain Injury (QRC-ABI) and explore its psychometric properties The QRC-ABI was developed to measure the process of resilience, including resilient factors that, according to the literature, are the most relevant for caregivers. This is a cross-sectional study of Spanish primary caregivers of individuals with ABI. It included 237 caregivers (77.6% women and 21.1% men) who completed the QRC-ABI, the Posttraumatic Growth Inventory (Weiss & Berger, 2006), the World Health Organization Quality of Life-BREF (Skevington, Lotfy, O'Connell, & the WHOQOL Group, 2004) assessment, and the Positive Aspects of Caregiving (Tarlow et al., 2004) assessment. An item pool of 36 items was developed, from which 17 were finally selected based on a consensus among researchers and adequate symmetry indexes and kurtoses. Confirmatory factor analysis of the QRC-ABI confirmed a hierarchical solution in which 4 resilience dimensions were explained by a broader general resilience factor. The internal consistency of each scale was >.80. Convergent validity was supported through positive correlations of the QRC-ABI with quality of life, positive aspects of caregiving, and posttraumatic growth, and a negative correlation with perceived burden. The new QRC-ABI showed good reliability and validity. Our results are consistent with previous studies that have argued that resilient qualities are important for a healthy and positive adaptation to the challenging adversities faced by caregivers of individuals with ABI. Future interventions based on resilience should promote these factors in caregivers. (c) 2015 APA, all rights reserved).

Evaluation of caregiver-friendly workplace policy (CFWPs interventions on the health of full-time caregiver employees (CEs: implementation and cost-benefit analysis

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Allison M. Williams

2017-09-01

Full Text Available Abstract Background Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic and workers (health of caregiver-friendly workplace policy intervention(s for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s? Methods Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s in each participating workplace in order to determine: the degree of support for the intervention(s (reflected in the workplace culture; how sex and gender are implicated; co

In search of joy in practice: a report of 23 high-functioning primary care practices.

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Sinsky, Christine A; Willard-Grace, Rachel; Schutzbank, Andrew M; Sinsky, Thomas A; Margolius, David; Bodenheimer, Thomas

2013-01-01

We highlight primary care innovations gathered from high-functioning primary care practices, innovations we believe can facilitate joy in practice and mitigate physician burnout. To do so, we made site visits to 23 high-performing primary care practices and focused on how these practices distribute functions among the team, use technology to their advantage, improve outcomes with data, and make the job of primary care feasible and enjoyable as a life's vocation. Innovations identified include (1) proactive planned care, with previsit planning and previsit laboratory tests; (2) sharing clinical care among a team, with expanded rooming protocols, standing orders, and panel management; (3) sharing clerical tasks with collaborative documentation (scribing), nonphysician order entry, and streamlined prescription management; (4) improving communication by verbal messaging and in-box management; and (5) improving team functioning through co-location, team meetings, and work flow mapping. Our observations suggest that a shift from a physician-centric model of work distribution and responsibility to a shared-care model, with a higher level of clinical support staff per physician and frequent forums for communication, can result in high-functioning teams, improved professional satisfaction, and greater joy in practice.

Caregiver resilience in palliative care: a research protocol.

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Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria

2016-02-01

To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

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Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Caregiver burden among relatives of patients with schizophrenia in Katsina, Nigeria

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Abdulkareem Jika Yusuf

2009-06-01

Full Text Available Objective: Caring for patients’ with schizophrenia leads to an enormous burden on the caregivers. However, the magnitude of this problem remains largely unknown in Sub-Saharan Africa. The objective of this study was to determine the burden of care giving among relatives of patients with schizophrenia. Materials and method: A total of 129 primary care-givers of patients with schizophrenia attending out-patient clinic of Katsina state Psychiatric Hospital were interviewed using a socio-demographic data collection sheet and Zarith Burden Interview (ZBI. Data obtained was analysed using Statistical Package for Social Sciences version 13. Results: The mean age of the respondents was 45.07±8.91. Majority of the caregivers are females. High level of burden was found in 47.3% of the respondents. The level of burden experienced was significantly associated with place of residence and family size. Conclusion: Schizophrenia is associated with high level of caregiver burden and effort should be made at alleviating this burden for better out come in both the patients and caregivers.

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

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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…

Caring for the caregivers: an investigation of factors related to well-being among parents caring for a child with Smith-Magenis syndrome.

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Foster, Rebecca H; Kozachek, Stephanie; Stern, Marilyn; Elsea, Sarah H

2010-04-01

Smith-Magenis syndrome (SMS) is a complex disorder characterized by numerous challenges, including intellectual disability, speech delay, decreased pain sensitivity, sleep disturbances, hyperactivity, mood instability, and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands, caregivers may encounter difficulties maintaining their own level of well-being. Thus, a total of 112 primary caregivers (i.e., parents) of individuals diagnosed with SMS responded to online questionnaires to assess demographic and psychosocial factors, such as perceptions of child health vulnerability, benefit finding, sleep behaviors, anxiety and depression symptomatology, and caregiver satisfaction and self-efficacy, which may be related to caregiver well-being. Results show that, among mothers, caregiver well-being was directly related to perceived child health vulnerability, caregiver satisfaction, and benefit finding, and a significant moderating effect was observed for depression/anxiety counseling after beginning the caregiver role on the relationship between anxiety symptomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels of anxiety but do not seek counseling fair the worst in terms of well-being. Among fathers, lower depression symptoms and greater benefit finding were related to higher levels of caregiver well-being. These data show that many factors play roles in influencing coping and well-being among SMS caregivers. Investigating these variables and relationships may reveal additional resources and interventions to assist primary caregivers.

