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Individual impacts of caring

The following resources examine the impacts of caring on specific groups of carers.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Parents of children diagnosed with complex chronic conditions (CCCs) face many challenges with managing their child's health. As parents are tasked with competing demands and the constant changes required to provide the best care possible for their child, talk about contradictions regarding their dual, and oftentimes competing, roles and responsibilities as both parent and caregiver is likely to occur. Using relational dialectics theory (Baxter, 2011) as a framework, we conducted a contrapuntal analysis to analyze 35 White, mostly Christian parents' narratives about their experiences managing their child's healthcare. Two primary discourses emerged: the centripetal discourse of normal health and the centrifugal discourse of difference. The interplay between these two primary discourses led to a hybrid discourse: difference is our new normal. Within this discourse, parents discussed previous speech encounters where they relied upon the co-construction of a new normal with others who were living or willing to live in their new reality. Our findings emphasize how an assessment of parents' talk conveys their discoursedependence with navigating the inevitable uncertainties associated with managing their child's CCC. In addition, we discuss how parents co-construct their new normal in the face of unique family functioning that is structurally different from societal expectations and social norms about parenting and pediatric health care management. 

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Interaction between family and child/adolescent with hearing deficiency

Purpose: to know the family interaction with the hearing impaired child/adolescent.

Methods: descriptive and exploratory qualitative research developed at a Special School in Southern Brazil. Participants were 10 primary caregivers of deaf children/adolescents between 10 and 19 years old. The collection took place in November 2017, through semi-structured interviews containing questions about the communication process of deaf children/adolescents with their families. The information was analyzed through thematic analysis. The study was submitted and approved by the Ethics Committee under opinion number 2.333.560.

Results: as the main theme of the study "Interaction between the family and the child/adolescent with hearing impairment", it addresses two sub-themes: potentialities and weaknesses in the communication of the family with the child/ adolescent with hearing impairment and learning in the care of the child/adolescent with hearing impairment.

Conclusion: it was identified that the interaction of the deaf with the family and society is impaired by people's lack of knowledge about the deaf community and the Brazilian Sign Language, which raises concern in caregivers who often overprotect the child/adolescent which may limit the full development of their skills and autonomy.

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Practical Needs in the Home Care of Latino Children With Medical Complexity

Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability. The study objective was to describe the challenges faced by caregivers of Latino CMC in meeting the practical needs of their children when caring for them at home. In this qualitative study, 70 Latino CMC enrolled in a complex care program of a tertiary care children's hospital were followed for a median duration of 45 months. We collected care coordination notes from encounter logs and interviewed bilingual care coordinators regarding their experiences with each child. Using thematic content analysis and an iterative process, we identified recurrent themes related to practical needs. Four themes emerged. Caregivers: 1) faced financial challenges due to many reasons that were exacerbated by children's medical conditions; 2) had challenges meeting basic needs of their families, including food and shelter; 3) experienced difficulties obtaining necessary medical supplies for their children; and 4) relied on care coordinators to navigate the system. We conclude that Latino caregivers of CMC experience many challenges meeting their families' basic needs and obtaining necessary medical supplies to care for their CMC at home. Care coordinators play a major role in addressing the practical needs of Latino CMC. Future studies should determine whether addressing the practical needs of Latino CMC would improve their health outcomes.

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Stories from people living with frailty

We describe the findings of a qualitative longitudinal interview study of a group of initially community-dwelling frail older people, and their informal and formal carers. We used a narrative approach to explore the role that narrative may have for people living with frailty. This has been less explored comparative to the experiences of those living with chronic illness. The frail older people told stories of their experiences that revealed three distinct shapes or typologies. These were either stable, unbalancing or overwhelmed, and related to how the person managed to adapt to increasing challenges and losses, and to reintegrate their sense of self into a cohesive narrative. Each is illustrated by an individual case story. Frailty is described as both biographically anticipated yet potentially biographically disruptive as older people may struggle to make sense of their circumstances without a clear single causative factor. Findings are discussed in relation to biographical disruption and reconstruction in chronic illness and the rhetoric around 'successful ageing'. We conclude by drawing attention to the complex individual and social factors that contribute to the experience of living with frailty in later life.

