Blusi, Madeleine; Kristiansen, Lisbeth; Jong, Mats
Many older spouse caregivers are tied to the home by their caring duties and feel isolated. The values of supporting older caregivers are well known. In rural areas with long distances and decline in essential services, attending caregiver support groups can be difficult. Using Internet-based services can provide an opportunity for rural caregivers to participate in caregiver support, regardless of geographical distances and without the need for physical presence. This study aimed to explore how Internet-based caregiver support may influence the experience of isolation among older spouse caregivers in rural areas. An intervention study where 63 older rural caregivers received an Internet-based caregiver support service. A qualitative interview study based on 31 interviews with open-ended questions, analysed using latent content analysis. Two themes represent the findings from the study: Expanding the concept of place and Developing networks. Even though participants still spent their days in the house, they experienced that daily life was being spent in a variety of places, both physically, virtually and emotionally. The Internet-based support service provided them with a tool to reconnect with family and develop new friends. Internet-based caregiver support may reduce the experience of isolation for spouse caregivers in rural areas. Nurses played a crucial part in the development, by encouraging, educating and inspiring caregivers and supporting their independence. Internet-based services ought to be an option for caregiver support in rural areas as it may reduce feelings of isolation for older spouse caregivers. © 2014 John Wiley & Sons Ltd.
Hudson, Peter; Aranda, Sanchia
A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Hudson, Peter; Aranda, Sanchia
Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195
Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J
Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Shiba, Koichiro; Kondo, Naoki; Kondo, Katsunori
Background We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P supports (β = −1.55, P support. Conclusions Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden. PMID:27180934
Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann
Purpose of the Study The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. Design and Methods A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Results Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign. PMID:28690707
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.
Idalski Carcone, April; Ellis, Deborah A; Weisz, Arlene; Naar-King, Sylvie
The aim of this research study was to examine the relationship between 4 sources of social support (support for the adolescent from family, support for the adolescent from friends, support for the caregiver from another adult, and support to the family from the health care provider) and adolescents' diabetes outcomes (illness management behavior and health status) using a diverse sample of urban adolescents. One hundred forty-one adolescents with insulin-managed diabetes and their primary caregivers completed questionnaires assessing social support and illness management behavior. Glucose meters were downloaded and hemoglobin A1c assays were obtained. Structural equation modeling was used to test a model social support informed by social ecological theory. The results of the structural equation modeling indicated that support for the caregiver from another adult was directly and positively related to support for the adolescent from family and indirectly related to better illness management. Support for the adolescent from family was directly related to better diabetes management and, through better management, to better diabetes health. Support to the family from the health care provider was not related to support for the adolescent and support to the adolescent from friends was not related to illness management, as hypothesized. This study identifies a novel target for social support intervention to improve adolescents' illness management behavior-the caregivers of adolescents with diabetes. By enhancing the social support caregivers receive from other adults in their lives, caregivers' ability to support their adolescent children with diabetes might also be improved which, in turn, improves adolescents' illness outcomes.
Mains, Douglas A; Fairchild, Thomas J; René, Antonio A
The Comprehensive Caregiver Choices Program provided support for employee caregivers of elderly people for employees at a hospital in Fort Worth, Texas. Key informant interviews and focus groups provided direction for program development and implementation. A full-time MSW and professionals with expertise in gerontology/geriatrics provided education and care coordination services to caregivers. Approximately 4% of the hospital's workforce participated in the program. Attendees evaluated educational sessions and follow-up interviews were conducted with program participants. Caregiver support programs must continue to seek innovative and creative marketing and service delivery methods to reach out and assist working caregivers in need of support.
Glueckauf, Robert L; Loomis, Jeffrey S
Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are faced with a variety of emotional and behavioral difficulties, such as dealing with persistent, repetitive questions, managing agitation and depression, and monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, most dementia caregivers continue to receive little or no formal instruction in responding effectively to these challenges. The current paper describes the development and implementation of Alzheimer's Caregiver Support Online, a Web- and telephone-based education and support network for caregivers of individuals with progressive dementia. Lessons learned from the first two years of this state-supported initiative are discussed, followed by the findings of a Robert Wood Johnson Foundation-funded strategic marketing initiative and an initial program evaluation of AlzOnline's Positive Caregiving classes. Finally, clinical implications and future directions for program development and evaluation research are proposed.
Abu Bakar, Siti Hajar; Weatherley, Richard; Omar, Noralina; Abdullah, Fatimah; Mohamad Aun, Nur Saadah
This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers. © 2013 John Wiley & Sons Ltd.
Al Awar, Zeina; Kuziemsky, Craig
Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.
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Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…
Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell
Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races.
Finley, Joanne P
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.
Harvey-Knowles, Jacquelyn; Faw, Meara H
Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.
Marziali, Elsa; Garcia, Linda J
The aim of this study was to examine the impact on dementia caregivers' experienced stress and health status of 2 Internet-based intervention programs. Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group. Pre-post outcome measures focused on distress, health status, social support, and service utilization. In contrast to the Chat Group, the Video Group showed significantly greater improvement in mental health status. Also, for the Video Group, improvements in self-efficacy, neuroticism, and social support were associated with lower stress response to coping with the care recipient's cognitive impairment and decline in function. The results show that, of 2 Internet-based intervention programs for dementia caregivers, the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response.
Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida
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.
Williams, Allison M; Wang, Li; Kitchen, Peter
This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.
Schoeder, Chrystal Edge; Remer, Rory
The research on Tourette's disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver…
Wang, Kai-Wei K; Lin, Hung-Ching; Lee, Chin-Ting; Lee, Kuo-Sheng
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.
LaValley, Susan A; Gage-Bouchard, Elizabeth A
Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.
Ergh, Tanya C; Hanks, Robin A; Rapport, Lisa J; Coleman, Renee D
Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.
Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei
Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.
Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat
Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.
Dannielle E. Kelley
Full Text Available Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012 and the first round of the associated National Study of Caregivers survey (2011. Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network. Keywords: Informal caregiving, Social support, Social support network, Patient-caregiver dyads
Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit
We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p Family caregiver burden were also higher in depressive groups (p family caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.
Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho
Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.
Burnley, C S
Even though filial caregivers are typically daughters rather than sons, examinations of caregiving have not adequately considered the impact of gender and marital status differences on the support systems that mediate the strain of caring. Because of competing demands on time and energy, caregivers make many changes in their personal activities while maintaining work and immediate family responsibilities. The friendships that provide emotional support for singles are perceived as less important than familial relationships. Therefore, the assumption is made that the single adult daughter has less to give up as compared to her married siblings. The parallel emotional support systems of the married and single caregivers go unrecognized. This study of never-married women over age 30 reveals that these caregivers essentially foreclosed social relationships in order to provide care. Copyright © 1987. Published by Elsevier Inc.
Kitter, Bryony; Sharman, Rachael
This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Semi-structured interviews were conducted with caregivers (n = 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers' support needs and coping strategies. Two specific findings of interest include a negative association between severity of brain injury and caregiver's desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia's upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.
Ali Yavuz Karahan
Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with
Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed
Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.
Marceglia, Sara; Rossi, Elena; Rosa, Manuela; Cogiamanian, Filippo; Rossi, Lorenzo; Bertolasi, Laura; Vogrig, Alberto; Pinciroli, Francesco; Barbieri, Sergio; Priori, Alberto
The increasing number of patients, the high costs of management, and the chronic progress of the disease that prevents patients from performing even simple daily activities make Parkinson disease (PD) a complex pathology with a high impact on society. In particular, patients implanted with deep brain stimulation (DBS) electrodes face a highly fragile stabilization period, requiring specific support at home. However, DBS patients are followed usually by untrained personnel (caregivers or family), without specific care pathways and supporting systems. This projects aims to (1) create a reference consensus guideline and a shared requirements set for the homecare and monitoring of DBS patients, (2) define a set of biomarkers that provides alarms to caregivers for continuous home monitoring, and (3) implement an information system architecture allowing communication between health care professionals and caregivers and improving the quality of care for DBS patients. The definitions of the consensus care pathway and of caregiver needs will be obtained by analyzing the current practices for patient follow-up through focus groups and structured interviews involving health care professionals, patients, and caregivers. The results of this analysis will be represented in a formal graphical model of the process of DBS patient care at home. To define the neurophysiological biomarkers to be used to raise alarms during the monitoring process, neurosignals will be acquired from DBS electrodes through a new experimental system that records while DBS is turned ON and transmits signals by radiofrequency. Motor, cognitive, and behavioral protocols will be used to study possible feedback/alarms to be provided by the system. Finally, a set of mobile apps to support the caregiver at home in managing and monitoring the patient will be developed and tested in the community of caregivers that participated in the focus groups. The set of developed apps will be connected to the already
Kelley, Dannielle E; Lewis, Megan A; Southwell, Brian G
Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health. We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016. Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2. Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.
Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti
Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…
Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana
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
Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F
ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.
Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced
Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet
Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.
Alyne Kalyane Câmara de Oliveira
Full Text Available In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP, as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregivers, and 25 rehabilitation professionals who care for children in health institutions from the countryside of São Paulo state, Brazil. The following measuring instruments were used: the Gross Motor Function Classification System for Cerebral Palsy, the Lipp’s Inventory of Stress Symptoms in Adults, the Social Support Questionnaire, and a form identifying the participants. Data were analyzed using descriptive and inferential statistics by the following tests: Chi-square, Fisher exact, Mann-Whitney, Kruskal-Wallis, and Odds Ratio. The results showed stress among the participating caregivers (66%, with predominance of the resistance phase (93.9% and psychological symptoms (69.7%, low perceived social support for caregivers, concomitant with an adequate satisfaction with the support received, as well as significant relationships of stress versus social support (p = 0.017 and education level versus social support (p = 0.037. The data allow analysis of the relationship between the variables investigated and about the impact of having a child with CP in the family regarding the physical, emotional and psychological well-being of caregivers, besides providing subsidies to think of strategies at different levels of care for families of children with disabilities.
Bahrami, Masoud; Farzi, Saba
The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer. The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life - Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention. The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the
Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I
For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of
Winnie PY Tang
Full Text Available Diagnosed with cancer is a traumatic event; it does not only affect the diagnosed patients, but also their caregivers. It brings along negative impacts on biopsychosocial health to the caregivers. Supportive interventions are essential for the caregivers to go through the cancer trajectory. In the past, interventions were being delivered in either face-to-face format or delivering written documents. Although Internet becomes a popular platform for delivering interventions given its substantial growth in usage, the effectiveness of this mode of intervention delivery is unclear. The aim of this review is to review existing literatures regarding efficacy of web-based interventions in psychological outcomes of cancer caregivers. A Literature search was performed in December 2012 from seven databases, including, Ovid MEDLINE, EMBASE, PsycINFO, CINHAL, ERIC, British Nursing Index and EBM Reviews. The following keywords were used in the search but were not limited to "paediatric", "parent", "caregiver", "cancer", "web-based", and "psycho education". Totally 4668 citations were identified, after excluding the duplicated and irrelevant citations; finally six studies were included in this review. A review of the literatures identified that the web-based interventions including either online support group only or a combination of informational website and online support group significantly improved coping skills, in a way reduced anxiety, stress, depression, burden, as well as negative mood and perceived bonding in cancer caregivers. It is concluded that a web-based format as a potential platform for delivering intervention to the caregivers of cancer patients for its unique advantage of easy accessibility, and no geographic or time barriers.
Hansell, P S; Hughes, C B; Caliandro, G; Russo, P; Budin, W C; Hartman, B; Hernandez, O C
Caring for the human immunodeficiency virus (HIV)-infected child is challenging and affects the entire family system. Studies have shown that social support can mitigate caregiver stress and enhance coping; however, social support may not always result in a positive outcome for the recipient. To measure caregiver stress, coping, and social support, and to test the effect of a social support boosting intervention on levels of stress, coping, and social support among caregivers of children with HIV/acquired immune deficiency syndrome (AIDS). An experimental design was used with monthly social support boosting interventions implemented. The stratified randomized sample included 70 primary caregivers of children with HIV/AIDS. The sample strata were seropositive caregivers (biological parents) and seronegative caregivers (foster parents and extended family members). Study measures included the Derogatis Stress Profile, Family Crisis Oriented Personal Evaluation Scale, and the Tilden Interpersonal Relationship Inventory. Data were analyzed using descriptive statistics and repeated measure MANOVA. Statistically significant differences between the experimental and control groups were found on changes in the dependent variables over time when caregiver strata were included as a factor in the analysis; no statistically significant results were found when caregiver strata were combined. Univariate Ftests indicated that the level of social support for caregivers who were seronegative in the experimental group was significantly different from seronegative caregivers in the control group and seropositive caregivers in both groups. No significant treatment group differences were found for seropositive caregivers. Seronegative caregivers derived substantial benefit from the social support boosting intervention. Seronegative caregivers who acquire a child with HIV/AIDS are confronted with a complex stressful situation; the critical need to enhance their social support is
Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van
Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in
Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van
OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in
Clayton, Margaret F; Hulett, Jennifer; Kaur, Kirandeep; Reblin, Maija; Wilson, Andrew; Ellington, Lee
To describe nurse-caregiver communication on the day of patient death. . A descriptive secondary analysis of 44 audio-recorded home hospice nursing visits on day of death. . Nine hospices in Utah, Oregon, and Massachusetts. . 42 caregiver-patient dyads, 27 hospice nurses. . Transcripts of audio recordings were coded for supportive nursing communication and relative time spent in physical, psychosocial, and spiritual discussion. . Tangible, emotional, informational, esteem, and networking supportive communication; nurses' self-reported communication effectiveness; caregiver religious affiliation. . Nurses reported that their communication skills were less effective when discussing difficult topics as compared to their overall communication effectiveness. Eleven patients died before the nursing visit, 3 died during the visit, and 30 died post-visit. Nurses primarily engaged in discussions facilitating caregiver emotional, tangible, and informational support. More informational support was observed when patient death occurred during the nursing visit. Time spent in general conversation showed that physical care conversations predominated (80% of the average overall amount of conversation time), compared to lifestyle/psychosocial discussions (14%) and spiritual discussions (6%). Spiritual discussions were observed in only 7 of 44 hospice visits. Spiritual discussions, although short and infrequent, were significantly longer, on average, for caregivers without a religious affiliation. . Nurses support caregivers on the day of patient death using multiple supportive communication strategies. Spiritual discussions are minimal. . Communication skills programs can potentially increase self-reported communication effectiveness. Emerging acute spiritual concerns, particularly for caregivers without a previous religious affiliation, should be anticipated. Spiritual support is included in the hospice model of holistic care.
Greenhawt, Matthew; Chan, Edmond S; Fleischer, David M; Hicks, Allison; Wilson, Rachel; Shaker, Marcus; Venter, Carina; Stukus, David
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.
Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.
Møller Jensen, Jette; Hageman, Michelle; Bang Løyche Lausen, Patrick
In 2017 it was believed that nearly 50mio people suffered from dementia. Besides the actual patients, the group that is mostly affected by this disease are informal caregivers. Informal caregivers -- people without a formal education in the field of health care -- can suffer from severe physical-......-based Virtual Reality game and how it can inform informal caregivers about symptoms of dementia. Our initial exploration demonstrates the potential that such a game holds in supporting informal caregivers....
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.
Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia
Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data
Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip
Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by
Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili
Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family…
Jaffray, Linda; Bridgman, Heather; Stephens, Miranda
guidelines and a Narrative synthesis. Data sources: The Cochrane Library, CINAHL, MEDLINE, PsycINFO and EMBASE databases, searched from inception to February 2014 and references of included studies. Results: A total of 13 articles, reporting 10 studies (n = 432 participants) were included. All studies were......Background: There is a need to identify proactive, evidence-based interventions to support informal palliative caregivers. Mindfulness-based interventions, evidenced in the literature as providing physical and mental health benefits for diverse populations, may have application in the setting...... of palliative caregiving. Aim: To describe, evaluate and synthesise the peer-reviewed literature on the effects of mindfulness-based interventions for informal palliative caregivers. Design: A Systematic Literature Review according to the Preferred Reporting Items for Systematic Review and Meta Analyses...
Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L
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.
Wilks, Scott E; Spurlock, Wanda R; Brown, Sandra C; Teegen, Bettina C; Geiger, Jennifer R
Research shows African Americans at greater risk of developing Alzheimer's disease (AD) compared to the Caucasian population, suggesting African American AD caregivers are rising in numbers at a greater rate than Caucasian counterparts. Over a decade ago, an article in Geriatric Nursing revealed spiritual well-being differences among these caregiver groups. The purpose of this study was a quasi-follow-up, utilizing a larger caregiver sample to test spiritual support as a moderator via a risk-and-resilience framework. Secondary data analysis from a sample of 691 AD caregivers examined data on demographics and standardized measures of spiritual support, caregiver burden, and psychological resilience. One-third of the sample reported as African American. Resilience negatively regressed, though not significantly, on caregiving burden among both groups. Spiritual support positively, significantly impacted resilience among both groups, slightly stronger among African Americans. Spiritual support did not significantly moderate risk with either group. Implications for professional healthcare practice are discussed. Copyright © 2018 Elsevier Inc. All rights reserved.
Shepherd-Banigan, Megan; Smith, Valerie A.; Stechuchak, Karen M.; Miller, Katherine E. M.; Hastings, Susan Nicole; Wieland, Gilbert Darryl; Olsen, Maren K.; Kabat, Margaret; Henius, Jennifer; Campbell-Kotler, Margaret; Van Houtven, Courtney Harold
Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions. PMID:29591540
Ma, Gloria Y K; Mak, Winnie W S
The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A.; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J.
Background Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. Objective The purpose of this review is to analyse the relationship of perceived and received social support with subjective...
Solli, Hilde; Bjørk, Ida Torunn; Hvalvik, Sigrun; Hellesø, Ragnhild
To explore the relationships that emerge amongst caregivers of persons with dementia and stroke when caregivers use written messages as their communication tool in a closed information and communication technology (ICT)-based support group. An explorative design with a qualitative approach was used that applied systematic text condensation (STC) to analyse 173 written messages extracted from a web forum. Empathetic, empowering and familiar relationships emerged amongst peers of older caregivers when the caregivers used written messages as their communication tool. The empathetic relationship was characterised by sincerity and openness when the caregivers shared emotions related to caregiving. The empowering relationship reflected a fellowship based on solidarity influenced by a sense of optimism and a willingness to share knowledge to support one another in overcoming challenges. In the familiar relationship, the caregivers were thoughtful and good-humoured with one another and displayed an attitude of consideration towards one another, as in an extended family. The use of computer-mediated communication in health care service will change the context of establishing and maintaining interpersonal relationships. Therefore, greater knowledge regarding how the peers of caregivers interact with one another is vital so nurses may better support and educate ICT-based support groups.
Wilks, Scott E; Croom, Beth
The study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. A cross-sectional analysis of self-reported data was conducted. Measures of demographics, perceived stress, family support, friend support, overall social support, and resilience were administered to caregiver attendees (N=229) of two AD caregiver conferences. Hierarchical regression analysis showed the compounded impact of predictors on resilience. Odds ratios generated probability of high resilience given high stress and social supports. Social support moderation and mediation were tested via distinct series of regression equations. Path analyses illustrated effects on the models for significant moderation and/or mediation. Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.
Markoulakis, R; Turner, M; Wicik, K; Weingust, S; Dobbin, K; Levitt, A
Roles for peer support workers are increasingly recognized as a valuable component of mental health and addictions (MHA) services. In youth MHA care, caregivers are often closely involved in finding and accessing services and may also require support for themselves, yet caregiver peer support is not readily available in existing service delivery models. In order to understand the potential role and value of a caregiver peer support worker in a Family Navigation service, a descriptive qualitative study was conducted to explore the needs and potential value of a peer worker from caregiver client perspectives. Study findings indicate that a caregiver peer support worker can provide support for engaging in the caregiving role, utilize lived experience as a skill, and complement navigation support through lived experience. The discussion highlights implications for the implementation of a caregiver peer role at a family-focused service as well as implications for peer work within the MHA system.
Casale, Marisa; Wild, Lauren; Cluver, Lucie; Kuo, Caroline
Caring for children can be a source of joy and fulfilment, but also a source of stress, especially for caregivers living with illness and/or coping with difficult socio-economic conditions. Risks for poor caregiver mental health are especially salient in many parts of southern Africa affected by a generalised HIV-epidemic, high rates of physical illness, difficult livelihood conditions and an increasing number of orphaned and vulnerable children in need of care. Given limited availability and low uptake of formal mental health services in South Africa, the potential protective role of informal community or "social" resources for caregiver populations requires greater attention. To our knowledge, this is the first study to quantitatively assess the relationship between social support and symptomatic anxiety among caregivers of children living in HIV-endemic southern African communities. The data are from household survey interviews with 2477 adult primary caregivers of children aged 10-17 years living in two (urban and rural) resource-deprived HIV-endemic South African communities. Hierarchical logistic regression analysis with interaction terms was conducted to assess whether HIV and other illness were significant stressors for caregiver anxiety, whether social support had main or stress-buffering protective effects on anxiety and whether gender moderated the association between social support and anxiety. Our findings showed significant main effects of social support on caregiver anxiety, but no evidence of stress-buffering effects of support or of gender moderating the support-anxiety relationship. This suggests that social support is a general mental health resource for both male and female caregivers of children in these HIV-endemic communities, regardless of whether they are facing specific stressors related to HIV or other illness. Our results highlight the importance of paying greater attention to the social environment when designing and implementing
Ong, Hui Lin; Vaingankar, Janhavi Ajit; Abdin, Edimansyah; Sambasivam, Rajeswari; Fauziana, Restria; Tan, Min-En; Chong, Siow Ann; Goveas, Richard Roshan; Chiam, Peak Chiang; Subramaniam, Mythily
The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.
Guay, Cassioppée; Auger, Claudine; Demers, Louise; Mortenson, W Ben; Miller, William C; Gélinas-Bronsard, Dominique; Ahmed, Sara
When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions. This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought. A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed. A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and
Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin
Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…
DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Berkman, Lisa F; Cabot, Thomas D
This study examined how women who combine long-term care employment with unpaid, informal caregiving roles for children (double-duty-child caregivers), older adults (double-duty-elder caregivers), and both children and older adults (triple-duty caregivers) differed from their workplace-only caregiving counterparts on workplace factors related to job retention (i.e., job satisfaction and turnover intentions) and performance (i.e., perceived obligation to work while sick and emotional exhaustion). The moderating effects of perceived spouse support were also examined. Regression analyses were conducted on survey data from 546 married, heterosexual women employed in U.S.-based nursing homes. Compared to workplace-only caregivers, double-duty-elder and triple-duty caregivers reported more emotional exhaustion. Double-duty-child caregivers reported lower turnover intentions and both double-and-triple-duty caregivers felt less obligated to work while sick when perceiving greater support from husbands. Results indicate that double-and-triple-duty caregiving women's job retention and obligation to work while sick may depend on perceived spouse support, highlighting the important role husbands play in their wives' professional lives. Findings also lend support to the emerging literature on marriage-to-work positive spillover, and suggest that long-term care organizations should target marital relationships in family-friendly initiatives to retain and engage double-and-triple-duty caregiving employees. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Spreeuwenberg Peter MM
Full Text Available Abstract Background This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO and the Knowledge Centre on Ageing (Vilans, instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia. Methods In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly and support needs on the other hand. Results Almost all informal caregivers (92.6% received some professional support. However, two thirds (67.4% indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law: spouses relatively often need emotional support and sons or daughters (in-law more often need information and coordination of dementia care. Conclusions Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with
Mahoney, Diane M F; Mutschler, Phyllis H; Tarlow, Barbara; Liss, Ellen
The objective of this research was to determine the feasibility of and receptivity to the first computerized workplace-based direct caregiver intervention and to assess the effects on businesses, working family caregivers, and their elderly relatives. Working family caregivers, with at least one health and/or safety concern related to an elder residing alone at home during the workday, were recruited from five companies (n = 27). Caregivers received free computer access to the Worker Interactive Networking (WIN) Internet online caregiver support group and a remote elder monitoring system at home for 6 months. The remote monitoring system provided Web-based status reports and e-mail/pager alerts when individualized parameters were exceeded. Motion sensor signals were transmitted to a transponder that uploaded via wireless cellular communications to the project server, thereby not interfering with elders' telephone use. Formative qualitative analyses clarified acceptance and implementation issues. Summative quantitative evaluation determined pilot intervention effects and was conducted by external evaluators. Despite interoperability and cellular reception issues, the system was successfully deployed across four states to a variety of businesses and housing types. Positive results occurred on worker morale, productivity, and reduction of caregiver stress. Participants found it easy to learn and use. Elders did not find the technology "intrusive" or "isolating." Contrary to their expectations, managers reported no abuse of Internet access. Workers expressed a willingness to pay for a similar system in the future ranging from $10 to $130, depending on the features. They would pay the most for the option involving a geriatric nurse coach. The WIN system innovatively tailored to users' wants, and provided users customized control and personalized support. Use of the system was associated with positive outcomes. Enrollment response suggests a specific niche market for
Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha
The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bademli, Kerime; Duman, Zekiye Çetinkaya
"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.