Gendering Guilt among Dependent Family Members' Caregivers.

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Brea, Maria-Teresa; Albar, María-Jesús; Casado-Mejia, Rosa

2016-11-17

This study analyzes guilt among family caregivers of dependent patients, from a gender perspective. A qualitative design was used, conducting in-depth interviews and focus groups. Using purposive sampling, we selected 73 family caregivers and 23 health professionals (family medicine, community nursing, and social work) from the Primary Care District of Seville. The content of the information collected was analyzed in terms of the following categories: a) guilt for abandoning family and friends; b) guilt for the relationship with the dependent person; and c) guilt for placing the relative in a nursing home. To validate the findings, data sources, methodological techniques, and researchers' disciplines were all triangulated. Results indicated that women report more guilt than men for abandoning family and friends, and because of their relationship with the dependent person. However, with respect to nursing home placement, no difference was observed as a function of gender. The high incidence of caregiver guilt needs to be addressed by health professionals to avoid the emergence of other mental health issues.

The 2014 National Nursing Research Roundtable: The science of caregiving.

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Grady, Patricia A; Gullatte, Mary

2014-01-01

The National Nursing Research Roundtable (NNRR) meets annually to provide an opportunity for the leaders of nursing organizations with a research mission to discuss and disseminate research findings to improve health outcomes. In 2014, the NNRR addressed the science of caregiving, a topic of increasing importance given that more people are living with chronic conditions and that managing chronic illness is shifting from providers to individuals, their families, and the communities where they live. The NNRR consisted of scientific presentations in which leading researchers discussed the latest advances in caregiving science across the life span and breakout sessions where specific questions were discussed. The questions focused on the policy and practice implications of caregiving science and provided an opportunity for nursing leaders to discuss ways to advance caregiving science. The nursing community is ideally positioned to design and test caregiver health interventions and to implement these interventions in clinical and community settings. Published by Elsevier Inc.

Does a family meetings intervention prevent depression and anxiety in family caregivers of dementia patients? A randomized trial.

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Karlijn J Joling

Full Text Available Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96 or usual care (n = 96 condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes, caregiver burden and quality of life (secondary outcomes. Intention-to-treat as well as per protocol analyses were performed.A substantial number of caregivers (72/192 developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38 or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10 or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49. The intervention did not reduce caregiver burden or their health related quality of life.This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

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Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; Psatisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Service Use and Satisfaction Following Acquired Brain Injury: A Preliminary Analysis of Family Caregiver Outcomes

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Degeneffe, Charles Edmund; Green, Richard; Jones, Clair

2016-01-01

Purpose: The study aimed to understand how use and satisfaction with services following discharge from an acquired brain injury (ABI) acute-care facility related to family caregiver outcomes. Methods: A correlational and descriptive study design was used. Nineteen primary family caregivers of persons recently discharged from an ABI acute-care…

Economies of scope in Danish primary care practices

DEFF Research Database (Denmark)

Kristensen, Troels; Rose Olsen, Kim

2011-01-01

between GP services and overall economies of scope. Data: Cross-section data for a sample of 331 primary care practices with 1-8 GPs from the year 2006. This is a unique combined dataset consisting of survey and register data. Results: We find a trend towards cost complementarities between the production......Aim: We analyze total operating costs and activities in Danish General Practice units to assess whether there are unexploited economies of scope in the production of primary care services. Methods: We apply stochastic frontier analysis to derive cost functions and associated cost complementarities...

Practice Guidelines for Primary Care of Acute Abdomen 2015.

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Mayumi, Toshihiko; Yoshida, Masahiro; Tazuma, Susumu; Furukawa, Akira; Nishii, Osamu; Shigematsu, Kunihiro; Azuhata, Takeo; Itakura, Atsuo; Kamei, Seiji; Kondo, Hiroshi; Maeda, Shigenobu; Mihara, Hiroshi; Mizooka, Masafumi; Nishidate, Toshihiko; Obara, Hideaki; Sato, Norio; Takayama, Yuichi; Tsujikawa, Tomoyuki; Fujii, Tomoyuki; Miyata, Tetsuro; Maruyama, Izumi; Honda, Hiroshi; Hirata, Koichi

2016-01-01

Since acute abdomen requires accurate diagnosis and treatment within a particular time limit to prevent mortality, the Japanese Society for Abdominal Emergency Medicine, in collaboration with four other medical societies, launched the Practice Guidelines for Primary Care of Acute Abdomen that were the first English guidelines in the world for the management of acute abdomen. Here we provide the highlights of these guidelines (all clinical questions and recommendations were shown in supplementary information). A systematic and comprehensive evaluation of the evidence for epidemiology, diagnosis, differential diagnosis, and primary treatment for acute abdomen was performed to develop the Practice Guidelines for Primary Care of Acute Abdomen 2015. Because many types of pathophysiological events underlie acute abdomen, these guidelines cover the primary care of adult patients with nontraumatic acute abdomen. A total of 108 questions based on nine subject areas were used to compile 113 recommendations. The subject areas included definition, epidemiology, history taking, physical examination, laboratory test, imaging studies, differential diagnosis, initial treatment, and education. Japanese medical circumstances were considered for grading the recommendations to assure useful information. The two-step methods for the initial management of acute abdomen were proposed. Early use of transfusion and analgesia, particularly intravenous acetaminophen, were recommended. The Practice Guidelines for Primary Care of Acute Abdomen 2015 have been prepared as the first evidence-based guidelines for the management of acute abdomen. We hope that these guidelines contribute to clinical practice and improve the primary care and prognosis of patients with acute abdomen. © 2015 Japanese Society of Hepato-Biliary-Pancreatic Surgery.