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"In the flesh": Narratives of family caregivers at risk of Early-onset Familial Alzheimer's Disease

In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer's Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer's Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer's Disease permeates the caregivers' experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer's Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.

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I'm Here, You're There: In-Absentia Caregiver Stress & Transnational Support of Elderly Mothers by Adult Children

Providing support between generations in a transnational family context is understudied in the aging literature. Specifically, this study investigated the stress experiences and stressors experienced by adult children in the United States when providing transnational support to their elderly mothers in India. Information gathered from two focus groups was supplemented by an online survey of 131 adult children. Participants expressed sentiments of worry, sadness, guilt, and especially helplessness at their limited capacity to care for their mothers from a distance. Results indicate that transnational family aged care is an important dimension of aging that requires further research. In particular, "in absentia caregiver stress" is experienced remotely, and has implications for the immigrant adult's health and well-being. 

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How do we know what we don't know? Exploring Deaf people's experiences of supporting their Deaf family member living with dementia

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

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Canadians Who Care: Social Networks and Informal Caregiving Among Lesbian, Gay, and Bisexual Older Adults in the Canadian Longitudinal Study on Aging

Canada is experiencing population aging and evidence on the provision of care is based on data collected from majority populations. This analysis compared social networks and patterns of care provision between heterosexual and lesbian, gay, and bisexual (LGB) Canadians between the age of 45 and 85 years. Data were drawn from the Canadian Longitudinal Study on Aging (CLSA), a large national study of health and aging. The results from analysis of baseline data showed that LGB participants were less likely to have children and reported seeing their friends more recently than heterosexual participants. Gay and bisexual men were more likely to provide care support in comparison to heterosexual men. LGB participants were more likely to provide care to friends. The results highlight the importance of considering distinct social networks in the development of policy and practice approaches to support a diverse aging population. 

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Becoming a family caregiver of a patient living with cancer

Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.; Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.; Methods: This was an autoethnographic study.; Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.; Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.

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Baby Boomers as Caregivers: Results From the Behavioral Risk Factor Surveillance System in 44 States, the District of Columbia, and Puerto Rico, 2015-2017

Introduction: Baby boomers, people born from 1946 through 1964, represent a substantial portion of the US population. Generally, baby boomers have more chronic disease and disability than those in the previous generation. Frequently, they also provide informal care to others. The objective of our study was to estimate the prevalence of informal caregiving among baby boomers and compare the health of baby boomer caregivers and noncaregivers. Methods: Using data from the Behavioral Risk Factor Surveillance System (2015-2017) for 44 states, the District of Columbia, and Puerto Rico, we classified 109,268 baby boomers as caregivers or noncaregivers and compared their general health (poor or fair vs good, very good, or excellent), chronic health conditions, and frequent mental distress (FMD). FMD was defined as 14 days or more of poor mental health in the past month. We used log-binomial regression to calculate prevalence ratios, adjusted for age and sex (aPRs), and to separately estimate aPRs for fair or poor health and FMD or at least one chronic health condition. Results: One in 4 baby boomers (24.2%) were caregivers. In adjusted models, male caregivers had a higher prevalence of fair to poor health than noncaregivers (aPR = 1.17; 95% confidence interval [CI], 1.06-1.29; P = .001). More caregivers than noncaregivers had at least 1 chronic health condition (aPR = 1.10, 95% CI, 1.07-1.13; P < .001) and more often had FMD (aPR = 1.39; 95% CI, 1.26-1.53; P < .001). Conclusion: Our study showed these caregivers had more chronic health conditions and more often had FMD than noncaregivers. The health of baby boomer caregivers is a public health priority, as these caregivers might need support to maintain their own physical and mental health.