Brand, Charles; Barry, Lorna; Gallagher, Stephen
The psychosocial pathways underlying associations between benefit finding and quality of life are poorly understood. Here, we examined associations between benefit finding, social support, optimism and quality of life in a sample of 84 caregivers. Results revealed that quality of life was predicted by benefit finding, optimism and social support. Moreover, the association between benefit finding and quality of life was explained by social support, but not optimism; caregivers who reported greater benefit finding perceived their social support be higher and this, in turn, had a positive effect on their overall quality of life. These results underscore the importance of harnessing benefit finding to enhance caregiver quality of life. © The Author(s) 2014.
Oh, Juyeon; Kim, Jung A
To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Scoping review. We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals
Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan
Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.
Candy, Bridget; Jones, Louise; Drake, Robyn; Leurent, Baptiste; King, Michael
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
Beauchamp, Natasha; Irvine, A Blair; Seeley, John; Johnson, Brian
Our goal was to evaluate the efficacy of a multimedia support program delivered over the Internet to employed family caregivers of persons with dementia. The evaluation of this program involved 299 employed family caregivers participating in a pretest-posttest randomized clinical trial with a 30-day follow-up and a waitlist control condition. Validated instruments include the Center for Epidemiologic Studies-Depression scale, the State-Trait Anxiety Inventory, the Caregiver Strain scale from Benjamin Rose, and Positive Aspects of Caregiving used in the nationwide REACH study. Those who viewed Caregiver's Friend: Dealing with Dementia 30 days postexposure demonstrated significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy, and intention to seek help, as well as perceptions of positive aspects of caregiving. Interactive multimedia interventions delivered over the Internet appear to be uniquely suited to provide low-cost, effective, convenient, individually tailored programs that present educational information, cognitive and behavioral skills, and affective learning opportunities. This makes Web-based multimedia a promising avenue for work-life balance programs, employee-assistance providers, and organizations interested in improving family caregiver health and well-being.
DiLauro, Michelle; Pereira, Amanda; Carr, Jennifer; Chiu, Mary; Wesson, Virginia
Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
Willemse, Evi; Anthierens, Sibyl; Farfan-Portet, Maria Isabel; Schmitz, Olivier; Macq, Jean; Bastiaens, Hilde; Dilles, Tinne; Remmen, Roy
Informal caregivers are essential figures for maintaining frail elderly at home. Providing informal care can affect the informal caregivers' physical and psychological health and labour market participation capabilities. They need support to prevent caregiver burden. A variety of existing support measures can help the caregiver care for the elderly at home, but with some limitations. The objective of this review was to explore the experiences of informal caregivers caring for elderly in the community with the use of supportive policy measures in Belgium and compare these to the experiences in other European countries. An empirical qualitative case study research was conducted in five European countries (Belgium, The Netherlands, Luxembourg, France and Germany). Semi-structured interviews were conducted with informal caregivers and their dependent elderly. Interview data from the different cases were analysed. In particular data from Belgium was compared to data from the cases abroad. Formal services (e.g. home care) were reported to have the largest impact on allowing the caregiver to care for the dependent elderly at home. One of the key issues in Belgium is the lack of timely access to reliable information about formal and informal services in order to proactively support the informal caregiver. Compared to the other countries, informal caregivers in Belgium expressed more difficulties in accessing support measures and navigating through the health system. In the other countries information seemed to be given more timely when home care was provided via care packages. To support the informal caregiver, who is the key person to support the frail elderly, fragmentation of information regarding supportive policy measures is an important issue of concern.
Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G
We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.
Jukic P, Nikolina; Gagliardi, Cristina; Fagnani, Donata; Venturini, Claudia; Orlandoni, Paolo
The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". This qualitative study underlined the challenges and adaptations of
Phillips, Linda R; Crist, Janice
Sometimes, clinicians assume caregivers in cultural groups believed to have large social networks and strong social support need little intervention from health professionals. This longitudinal study tests five hypotheses about the social relationships of Mexican American compared to non-Hispanic White caregivers and whether negative changes in social support affect perceived health. The sample includes 66 Mexican American and 92 non-Hispanic White caregivers. Findings show that social networks and social support are similar at baseline and similarly stable for 1 year. Negative changes in social support are correlated with poorer health perceptions. Findings underscore the importance of designing interventions that are culturally competent based on what the caregiver is experiencing rather than cultural stereotypes.
Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R
By providing care for loved ones in the home, family caregivers save millions of dollars for our overtaxed healthcare system. Support groups can lighten the psychological burden of caregiving. Nonprofessionally facilitated (or peer) online caregiver support groups can help meet a critical need in healthcare as a low-cost resource for caregivers. Online caregiver peer support groups can promote the health and well-being of family caregivers and, by extension, the patients themselves, resulting in cost-savings for society. A better understanding of these types of groups is of critical importance, given the unrelenting pace of demographic shift in the United States. The purpose of this study was to examine content themes emerging from an unstructured, asynchronous online peer support group for family caregivers of people with chronic illness. Qualitative content analysis was used, yielding six themes: "experiencing the emotional toll," "need for catharsis/venting," "finding the silver linings," "seeking specific advice/problem solving," "realizing home is no longer a haven," and "adapting to the caregiver role." The themes reflect what emerged organically in an online support group that was not professionally facilitated or structured in any way. Heterogeneity in the relationship between caregivers and care recipients may negatively affect outcomes and requires further study.
Davis, Kadian; Owusu, E.B.; Regazzoni, C.S.; Marcenaro, Lucio; Feijs, Loe; Hu, Jun; Holzinger, Andreas; Röcker, Carsten; Fred, Ana; Helfert, Markus; O'Donoghue, John; Ziefle, Martina
This position paper describes a smart-phone based activity recognition system for improving social connectedness between caregivers and their elderly relatives. Sensing technologies can enable real-time monitoring to provide activity recognition in order to support health and safety among the
Del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J
Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult. A systematic search was carried out up to September 2017 in the following databases: MEDLINE (PubMed), CINAHL, EMBASE, PsycINFO), Scopus and ISI Proceedings, and a meta-analysis was performed with the results of the selected and included studies. Fifty-six studies were included in the meta-analysis, which provided 46 independent comparisons for perceived support and 16 for received support. Most of these studies were cross-sectional. There was a moderate, negative association of perceived social support on subjective burden (r = -0.36; CI 95% = -0.40, -0.32) and a very small, negative association of received support on subjective burden (r = -0.05; CI 95% = -0.095, -0.001). 1) perceived and received support are not redundant constructs, 2) the relationships between social support and subjective burden depend on whether the social support is measured as perceived or received, 3) the relationship of perceived social support with subjective burden has a bigger effect size than that of received social support, the relation between received support and subjective burden being clinically irrelevant, 4) perceived social support may be a good predictor of subjective burden. Our findings broadly support interventions promoting social support in caregivers to prevent or alleviate subjective burden, and specifically, to intervene on the promotion of perceived social support more than on the promotion of received social support when preventing or
Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo
[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.
Casado, Banghwa; Sacco, Paul
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.
Al Daken, Laila I; Ahmad, Muayyad M
This review aims to determine the effectiveness of mindfulness-based interventions (MBIs) and educational interventions (EIs) as supportive care for family caregivers (FCs) of patients with cancer. Review was conducted following PRISMA guidelines. The search protocol was performed using EBSCO, Google Scholar, and Science Direct for the studies published between 2007 and 2017. Little evidence is available on the usefulness of MBIs among FCs of patients with cancer. However, the available evidence supports that MBIs have the potential to enhance overall well-being and reduce the burden for FCs. EIs have shown positive outcomes on some aspects of well-being and reducing the burden. The findings provide preliminary support for effectiveness of MBIs and EIs as a supportive care for FCs. © 2018 Wiley Periodicals, Inc.
Nardi, Edileuza de Fátima Rosina; de Oliveira, Magda Lúcia Félix
The elderly suffering disability caused by diseases need a network of support in order to continue feeling socially active. This study aims at characterizing the social support provided to the family caregiver who looks after an elderly dependent, in Brazil. A descriptive study with qualitative approach was conducted at the municipality of Jandaia do Sul, Paraná, Brazil. Data collection was performed through semi-structured interviews with 19 primary family caregivers. Data analysis was based on Thematic Analysis. The results show that when it comes to informal sources, the reference to grown up children was mostly used, while as formal ones Unidade Básica de Saúde, the Brazilian Basic Health Unit, and the team from Programa Saúde da Familia, Brazilian Pro-Family Health Program, were referred to. However, the image of Community Health Agent was the most mentioned. Thus, it is necessary to create support nets to integrate both formal and informal systems.
von Heymann-Horan, Annika Berglind; Puggaard, Louise Berg; Nissen, Kathrine Grovn
Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We...... present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. The Domus model of SPC for patients with incurable cancer...... and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate...
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress...... and burden. It is unclear how support groups can produce a meaningful and optimal outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review...... that through comparison and sharing positive and negative emotions, the members of the support group are able to take on and maintain the role as caregiver....
Egan, Kieren J; Pinto-Bruno, Ángel C; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne-Margriet
Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and support programs hold considerable promise for scaling up, we reviewed existing literature. We systematically searched 6 databases to identify studies of Internet-based interventions designed to train and support caregivers of people with dementia, and we formally assessed risk of bias. Our prespecified primary outcomes of interest included both mental health and caregiver burden/perceived stress. Our secondary outcomes of interest included knowledge, quality of life of caregivers, quality of care, caregiver response to challenging behaviors, coping, and self-efficacy. Eight randomized control trials met our inclusion criteria involving over 900 participants. The content and structure of Internet-based interventions, outcome measures, and duration differed markedly, and selection, performance, and reporting biases were varied and on occasion of concern. Six studies reported outcomes in caregivers' mental health outcomes, 3 studies reported burden outcomes. Three studies reported knowledge skills, quality of life and reaction to challenging behaviours, whereas 2 studies reported changes in coping outcomes and self-efficacy. No studies reported outcomes on quality of care. Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological diversity across studies prevented the robust pooling of the results. A concerted and cohesive approach from all stakeholders is now required to help realize the full potential of this emerging field. Copyright © 2017. Published by Elsevier Inc.
Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard
of participants: Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. Phenomena of interest: How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations......BACKGROUND Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers’ stress and burden......, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. OBJECTIVES To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. INCLUSION CRITERIA Types...
Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara
Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.
Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David
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.
Tang, Fengyan; Jang, Heejung; Lingler, Jennifer; Tamres, Lisa K; Erlen, Judith A
Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss.
Claudia I. Martínez-Alcalá
Full Text Available The increasing human longevity around the world calls for new attention models in which the primary caregiver plays a crucial role as a source of care supply. However, primary caregivers’ lack of training, along with high levels of stress, depression and anxiety, can have a negative impact on both the caregiver’s health and the development of caregiving duties. Hence, the objective of the present article is to introduce the eCuidador platform, an innovative tool that seeks to provide assistance and support to primary caregivers by means of a variety of services available in the cloud with the aim of improving caregivers’ health and quality of life. Likewise, we present the results obtained from the pilot test validation, in which the evaluation of the following parameters was carried out: Usability (12, Functionality (10, Design (11, Usefulness (12 and Satisfaction (12. The participants of this pilot test were 12 primary caregivers (91.66% women.
Lund, Line; Ross, Lone; Petersen, Morten Aagaard
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...
Jeong, Ansuk; An, Ji Yeong
There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers. Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively. In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients. While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.
Şahin, Zümrüt Akgün; Tan, Mehtap
Loneliness is a significant psychosocial concern for patients with cancer, and depression may be an antecedent to loneliness. To date, no studies have directly addressed the relationship of loneliness, depression, and social support among Turkish patients with cancer and their caregivers. The emotional responses that result from a cancer diagnosis vary and may include anxiety, anger, frustration, or depression. Because of the unexpected demands and emotions thrust on them, the caregivers of patients with cancer may be just as likely to experience loneliness or depression following a cancer diagnosis. As a result, this study sought to examine that relationship among a sample of 60 patients with cancer and 60 caregivers.
Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying
This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.
Casale, Marisa; Cluver, Lucie; Crankshaw, Tamaryn; Kuo, Caroline; Lachman, Jamie M.; Wild, Lauren G.
Caregiver social support has been shown to be protective for caregiver mental health, parenting and child psychosocial outcomes. This is the first known analysis to quantitatively investigate the relationship between caregiver social support and adolescent psychosocial outcomes in HIV-endemic, resource-scarce Southern African communities. A cross-sectional household survey was conducted over 2009-2010 with 2477 South African adolescents aged 10-17 and their adult caregivers (18 years or older) in one urban and one rural community in South Africa’s KwaZulu-Natal province. Adolescent adjustment was assessed using adult caregiver reports of the Strengths and Difficulties questionnaire (SDQ), which measures peer problems, hyperactivity, conduct problems, emotional symptoms and child prosocial behavior. Hierarchical linear regressions and multiple mediation analyses, using bootstrapping procedures, were conducted to assess for: a) direct effects of more caregiver social support on better adolescent psychosocial wellbeing; and b) indirect effects mediated by better parenting and caregiver mental health. Direct associations (psocial support components within parenting interventions but also point to scope for positive intervention on adolescent psychosocial wellbeing through the broader family social network. PMID:25623784
Alexander, Dayna S; Alfonso, Moya L; Cao, Chunhua; Wright, Alesha R
Objectives African American maternal caregiver support for prevention of childhood obesity may be a factor in implementing, monitoring, and sustaining children's positive health behaviors. However, little is known about how perceptions of childhood obesity risk factors and health complications influence caregivers' support of childhood obesity prevention strategies. The objective of this study was to determine if childhood obesity risk factors and health complications were associated with maternal caregivers' support for prevention initiatives. Methods A convenience sample of maternal caregivers (N = 129, ages 22-65 years) completed the childhood obesity perceptions (COP) survey. A linear regression was conducted to determine whether perceptions about childhood obesity risk factors and subsequent health complications influenced caregivers' support for prevention strategies. Results Caregivers' perceptions of childhood obesity risk factors were moderate (M = 3.4; SD = 0.64), as were their perceptions of obesity-related health complications (M = 3.3; SD = 0.75); however, they perceived a high level of support for prevention strategies (M = 4.2; SD = 0.74). In the regression model, only health complications were significantly associated with caregiver support (β = 0.348; p obesity prevention efforts should emphasize health complications by providing education and strategies that promote self-efficacy and outcome expectations among maternal caregivers.
Paul B. Perrin
Full Text Available Background. Multiple sclerosis (MS rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory, health-related quality of life (HRQOL; Short Form-36, and social support (Interpersonal Support Evaluation List-12 in 81 (66.7% women Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p=0.006, HRQOL (p<0.001, and social support (p<0.001. This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p=0.018 and for nearly three times as many months (66.31 versus 24.30, p=0.002. Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning.
Badr, H; Lipnick, D; Diefenbach, M A; Posner, M; Kotz, T; Miles, B; Genden, E
Oral cancer (OC) survivors experience debilitating side effects that affect their quality of life (QOL) and that of their caregivers. This study aimed to develop and evaluate a dyadic, web-based intervention to improve survivor self-management and survivor/caregiver QOL. A qualitative needs assessment (semi-structured interviews) with 13 OC survivors and 12 caregivers was conducted to discern information and support needs as well as preferences regarding website features and tools. Results using Grounded Theory analysis showed that OC survivors and caregivers: (1) want and need practical advice about managing side effects; (2) want to reach out to other survivors/caregivers for information and support; and (3) have both overlapping and unique needs and preferences regarding website features. Usability testing (N = 6 survivors; 5 caregivers) uncovered problems with the intuitiveness, navigation and design of the website that were subsequently addressed. Users rated the website favourably on the dimensions of attractiveness, controllability, efficiency, intuitiveness and learnability, and gave it a total usability score of 80/100. Overall, this study demonstrates that OC survivors and caregivers are interested in using an online programme to improve QOL, and that providing tailored website content and features based on the person's role as survivor or caregiver is important in this population. © 2015 John Wiley & Sons Ltd.
Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review.
Ploeg, Jenny; Markle-Reid, Maureen; Valaitis, Ruta; McAiney, Carrie; Duggleby, Wendy; Bartholomew, Amy; Sherifali, Diana
Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions. The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community. A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention. A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the
Full Text Available Background: The caregivers of persons with epilepsy and schizophrenia undergo severe emotional, physical, financial burden due to the nature, chronicity, disability, and stigma attached to the illness. Aim: To assess the burden and social support among caregivers of persons with schizophrenia and epilepsy. Method: The study was conducted at the Out Patient Department of LokopriyaGopinathBordoloi Regional Institute of Mental Health, Tezpur. It was a comparative study. Purposive sampling technique was used for selection of the sample. The sample for the current study comprised of caregivers of 30 persons with schizophrenia and 30 persons suffering from epilepsy. A semi-structured socio-demographic data sheet, the Burden Assessment Schedule (BAS, the Social Support Questionnaire, and the General Health Questionnaire were administered to the caregivers. Results: There was no significant difference reported by the caregivers in the two groups with the entire domains of BAS and perceived social support. Physical and mental health, and caregivers’ strategy domains of BAS had significant negative correlation at 0.05 levels with perceived social support. External support, support of patient, taking responsibility, and other relation domains of BAS had significant negative correlation at the 0.01 level with perceived social support. Conclusion: While the two groups had no significant difference with the entire domains of BAS and perceived social support; physical and mental health, and caregivers’ strategy had significant negative correlation with perceived social support.
Milliken, Aimee; Mahoney, Ellen K; Mahoney, Kevin J; Mignosa, Kate; Rodriguez, Isabella; Cuchetti, Catherine; Inoue, Megumi
Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.
Matzek, Amanda E.; Cooney, Teresa M.
Few studies have examined how raising grandchildren influences the marital relationship of grandparent caregivers although half of such caregivers are married. This study used national survey data from Midlife Development in the United States (MIDUS) to contrast perceptions of spousal support and strain for grandparents who had recently provided…
Mayara Barbosa Sindeaux Lima
Full Text Available Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.
Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee
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.
Full Text Available The purpose of this study was to explore and describe the experiences of HIV and AIDS home-based caregivers in the Vhembe district of Limpopo Province. A qualitative research design which was exploratory, descriptive and contextual was executed with a sample of purposively selected participants who provided home-based care to people living with HIV and AIDS in the Vhembe district of Limpopo Province. Data saturation occurred after in-depth interviews with fifteen participants. In-depth individual interviews and field notes were also used during data collection. The findings reveal that HIV/AIDS home-based caregivers express pain and despair when caring for HIV/AIDS patients. The theme was supported by the following categories and subcategories: problems related to stigma when caring for patients at their homes; stress, burnout, frustration and feelings of helplessness when caring for patients. Recommendations that are described focus on building a working relationship between the home-based caregivers, community and the family.
Zulman, Donna M; Piette, John D; Jenchura, Emily C; Asch, Steven M; Rosland, Ann-Marie
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
Lee, Yeonjung; Tang, Fengyan
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.
Liu, Hsin-Yi; Huang, Lian-Hua
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.
Faucounau, Véronique; Wu, Ya-Huei; Boulay, Mélodie; Maestrutti, Marina; Rigaud, Anne-Sophie
Older people are an important and growing sector of the population. This demographic change raises the profile of frailty and disability within the world's population. In such conditions, many old people need aides to perform daily activities. Most of the support is given by family members who are now a new target in the therapeutic approach. With advances in technology, robotics becomes increasingly important as a means of supporting older people at home. In order to ensure appropriate technology, 30 caregivers filled out a self-administered questionnaire including questions on needs to support their proxy and requirements concerning the robotic agent's functions and modes of action. This paper points out the functions to be integrated into the robot in order to support caregivers in the care of their proxy. The results also show that caregivers have a positive attitude towards robotic agents.
Dorant, Elisabeth; Krieger, Theresia
Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.
Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel
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
Mulud, Zamzaliza Abdul; McCarthy, Geraldine
The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n=201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden. Copyright © 2016 Elsevier Inc. All rights reserved.
White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James
There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and
Rusby, Julie C.; Jones, Laura Backen; Crowley, Ryann; Smolkowski, Keith
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…
Sørensen, Lisbeth V; Waldorff, Frans B; Waldemar, Gunhild
OBJECTIVES: The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease...... with the challenges their partner's disease involved, and they were able to face everyday life and social relations with more serenity and competence. After the intervention, both patients and caregivers sought suitable support groups they could join as a permanent activity and caregivers sought permanent counselling...... revealed that patients found support groups relevant: they found it stimulating to be with peers, it supported their self-esteem, and it supported them in finding new ways of managing everyday life and social relations. During and after the intervention, caregivers were better able to cope...
Henriksson, Anette; Årestedt, Kristofer
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.
Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla
Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions
Lazelle E Benefield
Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders
Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen
We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.
Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty
Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den
Edelstein, H; Schippke, J; Sheffe, S; Kingsnorth, S
Caring for children with chronic and complex medical needs places extraordinary stress on parents and other family members. A scoping review was undertaken to identify and describe the full range of current interventions for reducing caregiver stress. Applying a broad definition of caregiver stress, a systematic search of three scientific databases (CINAHL, Embase and Ovid Medline), a general internet search and hand searching of key peer-reviewed articles were conducted. Inclusion criteria were as follows: (i) published in English between 2004-2016; (ii) focused on familial caregivers, defined as parents, siblings or extended family; (iii) targeted children/youth with medical complexity between the ages of 1-24 years; and (iv) described an intervention and impact on caregiver stress. Data on type of intervention, study design and methods, measures and overall findings were extracted. Forty-nine studies were included from a list of 22 339 unique titles. Six domains of interventions were found: care coordination models (n = 23); respite care (n = 8); telemedicine (n = 5); peer and emotional support (n = 6); insurance and employment benefits (n = 4); and health and related supports (n = 3). Across studies, there was a wide variety of designs, outcomes and measures used. Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple
Xu, Ling; Tang, Fengyan; Li, Lydia W; Dong, Xin Qi
Though ample research on grandparent caregiving and psychological well-being outcomes exist in Western literature, little attention has been focused on Chinese American grandparents. Based on role enhancement and role strain theories, this study examined grandparent caregiving and psychological well-being among Chinese American older adults and tested whether caregiving burden or pressure from adult children moderated such association. We used the data from the Population Study of ChINese Elderly in Chicago (PINE), a population-based survey of community-dwelling Chinese older adults in the Greater Chicago area. Grandparents with grandchildren younger than 16 years old were selected for present study (N = 2,775). Negative binominal regression and logistic regression models were used to test the relationships of grandparent caregiving time and psychological well-being measured by depressive symptoms and quality of life. Grandparents reported an average of 11.96 hours a week for caring for grandchildren. Caregiving time had a significantly negative association with depressive symptoms, but not with quality of life. The association between grandparent caregiving and depressive symptoms was moderated by the perception of caregiving burden. No moderating effect of caregiving pressure from adult children was found. More time spending on grandparent caregiving is generally beneficial to Chinese American grandparents' psychological well-being, thus supporting role enhancement theory. However, this association depends on whether this experience is a burden to the grandparents, therefore role strain theory is also supported. Policies and programs are discussed to address the grandparenting experience in the Chinese American older adults. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Githaiga, Jennifer Nyawira
This article explores the experiences of a small group of Nairobi women caring for a family cancer patient at home. On the basis of literature on women as caregivers in Africa, and on other literature more broadly, it was anticipated that issues around generational roles, gender and women's cultural role would be relevant. Seven women participated in semi-structured in-depth interviews, while thirteen women participated in four mini focus groups. Data were analysed using interpretative phenomenological analysis. Findings underscore the socio-cultural complexities of caregiving as a basis for evidence-based culturally appropriate structures to support family caregivers.
In developing countries informal care by an unpaid relative is the most prevalent form of long-term care. Being bedridden consumes the victim and the caregiver physically, psychologically, socially and financially. In developing countries, strengthening support for family caregivers is essential to sustain long term health care system. Therefore unmet needs and burdens of family caregivers, including inadequate training, respite, and access to support programs should be studied and addressed. To study unmet needs of caregivers of stroke patients in the home settings. To study physical, psychological and social stress of these caregivers. Descriptive Study setting: Four rural panchayats, where home based care is given to bed ridden patients by the palliative team of our medical college. Sampling design: Convenience sampling study population: Care givers of bedridden stroke patients tool: A semi structured questionnaire Forty caregivers participated in the study. Their mean age was 51 years. Most were wives (15, 37.5%) and daughters (14, 35%). All belonged to low socioeconomic class. Unmet needs were lack of recreation (67%), inadequate sleep (67%), total responsibility (65%), illnesses (53%) and insufficient money (67%). Severe to moderate physical, psychological and social stress was seen in 90%, 87.5% and 70% of caregivers respectively. Services to be aimed primarily at informal caregivers may be designed to increase the level of knowledge and emotional support of caregivers, provide respite, or provide financial benefits as social schemes. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Wittenberg, Elaine; Buller, Haley; Ferrell, Betty; Koczywas, Marianna; Borneman, Tami
To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. Case studies based on interviews with oncology family caregivers. Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict. Copyright © 2017 Elsevier Inc. All rights reserved.