Compassionate Love in Individuals With Alzheimer's Disease and Their Spousal Caregivers: Associations With Caregivers' Psychological Health.

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Monin, Joan K; Schulz, Richard; Feeney, Brooke C

2015-12-01

To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms. Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Prevalence of irritable bowel syndrome in caregivers of patients with chronic diseases.

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Remes-Troche, J M; Torres-Aguilera, M; Montes-Martínez, V; Jiménez-García, V A; Roesch-Dietlen, F

2015-06-01

Caregivers are an at-risk population for psychic and physical diseases such as irritable bowel syndrome (IBS). However, it is not known whether providing care for the chronically ill patient can be considered a risk factor for developing IBS. In this study, our aim was to evaluate the prevalence of IBS according to the Rome II criteria in a group of caregivers. A cross-sectional study was conducted through an evaluation of caregivers of chronically ill patients. Subjects completed questionnaires including the Rome II Modular Questionnaire, the Hospital Anxiety and Depression Scale, the Zarit Caregiver Burden Interview (ZCBI) (an instrument for evaluating the burden experienced by caregivers), and the irritable bowel syndrome quality of life (IBS-QoL) questionnaire. Ninety-six primary caregivers (mean age was 43.6 ± 13.7 years and 87% were women) were evaluated. The mean length of time providing care was 37.6 months (3-288 months). Forty-seven caregivers (49%) presented with IBS. The caregivers with IBS had higher scores in the global ZCBI score (47 ± 8 vs 28 ± 8, p = 0.001) and on the anxiety and depression scale (p = 0.001) than those that did not have IBS. A total of 72% were diagnosed with caregiver stress syndrome; 42 of them had IBS according to the Rome II questionnaire (60% vs 18%, p = 0.001, relative risk 3.28, 95% CI: 1.4-7.4). Caregivers of chronically ill patients have a high prevalence of IBS, which is associated with depression, anxiety, and poor QoL. © 2015 John Wiley & Sons Ltd.

Factors associated with the quality of life of subjects with Parkinson's disease and burden on their caregivers.

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Rodríguez-Violante, M; Camacho-Ordoñez, A; Cervantes-Arriaga, A; González-Latapí, P; Velázquez-Osuna, S

2015-06-01

Parkinson's disease affects the quality of life of the individual with the disease in addition to creating a burden on the caregiver. Factors related to these effects include motor and non-motor aspects of the disease, as well as traits inherent to the caregiver. We evaluated subjects with Parkinson's disease using the following instruments: Quality of Life Questionnaire PDQ-8, Movement Disorders Society Unified Parkinson's disease Rating Scale part i to iv (MDS-UPDRS), and Hoehn and Yahr staging. The Zarit Burden Inventory was used to assess all primary caregivers. Major demographic and clinical variables were also recorded. A total of 250 subjects with Parkinson's disease were included, of whom 201 had a primary caregiver. In the multivariate analysis, predictors of poor quality of life for a subject with Parkinson's disease were the MDS-UPDRS I score (β=.39, PParkinson's disease and the caregiver's perceived burden. However, the factors that determine each situation appear to be distinct. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

Informal caregiving burden and perceived social support in an acute stroke care facility.

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Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana

2018-04-05

Providing informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria. Ethical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants' level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers' and stroke survivors' socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05. The prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = - 0.295). Informal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

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Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

[Problems in the process of adapting to change among the family caregivers of elderly people with dementia].

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Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael

2016-01-01

To identify and analyse problems in adapting to change among the family caregivers of relatives with dementia. Qualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity. We obtained three main categories: 'Changing Care', 'Problems in the process of adapting to change' and 'Facilitators of the process of adapting to change'. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role. The adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role. Copyright © 2016 SESPAS. Published by Elsevier Espana. All rights reserved.

The cultural dialogue on the domestic dimension of care to immigrant caregivers in Spain

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Isabel Morales-Moreno

2015-10-01

Full Text Available Objectives: to determine how the immigration phenomenon influences the response to informal care in the domestic level through the caregiver activity, and to analyze the cultural dialogue established in the residential area of Murcia (Spain.Method: This is an ethnographic study, conducted in 26 informal immigrant caregivers. As data collection instruments, semi-structured interviews and participant observation were employed. MAXQDA-2 assisted content analysis was also applied.Results: the immigrant caregiver is the main consumer of traditional medicines, extending these health practices to her home group. A cultural dialogue is established on informal care, characterized by interculturalism and mutual adaptation.Conclusions: cultural hybridization was identified for informal caregivers, immigrants and cultural integration: new health care practices and cultural behaviors in informal systems. There is a transformation in the roles of family members attended in domestic environments, increasing quality of life and self care. They represent an alternative to medicalization, promoting self-management of health.

The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

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Sun, Fei; Ong, Rebecca; Burnette, Denise

2012-02-01

The purpose of this article is to pinpoint the cultural and ethnic influences on dementia caregiving in Chinese American families through a systemic review and analysis of published research findings. Eighteen publications on Chinese American dementia family caregivers published in peer-reviewed journals between 1990 and early 2011 were identified. Based on a systematic database search and review process, we found that caregivers' beliefs concerning dementia and the concept of family harmony as evidenced through the practice of filial piety are permeating cultural values, which together affect attitudes toward research and help-seeking behaviors (ie, seeking information on diagnosis and using formal services). There is also evidence to suggest that these cultural beliefs impinge on key elements of the caregiving process, including caregivers' appraisal of stress, coping strategies, and informal and formal support. The study concludes with recommendations for future research and practice with the Chinese American population.

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...

Implementing change in primary care practices using electronic medical records: a conceptual framework.