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An autoethnography of death and dying in Northern Ireland: Managing Community Care

Purpose In Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”. The purpose of this autoethnography is to share the author’s lived experience so that it might be used to improve services. Design/methodology/approach Autoethnography is employed as the research method. The author describes her experience of caring for father over the last six months of his life. She explores the tensions between the different players involved in the care of her father and the family and the internal conflict that developed within her as daughter, carer, care coordinator and doctor. Using multiple data sources, selected data entries were explored through reflexive, dyadic interviews to explore the experience and meaning in each story. Findings The author found that autoethnography was a powerful tool to give voice to the carer experience. Narration can be a powerful tool for capturing the authentic lived experiences of individuals and families and is a tool seldom utilised in integrated care. This account provides an insight into the author's expectations of integrated palliative care, as a designer and implementer and now an academic in integrated care and concludes with some reflections about the gap between policy and practice in palliative care services in Northern Ireland. Originality/value Autoethnography can be a powerful tool for capturing the authentic lived experiences of individuals and families and is an essential component of the quadruple aim.

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"You have got to get off your backside; otherwise, you'll never get out": older male carers' experiences of loneliness and social isolation

Loneliness is framed as an enduring problem for carers of all ages, including older carers; however, there is little examination of older men's experiences of caring, loneliness and social isolation. Based on interviews with 25 men (aged 68-92 years), we discuss findings from a study of older male carers' experiences of loneliness in England. Within their accounts, loneliness is framed as a future, rather than present, problem as caring provides a time-limited buffer to loneliness while concurrently increasing social isolation. Further, the findings shed light on how male carers seek and benefit from carers' support groups while also maintaining autonomy.

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"I've always been the one who drops everything": the lived experiences and life-course impacts of young adult women carers

Based on findings from a Canadian-based study, this article examines the stories of young adult women carers. Young adult women caring for a parent or grandparent were interviewed using social network maps, participant-driven photography and care timelines. The findings reveal numerous impacts on the women's lives, which we categorise according to three temporal periods: the past (how they came to be carers); the present (their daily realities of care); and the future (how they imagine what is ahead). We conclude with a discussion regarding the tensions between the women's personal stories and the social forces that shape young women's caring.

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Uncertainty in Transition of African American Caregivers

The purpose of this study was to gain an understanding of the ambiguities and uncertainties experienced by a diverse group of African-American caregivers. The study applied Schlossberg's transition theory (TT) and Mishel’s revised uncertainty theory to narratives of self-identified African-American caregivers who provided care at least 5 h a week. The men (6) and women (8) were mostly unmarried, mostly caring for a parent or grandparent. The caregivers’ average age was 52 (SD = 19; ages ranged from 24 to 82 years); and the care recipients’ average age was 84 (SD = 9). Six care recipients had dementia and the remainder had multiple disease diagnoses. Narratives were obtained by in-depth interviews or focus group discussions. These were audio-recorded, transcribed verbatim professionally and analyzed independently by trained coders. Schlossberg’s TT contextualized whereas Mishel’s RUIT illuminated the characteristics of the transition, its associated uncertainty, and their relationship to the development of caregiver stress. Situational factors such as difficulties with illness symptoms of the care recipient, conflict between previous experience and current expectations and the adjustments to the new caregiving role, burdened younger caregivers more than older caregivers. Self-factors related to lack of knowledge about the illness and feelings of lack of control. Social support was predominantly provided by family members, and its absence resulted in conflict among siblings and caregiver stress. The most common coping strategies include religiosity, expectations of reciprocity, and coming to terms with the uncertainty. Understanding the feelings, perceptions and needs of caregivers in transition is tantamount to providing nursing care. 

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The relationship between engagement in online support groups and social isolation among military caregivers: Longitudinal questionnaire study

Background: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms. 

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Health literacy and health communication training for underserved patients and informal family caregivers

Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers. We examine three iterations of training feedback for implementation in future training. 

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Reduced family care burden by using a communication robot: Case report

Here, we report that the use of a baby‐type robot (Smibi; Togo Seisakusyo, Aichi‐gun, Japan) helped improve the healing process and reduce the care burden of an aged woman undergoing home‐visit rehabilitation.

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“I was Confused About How to Take Care of Mom Because this Disease is Different Everyday”: Vietnamese American Caregivers’ Understanding of Alzheimer’s Disease

Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.