Children aged 7-12 years and their caregivers participated in a series of group psychosocial support sessions, using standard manuals specifically developed for facilitating such sessions such as Children Affected by Armed Conflict and Joint Sessions. The sessions used various activities, including drawing, storytelling, folk games, and other activities, to provide participants with opportunities to express their feelings, learn and practice new coping skills, and interact with others. The aim of this study was to measure the effects of structured psychosocial support sessions on the psychosocial wellbeing of children and their caregivers in the Gaza Strip. This descriptive study involved children and female caregivers selected from six locations using a stratified sampling technique. External numerators collected data before and after the group sessions. Two interview questionnaires with questions about psychological and social status were used, one for children and one for caregivers. The caregivers' questionnaire also assessed their psychosocial knowledge. Adult participants and caregivers of participating children provided verbal consent. Data were analysed with SPSS, and a p value less than 0·05 indicated significance. 155 children (77 [50%] boys and 78 [50%] girls) and 155 female caregivers were enrolled from a population of 1720 children (50% boys and 50% girls) and 1720 female caregivers. The sessions improved psychosocial wellbeing in participants, with the average psychosocial wellbeing score increasing from 58% to 87% in children and from 69% to 84% in caregivers. Caregivers' knowledge increased from 70% to 82%. Improvement was found in the various aspects of psychosocial wellbeing. No differences were found with respect to location, sex, and age. Structured group sessions improved psychosocial wellbeing in children and caregivers and improved caregivers' knowledge. Given the design of this study, it is difficult to fully attribute these results to the
Xu, Ling; Li, Yawen; Min, Joohong; Chi, Iris
Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support. Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support. Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms. Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.
Roberts, Megan Y; Kaiser, Ann P; Wolfe, Cathy E; Bryant, Julie D; Spidalieri, Alexandria M
In this study, the authors examined the effects of the Teach-Model-Coach-Review instructional approach on caregivers' use of four enhanced milieu teaching (EMT) language support strategies and on their children's use of expressive language. Four caregiver-child dyads participated in a single-subject, multiple-baseline study. Children were between 24 and 42 months of age and had language impairment. Interventionists used the Teach-Model-Coach-Review instructional approach to teach caregivers to use matched turns, expansions, time delays, and milieu teaching prompts during 24 individualized clinic sessions. Caregiver use of each EMT language support strategy and child use of communication targets were the dependent variables. The caregivers demonstrated increases in their use of each EMT language support strategy after instruction. Generalization and maintenance of strategy use to the home was limited, indicating that teaching across routines is necessary to achieve maximal outcomes. All children demonstrated gains in their use of communication targets and in their performance on norm-referenced measures of language. The results indicate that the Teach-Model-Coach-Review instructional approach resulted in increased use of EMT language support strategies by caregivers. Caregiver use of these strategies was associated with positive changes in child language skills.
Dockham, Bonnie; Schafenacker, Ann; Yoon, Hyojin; Ronis, David L; Kershaw, Trace; Titler, Marita; Northouse, Laurel
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.
Blusi, Madeleine; Asplund, Kenneth; Jong, Mats
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion . The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Serra, Lídia; Contador, Israel; Fernández-Calvo, Bernardino; Ruisoto, Pablo; Jenaro, Cristina; Flores, Noelia; Ramos, Francisco; Rivera-Navarro, Jesús
Scientific literature has identified different vulnerability factors associated to abuse in people with dementia (PWD), but little is known about the psychosocial protective variables against abuse. The main objective of this study is to investigate a set of caregiver and patient factors linked to abuse-related behavior of PWD. A total of 326 primary and family caregivers, residents of the Castilla and León community (Spain), were evaluated. All participants filled out a standardized protocol, which assessed the sociodemographic characteristics, patient and care-related variables, as well as the perceived burden, resilience, and social support. Abuse-related behavior was evaluated using the Caregiver Abuse Screen. Results show that the severity of cognitive impairment and behavior disorders of PWD, a greater number of caregiving hours, a worse previous relationship with the caregiver, and perceived burden are positively related with abuse. However, resilience and social support showed a negative relationship with Caregiver Abuse Screen scores, suggesting a protective effect on abuse, even after controlling the effect of a number of covariates. Indeed, resilience was the only variable that remained significant after including the effect of burden. This paper states the role of burden in abuse of PWD, while resilience and social support are abuse protective factors. These variables should be considered in future guidelines for the prevention of abuse against PWD. Copyright © 2018 John Wiley & Sons, Ltd.
Lambert, Sylvie D; Hulbert-Williams, Nicholas; Belzile, Eric; Ciampi, Antonio; Girgis, Afaf
Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression. Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging. Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs. Copyright © 2018 John Wiley & Sons, Ltd.
Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.
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…
Miyawaki, Christina E
This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.
Wright, Debra L.; Aquilino, William S.
Interrelationships among elderly couples' reciprocity of emotional support, wives' experience of caregiving for husbands with disabilities, and wives' marital happiness are explored. Level of functioning and type of disability, and levels of exchange of emotional support were measured. Regression models are presented and relationships among…
Full Text Available Background: Fussy eating in young children is very common, with at least 50% of parents reporting having a fussy child. Eating behaviours established early in life tend to remain throughout childhood and into adulthood, so ensuring that children develop healthy eating behaviours from their earliest years is vital. Fussy children often refuse to eat healthy foods, like fruit and vegetables, but favour high-calorie foods instead. Diets low in fruit and vegetables have been linked to a number of preventable health conditions, such as diabetes and cancers, as well as to overweight and obesity. Fussy child eating behaviours can also cause anxiety and stress in caregivers, which can perpetuate the problem. Despite an abundance of available support for introducing complementary foods, practical advice about child feeding once weaning has occurred is lacking. Moreover, caregivers find available resources about feeding young children and promoting healthy eating to be “too basic” and have called for evidence-based, credible resources to help them manage children’s difficult or fussy eating behaviours. Empowering caregivers to effectively manage fussy eating behaviours and improve health in their children will likely prevent these eating behaviours from becoming engrained and reduce the number of children eating unhealthy or limited diets. Aim: To address the lack of child feeding support for caregivers by developing an evidence-based, credible and accessible support resource to promote healthy eating habits in young children and healthy feeding practices in caregivers. Method: Following a review of the literature and consultation with caregivers, the Child Feeding Guide was developed. The Child Feeding Guide is a website and free mobile app which offers information, advice and tools to help caregivers manage fussy eating behaviours. An online format was used to ensure the Child Feeding Guide is accessible and that a diverse range of caregivers can
Gholamzadeh, Sakineh; Tengku Aizan, Hamid; Sharif, Farkhondeh; Hamidon, Basri; Rahimah, Ibrahim
The period of hospital stay and the first month after discharge have been found to be the most problematic stages for family caregivers of stroke survivors. It is just at home that patients and caregivers actually understand the whole consequences of the stroke. The adult offspring often have more different needs and concerns than spousal caregivers. However, relatively little attention has been paid to the needs of this particular group of caregivers. Therefore, this qualitative content analysis study aimed to explore the supportive needs and coping behaviors of daughter and daughter in-law caregivers (DILs) of stroke survivors one month after the patient's discharge from the hospital in Shiraz, Southern of Iran. This is a qualitative content analysis study using semi-structured and in-depth interviews with a purposive sampling of seventeen daughter and daughter in-law caregivers. The data revealed seven major themes including information and training, financial support, home health care assistance need, self-care support need, adjusting with the cultural obligation in providing care for a parent in-law, and need for improving quality of hospital care. Also, data from the interview showed that daughter and daughter in-law caregivers mostly used emotional-oriented coping strategies, specially religiosity, to cope with their needs and problems in their care-giving role. The results of this qualitative study revealed that family caregivers have several unmet needs in their care-giving role. By providing individualized information and support, we can prepare these family caregivers to better cope with the home care needs of stroke survivors and regain control over aspects of life.
Full Text Available Abstract Background To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016. Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer; then assessed against the Effective Practice and Organisation of Care (EPOC methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. Results The number of publications increased by 13% each year (p < 0.001. Half were descriptive studies (n = 92, 50% describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48% reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10, multiple modalities (n = 9 or telephone (n = 15. Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. Conclusion Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.
Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying
We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.
Ge, Lixia; Mordiffi, Siti Zubaidah
Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.
Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed
Caring for someone with Alzheimer's disease (AD) is very challenging. Social support may play a crucial role in helping caregivers to adapt better to their caregiving role. The aim of this study is to explore the role of social support as a moderator variable of the relationship between depression and life satisfaction in caregivers for patients with AD in Saudi Arabia. In this cross-sectional study, 122 caregivers for patients with AD completed questionnaires assessing informal social support, depressive symptoms, and general life satisfaction. The demographic characteristics showed that 79% (n = 96) of caregivers were females and between the ages of 20 and 50. Higher levels of social support positively correlated with reported higher levels of life satisfaction (r = 0.483, p Depression was negatively correlated with social support (r = -0.418, p Social support was found to be a partial mediator variable, mediating approximately 23.05% of the total effect of depression on life satisfaction (Sobel = -3.065, p = 0.002). Informal social support can act as a mediator variable in the relationship of depression and life satisfaction in caregivers of AD patients. Improving the informal social support networks may help in coping with caregiving burden and better quality of life.
Williamson, Heather J.; Perkins, Elizabeth A.
Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…
Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe
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.
İnci, Fadime Hatice; Temel, Ayla Bayik
The purpose of the study was to determine the effect of a support program on the resilience of female family caregivers of stroke patients. This is a randomized controlled trial. The sample consisted 70 female family caregivers (34 experimental, 36 control group). Data were collected three times (pretest-posttest, follow-up test). Data were collected using the demographical data form, the Family Index of Regenerativity and Adaptation-General. A significant difference was determined between the experimental and control group's follow-up test scores for relative and friend support, social support and family-coping coherence. A significant difference was determined between the experimental group's mean pretest, posttest and follow-up test scores in terms of family strain, relative and friend support, social support, family coping-coherence, family hardiness and family distress. These results suggest that the Support Program contributes to the improvement of the components of resilience of family caregivers of stroke patients. Copyright © 2016 Elsevier Inc. All rights reserved.
Scharlach, Andrew E; Gustavson, Kristen; Dal Santo, Teresa S
This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.
Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L
To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
Philip, Rekha Rachel; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie
The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged care-giver at home, 85% of these care-givers being female. The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a
Chen, Ming-Chun; Kao, Chi-Wen; Chiu, Yu-Lung; Lin, Tzu-Ying; Tsai, Yu-Ting; Jian, Yi-Ting Zhang; Tzeng, Ya-Mei; Lin, Fu-Gong; Hwang, Shu-Ling; Li, Shan-Ru; Kao, Senyeong
Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age. This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good). The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%-100% and higher care recipient health. The
Kalomo, Eveline Ndii; Lee, Kyoung Hag; Lightfoot, Elizabeth; Freeman, Rachel
Namibia has one of the highest human immunodeficiency virus (HIV) prevalence rates and one of the highest rates of orphanhood in the world, and older caregivers provide much of the care to Namibians living with HIV and acquired immune deficiency syndrome (AIDS) (UNAIDS, 2014). In this study, the authors explore how financial status, social support, and health were related to the resilience of caregivers caring for people affected by HIV and AIDS in rural northern Namibia, Africa. Data were collected through a structured interview from (N = 147) caregivers from the Zambezi region. Findings from this study show that employment and physical health were significantly associated with increased resilience in older caregivers. Our findings point to the need for employment assistance and health services to improve the resilience of caregivers caring for people living with HIV and AIDS. We conclude that there is a need for more vigorous concerted efforts from public and private sector practitioners and policy makers to create more sustained formal employment opportunities and intervention programs aimed at improving the overall health of older HIV caregivers, especially those residing in rural HIV endemic communities in developing countries.
Phillips, Anna C; Gallagher, Stephen; Hunt, Kate; Der, Geoff; Carroll, Douglas
The origins and persistence of psychological morbidity in caregivers are not fully understood. The present analysis examined the relationship between the strain and burden of caregiving and depression and anxiety in a large community sample. Social support and sleep quality were investigated as potential mediators. Cross-sectional and prospective observational study. Individuals caring for someone other than their own child (N=393) were identified from a population of 2,079. Caregiving strain and burden, social support, and sleep quality were assessed. Participants completed the hospital anxiety and depression scale at the same time and 5 years later. Caregiving strain and burden were associated with depression and anxiety symptoms cross-sectionally, and with a worsening of symptoms 5 years later. Sleep quality appeared to mediate the cross-sectional relationships. The demands of caregiving and associated sleep disruption contribute to symptoms of depression and anxiety in caregivers.
Hart, Lara; Nedadur, Rashmi; Reardon, Jaime; Sirizzotti, Natalie; Poonai, Caroline; Speechley, Kathy N; Loftus, Jay; Miller, Michael; Salvadori, Marina; Spadafora, Amanda; Poonai, Naveen
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.
Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon
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.
Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Annemans, Lieven
Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. This study will have great added value
Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G
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. 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. 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 Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.
Garvelink, Mirjam M; Ngangue, Patrice A G; Adekpedjou, Rheda; Diouf, Ndeye T; Goh, Larissa; Blair, Louisa; Légaré, France
We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors. Project HOPE—The People-to-People Health Foundation, Inc.
Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R
Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants' responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group.
Simoneau, Teresa L; Kilbourn, Kristin; Spradley, Janet; Laudenslager, Mark L
Caregivers of cancer patients face challenges impacting their physical, psychological and social well-being that need attention in the form of well-designed and tested interventions. We created an eight-session individual stress management intervention for caregivers of allogeneic hematopoietic stem cell transplant (Allo-HSCT) recipients. This intervention, tested by randomized control trial, proved effective in decreasing distress. Herein, we describe the intervention including theoretical framework, development, and elements of fidelity. Implementation challenges along with recommendations for refinement in future studies are discussed with the goal of replication and dissemination. Seventy-four of 148 caregivers received stress management training following randomization. The intervention occurred during the 100-day post-transplant period when caregivers are required. The training provided integrated cognitive behavioral strategies, psychoeducation, and problem-solving skills building as well as use of a biofeedback device. Seventy percent of caregivers completed all eight sessions indicating good acceptability for the in-person intervention; however, most caregivers did not reliably use the biofeedback device. The most common reason for drop-out was their patient becoming gravely ill or patient death. Few caregivers dropped out because of study demands. The need for flexibility in providing intervention sessions was key to retention. Our evidence-based stress management intervention for Allo-HSCT caregivers was feasible. Variability in acceptability and challenges in implementation are discussed and suggestions for refinement of the intervention are outlined. Dissemination efforts could improve by using alternative methods for providing caregiver support such as telephone or video chat to accommodate caregivers who are unable to attend in-person sessions.
Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia
Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.
Pailler, Megan E; Johnson, Teresa M; Kuszczak, Sarah; Attwood, Kristopher M; Zevon, Michael A; Griffiths, Elizabeth; Thompson, James; Wang, Eunice S; Wetzler, Meir
Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.
Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank
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.
Bezruczko, N.; Stanley, T.; Battle, M.; Latty, C.
Despite broad sweeping pronouncements by international research organizations that social sciences are being integrated into global research programs, little attention has been directed toward obstacles blocking productive collaborations. In particular, social sciences routinely implement nonlinear, ordinal measures, which fundamentally inhibit integration with overarching scientific paradigms. The widely promoted general linear model in contemporary social science methods is largely based on untransformed scores and ratings, which are neither objective nor linear. This issue has historically separated physical and social sciences, which this report now asserts is unnecessary. In this research, nonlinear, subjective caregiver ratings of confidence to care for children supported by complex, medical technologies were transformed to an objective scale defined by logits (N=70). Transparent linear units from this transformation provided foundational insights into measurement properties of a social- humanistic caregiving construct, which clarified physical and social caregiver implications. Parameterized items and ratings were also subjected to multivariate hierarchical analysis, then decomposed to demonstrate theoretical coherence (R2 >.50), which provided further support for convergence of mathematical parameterization, physical expectations, and a social-humanistic construct. These results present substantial support for improving integration of social sciences with contemporary scientific research programs by emphasizing construction of common variables with objective, linear units.
Heidemann, Christian Hamilton; Godballe, Christian; Kjeldsen, Anette Drøhse
OBJECTIVE: Otitis media in children may have a considerable impact on caregiver quality of life. The disease-specific Caregiver Impact Questionnaire is designed to assess caregiver quality of life in relation to child otitis media. Assessment of the psychometric properties of this instrument...... is limited. This study assesses the psychometric properties of this instrument including validity, reproducibility, responsiveness, and interpretability. STUDY DESIGN: Longitudinal validation study. SETTING: Secondary care units. METHODS: Analyses were based on data from 435 families. Validity was assessed...... Danish version of the Caregiver Impact Questionnaire is a valid and reproducible measurement tool that is also sensitive to measuring change in the current setting. A change score representing minimal important change as perceived by the respondent is proposed. Results of this study support the use...
Li, Andrew; Shaffer, Jonathan; Bagger, Jessica
We draw on the cross-domain model of work-family conflict and conservation of resources theory to examine the relationship between disability caregiving demands and the psychological well-being of employed caregivers. Using a sample of employed disability caregivers from a national survey, we found that the relationship between caregiving demands and family-to-work conflict was stronger when employees experienced high levels of strain from family. Additionally, we found high levels of family to-work conflict were subsequently associated with decreases in life satisfaction and increases in depression, but only when perceived supervisor support was low. Overall, our findings suggest an indirect relationship between caregiving demands and psychological well-being that is mediated by family-to-work conflict and is conditional on family strain and perceived supervisor support. The theoretical and practical implications of these findings are discussed. PsycINFO Database Record (c) 2014 APA, all rights reserved.
Dunst, Carl J; Raab, Melinda; Trivette, Carol M; Wilson, Linda L; Hamby, Deborah W; Parkey, Cindy
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.
Calvó-Perxas, Laia; Vilalta-Franch, Joan; Litwin, Howard; Turró-Garriga, Oriol; Mira, Pedro; Garre-Olmo, Josep
In Europe, informal caregiving is frequent and is expected to grow. Caregiving has an impact on caregivers' health, but its effect may vary according to the policies of support that are available to caregivers. The aim of this study was to assess the association between the policies of support to caregivers available in 12 European countries and the health of caregivers, considering separately the policies based on financial help and those based on training and other non- financial services. We used data from 13,507 caregivers from 12 European countries from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) to build a path model. Poor health among caregivers was associated with living in a family-based care country (β = 0.50; 95% CI = 0.42-0.59), and with an increased extent of caregiving (β = 0.18; 95% CI = 0.15-0.22). Non-financial support measures seem to have a larger protective impact (β = -0.33; 95% CI = -0.38 - -0.28) on the health of caregivers than do financial support measures (β = 0.03; 95% CI = 0.01-0.04), regardless of the gender of the caregiver. According to our results, the currently available policies of support associated with better health among caregivers are those that: 1) provide them with some free time, 2) help them to deal emotionally with caregiving, and 3) give them skills to both improve the care situation and to deal with it better.
Full Text Available Background: The practical difficulties for patients with stroke include lack of information about their condition, poor knowledge of the services and benefits available. Specialist Stroke nurses provide education and support services for people with Stroke in many health care systems. A key goal is helping and empowering unable people to self-manage their stroke and supporting caregivers of these valnurable population, too. Objective: The objective of this review was to assess the role of specialist nurse in care for patients following a stroke and their caregivers support. Search methods: The databases CINAHL, PubMed, Science Direct and Synergy were searched from 1988 to 2017 using the keywords Stroke, Specialist Nurse, Care, Caregivers and support. Bibliographies of relevant papers were searched, and hand searching of relevant publications was undertaken to identify additional Studies. Selection criteria: All studies of the effects of a specialist nurse practitioner on short and long term stroke outcomes were included in the review. Data collection and analysis: Three investigators performed data extraction and quality scoring independently; any discrepancies were resolved by consensus. Findings: Stroke, Specialist Nurse, Care, Caregivers concepts and labels are defined and measured in different and often contradictory ways by using 31 founded study. Conclusions: The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care and specialist nurse requires further exploration. The contrasting paradigms of health care professionals and people with stroke regarding models of disability were highlighted. Stroke, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.
Kim, Jiyeon; Kim, Hongsoo
The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.
Hanssen, Elizabeth, Ed.; Zimanyi, Louise, Ed.
This theme issue of Coordinators' Notebook focuses on how early childhood care and development (ECCD) programs world-wide can work with parents and caregivers to support children from birth to 3 years of age. Section 1 of the journal describes the needs of parents and families and the development of parent programs around the world. Section 2…
Oliver, Debra Parker; Demiris, George; Washington, Karla T; Clark, Carlyn; Thomas-Jones, Deborah
Family caregivers of hospice patients are responsible for the day-to-day care of their loved ones during the final months of life. They are faced with numerous challenges. The purpose of this study was to understand the challenges and coping strategies used by hospice caregivers as they care for their family members. This study is a secondary analysis of data from an attention control group in a large randomized controlled trial testing a cognitive behavioral intervention with hospice caregivers. Audiotaped interviews were coded with initial themes and combined into final categories of caregiving challenges and strategies for managing the hospice caregiving experience. Caregivers shared narratives discussing challenges that included their frustrations with patient care issues, emotional challenges, frustrations with various health care systems, financial problems, and personal health concerns. They also discussed coping strategies involving patient care, self-care, and emotional support. The coping techniques were both problem and emotion based. There is a need for interventions that focus on strengthening both problem-based and emotional-based coping skills to improve the caregiving experience. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Hassan, Mahfuz; Simpson, Andrea; Danaher, Katey; Haesen, James; Makela, Tanya; Thomson, Kendra
Limited research has explored how to best train caregivers to support their child with autism spectrum disorder (ASD) despite caregivers being well suited to promote generalization and maintenance of their child's skills in the natural environment. Children with ASD have been shown to benefit from social skill training, which is not always conducted in the natural context. This research examined the efficacy of behavioral skills training (BST) with, and without in situ training (IST), for teaching caregivers how to also use BST to support their child's context-specific social skills. Although caregivers met mastery criterion within BST sessions, their skills did not generalize to the natural environment until IST was introduced. The implications of the findings are discussed.
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.
Morrow-Odom, K. Leigh; Robbins, Sarah M.
The purpose of this article is to provide basic guidelines to successfully establish a support group for caregivers of persons with dementia. Support groups should provide its members with a community of support, as well as coping and management strategies to improve daily function of loved ones. This should improve the care provided, and the…
Faucher, Mary Ann; Garner, Shelby L
The purpose of this manuscript is to compare methods and thematic representations of the challenges and supports of family caregivers identified with photovoice methodology contrasted with content analysis, a more traditional qualitative approach. Results from a photovoice study utilizing a participatory action research framework was compared to an analysis of the audio-transcripts from that study utilizing content analysis methodology. Major similarities between the results are identified with some notable differences. Content analysis provides a more in-depth and abstract elucidation of the nature of the challenges and supports of the family caregiver. The comparison provides evidence to support the trustworthiness of photovoice methodology with limitations identified. The enhanced elaboration of theme and categories with content analysis may have some advantages relevant to the utilization of this knowledge by health care professionals. Copyright © 2015 Elsevier Inc. All rights reserved.
Chen, Min-Chia; Chiu, Yi-Chen; Wei, Pi-Mei; Hsu, Wen-Chuin
The long-term care of cognitively impaired patients with concomitant behavioral problems brings great stress and burdens to family caregivers. The present article describes a family caregiver with multiple chronic diseases who concurrently shouldered primary care responsibilities for her husband, a patient with mild cognitive impairment, problematic behaviors, and medication non-adherence issues. The period of care was between September 23rd and December 29th, 2015. Data on physiological, psychological, and social burdens were collected based on a stress process model for family caregiving. We then applied a home-based, individually tailored intervention, which included nursing education, skills training, listening/counseling, and resource connecting, that effectively helped the family caregiver reduce her burdens. Our assessment identified nursing-care-related problems as the primary source of caregiver burden in this case, with identified stressors including a lack of knowledge regarding patient care, medication management problems, sleep disorders, and inadequate social resources. Using continuous care interactions, we established a trust relationship with the family caregiver, prioritized her needs, and provided dementia care knowledge and skills, which gradually improved her caregiving competence. Our instruction included increasing caregiver understanding of the disease course of dementia, related problematic behaviors, and medication management. Our intervention enhanced the disease awareness of the caregiver and helped her become more positive about her caregiving tasks. Therefore, the negative impacts on her family were reduced. Social support and long-term care resources further reduced her burden and improved her quality of life.
Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay
To examine the relationship between religious involvement (RI) and adaptation of women caring for family members with severe physical or neurological disability. Two-site cross-sectional study. Community. A convenience sample of 251 caregivers was recruited. RI and caregiver adaptation (assessed by perceived stress, caregiver burden, and depressive symptoms) were measured using standard scales, along with caregiver characteristics, social support, and health behaviors. Bivariate and multivariate analyses were conducted to identify relationships and mediating and moderating factors. Religious involvement (RI) was associated with better caregiver adaptation independent of age, race, education, caregiver health, care recipient's health, social support, and health behaviors (B = -0.09, standard error = 0.04, t = -2.08, P = .04). This association was strongest in caregivers aged 58-75 and spouses and for perceived stress in blacks. Religious involvement (RI) in female caregivers is associated with better caregiver adaptation, especially for those who are older, spouses of the care recipients, and blacks. These results are relevant to the development of future interventions that provide support to family caregivers. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.
Pierce, Linda L; Steiner, Victoria; Cervantez Thompson, Teresa L; Friedemann, Marie-Luise
This theoretical article outlines the deliberate process of applying a qualitative data analysis method rooted in Friedemann's Framework of Systemic Organization through the study of a web-based education and support intervention for stroke caregiving families. Directed by Friedemann's framework, the analytic method involved developing, refining, and using a coding rubric to explore interactive patterns between caregivers and care recipients from this 3-month feasibility study using this education and support intervention. Specifically, data were gathered from the intervention's web-based discussion component between caregivers and the nurse specialist, as well as from telephone caregiver interviews. A theoretical framework guided the process of developing and refining this coding rubric for the purpose of organizing data; but, more importantly, guided the investigators' thought processes, allowing them to extract rich information from the data set, as well as synthesize this information to generate a broad understanding of the caring situation. © 2013 Association of Rehabilitation Nurses.
Full Text Available This study sought to determine the effect of participation in support groups on the depression, anxiety and stress level of caregivers of patients with Alzheimer. This study was a single blind randomized clinical controlled trial (RCT with 80 family caregivers of people with Alzheimer’s (per group=40. The intervention group participated in eight sessions 1.5- 2 hours in support groups. The tool used in this study was the DASS-21 questionnaire for measuring depression, anxiety and stress level of the caregivers, analysis of parametric data, using SPSS version 21. Findings showed, participation in support groups showed no significant difference on depression, anxiety and stress in family caregivers of Alzheimer patients in the control group and the intervention group. Given that caring for these patients by their family members are very sensitive and costly issues for policy makers and health service providers, community and families of these patients.
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…
Supporting someone with an eating disorder: a systematic review of caregiver experiences of eating disorder treatment and a qualitative exploration of burnout management within eating disorder services
Aims: Eating disorder recovery is often supported by caregivers and mental health professionals. This research portfolio focuses on the experiences of supporting someone with an eating disorder from the perspective of the caregivers and also mental health professionals. The aims of this research portfolio are: Firstly, to systematically review the published qualitative literature relating to the experiences of caregivers supporting someone during eating disorder treatment; and ...
Ryerson Espino, Susan L; Kelly, Erin H; Rivelli, Anne; Zebracki, Kathy; Vogel, Lawrence C
Focus group study. Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). One pediatric specialty rehabilitation hospital system in the United States. Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.
Lin, Lan-Ping; Lin, Pei-Ying; Chu, Cordia M.; Lin, Jin-Ding
Although many previous studies have begun to address the reproductive health needs of women with intellectual disabilities; however, the supportive behaviors of caregivers to assist their reproductive health is not well understood. Data from a cross-sectional survey of ""2009 National Survey on Reproductive Health Care Needs and Health…
Brown, Lynsey J; Bond, Malcolm J
One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient's move into residential care or death) will affect caregivers' outcomes. A synthetic cohort method compared caregivers' stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing. © The Author(s) 2014.
Wrubel, J; Richards, T A; Folkman, S; Acree, M C
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.
Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne
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).
Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy
ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the
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 ...
Jansen, Jens E; Haahr, Ulrik H; Lyse, Hanne-Grethe
involved. Recent advances in cognitive behavioral therapy seem to converge on the importance of acceptance- and mindfulness based processes. Aim: To examine the impact of psychological flexibility on caregiver distress in the early phases of psychosis, while controlling for known predictors of caregiver...... user symptoms, drug use and global functioning, psychological flexibility was a significant predictor of caregiver distress. Conclusion: Greater level of psychological flexibility in caregivers, seems to be related to lower levels of caregiver distress. This finding corresponds to studies within......Background: Research has shown that caregivers of persons with psychosis play an invaluable role in recovery, but unfortunately, often report high levels of distress. While cognitive models of caregiver distress have been well-supported, there is still limited knowledge of the psychological factors...
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course.
Crosato, Kay E; Leipert, Beverly
Informal caregiving within rural contexts in Canada is increasing. This is due in part to a number of factors related to the restructuring of the Canadian health care system, the regionalization of services to urban locations, the increased population of people 65 years and older, and the desire of this population to age within their rural homes. Most often, the informal caregiving role is assumed by rural women. Women tend to fall into the role of informal caregiver to elders because of the many societal and gender expectations and values that are present within the rural culture. The purpose of this literature review is to identify the context in which women provide care for an elder in rural Canada. Illustrating these issues will help to uncover challenges and barriers rural women face when providing care and highlight recommendations and implications for rural women caregivers and nurses employed within rural settings. Many rural women share similar caregiving experiences as urban informal caregivers, but rural women are faced with additional challenges in providing quality care for an elder. Rural women caregivers are faced with such issues as limited access to adequate and appropriate healthcare services, culturally incongruent health care, geographical distance from regionalized centers and health services, transportation challenges, and social/geographical isolation. In addition to these issues, many rural women are faced with the multiple role demands that attend being a wife, mother, caregiver and employee. The pile up of these factors leaves rural women caregivers susceptible to additional stresses and burn out, with limited resources on which to depend. Through reviewing pertinent literature, appropriate implications and recommendations can be made that may assist rural women caregivers and rural nurses. Nurses working within rural communities are in ideal settings to work collaboratively in building supportive relationships with rural women in order to
Grafström, Anna; Petersson, Sofia
Abstract Introduction: Vietnam has one of the fastest growing HIV- epidemics in the world. In Vietnam the primary caregivers are the family. Aim: The aim was to examine caregiver burden and need of support among family members of persons living with HIV [PLHIV] in Ho Chi Minh City, and also to investigate the differences in these matters between genders. Method: A descriptive cross-sectional study with quantitative method was used. The study was carried out at the Hospital of Tropical Disea...
Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu
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.
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.
Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J
(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.
Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda
Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.
Occupational therapy practitioners play a significant role in supporting adults with Alzheimer's disease and related major neurocognitive disorders, as well as their caregivers, through all phases of the disease process. This editorial highlights the systematic reviews completed in collaboration with the American Occupational Therapy Association's Evidence-Based Practice Project that summarize the evidence for the effectiveness of interventions within the scope of occupational therapy practice for this population. Readers are encouraged to translate and integrate this updated knowledge into everyday practice. Copyright © 2017 by the American Occupational Therapy Association, Inc.
Hassan, S T S; Khaw, W F; Rosna, A R; Husna, J
Traumatic brain injury (TBI) is an increasingly major world health problem. This short review using the most pertinent articles on TBI caregiving problems and needs highlights the pressing issues. Articles focusing on both TBI-caregivers' problems and needs are rarely found, especially for developing countries. Most TBI-caregiving is done by family members, whose altered lives portend burden and stresses which add to the overwhelming demand of caring for the TBI-survivor. Lack of information, financial inadequacy, anxiety, distress, coping deficits, poor adaptability, inadequate knowledge and skills, and a poor support system comprise the major problems. Dysfunctional communication between caregivers and care-receivers has been little researched. The major needs are focused on health and rehabilitation information, financial advice and assistance, emotional and social support, and positive psychological encouragement. In time, health information needs may be met, but not emotional support. Information on TBI caregiving problems and unmet needs is critical to all relevant healthcare stakeholders.
Okeke, Bernedette Okwuchukwu
This study examined the relative efficacy of social support seeking (SSS) and self-efficacy building (SEB) in the management of emotional well-being of caregivers of people suffering from HIV/AIDS. It was based at the United States President's Emergency Plan for AIDS Relief (PEPFAR) center in the University College Hospital, Ibadan, Oyo state, being the first and the largest teaching hospital in Nigeria. A 3 × 2 factorial design consisting of treatment and a control group was used. The columns have two levels of gender being male and female caregivers. One-hundred and sixty-five (165) caregivers who were taking care of people that are suffering from HIV/AIDS were purposively selected and randomly assigned to the treatment groups and control. The treatment was carried out for a period of eight weeks. Two null hypotheses were tested, both at .05 levels of significance. Data were collected with the use of standardized intruments rating scale; social support scale, general self-efficacy scale and emotional well-being scale. ANCOVA was used to establish significant treatment effects with the pretest as covariate. Even though SSS and SEB were both found to be effective in enhancing the emotional well-being of informal caregivers in this study when compared to the controls, SSS was significantly more effective than SEB in achieving this goal. Since the HIV/AIDS patients cannot be adequately cared for in the hospital settings due to severe shortages of material, personnel and time, serious efforts should be made by the three levels of the health care system viz: the primary, secondary and tertiary health care systems, to encourage the employment of the psychological management of caregivers of people suffering from HIV/AIDS. Also, the psychologists, clinical psychologists and the significant others should be encouraged to employ this psychological management in the care of HIV/AIDS informal caregivers.
Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi
Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare
Naef, Rahel; Hediger, Hannele; Imhof, Lorenz; Mahrer-Imhof, Romy
To determine subgroups of family carers based on family relational and caregiving variables and to explore group differences in relation to selected carer outcomes. Family caregiving in later life holds a myriad of positive and negative outcomes for family members' well-being. However, factors that constitute family carers' experience and explain variances are less well understood. A secondary data analysis using cross-sectional data from a controlled randomised trial with community-dwelling people 80 years or older and their families. A total of 277 paired data sets of older persons and their family carers were included into the analysis. Data were collected via mailed questionnaires and a geriatric nursing assessment. A two-step cluster analysis was performed to determine subgroups. To discern group differences, appropriate tests for differences with Bonferroni correction were used. Two family carer groups were identified. The low-intensity caregiver group (57% of carers) reported high relationship quality and self-perceived ease of caregiving. In contrast, the high-intensity caregiver group (43% of carers) experienced significantly lower relationship quality, felt less prepared and appraised caregiving as more difficult, time intensive and burdensome. The latter cared for older, frailer and more dependent octogenarians and had significantly lower levels of quality of life and self-perceived health compared to the low-intensity caregiver group. A combination of family relational and caregiving variables differentiates those at risk for adverse outcomes. Family carers of frailer older people tend to experience higher strain, lower relationship quality and ability to work together as a family. Nurses should explicitly assess family carer needs, in particular when older persons are frail. Family carer support interventions should address caregiving preparedness, demand and burden, as well as concerns situated in the relationship. © 2016 John Wiley & Sons Ltd.
Cooley, Mary E; Nayak, Manan M; Abrahm, Janet L; Braun, Ilana M; Rabin, Michael S; Brzozowski, Jane; Lathan, Christopher; Berry, Donna L
Adequate symptom and quality-of-life (SQL) management is a priority during cancer treatment. eHealth is a timely way to enhance patient-engagement, facilitate communication, and improve health outcomes. The objectives of this study were to describe patient and caregivers' perspectives for providing, processing, and managing SQL data to enhance communication and identify desired components for decision support. Data were collected from 64 participants through questionnaires and focus groups. Analysis was conducted using NVivo. Open and axial coding was completed, grouping commonalities and large constructs into nodes to identify and synthesize themes. Face-to-face meetings with clinicians were the prime time to communicate, and patients strove to understand treatment options and the effect on SQL by bringing caregivers to their visits, taking notes, tracking symptoms, and creating portable health records. Patients/caregivers struggled to self-manage their symptoms and were uncertain when to contact clinicians when experiencing uncontrolled symptoms. Most participants identified eHealth solutions for decision support. However, 38% of participants (n = 24) rarely used computers and identified non-eHealth options for decision support. Core components for both eHealth and non-eHealth systems were access to (1) cancer information, (2) medical records, (3) peer support, and (4) improved support and understanding on when to contact clinicians. Patients were faced with an overwhelming amount of information and relied on their caregivers to help navigate the complexities of cancer care and self-manage SQL. Health technologies can provide informational support; however, decision support needs to span multiple venues to avoid increasing disparities caused by a digital divide. Copyright © 2017 John Wiley & Sons, Ltd.
Kim, Chul-Hoon; Kim, Myoung Soo
The purpose of this study was to describe the status of ventilator use, respiratory problems, and caregiver well-being relating to patients with amyotrophic lateral sclerosis (ALS) using a home-based ventilator as well as to examine the relationship among ventilator use, respiratory problems, and caregiver well-being. Patients with ALS (n = 141) registered in the Severe-Rare Disease Center of the Korean Center for Disease Control and their caregivers (n = 83) were surveyed from August 2008 to April 2009. Trained research assistants visited patient homes; collected data using questionnaires; and then performed analyses with descriptive statistics, χ test, and t test as well as partial correlation analysis using SPSS WIN 18.0. Thirty-two patients used noninvasive ventilation (NIV), and 109 used tracheostomy and mechanical ventilation (TMV). One hundred of the TMV patients used the ventilator 24 hours per day. The ventilator circuit exchange cycle was 0.96 times per month for NIV patients and 1.17 times per month for TMV patients (t = -4.91, p NIV patients had a higher level of tidal volume than TMV patients (t = 3.34, p = .001). Approximately 22% of NIV patients and 24% of TMV patients used one or more physiotherapies for airway clearance. There was a significant relationship between hypoventilation symptoms and caregiver burden (r = .31, p = .006). Hypoventilation symptoms were positively related to physiotherapy (r = .24, p = .042), and physiotherapy was positively related to caregiver burden (r = .24, p = .043). On the basis of the findings of this study, care management for patients with ALS with a home-based ventilator as well as their caregiver's well-being was relatively inappropriate. We recommend that community-based support programs and burden relief programs be considered as managerial interventions.
Sharer, Melissa; Cluver, Lucie; Shields, Joseph J; Ahearn, Frederick
Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.
Goren, Amir; Montgomery, William; Kahle-Wrobleski, Kristin; Nakamura, Tomomi; Ueda, Kaname
This study assessed how family caregivers for patients with Alzheimer's disease (AD) or dementia in Japan differed from non-caregivers in characteristics and health outcomes (i.e., comorbidities, health-related quality of life [HRQoL], productivity, and resource use). Caregivers were hypothesized to experience significantly poorer outcomes than non-caregivers. Data were combined from the 2012 and 2013 National Health and Wellness Survey in Japan (n = 60000). Caregivers for adult relatives with AD or dementia were compared with non-caregivers on: comorbidities (including Patient Health Questionnaire (PHQ-9) cutoff scores suggesting presence/absence of major depressive disorder (MDD)), Work Productivity and Activity Impairment (WPAI), SF-36v2-based HRQoL, and healthcare resource utilization. Sociodemographic characteristics, health characteristics and behaviors, and Charlson comorbidity index (CCI) scores were compared across groups. Propensity matching, based on scores generated from a logistic regression predicting caregiving, was used to match caregivers with non-caregivers with similar likelihood of being caregivers. Bivariate comparisons across matched groups served to estimate outcomes differences due to caregiving. Among 55060 respondents, compared with non-caregivers (n = 53758), caregivers (n = 1302) were older (52.6 vs. 47.5 years), more frequently female (53 % vs. 49 %), married/partnered, frequent alcohol drinkers, current smokers, exercisers, and not employed, and they averaged higher CCI scores (0.37 vs. 0.14), all p marital status, CCI, insured status, education, employment, income, and children in household. A greedy matching algorithm produced 1297 exact matches, excluding 5 non-matched caregivers. Health utilities scores were significantly lower among caregivers (0.724) vs. non-caregivers (0.764), as were SF-36v2 Physical and Mental Component Summary scores. Caregivers vs. non-caregivers had significantly higher absenteeism
Andersson, Stefan; Erlingsson, Christen; Magnusson, Lennart; Hanson, Elizabeth
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. © 2016 Nordic College
Sung, Minjung; Park, Jiyeon
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…
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
Marsland, Anna L.; Long, Kristin A.; Howe, Chelsea; Thompson, Amanda L.; Tersak, Jean; Ewing, Linda J.
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...
Duxbury, Linda; Higgins, Christopher; Smart, Rob
As the baby-boom generation moves towards middle age, and their parents toward old age, the number of employees who combine care for an elderly dependant and work will increase in number. These employees are "at risk" of experiencing caregiver strain. This paper advances our understanding of these trends by examining the relationship between caregiver strain and the health of employed caregivers. Our study involved the analysis of data from the 2001 Canadian National Work, Family and Lifestyle Study (N= 31,517). MANOVA was used to determine the relationship between caregiver strain and three situational factors: (1) gender; (2) where the care recipient lives compared to the caregiver; and, (3) family type. Regression was used to determine the relationship between caregiver strain and mental health. We found that caregiver strain depends on gender, family type and location of care. Emotional strain was a significant predictor of mental health. These findings support the need for organizations to expand their thinking around work-life balance to include employees who have eldercare responsibilities.
Dam, Alieske E H; de Vugt, Marjolein E; van Boxtel, Martin P J; Verhey, Frans R J
Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T 0 ) and at 8-week (T 1 ), 16-week (T 2 ) and 42-week follow up (T 3 ). The 16-week follow-up assessment (T 2 ) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Dutch trial register, NTR6131 . Registered on 20 October 2016.
Chattillion, Elizabeth A; Mausbach, Brent T; Roepke, Susan K; von Känel, Roland; Mills, Paul J; Dimsdale, Joel E; Allison, Matthew; Ziegler, Michael G; Patterson, Thomas L; Ancoli-Israel, Sonia; Grant, Igor
This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (n = 107; mean age = 73.95 ± 8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = 0.41; p = 0.005) and EPI (β = 0.44; p = 0.003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = -0.08; p = 0.57) or EPI (β = 0.23; p = 0.12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers.
Full Text Available Moshe Fridman,1 Tobias Banaschewski,2 Vanja Sikirica,3 Javier Quintero,4 Kristina S Chen5 1AMF Consulting, Inc., Los Angeles, CA, USA; 2Department of Child and Adolescent Psychiatry and Psychotherapy, Central Institute of Mental Health, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany; 3Global Health Economics Outcomes Research and Epidemiology, Shire, Wayne, PA, USA; 4Psychiatry Department, Hospital Universitario Infanta Leonor, Complutense University, Madrid, Spain; 5Global Health Economics Outcomes Research and Epidemiology, Shire, Lexington, MA, USA Background: Attention-deficit/hyperactivity disorder (ADHD is one of the most common childhood psychiatric disorders and negatively impacts caregivers’ lives. Factors including barriers to accessing care, dissatisfaction with support services, and lack of caregiver resources may contribute to this.Objectives: To report caregivers’ experiences of ADHD diagnosis, behavioral therapy (BT, and supportive care for children/adolescents with ADHD.Methods: The Caregiver Perspective on Pediatric ADHD (CAPPA survey included caregivers of children/adolescents (6–17 years from ten European countries who were currently receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers reported experiences of obtaining an ADHD diagnosis, access to BT, availability of caregiver resources, and level of health care/school support. Pan-EU and country-specific descriptive statistics are reported; responses were compared across countries.Results: Of 3,616 caregivers, 66% were female. Mean age of children/adolescents was 11.5 years; 80% were male. Mean time from the first doctor visit to diagnosis was 10.8 (95% confidence interval 10.2, 11.3 months; 31% of caregivers reported the greatest degrees of difficulty in obtaining an ADHD diagnosis; 44% of children/adolescents did not receive BT. Forty-seven percent of caregivers reported that sufficient resources were available
Benifei, Sarah; Facon-Delahaye, Aline; Vautier, Virginie
The experience of the French military health service in the fight against the Ebola epidemic in Guinea, highlights the importance of what favours the emergence of an institutional life in a context of care faced with numerous constraints and extraordinary challenges. The meticulous drawing up of procedures and the juxtaposition of expertise goes hand in hand with the construction of a triangular care system (caregivers-patients-families). This relational approach ensures each player in this system is able to find their place and a balance between constraints and satisfactions, losses and successes, isolation and support. This balance seems to favour individual and group resilience. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Kohli, Rewa; Purohit, Vidula; Karve, Latika; Bhalerao, Vinod; Karvande, Shilpa; Rangan, Sheela; Reddy, Srikanth; Paranjape, Ramesh; Sahay, Seema
In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically. Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training. Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.
Full Text Available INTRODUCTION: In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. METHODOLOGY: A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs with PLHIVs (20 and their caregivers (24, were conducted using separate guides respectively. Data was analyzed thematically. RESULTS: Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training. DISCUSSION: Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their
Gibson-Scipio, Wanda; Krouse, Helene J
Caregiver goals, an integral part of a partnership for asthma management, have been found to influence asthma outcomes in children. These goals are likely to change during the transitional period of adolescence to address the needs of teenagers as they mature and assume greater responsibilities for their own care. Little is known about the goals, beliefs, and concerns of caregivers as they begin to shift responsibilities for asthma management to teens. This study sought to identify the asthma management goals, beliefs, and concerns of primarily African American caregivers of urban middle and older adolescents. Fourteen caregivers of urban African American adolescents aged 14-18 years with asthma participated in a focus group session. An iterative process was used to identify themes from the session related to asthma management goals, concerns, and beliefs of caregivers. Caregivers identified goals that related to supporting their teens' progress toward independent asthma self-management. They described significant concerns related to the teens' ability to implement asthma self-management, especially in school settings. Caregivers also revealed beliefs that represented knowledge deficits related to asthma medications and factors that improved or worsened asthma. Most caregivers identified grave concerns about school policies regarding asthma medication administration and the lack of knowledge and support provided by teachers and staff for their teen. Caregivers are an invaluable resource in the care of adolescents with asthma. An opportunity exists to improve caregiver understanding of asthma medications and to provide support through improvements in asthma care for adolescents in school-based settings.
Lapid, Maria I; Atherton, Pamela J; Clark, Matthew M; Kung, Simon; Sloan, Jeff A; Rummans, Teresa A
The burden associated with caregiving has been well documented. Caregivers have multiple responsibilities, and technology may be accessible as a potential burden-alleviating resource. We surveyed cancer caregivers regarding current technology use and willingness to use technology for easing burden or distress. Because age has been associated with technology use, responses were compared between geriatric (≥65 years old) and nongeriatric (18-64 years old) caregivers. We had 112 respondents. Based on nonmissing responses, 66% (n=71) were women, 95% (n=106) were white, and 84% (n=91) had post-high school education. Almost all caregivers reported having Internet (105 [94%]) and e-mail (102 [91%]) access. Nongeriatric caregivers indicated more willingness to access Internet-based tools that help caregivers (54 [93%] versus 41 [76%]; p=0.04) and were more frequent users of social media (37 [64%] versus 16 [30%]; p=0.01), smartphones (33 [57%] versus 16 [30%]; p=0.01), and other mobile wireless devices (42 [72%] versus 19 [35%]; p<0.001) than geriatric caregivers. They also more frequently expected technologies to improve their own quality of life (p=0.009), increase their feelings of being effective as a caregiver (p=0.02), and save time (p=0.003). Regardless of age, a majority of caregivers (67 [62%]) endorsed the potential benefit of caregiving technologies in preventing burnout. Most caregivers have high access to and use of technology. Geriatric and nongeriatric caregivers were receptive to technology-based tools to help with their caregiving roles. Although nongeriatric caregivers expected to derive more benefit from such tools, both groups believed that caregiving technologies could reduce burden.
Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas
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.
Whitebird, Robin R; Kreitzer, Mary Jo; Lewis, Beth A; Hanson, Leah R; Crain, A Lauren; Enstad, Chris J; Mehta, Adele
Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction. Little is known however, about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies. Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a randomized controlled pilot study of mindfulness-based stress reduction. The study used an array of recruitment strategies and techniques that were tailored to fit the unique features of our recruitment sources and employed retention strategies that placed high value on establishing early and ongoing communication with potential participants. Innovative recruitment methods including conducting outreach to health plan members and generating press coverage were combined with standard methods of community outreach and paid advertising. We were successful in exceeding our recruitment goal and retained 92% of the study participants at post-intervention (2 months) and 90% at 6 months. Recruitment and retention for family caregiver interventions employing mind-body based complementary therapies can be successful despite many challenges. Barriers include cultural perceptions about the use and benefit of complementary therapies, cultural differences with how the role of family caregiver is perceived, the use of group-based designs requiring significant time commitment by participants, and travel and respite care needs for busy family caregivers. Copyright © 2011 Elsevier Inc. All rights reserved.