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Nemeth, Lynne S; Feifer, Chris; Stuart, Gail W; Ornstein, Steven M

2008-01-16

Implementing change in primary care is difficult, and little practical guidance is available to assist small primary care practices. Methods to structure care and develop new roles are often needed to implement an evidence-based practice that improves care. This study explored the process of change used to implement clinical guidelines for primary and secondary prevention of cardiovascular disease in primary care practices that used a common electronic medical record (EMR). Multiple conceptual frameworks informed the design of this study designed to explain the complex phenomena of implementing change in primary care practice. Qualitative methods were used to examine the processes of change that practice members used to implement the guidelines. Purposive sampling in eight primary care practices within the Practice Partner Research Network-Translating Researching into Practice (PPRNet-TRIP II) clinical trial yielded 28 staff members and clinicians who were interviewed regarding how change in practice occurred while implementing clinical guidelines for primary and secondary prevention of cardiovascular disease and strokes. A conceptual framework for implementing clinical guidelines into primary care practice was developed through this research. Seven concepts and their relationships were modelled within this framework: leaders setting a vision with clear goals for staff to embrace; involving the team to enable the goals and vision for the practice to be achieved; enhancing communication systems to reinforce goals for patient care; developing the team to enable the staff to contribute toward practice improvement; taking small steps, encouraging practices' tests of small changes in practice; assimilating the electronic medical record to maximize clinical effectiveness, enhancing practices' use of the electronic tool they have invested in for patient care improvement; and providing feedback within a culture of improvement, leading to an iterative cycle of goal setting

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

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Lee, Regina L T; Mok, Esther S B

2011-05-01

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

Aspects of family caregiving as addressed in planned discussions between nurses, patients with chronic diseases and family caregivers: a qualitative content analysis.

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Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise

2017-01-01

Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital. Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital. Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness. Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approach in order to gain insight into addressed aspects of family caregiving. A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identified regarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients' social network, and included 'social network structure' and 'social network support'. One theme referred to aspects addressing coordination of care issues involving family caregiving, referred to as 'coordination of care'. During discussions nurses mostly addressed practical information on the patients' social network structure. When specific family caregiving support was addressed, information was limited and

Conveying empathy to hospice family caregivers: team responses to caregiver empathic communication.

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Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L

2012-10-01

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Correlations between caregiver psychiatric symptoms and offspring psychopathology in a low-resource setting

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Camila T. Matsuzaka

2017-07-01

Full Text Available Objective: Associations between parental/caregiver depression and adverse child outcomes are well established and have been described through one or more mechanisms: child psychopathology following exposure to a depressed caregiver, child psychopathology exacerbating a caregiver’s depression, and caregiver and offspring depression sharing the same etiology. Data from low and middle-income countries is scarce. We examined correlations between common symptoms of mental disorders in caregivers and their offspring’s psychopathology in a Brazilian sample. Methods: In this cross-sectional study, adult caregivers were screened for depression during routine home visits by community health workers as part of the Brazilian Family Health Strategy. Caregivers with suspected depression were assessed using the Zung Self-Rating Depression Scale and the Self-Reporting Questionnaire (SRQ-20. Children’s symptoms were evaluated using the Strengths and Difficulties Questionnaire (SDQ. Results: The sample included 68 primary caregivers and 110 children aged 6 to 15 years. Higher caregiver scores on the SRQ-20 correlated significantly with psychiatric symptoms in offspring. Conclusion: These results substantiate our hypothesis that child psychopathology correlates with caregivers’ psychiatric symptoms. This paper adds to the growing literature on community mental health assessment and can help guide future strategies for reducing the burden of common mental disorders in caregivers and children alike in low and middle-income countries.

Resilience Modulators and Overburden in Major Caregivers of Advanced Cancer Patients

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Anay González Guerra

2017-03-01

Full Text Available Foundation: the caregiver plays an important role in helping and supporting a patient with cancer, but at the same time has the emotional and work burden which this work presupposes. Objective: to determine the resilience modulating factors and the degree of burden in major caregivers of advanced cancer patients. Method: a descriptive study was developed at the Area III Policlinic Cienfuegos during the period from December 2012 to March 2013. The universe was constituted by 25 primary caregivers of patients in an advanced stage of the disease. The studied variables were: sex, age, scholarship, occupation, marital status, kinship, time to patient care, self-esteem, optimism, emotional intelligence, and burden. The techniques used were: questionnaire and test of emotional intelligence, Coopersmith self-esteem inventory, caregiver burden scale by Zarit. Results: ages between 51 and 72 years predominated 48 %, 88 % were female, 40 % had elementary school level and 48 % were married, 72 % were housewives, 44 % were patients spouses, 52 % less than a year of care giving. 60 % had an intense burden, 48 % low level of self-esteem and an intense burden. 58.3 % of caregivers with low emotional intelligence had an intense burden. Conclusion: resilience modulators, self-esteem and emotional intelligence determine the level of burden suffered by major caregivers of advanced cancer patients.

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

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Cheryl Kai Ting Chua

2016-11-01

Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

Science.gov (United States)

Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

2016-11-15

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Positive effects of a cognitive-behavioral intervention program for family caregivers of demented elderly

Directory of Open Access Journals (Sweden)

Patrícia Paes Araujo Fialho

2012-10-01

Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.

A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes.

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Tanner, Jeremy A; Black, Betty S; Johnston, Deirdre; Hess, Edward; Leoutsakos, Jeannie-Marie; Gitlin, Laura N; Rabins, Peter V; Lyketsos, Constantine G; Samus, Quincy M

2015-04-01

To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs. Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

A meta-ethnography of organisational culture in primary care medical practice.