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"It's just part of life": African American daughters caring for parents with dementia

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

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Die häusliche Situation eines Ehepaares Challenges in dementia care at home - The situation at home of a married couple

Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. Aim: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. Methods: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. Results: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. Conclusions: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.

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Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient

Objectives: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. Aim: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. Participants: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member’s pacemaker. Results: Four storylines that described, gave meaning to, and contextualized the caregivers’ experiences were identified: “I am done. I am not doing it anymore”; “Whatever you decide, I’ll support you”; “It is really difficult to watch, but you want to be there”; and “I will not have part of this.” Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. Conclusions: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians’ knowledge regarding caregivers’ experiences facing deactivation of a pacemaker, before and after the patient’s death. 

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Implementation and feasibility considerations of an avatar-based intervention for military family caregivers

Objective: Military family caregivers (MFCGs) are a growing population with well-being and quality of life (QOL) challenges. New technologies can help meet their needs while minimizing disruption to caregiving responsibilities. Preliminary research needs to address intervention implementation challenges before larger-scale efficacy studies are conducted. This study aimed to evaluate the feasibility of implementing an avatar-based intervention and preliminarily investigate outcomes.; Methods: One-hundred twenty-four MFCGs were recruited to participate in this feasibility study. Sixty-four MFCGs completed the intervention. Data were analyzed using repeated-measures analysis of variance to assess 3- and 6-month differences.; Results: Meeting the a priori goal of 50 MFCGs completing the program supported feasibility. Preliminary results indicated significant reductions in depression, anxiety, and somatic symptoms, and significant improvements in physical health and overall QOL.; Conclusions: Findings support for the feasibility of implementing an avatar-based intervention for MFCGs and present promising findings related to improving caregiver well-being and overall QOL.

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Health, well-being, and social support in older Australian lesbian and gay care-givers

Informal care-givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care-giver is known to be associated with poorer health and well-being, and lesbian and gay care-givers report experiences of stigma and discrimination in the care-giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care-givers. We compared care-givers to non-caregivers on a range of health and well-being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care-givers who were caring for an LGBTI person to those who were caring for a non-LGBTI person. Among the lesbian women, care-givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care-givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well-being compared to those caring for a non-LGBTI person. Overall, results from this study suggest that older lesbian and gay care-givers may be facing some challenges related to their well-being and feeling supported, especially if they are caring for another LGBTI person.

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Thiamine deficiency observed in a cancer patient's caregiver

Objective Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date. Method From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient. Result The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level. Significance of the results This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.

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“Ours is the Strangest Situation, Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage. 

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Caregiving Status and Health of Heterosexual, Sexual Minority, and Transgender Adults: Results From Select U.S. Regions in the Behavioral Risk Factor Surveillance System 2015 and 2016

Background and Objectives Insufficient research attention has been paid to the diversity of informal caregivers, including sexual and gender minority caregivers. This study examined health effects of caregiving separately from sexual orientation or gender identity status, while stratifying by gender among cisgender adults. We hypothesized that compared with heterosexual cisgender noncaregivers, heterosexual caregivers and lesbian/gay/bisexual (LGB), and transgender (T) noncaregivers would report poorer health outcomes (i.e., self-reported health, and poor mental health days and poor physical health days), and LGBT caregivers would report the worst health outcomes. Research Design and Methods This is a secondary data analysis of the 2015 and 2016 Behavioral Risk Factor Surveillance System data from 19 U.S. states. Results After adjusting for covariates and stratifying by gender among the cisgender sample, heterosexual caregivers, LGB noncaregivers and LGB caregivers had significantly higher odds of self-reported fair or poor health (adjusted odds ratios [aORs] 1.3–2.0 for women and 1.2 for men), poor physical health days (aORs 1.2–2.8 for women and 1.3–2.8 for men), and poor mental health days (aORs 1.4–4.7 for women and 1.5–5.6 for men) compared with heterosexual noncaregivers (reference group). By contrast, transgender caregivers did not have significantly poorer health than cisgender noncaregivers. Discussion and Implications LGB caregivers reported the worst health compared with other groups on multiple measures, signifying they are an at-risk population. These results suggest the necessity to develop LGB appropriate services and programs to prevent poor health in LGB caregivers. Existing policies should also be inclusive of LGBT individuals who are caregivers.