Miriam Teresa Domínguez - Guedea
Full Text Available Objective: To analyze the relationship of psychological aspects of family caregivers with the support that they offer to the diabetic patient’s adherence to treatment. The psychological aspects were: subjective well-being, attachment styles, coping strategies to problems and perceived social support. Methods: Joined in the study 29 family caregivers in a noneprobabilistic sample. Participants were contacted from three Mutual Aid Groups for diabetic and hypertensive patients in the city of Hermosillo, México. Questionnaires designed for the purposes of research were applied, as well as psychometric instruments previously validated in the cultural reference group. Results: The data showed that the psychological aspects that are statistically significant and negatively related to adherence therapy are avoidant attachment and negative affection, both associated to each other in a positive way, indicating that they occur in parallel. Avoidant attachment was positively associated with avoidant coping strategies and emotional disturbance, but negatively with secure attachment and material satisfaction. Negative affection were positively associated with emotional coping, but negatively with secure attachment and material satisfaction. Negative affect were positively associated with emotional confrontation, but negatively with positive affection, material satisfaction, emotional support and guidance support. Conclusions: More applied research in needed on the influence of family factors in achieving adherence to treatment, because so far, most work focuses more on the individual patient, disregarding the family factor.
Doubova, Svetlana V; Aguirre-Hernandez, Rebeca; Infante-Castañeda, Claudia; Martinez-Vega, Ingrid; Pérez-Cuevas, Ricardo
The purpose of this study was to validate the Mexican version of the Support Person Unmet Needs Survey (SPUNS-SFM). A cross-sectional survey that included 826 primary caregivers of cancer patients was conducted from June to December 2013 at the Oncology Hospital of the Mexican Institute of Social Security in Mexico City. The validation procedure comprised (1) content validity through a group of experts; (2) construct validity through an exploratory factor analysis based on the polychoric correlation matrix; (3) internal consistency using Cronbach's alpha; (4) convergent validity between SPUNS-SFM and quality of life, anxiety-and-depression scales by calculating Spearman's rank correlation coefficient;( 5) discriminative validity through the Wilcoxon rank-sum test; and (6) test-retest reliability using intraclass correlation coefficient. SPUNS-SFM has 23 items with six factors accounting for 65 % of the total variance. The domains were concerns about the future, access and continuity of healthcare, information, work and finance, and personal and emotional needs. Cronbach's alpha values ranged from 0.70 to 0.88 among factors. SPUNS-SFM had moderate convergent validity compared with quality of life and depression-and-anxiety scales and good discriminative validity, revealing high needs for younger caregivers and more emotional needs for caregivers of patients with advanced cancer stages. Intraclass correlation coefficient between SPUNS-SFM measurements was 0.78. SPUNS-SFM is a valid and reliable tool to identify needs of caregivers of cancer patients.
Solli, Hilde; Hvalvik, Sigrun; Bjørk, Ida Torunn; Hellesø, Ragnhild
To explore the relationship between nurses and caregivers using a web camera and web forum as the communication methods. In Norway and other European countries, there is an increased focus on ageing at home, which is aided by technology, as well as formal and informal care. The literature reveals that caregivers endure physical and mental burdens. With computer-mediated communication, such as telecare, it is possible for nurses to provide supportive care to caregivers in their homes. An explorative design using qualitative content analysis. Six nurses and nine caregivers with residential spouses suffering from stroke or dementia were interviewed two times over a six-month period. The nurses responded dynamically to the information they received and helped to empower the individual caregivers and to strengthen the interpersonal relationships between the caregivers. While some participants thought that meeting in a virtual room was close and intimate, others wanted to maintain a certain distance. The participants' altered their roles as the masters and receivers of knowledge and experience; this variation was based on a relationship in which mutual respect for one another and an interest in learning from one another allowed them to work together as partners to demonstrate the system and to follow-up with new caregivers. The flexibility of the service allows the possibility of engaging in a close, or to some extent, a more distant relationship, depending on the participants' attitudes towards using this type of service. Nurses can provide close care, support and information to caregivers who endeavour to master their everyday lives together with their sick spouses. The support seems to help the caregivers cope with their own physical and emotional problems. © 2015 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Monin, Joan K; Martire, Lynn M; Schulz, Richard; Clark, Margaret S
This study examined the association between care-recipients' willingness to express emotions to spousal caregivers and caregiver's well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients' willingness to express happiness was associated with less insensitive caregiver responding, and willingness to express interpersonal emotions (e.g., compassion, guilt) was associated with less caregiving stress. There were also gender differences, such that caregiving wives, in particular, benefited from their husband's willingness to express vulnerable (e.g., anxiety, sadness) and interpersonal emotions. (c) 2009 APA, all rights reserved
Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van
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'
Currow David C
Full Text Available Abstract Background End-stage lung disease (ESLD is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses? Methods The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%. Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful. Results Of 1504 deaths reported, 145 (9.6% were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p physical care, information provision, and emotional and spiritual support. Conclusions Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.
Reblin, Maija; Otis-Green, Shirley; Ellington, Lee; Clayton, Margaret F
Although there is growing recognition of the importance of integrating spirituality within health care, there is little evidence to guide clinicians in how to best communicate with patients and family about their spiritual or existential concerns. Using an audio-recorded home hospice nurse visit immediately following the death of a patient as a case-study, we identify spiritually-sensitive communication strategies. The nurse incorporates spirituality in her support of the family by 1) creating space to allow for the expression of emotions and spiritual beliefs and 2) encouraging meaning-based coping, including emphasizing the caregivers' strengths and reframing negative experiences. Hospice provides an excellent venue for modeling successful examples of spiritual communication. Health care professionals can learn these techniques to support patients and families in their own holistic practice. All health care professionals benefit from proficiency in spiritual communication skills. Attention to spiritual concerns ultimately improves care. © The Author(s) 2014.
Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca
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
Wong, Cindy C; Wallhagen, Margaret I
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.
Powell-Cope, Gail; Pippins, Karla M; Young, Heather M
: This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.
Full Text Available With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is kwalitatief
Girma, Eshetu; Möller-Leimkühler, Anne Maria; Dehning, Sandra; Mueller, Norbert; Tesfaye, Markos; Froeschl, Guenter
In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers' self-stigma can negatively influence the patients' treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness. An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness. The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, PSelf-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, Pself-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, Pself-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers' self-stigma may negatively influence patients' treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness.
Volunteer caregivers are a critical source of support for the majority of people living with HIV and AIDS in southern Africa, which has extremely high HIV/AIDS prevalence rates. While studies have shown that volunteer caregiving is associated with negative health and socio-economic outcomes, little is known about the positive experiences of volunteers in the home-based care context in South Africa. The purpose of this study is to explore the perception of rewards among volunteers working in home-based care settings. This study uses a qualitative design. Qualitative interviews were conducted with a purposively selected sample of 55 volunteer caregivers using an interview schedule containing open-ended questions. Volunteer caregivers derived intrinsic rewards related to self-growth and personal (emotional and psychological) development on the job; they also derived satisfaction from community members taking a liking for them and expressing a need for their services. Volunteers felt gratified by the improvements in their health behaviours, which were a direct consequence of the experiences of caring for terminally ill patients with AIDS. Extrinsic rewards came from appreciation and recognition shown by patients and community members. Extrinsic rewards also accrued to volunteers when the services they rendered made their patients happy. Perhaps the greatest sources of extrinsic rewards are skills and competencies acquired from training and experience while caring for their patients, and volunteers' ability to make a difference in the community. Insights into volunteer caregiver rewards provide opportunities for policy makers and programme managers to develop a model of home-based care that facilitates the accrual of rewards to volunteers alongside volunteers' traditional duties of patient care. Programme managers could employ these insights in recruiting and assisting volunteers to identify and reflect on rewards in the caregiving situation as a means of reducing the
Phoebe V. Kahn
Full Text Available Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C. Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51, p<.001. Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80 = −4.37, p<.001 and more burden on the ZBI (t(80 = −2.68, p=.009 compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8 = −2.22, p=.034 and more burden on the ZBI (t(80 = −2.65, p=.010 than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.
... National Family Caregivers Month, 2012 By the President of the United States of America A Proclamation Our... hours to providing care to their relatives or loved ones. During National Family Caregivers Month, we... veterans and their family caregivers through financial support; access to health insurance, mental health...
Although government and non-government organisations have responded by ... most of Africa's orphans have been absorbed into extended family networks. ... social workers and home-based caregivers be trained on available social support.
Hiyoshi-Taniguchi, Kazuko; Becker, Carl B; Kinoshita, Ayae
Patients' irritability and aggression have been linked to caregiver depression, but the behaviors that most burden caregivers are not yet definitively identified. This study examines the connection between behavioral and psychological symptoms of dementia (BPSD) and the burnout of caregivers caring for home-dwelling elders with dementia symptoms in Japan. 80 Japanese rural and urban family caregivers completed detailed questionnaires about their experiences in caring for demented family members. We statistically analyzed the results for correlations between types of dementia, Pines Burnout, and Caregiver Distress. BPSD symptom severity significantly correlated with caregiver distress. The dementia symptoms most strongly correlated with caregiver burnout were: aggression, irritability, abnormal motor behavior, and hallucinations. Among the commonest symptoms, apathy, anxiety, and depression did not seriously aggravate caregiver burnout. Caregivers displayed higher burnout facing agitation/aggression, irritability, aberrant motor behavior, and hallucinations. Caregivers' reported distress was surprisingly dissimilar to their burnout scores; patients' delusions and anxiety led to higher distress reporting but not to burnout. Advance diagnosis of BPSD symptoms should be helpful to support nurses and caregivers of dementia patients. Particular support should be considered for caregivers and nurses of patients expressing aggression, irritability, abnormal motor behavior, and hallucination.
Objective: Social support provided to caregivers of children has been shown to be protective for caregiver health, parenting and child psychosocial outcomes. However, little work in Southern Africa provides insight on the relationship between caregiver social support and child wellbeing. This report discusses exploratory ...
Villalobos, Bianca T; Bridges, Ana J
This study tests the parameters of Weiner's attribution model of caregiving, which describes how attributions of controllability relate to emotional reactions, which in turn influence willingness to provide support to stigmatized individuals. To date, the model has not been explored in the context of cultural variables, the caregiver-recipient relationship, or types of support. The present study examined the attribution model using a Latino community sample (N = 96) that was presented with vignettes describing an individual with depression. Support was found for the basic attribution model. Familismo was predictive of attributions of controllability and the basic model was predictive of emotional support, but not instrumental support. Participants were more willing to provide instrumental support to a partner, but had more positive affective reactions toward a sibling. The findings provide important information about contextual factors that may motivate Latino caregivers to provide support. © The Author(s) 2015.
... National Family Caregivers Month, 2013 By the President of the United States of America A Proclamation... is one we must recognize and support. During National Family Caregivers Month, we thank these...' family caregivers also receive access to health care. Just as our loved ones celebrate with us in our...
Cornelius, T; Earnshaw, V A; Menino, D; Bogart, L M; Levy, S
Substance use disorders (SUDs) in adolescence have negative long-term health effects, which can be mitigated through successful treatment. Caregivers play a central role in adolescent treatment involvement; however, studies have not examined treatment motivation and pressures to enter treatment in caregiver/adolescent dyads. Research suggests that internally motivated treatment (in contrast to coerced treatment) tends to lead to better outcomes. We used Self-determination theory (SDT) to examine intersecting motivational narratives among caregivers and adolescents in SUD treatment. Relationships between motivation, interpretation of caregiver pressures, adolescent autonomy, and relatedness were also explored. Adolescents in SUD treatment and their caregivers (N Dyads =15) were interviewed about treatment experiences. Interviews were coded for treatment motivation, including extrinsic (e.g., motivated by punishment), introjected (e.g., motivated by guilt), and identified/integrated motivation (e.g., seeing a behavior as integral to the self). Internalization of treatment motivation, autonomy support/competence (e.g., caregiver support for adolescent decisions), and relatedness (e.g., acceptance and support) were also coded. Four dyadic categories were identified: agreement that treatment was motivated by the adolescent (intrinsic); agreement that treatment was motivated by the caregiver (extrinsic); agreement that treatment was motivated by both, or a shift towards adolescent control (mixed/transitional); and disagreement (adolescents and caregivers each claimed they motivated treatment; conflicting). Autonomy support and relatedness were most prominent in intrinsic dyads, and least prominent in extrinsic dyads. The mixed/transitional group was also high in autonomy support and relatedness. The extrinsic group characterized caregiver rules as an unwelcome mechanism for behavioral control; caregivers in the other groups saw rules as a way to build adolescent
von Koch Lena
support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.
Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae
The increase in the number of people suffering from dementia because of aging is a serious problem for caregivers since the feature of this pathology is irreversible and advancing. We designed an intervention study with Skype and webcam for patient with dementia being cared at home by their caregiver to prevent a further memory deterioration (seriousness of dementia) and to reduce a care burden as well. For a period of 12 weeks, a 4-patient-caregiver pair communicated with a hospital nurse through the computer for 30 minutes once a week. The patient and the caregiver worked as a pair. From the beginning of the intervention period, the intervention group and control group (n = 4) were assessed with cognitive scale, ADL scale, care burden scale and depression scale for the caregiver, and the like once in 4 weeks for 12 weeks. The initial report on the 8th week showed signs of improvement on the intervention group in HDS-R, also it improved the scale of moral of the caregiver as their scale of depression decreased.
Lara de Sa Neves Loureiro
Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.
Cole, Jason C; Ito, Diane; Chen, Yaozhu J; Cheng, Rebecca; Bolognese, Jennifer; Li-McLeod, Josephine
There is a lack of validated instruments to measure the level of burden of Alzheimer's disease (AD) on caregivers. The Impact of Alzheimer's Disease on Caregiver Questionnaire (IADCQ) is a 12-item instrument with a seven-day recall period that measures AD caregiver's burden across emotional, physical, social, financial, sleep, and time aspects. Primary objectives of this study were to evaluate psychometric properties of IADCQ administered on the Web and to determine most appropriate scoring algorithm. A national sample of 200 unpaid AD caregivers participated in this study by completing the Web-based version of IADCQ and Short Form-12 Health Survey Version 2 (SF-12v2™). The SF-12v2 was used to measure convergent validity of IADCQ scores and to provide an understanding of the overall health-related quality of life of sampled AD caregivers. The IADCQ survey was also completed four weeks later by a randomly selected subgroup of 50 participants to assess test-retest reliability. Confirmatory factor analysis (CFA) was implemented to test the dimensionality of the IADCQ items. Classical item-level and scale-level psychometric analyses were conducted to estimate psychometric characteristics of the instrument. Test-retest reliability was performed to evaluate the instrument's stability and consistency over time. Virtually none (2%) of the respondents had either floor or ceiling effects, indicating the IADCQ covers an ideal range of burden. A single-factor model obtained appropriate goodness of fit and provided evidence that a simple sum score of the 12 items of IADCQ can be used to measure AD caregiver's burden. Scales-level reliability was supported with a coefficient alpha of 0.93 and an intra-class correlation coefficient (for test-retest reliability) of 0.68 (95% CI: 0.50-0.80). Low-moderate negative correlations were observed between the IADCQ and scales of the SF-12v2. The study findings suggest the IADCQ has appropriate psychometric characteristics as a
Sinha, Preeti; Yohannan, Sherin; Thirumoorthy, A; Sivakumar, Palanimuthu Thangaraju
Older adults with dementia have higher rates of institutionalization than those without dementia. Desire to institutionalization (DTI) is an important factor influencing the actual institutionalization but is less well studied. This cross-sectional study examines the DTI with the scale of same name developed by Morycz, in 1985, in a sample of 50 caregivers of patients with dementia in a tertiary clinical care setting in a developing country. Caregiver burden associated with personal strain (by factor analyzed Zarit Burden Interview scale), and stress perceived out of caregiving (by Perceived Stress Scale) predicted higher DTI. Besides, those who were married had lower DTI scores. The factors which didn't affect DTI were total caregiver burden, family and social support, age of patient and caregiver, education of caregiver, severity and duration of dementia, and treatment duration. These results were different from those of developed country-based DTI studies and may indicate sociocultural differences.
Gona, J K; Newton, C R; Hartley, S; Bunning, K
Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an 'opening up' of communication that recognized the child's strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers
expensive condition and governments may underestimate the full cost of community-based supports needed for the vast range of unique needs of those living with autism. A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country. As autism becomes increasingly prevalent, continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach. Canadian policy-makers will need to consider the costs of a growing and aging population of individuals living with autism who need a range of supports so that adequate quality of care and a decent quality of life are enjoyed by many who remain some of this country’s most vulnerable citizens.
Las Hayas, Carlota; López de Arroyabe, Elena; Calvete, Esther
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).
El Masry, Yasmeen; Mullan, Barbara; Hackett, Maree
Despite stroke being the most common form of cerebrovascular disease, there has been relatively little attention paid to the psychosocial experiences and needs of Australian caregivers of people who have had a stroke. Twenty Australian informal caregivers and 10 stroke survivors participated in individual semi-structured qualitative interviews covering all aspects of caregiving, including stroke survivors' views on their caregiver's experiences. The 5 interrelated topics most discussed were changes in relationships and support services, including being told to expect a poor outcome; caregiver attributes and coping strategies; stroke survivor limitations; external employment and financial stressors; and unexpected positive changes in relationships and priorities. Caring for a stroke survivor involves a complex interaction of these factors that appear to be moderated by the quality of the pre-existing stroke survivor-caregiver relationship and the poststroke coping strategies used. Particular attention should be paid to how prognosis is conveyed and whether appropriate outpatient services are available. Clinicians should also consider discussing appropriate caregiver coping strategies and the quality of the relationship between the stroke survivor and caregiver.
Friedman, Mollie; Woods, Juliann; Salisbury, Christine
Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver-child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined,…
de Wit, Jessica; Bakker, Leonhard A; van Groenestijn, Annerieke C; van den Berg, Leonard H; Schröder, Carin D; Visser-Meily, Johanna Ma; Beelen, Anita
BACKGROUND: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. AIM: To evaluate the evidence on
Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A
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.
Secinti, E; Yavuz, H M; Selcuk, B
The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.
Heller, Tamar; Factor, Alan
This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.
Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L
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.
Brown, Kirk Warren; Coogle, Constance L; Wegelin, Jacob
The majority of care for those with Alzheimer's disease and other age-related dementias is provided in the home by family members. To date, there is no consistently effective intervention for reducing the significant stress burden of many family caregivers. The present pilot randomized controlled trial tested the efficacy of an adapted, eight-week mindfulness-based stress reduction (MBSR) program, relative to a near structurally equivalent, standard social support (SS) control condition for reducing caregiver stress and enhancing the care giver-recipient relationship. Thirty-eight family caregivers were randomized to MBSR or SS, with measures of diurnal salivary cortisol, and perceived stress, mental health, experiential avoidance, caregiver burden, and relationship quality collected pre- and post-intervention and at three-month follow-up. MBSR participants reported significantly lower levels of perceived stress and mood disturbance at post-intervention relative to SS participants. At three-month follow-up, participants in both treatment conditions reported improvements on several psychosocial outcomes. At follow-up, there were no condition differences on these outcomes, nor did MBSR and SS participants differ in diurnal cortisol response change over the course of the study. Both MBSR and SS showed stress reduction effects, and MBSR showed no sustained neuroendocrine and psychosocial advantages over SS. The lack of treatment condition differences could be attributable to active ingredients in both interventions, and to population-specific and design factors.
Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar
The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique
Boele, Florien W; van Uden-Kraan, Cornelia F; Hilverda, Karen; Weimer, Jason; Donovan, Heidi S; Drappatz, Jan; Lieberman, Frank S; Verdonck-de Leeuw, Irma; Sherwood, Paula R
Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.
Kate, N; Grover, S; Kulhara, P; Nehra, R
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
Park, Eunhee; Kim, Heejung; Steinhoff, Andreanna
Background Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers? needs from those of their care recipients or those of people caring for adults. Objective This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents. Methods A total of 17 studies were selected from literature searches conducted in 6 electr...
Jokinen, Nancy; Gomiero, Tiziano; Watchman, Karen; Janicki, Matthew P; Hogan, Mary; Larsen, Frode; Beránková, Anna; Heloísa Santos, Flávia; Service, Kathy; Crowe, Jim
This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.
Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise
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
Arnold, Anna; Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace
This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother's report of herself as a caregiver and her selection of the baby's father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby's father. While mother's self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.
Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.
Jeyagurunathan, Anitha; Sagayadevan, Vathsala; Abdin, Edimansyah; Zhang, YunJue; Chang, Sherilyn; Shafie, Saleha; Rahman, Restria Fauziana Abdul; Vaingankar, Janhavi Ajit; Chong, Siow Ann; Subramaniam, Mythily
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
Atasoy, Beste M; Sarikaya, Ozlem; Kuscu, M Kemal; Yondem, Merve; Buyukkara, Elif; Eken, E Gokcen; Kahyaoglu, Figen
The communication between medical students and cancer caregivers, and the problems they have experienced as well as the outcomes for their professional development before starting clinical practice was assessed in the context of a student research project. Data were collected by questionnaires or by 20 to 40-min long interviews with cancer caregivers. Their communications with physicians, hearing the bad news, and health service satisfaction were questioned. Therefore, the caregivers trusted the professional approach of their physician. However, they expected more empathic communication in the process of diagnosis and therapy. Development of empathy and trust-based communication between patients and physicians and enhancement of the quality of devoted time to cancer patients and caregivers may have an effect on the course of disease. Interviewer students mentioned that they developed communication skills about difficult clinical tasks and in delivering bad news face to face to cancer caregivers before starting their clinical education.
Cristancho-Lacroix, Victoria; Moulin, Florence; Wrobel, Jérémy; Batrancourt, Bénédicte; Plichart, Matthieu; De Rotrou, Jocelyne; Cantegreil-Kallen, Inge; Rigaud, Anne-Sophie
Web-based programs have been developed for informal caregivers of people with Alzheimer's disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers' correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers' stress, and based on the user-centered design approach. There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. Face-to-face psycho-educational programs may be used as a basis for Web-based programs. Nevertheless, a user-centered design approach involving targeted
Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie; Drentea, Patricia
Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.
Gallagher-Thompson, Dolores; Gray, Heather L; Tang, Paulette C Y; Pu, Chun Yu; Leung, Laurie Y L; Wang, Peng-Chih; Tse, Collins; Hsu, Shannon; Kwo, Elizabeth; Tong, Hui-Qi; Long, James; Thompson, Larry W
Recent work has shown that Chinese Americans caring for a family member with dementia experience considerable psychological distress. However, few studies evaluate treatments for them. This study evaluated the efficacy of in-home intervention, based on cognitive behavior therapy principles, to relieve stress and depression in female Chinese American caregivers (CGs). Fifty-five CGs who met inclusion criteria were randomly assigned to a telephone support condition (TSC) or to an in-home behavioral management program (IHBMP) for 4 months. In the TSC, biweekly calls were made and relevant material was mailed. In the IHBMP, specific psychological skills were taught to deal with caregiving stress. CGs were assessed before and after treatment. Outcome measures evaluated overall perceived stress, caregiving-specific stress, and depressive symptoms. CGs in IHBMP were less bothered by caregiving-specific stressors and had lower depression levels than CGs in TSC. There was no difference in overall stress. CGs with low baseline level of self-efficacy for obtaining respite benefited from IHBMP, but showed little improvement in the TSC. CGs with higher self-efficacy benefited from both treatments. This intervention is promising and warrants replication in future studies. Additional research is needed to evaluate longer-term effects and to identify individual differences associated with improvement.
Wilks, Scott E; Vonk, M Elizabeth
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.
Monin, Joan K.; Martire, Lynn M.; Schulz, Richard; Clark, Margaret S.
This study examined the association between care-recipients’ willingness to express emotions to spousal caregivers and caregiver’s well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients’ willingness to express happiness was ass...