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Grant, Suzanne; Guthrie, Bruce; Entwistle, Vikki; Williams, Brian

2014-01-01

Over the past decade, there has been growing international interest in shaping local organisational cultures in primary healthcare. However, the contextual relevance of extant culture assessment instruments to the primary care context has been questioned. The aim of this paper is to derive a new contextually appropriate understanding of the key dimensions of primary care medical practice organisational culture and their inter-relationship through a synthesis of published qualitative research. A systematic search of six electronic databases followed by a synthesis using techniques of meta-ethnography involving translation and re-interpretation. A total of 16 papers were included in the meta-ethnography from the UK, the USA, Canada, Australia and New Zealand that fell into two related groups: those focused on practice organisational characteristics and narratives of practice individuality; and those focused on sub-practice variation across professional, managerial and administrative lines. It was found that primary care organisational culture was characterised by four key dimensions, i.e. responsiveness, team hierarchy, care philosophy and communication. These dimensions are multi-level and inter-professional in nature, spanning both practice and sub-practice levels. The research contributes to organisational culture theory development. The four new cultural dimensions provide a synthesized conceptual framework for researchers to evaluate and understand primary care cultural and sub-cultural levels. The synthesised cultural dimensions present a framework for practitioners to understand and change organisational culture in primary care teams. The research uses an innovative research methodology to synthesise the existing qualitative research and is one of the first to develop systematically a qualitative conceptual framing of primary care organisational culture.

Determinants of medication adherence in older people with dementia from the caregivers' perspective.

Science.gov (United States)

El-Saifi, Najwan; Moyle, Wendy; Jones, Cindy; Alston-Knox, Clair

2018-05-11

ABSTRACTBackground:Adherence to treatment is a primary determinant of treatment success. Caregiver support can influence medication adherence in people with cognitive impairment. This study sought to characterize medication adherence in older people with dementia from the caregivers' perspective, and to identify influencing factors. Caregivers caring for a person with dementia and living in the community were eligible to complete the survey. Bayesian profile regression was applied to identify determinants of medication adherence measured using the Adherence to Refills and Medication Scale. Out of the 320 caregivers who participated in the survey, Bayesian profile regression on 221 participants identified two groups: Profile 1 (55 caregivers) with a mean adherence rate of 0.69 (80% Credible Interval (CrI): 0.61-0.77), and Profile 2 (166 caregivers) with a mean adherence rate of 0.80 (80% CrI: 0.77-0.84). Caregivers in Profile 1 were characterized with below data average scores for the following: cognitive functioning, commitment or intention, self-efficacy, and health knowledge, which were all above the data average in Profile 2, except for health knowledge. Caregivers in Profile 1 had a greater proportion of care recipients taking more than five medications and with late-stage dementia. Trade, technical, or vocational training was more common among the caregivers in Profile 1. Profile 2 caregivers had a better patient-provider relationship and less medical problems. Bayesian profile regression was useful in understanding caregiver factors that influence medication adherence. Tailored interventions to the determinants of medication adherence can guide the development of evidence-based interventions.

Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

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Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

2008-01-01

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

OpenAIRE

Van Houtven, Courtney Harold; Voils, Corrine I; Weinberger, Morris

2011-01-01

Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected...

Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India.

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Sinha, P; Desai, N G; Prakash, O; Kushwaha, S; Tripathi, C B

2017-04-01

Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis. Cognitive assessment, abilities to perform activities of daily living and severity of dementia was assessed in the patients. Zarit Burden Interview was used to study the caregiver burden in both groups. The mean burden score in dementia caregivers was high at 47.7, whereas the mean burden score for elderly psychosis caregivers was lesser at 33.6, and this difference in mean burden scores was found to be statistically significant. Spouses had the highest mean burden scores of 53.48. Caregiver burden in dementia was positively correlated with cognitive impairment and inability to carry out ADLs. Presence of psychological distress in caregivers was also an indicator for greater caregiver burden in dementia. The study revealed that dementia carries a greater caregiver burden when compared with elderly patients with psychosis. Innovative interventions are needed to remove burden from caregiving, making it a meaningful practice integral to the Indian society. Copyright © 2017 Elsevier B.V. All rights reserved.

The lived experience of caregivers of persons with heart failure: A phenomenological study.

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Petruzzo, Antonio; Paturzo, Marco; Naletto, Monica; Cohen, Marlene Z; Alvaro, Rosaria; Vellone, Ercole

2017-10-01

Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. To describe the lived experience of the caregivers of HF patients. A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans.

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Stinson, Jennifer M; Collins, Robert L; Maestas, Kacey Little; Pacheco, Vitor; LeMaire, Ashley; Benge, Jared

2014-01-01

The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.

Accountability Practices in the History of Danish Primary

DEFF Research Database (Denmark)

Ydesen, Christian; Andreasen, Karen Egedal

2014-01-01

between different national settings. Furthermore, accountability measures and practices have an impact on both the ways and means by which societies approach their educational systems. Hence there is a need to clarify the characteristics and traits connected with the concept. One way of approaching......This paper focuses on primary education accountability as a concept and as an organizational practice in the histo-ry of Danish public education. Contemporary studies of education policy often address questions of accountability, but the manifestations of school accountability differ significantly...... this endeavor is to turn to the history of education, because the discourse and practice of accountability incorporates numerous historical antecedents, technologies, and arguments. Based on primary as well as secondary sources this article presents the case of Denmark, analyzing the period from 1660...

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

OpenAIRE

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressi...

Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability.

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Polenick, Courtney A; DePasquale, Nicole

2018-01-08

Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The burden on informal caregivers of people with bipolar disorder.