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The Hidden Health Crisis: What Family Caregivers Want You to Know

I looked at the diagnostic specialist and burst into tears. She had seen other women like me and knew what was wrong with my shoulder. Finally, after 14 months of being tossed between physicians, specialists, and physical therapists and many misdiagnoses, I had an answer: frozen shoulder. It explained the extreme pain in my shoulder along with the stiffness and inability to move the shoulder joint. This condition takes 1 to 3 years to resolve, and there is little that can be done to relieve the pain or force the shoulder to move. 

  1. MaryAnne’s Story

  2. The Caregiving Journey

  3. Stories From the Front Lines

  4. The Hidden Health Crisis

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Seeing the collective: family arrangements for care at home for older people with dementia

With the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these. 

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Rob Lowe: Who Cares for the Carer? | Opinion

In January 2018, President Donald Trump signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, a law that directs Secretary of Health and Human Services Alex Azar to develop and maintain a strategy to support caregivers in the next 18 months. According to the initiative, nearly a quarter of the 3,516 unpaid caregivers they surveyed in 2017 said their careers had suffered because of caring for a family member. When you get on an airplane, the crew says, "Secure your own mask first before helping others." Because without you taking care of yourself, you can't take care of anybody else.

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Dementia diagnosis and white lies: a necessary evil for carers of dementia patients?

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

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Prisoner peer caregiving: a literature review

AIM: To explore the role of prisoner caregivers in providing peer social care to older prisoners and to identify methodological information and challenges to conducting research in prisons, to inform future research in this setting. METHOD: The literature review was conducted in two stages. In the first stage, a systematic literature review was undertaken to retrieve articles related to prisoner caregiving. The main themes from these articles were identified. In the second stage, a narrative literature review was undertaken to provide contextual and methodological information about research, which may support future research in prisons. FINDINGS: The main themes identified in the systematic literature review were: the benefits of prisoner caregiving; training needs; and the organisational implications of implementing prisoner caregiving. The narrative literature review identified a range of methodological approaches used to undertake research in prisons. Challenges to undertaking research in prisons included practical issues, the influence of power on relationships and the difficulty for researchers not to take the side of either the prisoners or prison staff. CONCLUSION: The role of prisoner caregiver is increasingly recognised as important, and is associated with several benefits to individual prisoners and the prison community. However, further training is required for prisoner caregivers, and there is a need for further research into the prisoner caregiving role, using a methodology that is suitable for the prison setting. 

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A Caregiver's Medication Misadventure

For Mom's valve replacement surgery, family members kept track of medications and tests while she was in the hospital. Drug therapies are involved in nearly three in four doctors' visits, more than 80% of hospital emergency department visits, and almost 73% of hospital outpatient visits. Policies that facilitate information sharing, engage pharmacists as care-team members, and align resources accordingly are needed to bridge the gaps in care transitions and address the human and economic costs associated with poor medication management.

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Ethnomoralities of care in transnational families: care intentions as a missing link between norms and arrangements

Building on the distinction between the normative and the negotiable aspects of care, we argue that to understand the social phenomenon of care, we have to analyse not only the moral norms and the care arrangements, but also the intermediary level of intentions. The article presents an ethnomorality of care model combining these three levels. The article explores the case of transnational families (TNFs) of Polish post-2004 EU enlargement migrants with still relatively young parents back in Poland. Care provision for dependent elderly members remains a future challenge in the Polish TNFs, and at this stage it is interesting to inquire plans about the future support for the elderly, especially in the light of Polish predominant (informal) family care regime. We focus on care intentions in which social actors confront moral beliefs with capabilities and construct various social accounts for not following the norm of family care.

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A Discourse Analysis: One Caregiver's Voice in End-of-Life Care

Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

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Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)

The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N = 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CC groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups. 