Buhse, Marijean; Della Ratta, Carol; Galiczewski, Janet; Eckardt, Patricia
This study was conducted to determine which factors (clinical and demographic) are associated with mental and physical health-related quality of life (HRQOL) for caregivers of older persons with multiple sclerosis (MS). The Andersen's Healthcare Utilization Model guided this study. Knowledge of identified predictors of HRQOL may prompt nurses who care for persons with MS to address these issues and provide supportive care. A cross-sectional descriptive design was used to examine the relationship between patient with MS and caregiver clinical and demographic factors with caregiver physical and mental HRQOL. Patients with MS aged 60 years or older and their caregivers from four MS centers on Long Island, New York, self-selected into this study (n = 102). A caregiver survey was administered that collected demographic information and included validated questionnaires measuring HRQOL, caregiver burden, and caregiver perception of risk for neuropsychological impairment of patients with MS. Patient surveys collected demographic information and validated questionnaires measuring cognition, depression, and disability. Multivariate linear regression was used to examine patient and caregiver variables to explain caregiver physical and mental HRQOL. The caregivers in this study were older (mean age = 61 years) with existing comorbidities. We found that caregiver mental HRQOL was negatively associated with patient depression and, surprisingly, positively associated with caregiver burden and caregiver comorbidity of heart disease. Caregiver physical HRQOL was negatively associated with caregiver comorbidities of arthritis and diabetes and lower household income. The challenges older caregivers face when caring for older persons with MS have been shown to affect their mental and physical QOL. Nurses who care for older patients with MS will increasingly rely on older caregivers to provide patient-centered interventions. This descriptive study, based on the Anderson theoretical
Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth
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.
Alexandra J. Werntz
Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.
Akgul, Nur; Ozdemir, Leyla
This study aimed to identify caregiver burden and influencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2-12 months following transplant, indicating early recovery period after discharge. This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. The mean score of Zarit Burden Interview was 28.41 (SD = 13.90). Patients' symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was significantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulfill physical needs and who did not receive help for meeting patients' psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden. Copyright © 2014 Elsevier Ltd. All rights reserved.
Groeneveld, Marleen G.; Vermeer, Harriet J.; van IJzendoorn, Marinus H.; Linting, Marielle
The current study examined professional caregivers' perceived and physiological stress, and associations with the quality of care they provide. Participants were 55 female caregivers from childcare homes and 46 female caregivers from childcare centers in the Netherlands. In both types of settings, equivalent measures and procedures were used. On…
Park, Eunhee; Kim, Heejung; Steinhoff, Andreanna
Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers' needs from those of their care recipients or those of people caring for adults. This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents. A total of 17 studies were selected from literature searches conducted in 6 electronic databases: PubMed, Cochrane, CINAHL, PsycINFO, ERIC, and EMBASE. All databases searches were limited to articles published in the years 2004 to 2014 in peer-reviewed publications. Search terms consisted of "health-related Internet use," "eHealth," "Internet use for health-related purpose(s)," "Web-based resource(s)," and "online resources," combined with informal caregiver (or "parents") of "child," "adolescent," "student," "youth," and "teen." The age range of the children receiving care was limited to younger than 22 years. Their informal caregivers were defined as persons (parents) who provided unpaid care or assistance to a child or an adolescent with health problems. Among 17 empirical studies, the majority of informal caregivers of children with medical issues were the parents. Quantitative studies (14/17, 77%) reported prevalence and predictors of health-related Internet use, while mixed-methods and qualitative studies (3/17, 24%) investigated informal caregiver perceptions of helpful health-related Internet use and barriers of use. The prevalence of health-related Internet use varied (11%-90%) dependent upon how health-related Internet use was operationalized and measured. Disease-specific information was used for decision making about treatment, while social support via virtual communities and email were used for informal caregiver emotional needs. A digital divide of Internet access was identified in lower educated minorities. Most studies had methodological challenges resulting from
Nissen, Kathrine Grovn; Trevino, Kelly; Lange, Theis
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...
This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy. Copyright © 2017 Elsevier Ltd. All rights reserved.
Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B
Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The
Full Text Available Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers.Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA, Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI and EBSCO, China National Knowledge Infrastructure (CNKI and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs; psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety.Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT, cognitive behavioral therapy (CBT, emotion-focused therapy (EFT, comprehensive health enhancement support system (CHESS, FOCUS programme, existential behavioral therapy (EBT, telephone interpersonal counseling (TIP-C, problem-solving intervention (COPE.Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.
Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Rahman, Azriani Ab; Saat, Nur Zakiah Mohd; Din, Normah Che; Lubis, Syarif Husin; Ismail, Muhammad Faiz Mohd
Background Caregivers of children with learning disabilities have been shown to experience increased stress and greater negative caregiving consequences than those with typically developing children. There remains a lack of studies focusing on stress and coping mechanisms among caregivers of a wider age group and diagnosis of individuals with disabilities in Asian countries. The current study examines levels of perceived stress and associated child and caregiver factors among caregivers of children with learning disabilities in the Malaysian context. An additional aim was to determine whether caregiver coping styles may be predictors of perceived stress. Methods The Malay version of the Perceived Stress Scale with 10 items and the Brief COPE Scale were administered to a sample of 190 Malay caregivers of children with learning disabilities registered with community-based rehabilitation centres in Kelantan, a state in Peninsular Malaysia. Multiple linear regression analysis was applied to determine the predictors of perceived stress. Results The mean total perceived stress score of caregivers was 16.96 (SD = 4.66). The most frequently used coping styles found among caregivers included religion, acceptance and positive reframing, while substance use and behavioural disengagement were least frequently used. Higher perceived stress was significantly predicted among caregivers with fewer children, frequent use of instrumental support and behavioural disengagement coping, and lack of emotional support and religious coping. Conclusion Findings indicate that the perceived stress levels among caregivers were significantly predicted by different coping styles. It is vital to help the caregivers improve their good coping styles in order to reduce their stress levels. PMID:28381931
Isa, Siti Nor Ismalina; Ishak, Ismarulyusda; Rahman, Azriani Ab; Saat, Nur Zakiah Mohd; Din, Normah Che; Lubis, Syarif Husin; Ismail, Muhammad Faiz Mohd
Caregivers of children with learning disabilities have been shown to experience increased stress and greater negative caregiving consequences than those with typically developing children. There remains a lack of studies focusing on stress and coping mechanisms among caregivers of a wider age group and diagnosis of individuals with disabilities in Asian countries. The current study examines levels of perceived stress and associated child and caregiver factors among caregivers of children with learning disabilities in the Malaysian context. An additional aim was to determine whether caregiver coping styles may be predictors of perceived stress. The Malay version of the Perceived Stress Scale with 10 items and the Brief COPE Scale were administered to a sample of 190 Malay caregivers of children with learning disabilities registered with community-based rehabilitation centres in Kelantan, a state in Peninsular Malaysia. Multiple linear regression analysis was applied to determine the predictors of perceived stress. The mean total perceived stress score of caregivers was 16.96 (SD = 4.66). The most frequently used coping styles found among caregivers included religion, acceptance and positive reframing, while substance use and behavioural disengagement were least frequently used. Higher perceived stress was significantly predicted among caregivers with fewer children, frequent use of instrumental support and behavioural disengagement coping, and lack of emotional support and religious coping. Findings indicate that the perceived stress levels among caregivers were significantly predicted by different coping styles. It is vital to help the caregivers improve their good coping styles in order to reduce their stress levels.
Full Text Available WHO now recommends test-based management of malaria (TBMM across all age-groups. This implies artemisinin-based combination treatment (ACT should be restricted to rapid diagnostic test (RDT-positive cases. This is a departure from what caregivers in rural communities have been used to for many years.We conducted a survey among caregivers living close to 32 health centres in six districts in rural Ghana and used logistic regression to explore factors likely to influence caregiver acceptability of RDT based case management and concern about the denial of ACT on account of negative RDT results. Focus group discussions were conducted to explain the quantitative findings and to elicit further factors.A total of 3047 caregivers were interviewed. Nearly all (98% reported a preference for TBMM over presumptive treatment. Caregivers who preferred TBMM were less likely to be concerned about the denial of ACT to their test-negative children (O.R. 0.57, 95%C.I. 0.33-0.98. Compared with caregivers who had never secured national health insurance cover, caregivers who had valid (adjusted O.R. 1.30, 95% CI 1.07-1.61 or expired (adjusted O.R. 1.38, 95% CI 1.12-1.73 insurance cover were more likely to be concerned about the denial of ACT to their RDT-negative children. Major factors that promote TBMM acceptability include the perception that a blood test at health centre level represents improvement in the quality of care, leads to improvement in treatment outcomes, and offers opportunity for better communication between health workers and caregivers. Acceptability is also enhanced by engaging caregivers in the procedures of the test. Apprehensions about negative health worker attitude could however undermine acceptance.Test (RDT-based management of malaria in under-five children is likely to be acceptable to caregivers in rural Ghana. The quality of caregiver-health worker interaction needs to be improved if acceptability is to be sustained.
Full Text Available BACKGROUND: In 2009 an estimated 5.3 million people in the United States were afflicted with Alzheimer's disease, a degenerative form of dementia. The impact of this disease is not limited to the patient but also has significant impact on the lives and health of their family caregivers. The Resources for Enhancing Alzheimer's Caregiver Health (REACH II program was developed and tested in clinical studies. The REACH II program is now being delivered by community agencies in several locations. This study examines the impact of the REACH II program on caregiver lives and health in a city in north Texas. STUDY DESIGN: Family caregivers of Alzheimer's patients were assessed using an instrument covering the multi-item domains of Caregiver Burden, Depression, Self-Care, and Social Support upon enrollment in the program and at the completion of the 6 month intervention. The domain scores were analyzed using a multivariate paired t-test and Bonferroni confidence interval for the differences in pre- and post-service domain scores. RESULTS: A total of 494 families were enrolled in the program during the period January 1, 2011 through June 30, 2012. Of these families 177 completed the 6 month program and have pre - and post service domain scores. The median age for the caregivers was 62 years. The domain scores for Depression and Caregiver Burden demonstrated statistically significant improvements upon program completion. CONCLUSION: The REACH II intervention was successfully implemented by a community agency with comparable impacts to those of the clinical trial warranting wider scale implementation.
Delzescaux, Sabine; Blondel, Frédéric
Being a caregiver is difficult, even more so when it comes to helping people with a neurodegenerative disease. These caregivers, either family members or close friends, are confronted with an unexpected delegation which can prove to be highly complex as the pitfalls can indeed be significant. Moreover, the support the caregivers can provide depends on the support they can get for themselves. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo
Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.
Savundranayagam, Marie Y.; Brintnall-Peterson, Mary
This study investigated the extent to which a psychoeducational intervention supports family-centered care by influencing health risk and self-care behaviors of caregivers of individuals with Alzheimer's disease (N = 325). Moreover, this study investigated the extent to which changes in self-efficacy explained changes in health risk and self-care…
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.
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
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
Chan, Kwok Ying; Yip, Terence; Yap, Desmond Y H; Sham, Mau Kwong; Wong, Yim Chi; Lau, Vikki Wai Kee; Li, Cho Wing; Cheng, Benjamin Hon Wai; Lo, Wai Kei; Chan, Tak Mao
Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. Open-label randomized controlled trial. All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. The study is limited by a relatively small sample size and short duration. Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety. Copyright © 2016 National Kidney
Michael Gabriel Fetterolf
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.
Blanton, Sarah; Dunbar, Sandra; Clark, Patricia C
Background Family members provide valuable contributions during rehabilitation after stroke, but frequently report higher incidences of burden, depression, and social isolation during caregiving. Thus, effective interventions to reduce stroke impact on the family are needed. Objectives To evaluate the content validity and satisfaction of a caregiver-focused web-based intervention designed to improve stroke survivor physical function while reducing caregiver negative outcomes. Methods Caregivers of individuals with stroke (N = 6) and expert rehabilitation researchers (N = 4) were presented with a novel, web-based intervention (CARE-CITE) designed to foster problem-solving and skill-building while facilitating caregiver involvement during constraint-induced movement therapy. Caregivers rated CARE-CITE for usefulness, ease of use, acceptability, and time to complete. Rehabilitation experts evaluated content for accuracy, feasibility, acceptability, problem relevance and ease of use. Ratings were assessed using a five-point Likert-type response scales (1 = strongly disagree to 5 = strongly agree). Results On average, all caregivers agreed or strongly agreed that the modules were useful (4.42), easy to use (4.60), and acceptable (4.41). Mean total satisfaction score was 4.45, and average review time was 15 min per module. Expert reviewers agreed or strongly agreed that each module was accurate (4.95), feasible (4.8), easy to use (4.86), acceptable (4.96), and had appropriate problem relevance (4.65). Conclusions The CARE-CITE intervention may be a viable program for caregivers of patients with stroke. Currently a pilot study is underway to evaluate the impact of the intervention on caregiver mental health, family conflict around stroke recovery and stroke survivor upper extremity function.
Jens E. Jansen
Full Text Available Background: Research has shown that caregivers of persons with psychosis play an invaluable role in recovery, but unfortunately, often report high levels of distress. While cognitive models of caregiver distress have been well-supported, there is still limited knowledge of the psychological factors involved. Recent advances in cognitive behavioral therapy seem to converge on the importance of acceptance- and mindfulness based processes.Aim: To examine the impact of psychological flexibility on caregiver distress in the early phases of psychosis, while controlling for known predictors of caregiver distress.Method: Within a cross-sectional design, 101 caregivers of 38 persons with first-episode psychosis in a clinical epidemiological sample completed a series of self-report measures.Results: A linear mixed model analysis found that, after controlling for caregiver socio-demographic factors, service user symptoms, drug use and global functioning, psychological flexibility was a significant predictor of caregiver distress.Conclusion: Greater level of psychological flexibility in caregivers, seems to be related to lower levels of caregiver distress. This finding corresponds to studies within a broad range of emotional disorders. There may be important clinical implications in terms of facilitating the process of acceptance through interventions from the ‘third-wave’ or contextual cognitive behavioral therapies.
Alfaro, Noelia; Lázaro, Pablo; Gabriele, Giovanna; Garcia-Vicuña, Rosario; Jover, Juan Ángel; Sevilla, Jordi
To determine the perceptions, attitudes and experiences among family caregivers of patients with musculoskeletal diseases (MSD). Descriptive, exploratory, qualitative study. Two discussion groups were organized with family caregivers of MSD patients, representing the caregiver profile: gender (men/women) and age (31-45 years/46-65 years); and patient profiles: MSD type (rheumatoid arthritis/ankylosing spondylitis), work status (yes or no for the variables housewife, at least 3 episodes of sick leave, patients who abandoned their work, and patients with permanent work disability). A content analysis based on the Grounded Theory was done to detect and explore emerging categories. The emerging dimensions were: alterations in daily life activities, need for caregiver support, physical and psychological impact on the caregiver, characteristics of the patient, and several aspects of care. Relevant experiences mentioned were: the diagnosis of a MSD changes the patient and their family members' life affecting work, financial, social, psychological and physical spheres, making it necessary help for basic activities of daily living. Early age at onset or severe MSDs require dedication and effort on the part of caregivers which increases with time. This leads to a great emotional overload on the caregivers, which may be modulated by the support they receive when providing care. The primary consequences for caregivers are loss of purchasing power, work problems, social isolation and emotional stress. Programs for effective at-home support need to be developed with streamlined administrative processes to quickly classify the level of disability and provide official assistance. Copyright © 2012 Elsevier España, S.L. All rights reserved.
Van Houtven Courtney
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
Isabela Ecker Dresch
Full Text Available The caregiver in a family may be exposed to several stressful events resultant from the care process. In cases of caregivers of individuals with aphasia, they can perform tasks beyond the basic daily functions. Performing functions for managing the subject's relationships and assuming for themselves the role of interpreter. Understanding the importance of the family caregiver for the individual with aphasia, the present study aims to report activities carried out in the Group of Caregivers of the Extension Project "Assistance in the Construction of a Support Network for Amateur Subjects of the Itajaí Area" at UNIVALI. The activities carried out were of a therapeutic, educational and health promotion domain. Based on the participants' reports, the results showed that the recovery of self-care is important towards improving the quality of life of the caregiver and the quality of life of the aphasic subject.
Bauer, Rita; Döring, Antje; Schmidt, Tanja; Spießl, Hermann
The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.
Lindauer, Allison; Sexson, Kathryn; Harvath, Theresa A
: This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76.
Bialon, Laura Nelson; Coke, Sallie
The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.
Rosen, Jamie; Albin, Stephanie; Sicherer, Scott H
Studies reveal deficits in caregivers' ability to prevent and treat food-allergic reactions with epinephrine and a consumer preference for validated educational materials in audiovisual formats. This study was designed to create brief, validated educational videos on food allergen avoidance and emergency management of anaphylaxis for caregivers of children with food allergy. The study used a stepwise iterative process including creation of a needs assessment survey consisting of 25 queries administered to caregivers and food allergy experts to identify curriculum content. Preliminary videos were drafted, reviewed, and revised based on knowledge and satisfaction surveys given to another cohort of caregivers and health care professionals. The final materials were tested for validation of their educational impact and user satisfaction using pre- and postknowledge tests and satisfaction surveys administered to a convenience sample of 50 caretakers who had not participated in the development stages. The needs assessment identified topics of importance including treatment of allergic reactions and food allergen avoidance. Caregivers in the final validation included mothers (76%), fathers (22%), and other caregivers (2%). Race/ethnicity were white (66%), black (12%), Asian (12%), Hispanic (8%), and other (2%). Knowledge tests (maximum score = 18) increased from a mean score of 12.4 preprogram to 16.7 postprogram (p audiovisual curriculum on food allergy improved knowledge scores and was well received.
Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna
The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.
Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro
Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions.
Kim, Eun-Young; Yeom, Hyun-E
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
Goren, Amir; Gilloteau, Isabelle; Lees, Michael; DaCosta Dibonaventura, Marco
Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Caregivers (n = 1,713) for patients with cancer and non-caregivers (n = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Caregivers for patients with cancer vs. non-caregivers reported significant (P status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.
Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available.
Burke, Shanna L; Burgess, Aaron; Cadet, Tamara
Objective The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable.
Messer Lynne C
Full Text Available Abstract Background In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations. Methods Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV. Results Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one's child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness
Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal
To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.
Demiris, George; Oliver, Debra Parker; Washington, Karla; Fruehling, Lynne Thomas; Haggarty-Robbins, Donna; Doorenbos, Ardith; Wechkin, Hope; Berry, Donna
The Problem Solving Intervention (PSI) is a structured, cognitive-behavioral intervention that provides people with problem-solving coping skills to help them face major negative life events and daily challenges. PSI has been applied to numerous settings but remains largely unexplored in the hospice setting. The aim of this pilot study was to demonstrate the feasibility of PSI targeting informal caregivers of hospice patients. We enrolled hospice caregivers who were receiving outpatient services from two hospice agencies. The intervention included three visits by a research team member. The agenda for each visit was informed by the problem-solving theoretical framework and was customized based on the most pressing problems identified by the caregivers. We enrolled 29 caregivers. Patient's pain was the most frequently identified problem. On average, caregivers reported a higher quality of life and lower level of anxiety postintervention than at baseline. An examination of the caregiver reaction assessment showed an increase of positive esteem average and a decrease of the average value of lack of family support, impact on finances, impact on schedules, and on health. After completing the intervention, caregivers reported lower levels of anxiety, improved problem solving skills, and a reduced negative impact of caregiving. Furthermore, caregivers reported high levels of satisfaction with the intervention, perceiving it as a platform to articulate their challenges and develop a plan to address them. Findings demonstrate the value of problem solving as a psycho-educational intervention in the hospice setting and call for further research in this area.
Lu, Nan; Liu, Jinyu; Lou, Vivian W Q
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.
Judge, Katherine S.; Yarry, Sarah J.; Orsulic-Jeras, Silvia
Purpose: The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d)…
Slev, Vina N.; Pasman, H. Roeline W.; Eeltink, Corien M.; Van Uden-Kraan, Cornelia F.; Verdonck-De Leeuw, Irma M.; Francke, Anneke L.
Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and
Lau, Bobo Hi-Po; Cheng, Cecilia
Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.
Grano, Caterina; Lucidi, Fabio; Violani, Cristiano
Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.
Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T; Lee, Jong Eun; Kim, Kim B
This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives. A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 (1/2)-2 hours. Thematic analysis was conducted by two bilingual researchers. Three key themes were identified: the caregiver role - competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.
Lerner, Debra; Chang, Hong; Rogers, William H; Benson, Carmela; Lyson, Mercedes C; Dixon, Lisa B
The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.
Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent
The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.
Ducharme, Francine; Lévesque, Louise; Lachance, Lise; Kergoat, Marie-Jeanne; Coulombe, Renée
The prevalence of Alzheimer's disease is rising. The large number of new cases identified each year means that many new families will set upon a long trajectory of caring for a relative with dementia. Diagnostic disclosure of Alzheimer's disease marks the official transition to the caregiver role, yet this early period of the caregiver career have rarely been studied. Based on Meleis's theoretical framework for role transition, the objectives of this study were to document the characteristics of the caregiving context during the transition to the caregiver role following diagnostic disclosure of Alzheimer's disease and to compare these characteristics by caregiver gender and kinship tie to the relative. A descriptive design was used. Data were collected using standardized measures selected in accordance with the role transition theoretical framework. The sample recruited in Quebec (Canada) cognition clinics comprised 122 caregivers of an elderly relative diagnosed with Alzheimer's disease in the past nine months. Findings reveal the context of care to be marked by several challenges for caregivers. The majority of caregivers receives little informal support, has poor knowledge of available formal services, and has difficulty planning ahead for the relative's future care needs. Caregivers themselves report a lack of preparedness to provide care. Compared with men caregivers, women seem to have more problems controlling disturbing thoughts about their new caregiver role and to experience more family conflicts and psychological distress. Compared with offspring caregivers, spouse caregivers are less able to respond to the relative's disruptive behaviors, make less use of problem-solving strategies, and report fewer family conflicts. The challenges faced by caregivers during the transition to the caregiver role are sensitive to nursing interventions. Pro-active interventions from the outset of the caregiving career, such as early assessment of caregiver needs for
Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored
Hibbs, Rebecca; Rhind, Charlotte; Salerno, Laura; Lo Coco, Gianluca; Goddard, Elizabeth; Schmidt, Ulrike; Micali, Nadia; Gowers, Simon; Beecham, Jennifer; Macdonald, Pamela; Todd, Gillian; Campbell, Iain; Treasure, Janet
The aim of this study was to develop and validate a new questionnaire designed to measure caregiver skills that, in line with the interpersonal component of the cognitive interpersonal maintenance model (Schmidt and Treasure, J Br J Clin Psychol, 45, 343-366, 2006), may be helpful in the support of people with anorexia nervosa (AN). A further aim is to assess whether this scale is sensitive to change following skills-based caregiver interventions. The Caregiver Skills (CASK) scale was developed by a group of clinicians and caregivers. Preliminary versions of the scale devised for both caregivers and parents were given at baseline and at follow-up after two studies of caregiver interventions (a clinical trial of the effectiveness of guided self-help and training workshops). Exploratory and confirmatory factor analyses (CFA) were used to test the factorial structure of the CASK scale. Cronbach's alpha was used to measure internal consistency of the CASK scales. Exploratory Factor Analysis suggested a six component solution (Bigger Picture, Self-Care, Biting-Your-Tongue, Insight and Acceptance, Emotional Intelligence and Frustration Tolerance) and this model was confirmed with CFA. Significant clinically relevant correlations were found between the CASK scales and other standardised measures of caregivers' attitudes and behaviours. Furthermore, greater improvements on abilities measured by the CASK scale were found in caregivers who received skills-training than caregivers assigned to a 'treatment as usual' condition. The CASK scale is a measure of the fidelity of interventions based on the cognitive interpersonal maintenance model and is sensitive to the intensity of the intervention provided. © 2014 Wiley Periodicals, Inc.
Ana Karina Monte Cunha Marques
Full Text Available Estudo qualitativo, do tipo descritivo, objetivando conhecer a experiência de cuidar de pessoas doentes no contexto dos lares, analisando as implicações do apoio social na saúde física e emocional do familiar cuidador. Os dados foram coletados por meio da entrevista semi-estruturada junto a dezoito familiares cuidadores de pessoas com doenças crônicas. A técnica do discurso do sujeito coletivo foi utilizada para a organização dos dados. Constatou-se que todos os informantes eram do sexo feminino, com idade média de cinquenta anos, possuiam até o nível médio de escolaridade, cuidavam ininterruptamente de pessoa doente, predominando as mães com sequela de acidente vascular cerebral. Relatavam comprometimento da sua saúde relacionado ao cuidado realizado: dor na coluna, hipertensão, enxaqueca e depressão. Os discursos coletivos são sugestivos da quebra das redes sociais e da escassez de apoio, levando a pessoa a rejeitar a condição de cuidador. A sobrecarga ficou caracterizada pelo familiar cuidador perceber-se diante de inúmeras situações de enfrentamento, muitas das quais não conseguia administrar.This is a qualitative and descriptive study aiming to know the experience of taking care of sick people in the context of homes, analyzing the implications of the social support in the physical and emotional health of the family caregiver. The data had been collected by means of the semi-structured interview with 18 family caregivers of people with chronic illnesses. The technique of the Collective subject discourse was used for the organization of the data. One evidenced that all the informers were of the feminine sex, with average age of 50 years and medium instructional level. They took care uninterruptedly of sick people predominating the mothers with sequel of stroke. They reported health complications related to the care carried through: back pain, hypertension, migraine and depression. The collective speeches are
The aim of thestudy is to compare data on the examined populationof informal caregivers of people sufferingfrom dementia with previous studies, aswell as to assess the correlation between (i) depressiondetermined on the basis of the Centerfor Epidemiologic Studies Depression Scaleand (ii) caregiver...... dementia fromdifferent backgrounds were evaluated usingthe Zarit Caregiver Burden Scale and the Centerfor Epidemiologic Studies DepressionScale. Demographic data about the time devotedto caregiving and the number of hoursspend on caregiving weekly were gathered. Thetype of dementia and its stage were...... registeredusing the Global Deterioration Scale (GDS).With the aid of the Statistica StatSoft program,mutual correlations between the parameterswere measured. The study was conducted withinthe framework of AAL UnderstAID – a platformthat supports and helps to understandand assist caregivers in the care...