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Ogilvie, Alan D; Morant, Nicola; Goodwin, Guy M

2005-01-01

studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.

Rethinking Attachment: Fostering Positive Relationships between Infants, Toddlers and Their Primary Caregivers

Science.gov (United States)

Ebbeck, Marjory; Yim, Hoi Yin Bonnie

2009-01-01

This article provides a synthesis of current theory and research in relation to attachment between infants/toddlers and their caregivers. Worldwide statistics show that there are a significant number of women working in the global labour market. In Australia, recent research also found that over 300,000 children aged 0-5 years are currently…

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

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Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

2018-03-01

Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

Perceptions of schizophrenia and coping styles in caregivers: comparison between India and Switzerland.

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Rexhaj, S; Jose, A E; Golay, P; Favrod, J

2016-11-01

WHAT IS KNOWN ON THE SUBJECT?: Negative perceptions of illnesses can increase caregivers' use of ineffective coping strategies, which may increase their burdens and distress. Scientific and theoretical framework showed that culture and health organization system influence perception of illnesses and thus also has an impact on the coping strategies used. There is a lack of data on comparative perceptions of illnesses and coping styles between India and Switzerland and that is why this hypothesis needs to be confirmed. The comparison between two countries with large cultural and socioeconomics differences will provide a more significant impact. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This cultural comparative study explores the associations between representations of illness and three forms of coping styles (i.e. problem-focused, emotion-focused and social support-focused coping) among caregivers of people diagnosed with schizophrenia spectrum disorders in Mangalore, India, and in French-speaking Switzerland. Results showed significant differences between Swiss and Indian caregivers practically in all illness' perceptions and coping styles, which is in accord with the theoretical framework. However, two results showed also similarities: the perception that schizophrenia can have cyclical episodes and that it can have negative consequences for caregivers. These differences and similarities allow to confirm the hypothesis that culture and health organization system influence illness' perception which impact the used coping styles. However, to develop specific nursing interventions for each culture, more research is needed to specify qualitatively the content of these differences and similarities. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Knowledge of how culture influences perceptions and coping styles is essential to develop quality interventions. Nurses should evaluate caregivers' perceptions and the causes they attribute to illnesses to help them maintain or

Diabetes care provision in UK primary care practices.

Directory of Open Access Journals (Sweden)

Gillian Hawthorne

Full Text Available Although most people with Type 2 diabetes receive their diabetes care in primary care, only a limited amount is known about the quality of diabetes care in this setting. We investigated the provision and receipt of diabetes care delivered in UK primary care.Postal surveys with all healthcare professionals and a random sample of 100 patients with Type 2 diabetes from 99 UK primary care practices.326/361 (90.3% doctors, 163/186 (87.6% nurses and 3591 patients (41.8% returned a questionnaire. Clinicians reported giving advice about lifestyle behaviours (e.g. 88% would routinely advise about calorie restriction; 99.6% about increasing exercise more often than patients reported having received it (43% and 42% and correlations between clinician and patient report were low. Patients' reported levels of confidence about managing their diabetes were moderately high; a median (range of 21% (3% to 39% of patients reporting being not confident about various areas of diabetes self-management.Primary care practices have organisational structures in place and are, as judged by routine quality indicators, delivering high quality care. There remain evidence-practice gaps in the care provided and in the self confidence that patients have for key aspects of self management and further research is needed to address these issues. Future research should use robust designs and appropriately designed studies to investigate how best to improve this situation.

Caregiver Stress and Mental Health: Impact of Caregiving Relationship and Gender.

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Penning, Margaret J; Wu, Zheng

2016-12-01

This study compared the stress and mental health implications of caregiving to a spouse, children, siblings, other family members, friends, and others among middle-aged and older male and female caregivers. Multivariate regression analyses were conducted using 2007 Canadian General Social Survey data collected on a subsample of caregivers aged 45 and older. Our analyses revealed that for women, caring for a spouse or children was more stressful and detrimental to mental health than caring for parents or others. Similarly, for men, caring for a spouse and for children was more stressful than caring for others but did not adversely affect overall mental health. The findings suggest that spousal and child caregiving tend to be more rather than less stressful and detrimental to middle-aged and older caregivers' mental health than is caregiving to most others but that gender differences need to be considered. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

How Caregivers Make Meaning of Child Mental Health Problems: Toward Understanding Caregiver Strain and Help Seeking.

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Mayberry, Lindsay S; Heflinger, Craig Anne

Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.

Associations between child disabilities and caregiver discipline and violence in low- and middle-income countries.

Science.gov (United States)

Hendricks, Charlene; Lansford, Jennifer E; Deater-Deckard, Kirby; Bornstein, Marc H

2014-01-01

Using nationally representative samples of 45,964 two- to nine-year-old children and their primary caregivers in 17 developing countries, this study examined the relations between children's cognitive, language, sensory, and motor disabilities and caregivers' use of discipline and violence. Primary caregivers reported on their child's disabilities and whether they or anyone in their household had used nonviolent discipline, psychological aggression, and physical violence toward the target child and believed that using corporal punishment is necessary. Logistic regression analyses supported the hypothesis that children with disabilities are treated more harshly than children without disabilities. The findings suggest that policies and interventions are needed to work toward the United Nations' goals of ensuring that children with disabilities are protected from abuse and violence. © 2013 The Authors. Child Development © 2013 Society for Research in Child Development, Inc.

A resilience intervention involving mindfulness training for transplant patients and their caregivers.