The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study

Objective: The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. Subjects: A total of 195 family caregivers of cardiac arrest survivors were included. Main measures: Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Results: Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES (P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS (P=0.01), EuroQol-VAS (P=0.02), and the CFQ (P<0.001), all measured at 12 months after the cardiac arrest. Conclusions: Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden. 

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“Ensure that you are well aware of the risks you are taking…”: actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety

Background When seeking care at international hospitals and clinics, medical tourists are often accompanied by family members, friends, or other caregivers. Such caregiver-companions assume a variety of roles and responsibilities and typically offer physical assistance, provide emotional support, and aid in decision-making and record keeping as medical tourists navigate unfamiliar environments. While traveling abroad, medical tourists’ caregiver-companions can find themselves confronted with challenging communication barriers, financial pressures, emotional strain, and unsafe environments. Methods To better understand what actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety, 20 interviews were conducted with Canadians who had experienced accompanying a medical tourist to an international health care facility for surgery. Interview transcripts were subsequently used to identify inductive and deductive themes central to the advice research participants offered to prospective caregiver-companions. Results Advice offered to future caregiver-companions spanned the following actions and activities to protect health and safety: become an informed health care consumer assess and avoid exposure to identifiable risks anticipate the care needs of medical tourists and thereby attempt to guard against caregiver burden become familiar with important logistics related to travel and anticipated recovery timelines and take practical measures to protect one’s own health. Conclusion Given that a key feature of public health is to use research findings to develop interventions and policies intended to promote health and reduce risks to individuals and populations, the paper draws upon major points of advice offered by study participants to take the first steps toward the development of an informational intervention designed specifically for the health and safety needs of medical tourists’ caregiver companions. While additional research is required to finalize the content and form of such an intervention, this study provides insight into what practical advice former caregiver-companions state should be shared with individuals considering assuming these roles and responsibilities in the future. In addition, this research draws attention to the importance of ensuring that such an intervention is web-based and readily accessible by prospective caregiver-companions.

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Experience and needs of family members of patients treated with extracorporeal membrane oxygenation

Aims and objectives: To explore the experiences of family members of patients treated with extracorporeal membrane oxygenation. Background: Sudden onset of an unexpected and severe illness is associated with an increased stress experience of family members. Only one study to date has explored the experience of family members of patients who are at high risk of dying and treated with extracorporeal membrane oxygenation. Design: A qualitative descriptive research design was used. Methods: A total of 10 family members of patients treated with extracorporeal membrane oxygenation were recruited through a convenient sampling approach. Data were collected using open‐ended semi‐structured interviews. A six‐step process was applied to analyse the data thematically. Four criteria were employed to evaluate methodological rigour. Results: Family members of extracorporeal membrane oxygenation patients experienced psychological distress and strain during and after admission. Five main themes (Going Downhill, Intensive Care Unit Stress and Stressors, Carousel of Roles, Today and Advice) were identified. These themes were explored from the four roles of the Carousel of Roles theme (decision‐maker, carer, manager and recorder) that participants experienced. Conclusion: Nurses and other staff involved in the care of extracorporeal membrane oxygenation patients must pay attention to individual needs of the family and activate all available support systems to help them cope with stress and strain. Relevance to clinical practice: An information and recommendation guide for families and staff caring for extracorporeal membrane oxygenation patients was developed and needs to be applied cautiously to the individual clinical setting.

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Family caregiver's experiences of providing care to patients with End-Stage Renal Disease in South-West Nigeria

Aims and objectives: To describe the experiences of family caregivers providing care for patients living with End‐Stage Renal Disease in Nigeria Background: Family caregiving is where an unpaid volunteer, usually a close family member, attends to the needs of a loved one with a chronic, disabling illness within the home. Much research has been conducted in the area of family caregiving in high‐income countries. However, the same cannot be said for many of the low‐resource, multicultural African countries. Design: Qualitative descriptive study. Method: This qualitative descriptive study used manifest content analysis to analyse data from semi‐structured, individual interviews, with 15 purposively selected family caregivers. Two tertiary institutions providing renal care in South‐Western Nigeria: the research setting for this study. Result: Five categories were identified, and these included disconnectedness with self and others, never‐ending burden, ‘a fool being tossed around’, obligation to care and promoting a closer relationship. Conclusion: Experiences associated with the caregiving of patients diagnosed with End‐Stage Renal Disease evoked a number of emotions from the family caregivers, and the study revealed that caregiving imposed some burdens that are specific to low‐resource countries on participants. Relevance to clinical practice: Nurses need to engage family caregivers on disease‐specific teachings that might promote understanding of the disease process and role expectation. Family caregivers may benefit from social support services.