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.
In Nigeria, a Role Model Mother/Caregiver (RMM/C) programme was initiated by the National Malaria Control Programme (NMCP) to provide home-based management of malaria. Criteria for RMM/C selection were developed centrally by the Nigerian NMCP for community use. RMM/Cs were identified and recruited by the ...
Smith-Osborne, Alexa; Felderhoff, Brandi
Social work theory advanced the formulation of the construct of the sandwich generation to apply to the emerging generational cohort of caregivers, most often middle-aged women, who were caring for maturing children and aging parents simultaneously. This systematic review extends that focus by synthesizing the literature on sandwich generation caregivers for the general aging population with dementia and for veterans with dementia and polytrauma. It develops potential protective mechanisms based on empirical literature to support an intervention resilience model for social work practitioners. This theoretical model addresses adaptive coping of sandwich- generation families facing ongoing challenges related to caregiving demands.
Full Text Available Background: The most common neurodegenerative disease is dementia. Family of dementia patients says that their lives have been changed extensively after happening of dementia to their patients. One of the problems of family and caregivers is depression of the caregiver. In this study, we aimed to find the prevalence of depression and factors can affect depression in the dementia caregivers. Materials and Methods: This study was cross-sectional study with convenient sampling method. Our society was 96 main caregivers of dementia patients in the year 2015 in Iran. We had two questionnaires, a demographic and Beck Depression Inventory (BDI. BDI Cronbach's alpha is 0.86 for psychiatric patients and 0.81 for nonpsychiatric persons, and Beck's scores are between 0 and 64. We used SPSS version 22 for statistical analysis. Results: According to Beck depression test, 69.8% (n = 67 out of 96 of all caregivers had scores in the range of depression. In bivariate analysis, we found higher dementia severity and lower support of other family members from the caregiver can predict higher depression in the caregiver. As well, in regression analysis using GLM model, we found higher age and lower educational level of the caregiver can predict higher depression in the caregiver. Moreover, regression analysis approved findings about severity and support of other family members in bivariate analysis. Conclusion: High-level depression is found in caregivers of dementia patients. It needs special attention from healthcare managers, clinicians and all of health-care personnel who deals with dementia patients and their caregivers.
Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T.; Lee, Jong Eun; Kim, Kim B.
Aim This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Background Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers’ unique caregiving experiences from their perspectives. Method A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½-2 hours. Thematic analysis was conducted by two bilingual researchers. Findings Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. Conclusion The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population. PMID:18727754
Minaya, Patricia; Baumstarck, Karine; Berbis, Julie; Goncalves, Anthony; Barlesi, Fabrice; Michel, Gérard; Salas, Sébastien; Chinot, Olivier; Grob, Jean-Jacques; Seitz, Jean François; Bladou, Franck; Clement, Audrey; Mancini, Julien; Simeoni, Marie-Claude; Auquier, Pascal
The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers. A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory. The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach's alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient's characteristics. Reproducibility and sensitivity to change were found satisfactory. The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients' QoL which are key-actors in the provision of health care. Copyright © 2011 Elsevier Ltd. All rights reserved.
Walczak, Adam; Butow, Phyllis N; Clayton, Josephine M; Tattersall, Martin H N; Davidson, Patricia M; Young, Jane; Epstein, Ronald M
Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients' and caregivers' efforts to communicate about these issues with their healthcare team. This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL-an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients' and caregivers' participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators. Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations. Australian New Zealand Clinical Trials Registry ACTRN12610000724077. Published by the BMJ Publishing Group Limited. For
Morimoto, Hiroshi; Furuta, Nobuo; Kono, Mitsue; Kabeya, Mayumi
To examine the stress-buffering effect of coping strategies on the adverse effects of interrole conflict on the mental health of employed family caregivers, and clarify the moderating role of attentional control on this stress-buffering effect. Data were drawn from a two-wave longitudinal online survey of employed Japanese family caregivers of people with dementia (263 males, 116 females; age 51.54 ± 9.07 years). We assessed interrole conflict, coping strategies, attentional control, mental health variables (psychological strain and quality of life), and confounding factors. Hierarchical regression analyses controlled for sociodemographic factors found formal support seeking had a stress-buffering effect for strain- and behavior-based caregiving interfering with work (CIW) only on psychological strain, and was moderated by attentional control. Single slope analysis showed higher CIW was related to higher psychological strain in those with greater use of formal support seeking and lower attentional control, but not in those with higher attentional control. Greater use of formal support seeking weakens the adverse effects of strain- and behavior-based CIW on psychological strain in people with high attentional control. Attentional control is a key factor in the stress-buffering effect of formal support seeking on strain- and behavior-based CIW.
Ludvigsson, Jonas F; Roy, Abhik; Lebwohl, Benjamin; Green, Peter H R; Emilsson, Louise
Partner burden is common in celiac disease (CD), but it is unclear if parents of children with CD have increased burden, and if this may translate into depression and anxiety meriting healthcare. Nationwide population-based study of 41,753 parents and spouses ("caregivers") to 29,096 celiac patients and 215,752 caregivers to 144,522 matched controls. Caregivers were identified from the Swedish Total Population Register, and linked to data on psychiatric disease in the National Patient Registry. Hazard ratios (HRs) for depression, anxiety, and (as a reference outcome measure) bipolar disorder were examined in a lifetime fashion but also in temporal relationship to date of CD diagnosis using Cox regression. A priori, we focused on parents of individuals diagnosed ≤19 years of age (children at the age of disease onset) and spouses of individuals diagnosed in adulthood, as such parents and spouses ("high-risk caregivers") were most likely to live together with the patient at time of disease onset. On Cox analysis, depression was 11% more common in high-risk caregivers (HR=1.11: 95%CI=1.03-1.19) than in control caregivers while anxiety was 7% more common (HR=1.07: 95%CI=0.98-1.16). Combining anxiety and depression into a composite outcome measure, there was an 8% statistically significant risk increase (95%CI=1.02-1.14). The highest excess risks for both depression and anxiety were seen just before and 4-8 years after the CD diagnosis. In contrast, bipolar disorder was not more common in caregivers to CD patients. Caregivers to patients with CD may be at increased risk of severe burden. Copyright © 2016 Editrice Gastroenterologica Italiana S.r.l. Published by Elsevier Ltd. All rights reserved.
Full Text Available This qualitative research study used a phenomenological lens to examine the perspectives of familial caregivers in the Laikipia Region of Kenya. Through the narrative of the caregivers’ lived experience, key factors identified included social supports, rewards of caregiving, and lessons to others. Overarching basic themes centered on food insecurity, disease, rejection, lack of support, education challenges, inadequate land ownership, the absence of male support and neglect issues. These unique perspectives can contribute towards our understanding of policy and programming needs for orphaned children and familial caregivers in rural Kenya and within the rural areas of the East African context.
Pickett, Treven C.; Wilder Schaaf, Kathryn P.; Taylor, Brent C.; Gravely, Amy; Van Houtven, Courtney Harold; Friedemann-Sánchez, Greta; Griffin, Joan M.
This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs' Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health's Patient Reported Outcome Measurement Information System (PROMIS) Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training). Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients' emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers' relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed. PMID:26770015
Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace
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.
Lucas, J E; Richter, L M; Daelmans, B
An estimated 43% of children younger than 5 years of age are at elevated risk of failing to achieve their human potential. In response, the World Health Organization and UNICEF developed Care for Child Development (CCD), based on the science of child development, to improve sensitive and responsive caregiving and promote the psychosocial development of young children. In 2015, the World Health Organization and UNICEF identified sites where CCD has been implemented and sustained. The sites were surveyed, and responses were followed up by phone interviews. Project reports provided information on additional sites, and a review of published studies was undertaken to document the effectiveness of CCD for improving child and family outcomes, as well as its feasibility for implementation in resource-constrained communities. The inventory found that CCD had been integrated into existing services in diverse sectors in 19 countries and 23 sites, including child survival, health, nutrition, infant day care, early education, family and child protection and services for children with disabilities. Published and unpublished evaluations have found that CCD interventions can improve child development, growth and health, as well as responsive caregiving. It has also been reported to reduce maternal depression, a known risk factor for poor pregnancy outcomes and poor child health, growth and development. Although CCD has expanded beyond initial implementation sites, only three countries reported having national policy support for integrating CCD into health or other services. Strong interest exists in many countries to move beyond child survival to protect and support optimal child development. The United Nations Sustainable Development Goals depend on children realizing their potential to build healthy and emotionally, cognitively and socially competent future generations. More studies are needed to guide the integration of the CCD approach under different conditions. Nevertheless
Donovan, Rhonda; Williams, Allison M
The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture. © 2014 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
Chien, Wai Tong; Yip, Annie L K; Liu, Justina Y W; McMaster, Terry W
Family intervention for psychotic disorders is an integral part of psychiatric treatment with positive effects on patients' mental state and relapse rate. However, the effect of such family-based intervention on caregivers' psychological distress and well-being, especially in non-Western countries, has received comparatively much less attention. To test the effects of guided problem-solving-based manual-guided self-learning programme for family caregivers of adults with recent-onset psychosis over a 6-month period of follow-up, when compared with those in usual family support service. A single-centre randomised controlled trial, which was registered at ClinicalTrials.gov (NCT02391649), with a repeated-measures, two-arm (parallel-group) design. One main psychiatric outpatient clinic in the New Territories of Hong Kong. A random sample of 116 family caregiverss of adult outpatients with recent-onset psychosis. Following pre-test measurement, caregivers were assigned randomly to one of two study groups: a 5-month self-help, problem-solving-based manual-guided self-learning (or bibliotherapy) programme (in addition to usual care), or usual family support service only. Varieties of patient and caregiver health outcomes were assessed and compared at baseline and at 1-week and 6-month post-intervention. One hundred and eleven (96%) caregivers completed the 6-month follow-up (two post-tests); 55 of them (95%) completed ≥4 modules and attended ≥2 review sessions (i.e., 75% of the intervention). The family participants' mean age was about 38 years and over 64% of them were female and patient's parent or spouse. Multivariate analyses of variance indicated that the manual-guided self-learning group reported significantly greater improvements than the usual care group in family burden [F(1,110)=6.21, p=0.006] and caregiving experience [F(1,110)=6.88, p=0.0004], and patients' psychotic symptoms [F(1,110)=6.25, p=0.0003], functioning [F(1,110)=7.01, p=0.0005] and number of
Tilahun, Dejene; Hanlon, Charlotte; Fekadu, Abebaw; Tekola, Bethlehem; Baheretibeb, Yonas; Hoekstra, Rosa A
Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia. Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs. Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to
Wilks, Scott E
The purpose of this study was to evaluate psychometric properties of the shortened Resilience Scale (15-item version RS15) among a sample of Alzheimer's caregivers. Self-reported data were collected from 229 participants at 2 Alzheimer's caregiver conferences. RS15 principal axis factoring indicated a single-dimensional solution with all items loaded. Reliability was strong. Convergent validity for the RS15 was suggested through its correlations with stress, family support, and friend support. Odds ratios showed significant likelihoods of high resilience given low stress and high social support. The results confirmed the RS15 to be a psychometrically sound measure that can be used to appraise the efficacy of adaptability among Alzheimer's caregivers.
DuBenske, Lori L; Gustafson, David H; Namkoong, Kang; Hawkins, Robert P; Atwood, Amy K; Brown, Roger L; Chih, Ming-Yuan; McTavish, Fiona; Carmack, Cindy L; Buss, Mary K; Govindan, Ramaswamy; Cleary, James F
Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites. A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that received Internet and CHESS. Caregivers were provided a computer and Internet service if needed. Written surveys were completed at pretest and during the intervention period bimonthly for up to 24 months. Analyses of covariance (ANCOVAs) compared the intervention's effect on caregivers' disruptiveness and burden (CQOLI-C), and negative mood (combined Anxiety, Depression, and Anger scales of the POMS) at 6 months, controlling for blocking variables (site, caregiver's race, and relationship to patient) and the given outcome at pretest. Caregivers randomized to CHESS reported lower burden, t(84) = 2.36, p = .021, d = .39, and negative mood, t(86) = 2.82, p = .006, d = .44, than those in the Internet group. The effect on disruptiveness was not significant. Although caring for someone with a terminal illness will always exact a toll on caregivers, eHealth interventions like CHESS may improve caregivers' understanding and coping skills and, as a result, ease their burden and mood.
van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu
Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.
Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios
There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. © 2016 John Wiley & Sons Ltd.
Corry, Margarita; While, Alison; Neenan, Kathleen; Smith, Valerie
To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. The electronic databases of PubMed, CINAHL, British Nursing Index, PsycINFO, Social Science Index (January 1990-May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R-AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. © 2014 John Wiley & Sons Ltd.
Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal
The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups. Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ 2 test. The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004). To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset. © 2017 Japanese Psychogeriatric Society.
McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda
The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.
Wittenberg, Elaine; Ferrell, Betty; Koczywas, Marianna; Ferraro, Catherine
Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making. . The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. . The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication. . Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.
Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan
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.
Male, Dana A; Fergus, Karen D; Stephen, Joanne E
To date, our understanding of the caregiver experience has been informed primarily by guided inquiry in the form of interviews and surveys, yielding information that is limited by the scope of researchers questions. The intent of this study was to explore the experience of caring for a loved one with advanced-stage cancer by means of participant-determined communication, using interactive, text-based transcripts from synchronous online support groups. Grounded theory analysis of the group transcripts yielded the core category continuous confrontation, characterized by major challenges (unrelenting assault, a new us, and the costs of caregiving) and minor triumphs (refuelling and living more intentionally). This unique method of data collection allowed for an especially candid, intersubjective group account of what it is to be a caregiver for an ill loved one without compromising the details that caregivers themselves consider important.
Gabor, Anne M; Fritz, Jennifer N; Roath, Christopher T; Rothe, Brittany R; Gourley, Denise A
Social validity of behavioral interventions typically is assessed with indirect methods or by determining preferences of the individuals who receive treatment, and direct observation of caregiver preference rarely is described. In this study, preferences of 5 caregivers were determined via a concurrent-chains procedure. Caregivers were neurotypical, and children had been diagnosed with developmental disabilities and engaged in problem behavior maintained by positive reinforcement. Caregivers were taught to implement noncontingent reinforcement (NCR), differential reinforcement of alternative behavior (DRA), and differential reinforcement of other behavior (DRO), and the caregivers selected interventions to implement during sessions with the child after they had demonstrated proficiency in implementing the interventions. Three caregivers preferred DRA, 1 caregiver preferred differential reinforcement procedures, and 1 caregiver did not exhibit a preference. Direct observation of implementation in concurrent-chains procedures may allow the identification of interventions that are implemented with sufficient integrity and preferred by caregivers. © 2016 Society for the Experimental Analysis of Behavior.
Gage-Bouchard, Elizabeth A; LaValley, Susan; Mollica, Michelle; Beaupin, Lynda Kwon
Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.
Paula W. Rushton PhD
Full Text Available Objective: In this study, we aimed to describe the burden of family caregivers providing powered wheelchair-related and overall assistance and test the hypotheses that caregiver burden correlates with participation, wheelchair skills capacity, anxiety, depression, and social support. Methods: Cross-sectional study. Participants included 35 family caregivers of powered wheelchair users. Caregivers were assessed using the Power Mobility Caregiver Assistive Technology Outcome Measure, Late Life Disability Instrument, Wheelchair Skills Test Questionnaire for caregivers, Hospital Anxiety and Depression Scale, and Interpersonal Support Evaluation List–12. Results: The most burdensome powered wheelchair assistance items were providing verbal hints/directions, needing to be nearby, anxiety, and fear that user may be harmed. The most burdensome overall assistance item was feeling limited in recreational/leisure activities. Caregiver burden was significantly correlated with participation limitations, anxiety, depression, and social support. Discussion: Caregivers experience burden for wheelchair-related and overall help, especially psychological burden. Such results have implications for the type of resources required to support family caregivers.
Cabral, Lídia; Duarte, João; Ferreira, Manuela; dos Santos, Carlos
The current policy guidelines on mental health aim to keep the mentally ill within the community, with the development of social support, including families, hence the emergence of the role of the family caregiver. To identify socio-demographic variables influencing anxiety, depression and stress for the informal caregivers of the mentally ill; to determine the influence of family background variables on caregiver anxiety, depression and stress; to analyse the relationship between social support and caregiver overload with caregiver anxiety, depression and stress. Cross-sectional, descriptive and correlational study with 104 caregivers, mostly female (62.5%), aged between 22 and 77 years with a mean age of 52.03 years. The following were used as instruments: the Family Apgar Scale; the Satisfaction with Social Support Scale (ESSS); the Caregiver Overload Scale (ESC); the Anxiety, Depression and Stress Scales (EADS-21). We found that females have higher rates (Panxiety, depression and stress; participants with less education have more anxiety than those with higher and secondary education (P=.001); caregivers living in rural areas have higher levels of depression (P=.044) and stress (P=.041); those who perceive belonging to families with marked dysfunctions have higher levels of depression (P=.0.001) and stress (P=.000); the higher the overload, the higher the levels of anxiety (P=.002), depression and stress (P=.000). I tis necessary to develop strategies for local and community intervention to promote mental health and prevent mental illness. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.
Forsbrey, April D.; Frabutt, James M.; Smith, Heather L.
The authors used qualitative research methodology to examine the lives of caregivers of court-involved youths. Caregiver social isolation, including overall lack of support, lack of school support, and isolation from self, emerged as a salient theme across 7 domains. Implications for counselors are discussed, and brief descriptions of several…
Abajo, María; Rodríguez-Sanz, Maica; Malmusi, Davide; Salvador, María; Borrell, Carme
To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers. The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care. Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain. Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men. The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems. The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers. © 2016 John Wiley & Sons Ltd.
Amiresmaili, Mohammadreza; Emrani, Zahra
High hospital costs are a challenge that health system face. Additionally, studies identified manpower deficiency as a problem in health system. Hospital is a place where patients with different physical and mental conditions come to. Their families and friends' companionship can facilitate this situation for them. This study illustrates the roles of informal caregivers in hospital. This is a phenomenological qualitative study. Data were gathered through semistructured interviews. We interviewed 22 informal caregivers and 9 nurse staffs from different departments of hospital. They were selected through purposeful and snowball sampling approach. The framework method was used for data analysis. We found 3 main themes including (a) roles of informal caregivers, (b) opportunities of presence of the informal caregivers in the hospital, and (c) threats of presence of informal caregivers. This study shows some roles for informal caregivers including mental supports, consultation, decision-making, and care roles. Concerning the shortage of manpower in Iran's hospitals, nurses have less time to take care of each patient; therefore, using informal caregivers as an implicit strategy to overcome nursing shortage and to reduce hospital costs seems to be beneficial. We suggest that an appropriate plan is necessary to make use of them for filling this gap to some extent, as well as providing training sessions and facilities for companions acting as informal caregivers. Copyright © 2018 John Wiley & Sons, Ltd.
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.
Kenneth Ayuurebobi Ae-Ngibise
Full Text Available Background: Families and friends who give care to people with mental disorders (MDs are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective: The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design: A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results: Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions: Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons
El-Saifi, Najwan; Moyle, Wendy; Jones, Cindy; Alston-Knox, Clair
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.
Exel, J.; de Graaf, G.; Brouwer, W.
Objective: To investigate informal caregivers' attitudes toward respite care. Method: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A
Cil Akinci, Ayse; Pinar, Rukiye
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
Kelly, Michelle M; Coller, Ryan J; Hoonakker, Peter Lt
Patient portals, web-based personal health records linked to electronic health records (EHRs), provide patients access to their healthcare information and facilitate communication with providers. Growing evidence supports portal use in ambulatory settings; however, only recently have portals been used with hospitalized patients. Our objective was to review the literature evaluating the design, use, and impact of inpatient portals, which are patient portals designed to give hospitalized patients and caregivers inpatient EHR clinical information for the purpose of engaging them in hospital care. Literature was reviewed from 2006 to 2017 in PubMed, Web of Science, CINALPlus, Cochrane, and Scopus to identify English language studies evaluating patient portals, engagement, and inpatient care. Data were analyzed considering the following 3 themes: inpatient portal design, use and usability, and impact. Of 731 studies, 17 were included, 9 of which were published after 2015. Most studies were qualitative with small samples focusing on inpatient portal design; 1 nonrandomized trial was identified. Studies described hospitalized patients' and caregivers' information needs and design recommendations. Most patient and caregiver participants in included studies were interested in using an inpatient portal, used it when offered, and found it easy to use and/or useful. Evidence supporting the role of inpatient portals in improving patient and caregiver engagement, knowledge, communication, and care quality and safety is limited. Included studies indicated providers had concerns about using inpatient portals; however, the extent to which these concerns have been realized remains unclear. Inpatient portal research is emerging. Further investigation is needed to optimally design inpatient portals to maximize potential benefits for hospitalized patients and caregivers while minimizing unintended consequences for healthcare teams. © 2017 Society of Hospital Medicine.
Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento
Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.
Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L
Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.
Kernisan, Leslie P; Sudore, Rebecca L; Knight, Sara J
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
Piersol, Catherine Verrier; Canton, Kerry; Connor, Susan E; Giller, Ilana; Lipman, Stacy; Sager, Suzanne
The goal of the evidence review was to evaluate the effectiveness of interventions for caregivers of people with Alzheimer's disease and related major neurocognitive disorders that facilitate the ability to maintain participation in the caregiver role. Scientific literature published in English between January 2006 and April 2014 was reviewed. Databases included MEDLINE, PsycINFO, CINAHL, OTseeker, and the Cochrane Database of Systematic Reviews. Of 2,476 records screened, 43 studies met inclusion criteria. Strong evidence shows that multicomponent psychoeducational interventions improve caregiver quality of life (QOL), confidence, and self-efficacy and reduce burden; cognitive reframing reduces caregiver anxiety, depression, and stress; communication skills training improves caregiver skill and QOL in persons with dementia; mindfulness-based training improves caregiver mental health and reduces stress and burden; and professionally led support groups enhance caregiver QOL. Strong evidence exists for a spectrum of caregiver interventions. Translation of effective interventions into practice and evaluation of sustainability is necessary. Copyright © 2017 by the American Occupational Therapy Association, Inc.
Gonzalez-Bono, Esperanza; De Andres-Garcia, Sara; Moya-Albiol, Luis
Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.
Davis, Lynne C; Sander, Angelle M; Struchen, Margaret A; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F
To determine whether caregivers' medical and psychiatric histories, coping style, and social support predict global distress and perceived burden. Correlational, cohort study. A total of 114 caregivers of persons with moderate to severe traumatic brain injury, assessed 1 year postinjury. Ratings of caregivers' medical and psychiatric history; Disability Rating Scale; Ways of Coping Questionnaire; Multidimensional Scale of Perceived Social Support; Brief Symptom Inventory; and Modified Caregiver Appraisal Scale. Caregivers' medical and psychiatric histories predicted global distress, after accounting for education, sex, income, and relationship, as well as disability of the person with injury. Increased use of escape-avoidance as a coping strategy was related to increased distress. Perceived burden was predicted by disability in the person with injury, use of escape-avoidance, and perceived social support. Caregivers' preinjury functioning is more predictive of global distress, whereas the functioning of the person with injury is more predictive of injury-related burden. Caregivers' medical and psychiatric histories are important considerations when targeting interventions; global stress management strategies may be as important as assisting with injury-related issues.
Stephen K. Trapp
Full Text Available The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group.