Science.gov (United States)

Stonnington, Cynthia M; Darby, Betty; Santucci, Angela; Mulligan, Pamela; Pathuis, Patricia; Cuc, Andrea; Hentz, Joseph G; Zhang, Nan; Mulligan, David; Sood, Amit

2016-11-01

Solid organ and stem cell transplant patients and their caregivers report a substantial level of distress. Mindfulness-based stress reduction has been shown to alleviate distress associated with transplant, but there is limited experience in this population with other mindfulness-based interventions, or with combined transplant patient and caregiver interventions. We evaluated a novel, 6-week mindfulness-based resilience training (MBRT) class for transplant patients and their caregivers that incorporates mindfulness practice, yoga, and neuroscience of stress and resilience. Thirty-one heart, liver, kidney/pancreas, and stem cell transplant patients and 18 caregivers at Mayo Clinic in Arizona participated. Measures of stress, resilience, depression, anxiety, health-related quality of life, positive and negative affect, and sleep were completed at baseline, 6 weeks, and 3 months postintervention. At 6 weeks and 3 months, patients demonstrated significant (Presilience and manage stress for transplant patients and their caregivers. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

"I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

Science.gov (United States)

Vroman, Kerryellen; Morency, Jamme

2011-01-01

In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and…

Exploring caregiver burden experienced by family caregivers of patients with End-Stage Renal Disease in Nigeria

Directory of Open Access Journals (Sweden)

Yemisi Okikiade Oyegbile

Full Text Available Background: Family caregivers in many African countries bear the burden of caregiving alone, with the paucity of research, especially for caregivers of End-Stage Renal Disease patients, having concealed their needs. Aim: To explore the caregiver burden of family caregivers of End-Stage Renal Disease (ESRD patients in South-West Nigeria. Design: Following a complementary mixed method data collection strategy, the quantitative data was collected using the Zarit Burden Interview questionnaire to measure the burden of caregiving. Qualitative data was thereafter obtained through in-depth, individual interviews and was analysed using content analysis. Settings: The three research settings consisted of two state hospitals and one private hospital that provide renal care in South-West Nigeria. Result: The mean burden of caregiving for the sample was 50.18 thus indicating that family caregivers experienced moderate to severe burden, which is high compared to the other studies. The participants’ experiences of caregiving revealed the following categories: total dependence, acceptance of caregiving role, competing responsibilities, financial sacrifice and “not making mistakes”. Conclusion: Understanding the extent of caregiver burden, what constitutes burden to family caregivers in low/middle-income countries, and the difficulties associated with caregiving for care-recipients with ESRD, allows appropriate strategies and interventions to be developed. Keywords: End Stage Renal Disease, Family caregivers, Caregiver burden, Complementary mixed methods, Nigeria

Caregiver burden and correlates among caregivers of children and ...

African Journals Online (AJOL)

Journal of Child and Adolescent Mental Health ... Data on socio-demographic factors, psychiatric morbidity among caregivers, and level of caregiver burden was collected using a researcher-designed socio-demographic questionnaire, Mini International Neuropsychiatric Interview, and Zarit burden interview, respectively.

The Anxiety Level of Caregivers of Neurological Patients with Dysphagia.

Science.gov (United States)

Serel Arslan, Selen; Demir, Numan; Karaduman, A Ayşe

2017-08-01

We aimed to investigate anxiety level of caregivers of neurological patients with dysphagia, and the relationship of patient-related factors to anxiety level of dysphagia caregivers. A total of 103 adult neurological patients with dysphagia (study group), 30 without dysphagia (control group), and their primary caregivers were included. Types of feeding, condition of dependency in eating and drinking, dysphagia duration, and history of previous dysphagia treatment were recorded for study group. In study group, the Turkish version of the Eating Assessment Tool-10 (T-EAT-10) was used to determine dysphagia symptom severity. Penetration and aspiration severity was determined with the penetration-aspiration scale (PAS). The Spielberger State-Trait Anxiety Inventory (STAI) that has two subscales including state anxiety (S-STAI) and trait anxiety (T-STAI) was used to determine anxiety level of caregivers. There was no difference between groups in terms of age, gender, weight, and height. The mean S-STAI was 42.56 ± 10.10 for the study group and 29.20 ± 6.64 for the control group (p dysphagia treatment (p = 0.01, r = 0.25). No correlation was found between STAI (in terms of both S-STAI and T-STAI) and T-EAT-10, PAS, types of feeding, condition of dependency in eating and drinking, dysphagia duration (p > 0.05). Caregivers of neurological patients with dysphagia have greater anxiety level than caregivers of neurological patients without dysphagia.

Caregiver-youth communication about sex in South Africa: the role of maternal child sexual abuse history.

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Anthony, Elizabeth R; Hipp, Tracy N; Darnell, Doyanne A; Armistead, Lisa; Cook, Sarah L; Skinner, Donald

2014-01-01

Much of the research on child sexual abuse focuses on negative outcomes. This brief report explores a potentially protective parenting behavior among black South African female caregivers with and without a child sexual abuse history. Using cross-sectional baseline data, we hypothesized that caregiver child sexual abuse history would be positively associated with caregiver-youth sex communication and this relationship would be strongest for girls. Youth whose caregiver experienced child sexual abuse were more likely to report communicating with their caregiver about sex than youth whose caregivers did not experience child sexual abuse; however, this relation did not hold for caregiver reported communication. Child sexual abuse survivors' ability and decision to discuss sex with their youth has the potential to protect youth from sexual risk and demonstrates resilience among a group rarely acknowledged for positive parenting practices.

Caregiving Appraisal in Family Caregivers of Older Adults

Directory of Open Access Journals (Sweden)

Akram Farhadi

2016-04-01

Conclusion: Caregiving appraisal is a multidimensional concept, which has positive and negative aspects. By taking into account all aspects of this concept, one can better understand and ultimately has a more comprehensive assessment of the status of caregivers, and implement effective interventions towards improving the health of this group.