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

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

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Personal meaning in relation to daily functioning of a patient in physical therapy practice: narratives of a patient, a family member, and physical therapist

Purpose: To get insight into personal meaning of a person involved in a physical therapy intervention.; Methods: Mrs. A, a 76-year-old woman is referred to a physical therapist (PT) for assessment of functioning and training before total hip arthroplasty (THA). The patient, her daughter, and PT were asked to write a story about their daily life. Stories were analyzed according to the narrative scheme based on a method to find meaning in daily life, which consists of four phases: 1. Motivation; 2. Competences; 3. Performance; and 4.; Results: Mrs. A was mainly motivated by her will to do enjoyable social activities and stay independent. Although she tried her best to undertake activities (performance) that made her proud (evaluation), her pain and physical limitations were anti-competences that motivated her to attend healthcare. Although the PT seemed to be aware of personal participation goals, her main motivation was to improve and evaluate functions and activities. The daughter was motivated by good relationships and did not see herself as informal caregiver.; Conclusions: The narrative method was a valuable tool to clarify motivations, competences, and values in the process of creating personal meaning related to functioning. This knowledge could help caregivers in applying patient-centered goal-setting and treatment on a participation level. Implications for rehabilitation Personal meaning of people's functioning within their daily context can be clarified from daily life stories. This case report demonstrates that motivations and goals may differ between patient and therapist; the PT seems to focus on improving and evaluating functions and activities, while the patient seems to focus her motivations and personal meaning on participation. This approach may help in patient-centered goal-setting at the level of activities and participation.

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Correlates of depression in caregivers of Ultra-Orthodox frail older adults

Depression is the most frequent negative health outcome among informal caregivers. The aims of the current study were (a) to assess the level of depression, (b) to explore associations among care recipients' characteristics, caregivers' characteristics, situational factors, and depression among Ultra-Orthodox Jewish (UOJ) caregivers. A total of 112 (44 men and 68 women) UOJ primary caregivers of frail older adults were interviewed face-to-face in their homes, using valid and reliable measures. Participants reported a notable depressive symptomatology. Three variables emerged as significant predictors of caregiver depression: higher external control (chance), being a spouse, and lower levels of social support. External locus of control, being a spouse, and social support were found to be highly important factors for explaining depression among UOJ caregivers. Resources should be allocated to target spousal caregivers with lower levels of social support and a greater sense of external locus of control in order to alleviate their depressive symptomatology.

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Psychometric properties of a Power Mobility Caregiver Assistive Technology Outcome Measure

Caregiver burnout is a serious concern among informal caregivers, especially for those who provide care to individuals with more severe limitations such as power mobility users. The Power Wheelchair Caregiver Assistive Technology Outcome Measure tool measures device specific and overall burden experienced by informal caregivers of power mobility users. A one-month, test-retest study was conducted to examine the reliability, internal consistency, and construct validity of the Power Wheelchair Caregiver Assistive Technology Outcome Measure. Two construct validity measures were administered: the Hospital Anxiety and Depression Scale and the Late Life Disability Index. The test-retest-reliabilities of part 1 (power wheelchair specific burden) and part 2 (general caregiving burden) were 0.769 and 0.843 respectively. Scores on part 1 were moderately and positively correlated with part 2 and with frequency of participation. Scores on part 2 were moderately and negatively correlated with anxiety, depression, and positively with perceived limitation of participation. The strength and direction of these correlations provide support for the construct validity of the measure and suggest part 1 and part 2 provide complementary information. Further testing is needed to assess the clinical utility and responsiveness of the measure.