Trapp, Stephen K.; Perrin, Paul B.; Aggarwal, Richa; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos
The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL) in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group. PMID:26160998
Piercy, Kathleen W; Fauth, Elizabeth B; Norton, Maria C; Pfister, Roxane; Corcoran, Chris D; Rabins, Peter V; Lyketsos, Constantine; Tschanz, JoAnn T
Previous research has consistently reported elevated rates of depressive symptoms in dementia caregivers, but mostly with convenience samples. This study examined rates and correlates of depression at the baseline visit of a population sample of dementia caregivers (N = 256). Using a modified version of Williams (Williams, I. C. . Emotional health of black and white dementia caregivers: A contextual examination. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 60, P287-P295) ecological contextual model, we examined 5 contexts that have contributed to dementia caregiver depression. A series of linear regressions were performed to determine correlates of depression. Rates of depressive symptoms were lower than those reported in most convenience studies. We found fewer depressive symptoms in caregivers with higher levels of education and larger social support networks, fewer health problems, greater likelihood of using problem-focused coping, and less likelihood of wishful thinking and with fewer behavioral disturbances in the persons with dementia. These results suggest that depression may be less prevalent in populations of dementia caregivers than in clinic-based samples, but that the correlates of depression are similar for both population and convenience samples. Interventions targeting individuals with small support networks, emotion-focused coping styles, poorer health, low quality of life, and those caring for persons with higher numbers of behavioral problems need development and testing.
Lillian Flores Stevens
Full Text Available This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs’ Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health’s Patient Reported Outcome Measurement Information System (PROMIS Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training. Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients’ emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers’ relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed.
Sorrell, Jeanne M
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.
Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria
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.
Dowler, J M; Jordan-Simpson, D A; Adams, O
In Canada today, as in the past, men and women devote different amounts of time and effort to providing health care to their family and in the broader community. This paper examines "the social distinction between masculinity and femininity" in care-giving. Issues of gender inequality in care-giving have the potential to affect the formal health care system as the burden of caring will increase over the next few decades with the aging of society. This increase in need for care is occurring at a time when primary care providers--women--have additional demand on their time. Canadian society has been facing a series of social, demographic and economic shifts such as a higher divorce rate, two-income families, women's increasing professional commitments and first pregnancies at later ages, these factors may not affect women's willingness to care for others. However women may need support to provide the care. Assuming present trends, increasing need for families to care for elderly relatives may be inevitable. Perhaps society will recognize this need and provide support to those providing informal care. This could take the form of allowing individuals more time to provide care through child care leave, leave to care for parents and job-sharing. Support to those providing informal care might also be facilitated through community support services such as respite care, household maintenance, psychological support to care-givers, support groups, informal networks within a community and consideration of unconventional support methods.
Begen, Fiona M; Barnett, Julie; Barber, Miriam; Payne, Ros; Gowland, M Hazel; Lucas, Jane S
For parents and caregivers of food hypersensitive (FH) children, accommodating their child's dietary needs when eating out can be a challenging experience. This study explored caregivers' experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences. A cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH. Interviews were analysed using framework analysis. Caregivers reported a number of issues relating to eating out with their FH child, or allowing their child to eat out without their supervision. Through themes of 'family context', 'child-focused concerns', and 'venue issues', caregivers described how they managed these and explained the limitations and sacrifices that FH imposed on their child, themselves, and family members. Through deeper understanding of the anxieties, negotiations and compromises experienced by caregivers of children with FH when they are eating out, clinicians and support charities can tailor their support to meet the needs of caregivers and children. Support and education provision should focus on providing caregivers of children with FH the tools and strategies to help enable safe eating out experiences.
Antonella, Sisto; Flavia, Vicinanza; Daniela, Tartaglini; Giuseppe, Tonini; Daniele, Santini
Cancer diagnosis not only shakes the lives of those who are affected, but also has impacts on the entire family system, which is involved as if it were itself an organism affected by cancer. The oncological illness may cause a breakdown of the existing balance in the family system and demands a progressive degree of mutual adaptation to family members. The 'VoiNoi' Listening Centre of the Campus Bio-Medico University Hospital in Rome has been close to caregivers for several years, to support them in the difficult task of providing assistance through individual or group psychological support therapy and health education. The 'Charter of Rights for Family Caregivers' stems from the experience gained over the years, with the aim of protecting, supporting and strengthening the role and the assistance activity that families carry out in support of their loved ones under conditions of fragility.
Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael
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.
Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N
There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.
Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C
Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.
Groeneveld, M G; Vermeer, H J; van IJzendoorn, M H; Linting, M
We examined whether children cared for by stressed caregivers show lower socio-emotional well-being and more stress, compared with children cared for by less stressed caregivers. Perceived stress and cortisol levels of professional caregivers (n = 44), and associations with children's (n = 44) well-being and cortisol levels in home-based child care were examined. Caregiver perceived stress and cortisol levels were related to children's well-being but not to children's cortisol levels. Children's social fearfulness acted as a moderator between caregivers' mean ratio of diurnal change in cortisol and children's well-being. When caregiver cortisol levels decreased, more fearful children were reported higher on well-being than less fearful peers. In contrast, when caregiver cortisol levels increased, more fearful children were reported lower on well-being. The findings point to differential susceptibility. Child care organizations and parents need to notice that a non-stressful child care environment is in particular important for children with a difficult temperament. © 2010 Blackwell Publishing Ltd.
Lefaiver, Cheryl A; Keough, Vicki A; Letizia, Marijo; Lanuza, Dorothy M
Caregivers are essential members of the health care team who provide care, valued at more than $250 billion each year, to millions of persons who require assistance with health and daily care. Patients with respiratory diseases who are waiting for a lung transplant are required to have an identified caregiver. The caregivers are rarely studied. To explore the relationships among the health status of caregivers of lung transplant candidates, caregivers' reaction to caregiving, and caregivers' perceived quality of life. This descriptive study examined the quality of life of lung transplant caregivers from a multidimensional perspective. Twenty-nine dyads of lung transplant candidates and their caregivers were recruited from a Midwestern medical center. Data were collected by self-report: caregivers completed the Quality of Life Index, SF-12 health survey, Profile of Mood States-Short Form, and the Caregiver Reaction Assessment. Caregivers reported favorable levels of quality of life, physical health, and mood during the pretransplant waiting phase. However, problem areas for caregivers during this time included fatigue, depression, and the financial impact of the transplant. Data analyses indicated that depression, caregiver general health, impact on finances, and lack of family support had the greatest effect on caregivers' quality of life. Nurses are urged to recognize the role of caregivers in the transplant process, ask about and listen to caregivers' needs, and include caregivers in the plan of care.
Cassidy, Tony; Giles, Melanie; McLaughlin, Marian
A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. A survey design using questionnaire data collection was used with a sample of 442 children (174 boys and 268 girls) between the ages of 12 and 16. The role of benefit finding and resilience was explored within a stress and coping model of the impact of caregiving. Hierarchical multiple regression analysis (HMRA) identified resilience and benefit finding as accounting for significant amounts of variance in positive health and mediating the impact of caregiving. In regard to negative health, only benefit finding played a significant role. Young caregivers do experience benefit finding and exhibit resilience although the relationship with caregiving burden was inverse. Benefit finding seems to be related to social recognition of the caregiving role and to family support. What is already known on this subject? There is some emerging evidence that child caregivers experience some positive effects or benefits from their caring in spite of the demands of the role. However, the main focus has been on reducing negative outcomes rather than on building resilience. What this study adds? This study provides evidence that young caregivers do experience benefit finding in situations where the role demand is not overly excessive and where the role is socially recognized. © 2013 The British Psychological Society.
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Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej
Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.
Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech
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.
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 ...
Werner, Nicole E; Stanislawski, Barbara; Marx, Katherine A; Watkins, Daphne C; Kobayashi, Marissa; Kales, Helen; Gitlin, Laura N
Consumer health informatics (CHI) such as web-based applications may provide the platform for enabling the over 15 million family caregivers of patients with Alzheimer's Disease or related dementias the information they need when they need it to support behavioral symptom management. However, for CHI to be successful, it is necessary that it be designed to meet the specific information needs of family caregivers in the context in which caregiving occurs. A sociotechnical systems approach to CHI design can help to understand the contextual complexities of family caregiving and account for those complexities in the design of CHI for family caregivers. This study used a sociotechnical systems approach to identify barriers to meeting caregivers' information needs related to the management of dementia-related behavioral symptoms, and to derive design implications that overcome barriers for caregiver-focused web-based platforms. We have subsequently used these design implications to inform the development of a web-based platform, WeCareAdvisor,TM which provides caregivers with information and an algorithm by which to identify and manage behavioral symptoms for which they seek management strategies. We conducted 4 focus groups with family caregivers (N=26) in a Midwestern state. Qualitative content analysis of the data was guided by a sociotechnical systems framework. We identified nine categories of barriers that family caregivers confront in obtaining needed information about behavioral symptom management from which we extrapolated design implications for a web-based platform. Based on interactions within the sociotechnical system, three critical information needs were identified: 1) timely access to information, 2) access to information that is tailored or specific to caregiver's needs and contexts, and 3) usable information that can directly inform how caregivers' manage behaviors. The sociotechnical system framework is a useful approach for identifying information
Full Text Available Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI. Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI. Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI. Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.
Bains, Puneet; Minhas, Amarjeet Singh
Caregiving to bedridden patients in India is set to become a major problem in future. To ascertain the profile of caregivers for the adult bedridden patients in Chandigarh, India. This cross-sectional study was conducted on 100 purposively selected bedridden people. The Katz Index of the activities of daily living was used to ascertain their degree of disability. Patients and families were interviewed about the patterns of care provision. The mean age of subjects was 69 years. A majority (68%) of them lived in joint families. All of them required assistance in bathing, dressing, toileting, and transfer. In 54% of the cases someone was hired to look after the subjects. A majority of the caregivers (82%) were family members. All caregivers were untrained. In 35% of the cases unqualified practitioners were consulted, while in 59% of the cases government hospitals were consulted. Most patients (78) were given medicines on time. Complications like urinary tract infection (39%) and pressure ulcers (54%) were reported; 57% of the patients reported satisfaction with the care provided. The main source of caregivers for the bedridden was the family. Bedridden people had high rates of medical complications. There is a need for formal training for the caregivers.
Full Text Available Background: Caregiving to bedridden patients in India is set to become a major problem in future. Objective: To ascertain the profile of caregivers for the adult bedridden patients in Chandigarh, India. Materials and Methods: This cross-sectional study was conducted on 100 purposively selected bedridden people. The Katz Index of the activities of daily living was used to ascertain their degree of disability. Patients and families were interviewed about the patterns of care provision. Results: The mean age of subjects was 69 years. A majority (68% of them lived in joint families. All of them required assistance in bathing, dressing, toileting, and transfer. In 54% of the cases someone was hired to look after the subjects. A majority of the caregivers (82% were family members. All caregivers were untrained. In 35% of the cases unqualified practitioners were consulted, while in 59% of the cases government hospitals were consulted. Most patients (78 were given medicines on time. Complications like urinary tract infection (39% and pressure ulcers (54% were reported; 57% of the patients reported satisfaction with the care provided. Conclusion: The main source of caregivers for the bedridden was the family. Bedridden people had high rates of medical complications. There is a need for formal training for the caregivers.
Pagano, Eva; Baldi, Ileana; Mosso, Maria Luisa; di Montezemolo, Luca Cordero; Fagioli, Franca; Pastore, Guido; Merletti, Franco
Childhood cancer represents a relevant economic burden on families. The preferred tool to investigate family expenditure is the retrospective questionnaire, which is subject to recall errors and selection bias. Therefore, in the present study the economic burden of caregiving on families of children and adolescents (0-19 years of age) with cancer was analysed using administrative data as an alternative to retrospective questionnaires. Incident cases of cancer diagnosed in children and adolescents in 2000-2005 (N = 917) were identified from the Piedmont Childhood Cancer Registry and linked to available administrative databases to identify episodes of care during the 3 years after diagnosis (N = 13,433). The opportunity cost of informal caregiving was estimated as the value of the time spent by one of the parents, and was assumed to be equal to the number of days during which the child received inpatient care, day-care or outpatient radiotherapy. Factors affecting the level of economic burden of caregiving on families were analysed in a multivariable model. The economic burden of caregiving increased when care was supplied at the Regional Referral Centre, or when treatment complexity was high. Families with younger children had a higher level of economic burden of caregiving. Leukaemia required a higher family commitment than any other cancer considered. Estimates of the economic burden of caregiving on families of children and adolescents with cancer derived from administrative data should be considered a minimum burden. The estimated effect of the covariates is informative for healthcare decision-makers in planning support programmes. © 2013 Wiley Periodicals, Inc.
Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim
at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.
Christian J. Hendriksz MD
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.
Cossette, Sylvie; Belaid, Hayet; Heppell, Sonia; Mailhot, Tanya; Guertin, Marie-Claude
Self-care practices in heart failure (HF) contribute to quality of life, symptom stabilization, and extended life expectancy. However, adherence to practices such as liquid and salt restriction or symptom monitoring require high motivation on a daily basis. The aim was to assess the feasibility, acceptability, and potential effectiveness of a nursing intervention with family caregivers, aimed at improving self-care practice of HF patients. This pilot study involved 32 HF patient-caregiver dyads (16/group) randomized to an experimental (EG) or control group (CG). The intervention, based on the Self-Determination Theory, was designed to enhance patients' autonomy and motivation in self-care practices, by involving their caregivers' support. Five encounters were planned with the EG dyads-two face-to-face during hospitalization and three by telephone after discharge. The feasibility of delivering the protocol was evaluated as well as the acceptability of the intervention. The potential effectiveness of the intervention was assessed based on patient outcomes, including general self-care management and self-care specific to HF, perceived competence to manage HF, autonomous motivation (A-motivation, external extrinsic motivation, internal extrinsic motivation, and intrinsic motivation), and perceived support from the caregiver. Caregiver outcomes included level of support provided to the patient. Despite recruitment challenges, the intervention was feasible, with 12 of the 16 dyads receiving all 5 encounters delivered per protocol. The 4 other dyads received the two hospital encounters, but at least 1 of the 3 post-discharge planned telephone encounters was not feasible because the patients had been re-hospitalized or was deceased. Participant's satisfaction with the intervention was high. Outcomes favoring the EG include self-care specific to HF, internal extrinsic motivation, intrinsic motivation, and caregiver's feeling that they provide a higher level of support
Romito, Francesca; Goldzweig, Gil; Cormio, Claudia; Hagedoorn, Mariët; Andersen, Barbara L.
According to the recent worldwide estimation by the GLOBOCAN project, in total, 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008. The worldwide number of cancer survivors within 5 years of diagnosis has been estimated at be almost 28.8 million. Informal caregivers, such as family members and close friends, provide essential support to cancer patients. The authors of this report provide an overview of issues in the study of informal caregivers for cancer patients and long-term survivors in the United States and Europe, characterizing the caregivers commonly studied; the resources currently available to them; and their unmet needs, their psychosocial outcomes, and the psychosocial interventions tailored to their special circumstances. A broad overview of the state of research and knowledge, both in Europe and the United States, and observations on the directions for future research are provided. PMID:23695928
Chappell, Neena L; Kadlec, Helena
Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.
Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M
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: email@example.com.
Wang, Shu-Mi; Lai, Chien-Yu
This article describes a nurse's experience using Neuman's Systems Model to care for a chronic psychiatric patient and his caregiver. The patient was diagnosed as suffering from neuroleptic malignant syndrome (NMS). Nursing care described in this article was administered from October 23 to December 4, 2007. The patient developed NMS in the third month of a three-month period of hospitalization, which endangered his life as well as the health of his caregiver. Nursing care was provided to the patient and his caregiver based on Neuman's Systems Model, which included assessments of intrapersonal, interpersonal, and extra-personal forces as well as of environmental factors affecting the health of the patient and his caregiver. The four nursing care issues identified included: existing self-care deficit, sensory/perceptual alteration, sleep pattern disturbance, and caregiver role strain. Following Neuman's systems model, primary, secondary, and tertiary prevention were used to strengthen the flexible lines of defense, internal lines of resistance, and supporting existing strengths of both patient and caregiver, as well as to conserve client system energy. Significant improvements in patient and caregiver abilities were apparent in nursing intervention outcomes. This experience shows the Neuman's systems model to be an efficient model in psychiatric nursing care.
Ariza-Vega, Patrocinio; Ortiz-Piña, Mariana; Kristensen, Morten Tange
treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing...... her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture......PURPOSE: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery. METHODS: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed...
Kunzler, Angela; Skoluda, Nadine; Nater, Urs
In the face of demographic change, the informal care of dementia patients is becoming increasingly important. However, due to dementia symptoms as well as persisting care demands, this subgroup of informal caregivers is confronted with a large number of stressors resulting in chronic stress and impaired physical and mental health in many caregivers. Based on the current research on resilience (i. e., maintaining or regaining health despite stress and adversities), there is increasing interest in identifying resilience factors that may serve as resources to cope with informal care and protect caregivers against health problems. The review discusses the role of resilience factors in the association between ongoing caregiving stress and health. In analyzing the current state of research on resilience factors for dementia caregivers, we focus on the factors self-efficacy, relationship quality, and social support. © Georg Thieme Verlag KG Stuttgart · New York.
Egan, Kieren J.; Pinto-Bruno, Ángel C.; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne Margriet
Introduction: Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and
Nathália R. S. Kimura
Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.
de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana
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...
Dam, Alieske E H; Boots, Lizzy M M; van Boxtel, Martin P J; Verhey, Frans R J; de Vugt, Marjolein E
Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks. Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes. Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance. Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.
R C Jiloha
Full Text Available Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different in urban and rural settings along with different caregivers profile. This review will highlight these differences in light of their overall characteristics, and health seeking behavior. This further calls for empowering caregivers, understanding and exploring new dimensions of caregiving, and implementing holistic intervention for patients as well as caregiver′s well-being.
Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh
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.
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
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.
Optimising self-care support for people with heart failure and their caregivers: development of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention using intervention mapping.
Greaves, Colin J; Wingham, Jennifer; Deighan, Carolyn; Doherty, Patrick; Elliott, Jennifer; Armitage, Wendy; Clark, Michelle; Austin, Jackie; Abraham, Charles; Frost, Julia; Singh, Sally; Jolly, Kate; Paul, Kevin; Taylor, Louise; Buckingham, Sarah; Davis, Russell; Dalal, Hasnain; Taylor, Rod S
We aimed to establish the support needs of people with heart failure and their caregivers and develop an intervention to improve their health-related quality of life. We used intervention mapping to guide the development of our intervention. We identified "targets for change" by synthesising research evidence and international guidelines and consulting with patients, caregivers and health service providers. We then used behaviour change theory, expert opinion and a taxonomy of behaviour change techniques, to identify barriers to and facilitators of change and to match intervention strategies to each target. A patient and public involvement group helped to identify patient and caregiver needs, refine the intervention objectives and strategies and deliver training to the intervention facilitators. A feasibility study (ISRCTN25032672) involving 23 patients, 12 caregivers and seven trained facilitators at four sites assessed the feasibility and acceptability of the intervention and quality of delivery and generated ideas to help refine the intervention. The Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention is a comprehensive self-care support programme comprising the "Heart Failure Manual", a choice of two exercise programmes for patients, a "Family and Friends Resource" for caregivers, a "Progress Tracker" tool and a facilitator training course. The main targets for change are engaging in exercise training, monitoring for symptom deterioration, managing stress and anxiety, managing medications and understanding heart failure. Secondary targets include managing low mood and smoking cessation. The intervention is facilitated by trained healthcare professionals with specialist cardiac experience over 12 weeks, via home and telephone contacts. The feasibility study found high levels of satisfaction and engagement with the intervention from facilitators, patients and caregivers. Intervention fidelity analysis and stakeholder feedback suggested
The caregiving research literature has explored and documented findings from psychological, clinical, and policy/program perspectives, but little is known regarding the contextual perspectives of caregiving. Temporal factors influence the structure and functioning of the caregiving family. The proposed paradigm adaptation extends a contextual perspective that addresses the exploration of the caregiving process as a temporal, dynamic, progressive process over time, in which decisions made by caregivers may not always be based on observable tasks but, nevertheless, may have important consequences. When cultures cross, attitudes and behaviors are modified, resulting from contact with a different set of values and beliefs. Cross-cultural research aims to explore these changes that take place over time. Future research should consider the inclusion of measures that assess the temporal aspect of caregiving and the acculturation considerations of family caregivers. These measures are especially needed because of the increased influence of international migration, economic globalization, and political conflicts in today's multicultural societies.
Mochari-Greenberger, Heidi; Mosca, Lori
To determine whether caregiver burdens are associated with lifestyle behaviors 1 year following the hospitalization of a family member with cardiovascular disease (CVD). Prospective follow-up study of National Heart Lung and Blood Institute sponsored Family Intervention Trial for Heart Health participants. Hospital-based recruitment/baseline visit with 1-year follow-up. Family members of hospitalized CVD patients (N = 423; 67% female; 36% racial/ethnic minority; mean age 49 years). Systematic evaluation at 1 year to determine heart-healthy diet (defined as caregiver burdens (five domains: employment, financial, physical, social, and time; Caregiver Strain Questionnaire). Logistic regression adjusted for covariates. Heart-healthy diet was less frequent among caregivers citing feeling overwhelmed (odds ratio [OR] = .50; 95% confidence interval [CI] = .26-.97), sleep disturbance (OR = .51; 95% CI = .27-.96), financial strain (OR = .41; 95% CI = .20-.86), upsetting behavior (OR = .48; 95% CI = .25-.92), and/or time demands (OR = .47; 95% CI = .26-.85) as burdens. Physical activity was less frequent among caregivers reporting financial strain (OR = .32; 95% CI = .13-.81) or upsetting patient behavior (OR = .33; 95% CI = .15-.76) as burdens. The most commonly cited caregiver burdens included changes in personal plans (39%), time demands (38%), and sleep disturbance (30%). Caregiver burdens were associated with nonachievement of heart-healthy diet and physical activity behaviors among family caregivers 1 year after patient discharge. When developing heart-health promotion interventions, caregiver burden should be considered as a possible barrier to prevention among family members of CVD patients.
Allen, S M; Goldscheider, F; Ciambrone, D A
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.
Basnyat, Iccha; Chang, Leanne
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.
Jones, Simeon B W; Whitford, Hayley S; Bond, Melissa J
This study assessed psychological morbidity and resilience, including the subjective burden of 76 caregivers of elderly cancer survivors utilizing a cross-sectional questionnaire. Participants were mainly elderly female spouses, sole-caregiving > 35 hours per week; 19.1% and 23.6% reported moderate or greater anxiety and depression, respectively. A significant regression model found depression, emotion-focused coping, and greater years since diagnosis as significant predictors of subjective caregiver burden. Thus, caregiving appears a dominant role for this group and the Brief Assessment Scale for Caregivers of the Medically Ill (BASC) appears to be an efficient screening tool for psychological morbidity in this under-supported group.
... constitutes the most effective, supportive and beneficial care partnership for you both. ADDITIONAL RESOURCES FOR LOVED ONES AND CAREGIVERS Our community on social media has recommended the below resources. Aging Parents and ...
Núñez-Naveira, Laura; Alonso-Búa, Begoña; de Labra, Carmen; Gregersen, Rikke; Maibom, Kirsten; Mojs, Ewa; Krawczyk-Wasielewska, Agnieszka; Millán-Calenti, José Carlos
Information and communications technology (ICT) could support ambient assisted living (AAL) based interventions to provide support to informal caregivers of people with dementia, especially when they need to cope with their feelings of overburden or isolation. An e-learning platform (understAID application) was tested by informal caregivers from Denmark, Poland, and Spain to explore the technical and the pedagogical specifications, as well as evaluating the impact of its use on the psychological status of the participants. 61 informal caregivers completed the study taking part in the experimental ( n = 30) or control ( n = 31) groups. 33.3% of the caregivers were satisfied with the application and around 50% of the participants assessed it as technically and pedagogically acceptable. After using understAID the caregivers in the experimental group significantly decreased their depressive symptomatology according to the Center for Epidemiologic Studies Depression scale, but a possible benefit on their feelings of competence and satisfaction with the caring experience was also observed. The low scores obtained for satisfaction were highlighting issues that need to be modified to meet the informal caregivers' needs in national, social, and cultural context. Some possible biases are also considered and discussed to be taken into account in future improvements of understAID application.
Lee, Regina L T; Mok, Esther S B
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
Xue, Haihong; Zhai, Junwei; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei
Improving caregivers' positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer's disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. Copyright © 2018 Elsevier B.V. All rights reserved.
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
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
Carbone, Meredith K; Gugliucci, Marilyn R
Delirium, an acute confusional state, is experienced by many older adults. Although there is substantial research on risk factors and etiology, we hypothesized that there is a dearth of information on educating the family caregivers of delirious older patients. A date-specific (2000-2013) literature review of articles, written in English, was conducted in several major databases using keyword searches. This systematic review focused on 2 objectives: (1) investigate published studies on the impact of delirium on the family regarding caring for a loved one; and (2) determine if there are interventions that have provided family caregivers with education and/or coping