Clinical photography among African cleft caregivers

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Peter Babatunde Olaitan

2011-01-01

Full Text Available Objective: The aim of this paper is to document the practice of photography among clinicians whose daily work depends and is influenced so much by medical photography. Materials and Methods: Questionnaires documenting the bio data, place of practice, and experience of cleft caregivers with clinical photography were distributed. Knowledge of rules guiding clinical photography and adherence to them were also asked. Types of camera used were documented and knowledge of the value of clinical photographs were also inquired. Results: Plastic surgeons constitute the highest proportion of 27 (38.6%, followed by Oral and Maxillofacial surgeons with 14 (20.0%. Twenty one (30.0% of the respondents always, 21 (30.0% often, 12 (17.1% frequently, while 9 respondents sometimes took photographs of their patients. Suggested uses of clinical photographs included training, 52 (74.3%, education, 51 (72.9%, medicolegal, 44 (62.9% and advertisement, 44 (62.9% among others. Twenty two (31.4% did not know that there were standard guidelines for taking clinical photographs. Twenty three (32.9% of them did not seek the consent of the patients before taking clinical photographs. Conclusion: While the practice of clinical photography is high among African cleft caregivers, there is a need for further education on the issues of standard rules and obtaining consent from patients.

Changes in grouping practices over primary and secondary school

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Baines, Ed; Blatchford, Peter; Kutnick, P.

2003-01-01

The research detailed in this paper provides a systematic description and analysis of grouping practices in primary and secondary schools in England. Practices are compared to main findings in developmental and educational literature with regard to effective contexts for learning and recent ideas about pedagogy. The research is based on an analysis of 4924 groupings from 672 Reception, Year 2 and Year 5 classes in 331 primary schools and 248 Year 7 and Year 10 classes in 47 secondary schools....

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

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Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Medical home capabilities of primary care practices that serve sociodemographically vulnerable neighborhoods.

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Friedberg, Mark W; Coltin, Kathryn L; Safran, Dana Gelb; Dresser, Marguerite; Schneider, Eric C

2010-06-14

Under current medical home proposals, primary care practices using specific structural capabilities will receive enhanced payments. Some practices disproportionately serve sociodemographically vulnerable neighborhoods. If these practices lack medical home capabilities, their ineligibility for enhanced payments could worsen disparities in care. Via survey, 308 Massachusetts primary care practices reported their use of 13 structural capabilities commonly included in medical home proposals. Using geocoded US Census data, we constructed racial/ethnic minority and economic disadvantage indices to describe the neighborhood served by each practice. We compared the structural capabilities of "disproportionate-share" practices (those in the most sociodemographically vulnerable quintile on each index) and others. Racial/ethnic disproportionate-share practices were more likely than others to have staff assisting patient self-management (69% vs 55%; P = .003), on-site language interpreters (54% vs 26%; P primary care practices serving sociodemographically vulnerable neighborhoods were more likely than other practices to have structural capabilities commonly included in medical home proposals. Payments tied to these capabilities may aid practices serving vulnerable populations.

Predicting children's fussiness with vegetables:the role of feeding practices

OpenAIRE

Holley, Clare E.; Haycraft, Emma; Farrow, Claire

2017-01-01

Vegetables are commonly rejected by children, making it is important to consider factors that are associated with children's fussiness with vegetables. The current study aimed to investigate whether fussiness with vegetables is associated with a number of factors including caregiver and child vegetable consumption; caregivers' general feeding practices; and caregivers' vegetable-specific feeding practices. Caregivers (N = 297) of preschool children completed questionnaire measures of their ch...

Caregiving and travel patterns.

Science.gov (United States)

2013-06-01

This study explored the impact of caregiving for older adults on mobility and travel : patterns. Specifically, the focus was on how caregivers managed trips on behalf of : another who receives care. Caregiving is becoming increasingly common as the :...

Positive caregiving experiences are associated with life satisfaction in spouses of stroke survivors.

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Kruithof, Willeke J; Visser-Meily, Johanna M A; Post, Marcel W M

2012-11-01

Studies into caregivers usually have been focused on negative caregiving experiences. This study is based on the hypotheses that positive caregiving experiences (i.e., self-esteem derived from caregiving) of spouses of stroke patients also need to be taken into account, and that these are related to life satisfaction in 2 ways: first, by a direct association with life satisfaction, and second, indirectly by way of a buffer effect (i.e., by compensating for the impact of negative caregiving experiences on life satisfaction). In this cross-sectional study (n = 121) 3 years poststroke, the Caregiver Reaction Assessment was used to assess caregiver burden (Burden) and self-esteem derived from caregiving (Self-esteem scale). Life satisfaction was measured with the Life Satisfaction Questionnaire (LiSat-9). Spearman correlations and regression analyses were performed. Both Self-esteem and Burden scores were associated with life satisfaction (correlation coefficients 0.35 and -0.74, respectively). An interaction effect was also found (P = .006); spouses who perceived both high Burden and high Self-esteem reported significantly higher life satisfaction scores (mean 4.2, standard deviation [SD] 0.5) than spouses who perceived high Burden but low Self-esteem (mean 3.6, SD 0.7). Positive caregiving experiences are related to spouses' life satisfaction 3 years poststroke and mediate the impact of burden on life satisfaction. Positive caregiving experiences should get more attention in rehabilitation research and practice. Copyright © 2012 National Stroke Association. Published by Elsevier Inc. All rights reserved.

Dietary Behaviors and Caregiver Perceptions of Overweight and Obesity among Chinese Preschool Children.

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