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Informal care, employment and quality of life: Barriers and facilitators to combining informal care and work participation for healthcare professionals

Background: In The Netherlands, one out of six Dutch employees has informal care tasks; in the hospital and healthcare sector, this ratio is one out of four workers. Informal carers experience problems with the combination of work and informal care. In particular, they have problems with the burden of responsibility, a lack of independence and their health. These problems can reveal themselves in a variety of mental and physical symptoms that can result in absenteeism, reduction or loss of (work) participation, reduction of income, and even social isolation.; Objective: The aim of the study was to describe the factors that informal carers who are employed in healthcare organizations identify as affecting their quality of life, labour participation and health.; Methods: We conducted an exploratory study in 2013-2014 that included desk research and a qualitative study. Sixteen semi-structured interviews were conducted with healthcare employees who combine work and informal care. Data were analyzed with Atlas-TI.; Results: We identified five themes: 1. Fear and responsibility; 2. Sense that one's own needs are not being met; 3. Work as an escape from home; 4. Health: a lack of balance; and 5. The role of colleagues and managers: giving support and understanding.; Conclusions: Respondents combine work and informal care because they have no other solution. The top three reasons for working are: income, escape from home and satisfaction. The biggest problems informal carers experience are a lack of time and energy. They are all tired and are often or always exhausted at the end of the day. They give up activities for themselves, their social networks become smaller and they have less interest in social activities. Their managers are usually aware of the situation, but informal care is not a topic of informal conversation or in performance appraisals. Respondents solve their problems with colleagues and expect little from the organization.

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Informal caregiving, work-privacy conflict and burnout among health professionals in Switzerland - a cross-sectional study

Introduction: Health professionals were found to have an elevated burnout risk compared to the general population. Some studies also reported more emotional exhaustion - a component of burnout - for health professionals with informal caregiving responsibilities for children (double-duty child caregivers) or adults (double-duty adult caregivers) or a combination of both (triple-duty caregivers) compared to health professionals without informal caregiving roles (formal caregivers). However, the potential mediating effect of the work-privacy conflict in this relationship as well as differences between occupational groups have not yet been studied in healthcare settings.; Aim: To assess the impact of informal caregiving on burnout risk among health professionals and whether this relationship is mediated by work-privacy conflict or differs between occupational groups.; Methods: Data were collected through an employee survey in six hospitals from German-speaking Switzerland in 2015/2016. Mediation analyses were performed using linear mixed models with fixed effects for caregiving situation and work-privacy conflict as well as random effects for hospitals.; Results: Triple-duty caregivers were found to have a significantly higher burnout risk compared to formal caregivers only. Work-privacy conflict did not mediate this relationship, except among the "other health professionals" group.; Conclusion: Additional and large-scale studies focusing on the combination of formal and informal caregiving roles are needed to better understand its effect on burnout among healthcare professionals and to evaluate the role of work-privacy conflict.;

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Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder ( OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care-giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care-giving. More holistic social and healthcare support services should be provided for care-giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well-being.

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The impact of extended half-life versus conventional factor product on hemophilia caregiver burden

Introduction: Extended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B. Methods: This cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses. Results: The sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = - 0.11, p < 0.05, Adjusted R2 = 0.06), and shows a trend association with lower practical impact (β = - 0.09, p < 0.10, Adjusted R2 = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = - 2.95 and - 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI. Conclusion: The reduced required frequency of factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact. 

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The Relationship between Anxiety and Coping Strategies in Family Caregivers of Patients with Trauma

Introduction: Traumatic events are of high incidence and affect not only the patient but also their family members, causing psychological problems such as stress and anxiety for caregivers of these patients. Therefore, the application of appropriate coping strategies by them seems necessary in order to promote mental health. Aim: To study the relationship of anxiety with coping strategies in family caregivers of trauma patients. Materials and Methods: The present research was a descriptive-correlational study which was carried out on 127 family caregivers of patients with trauma in intensive care unit, surgery ward and emergency unit of Amir al-Mu'minin Hospital of Zabol, Sistan and Baluchestan Province. The respondents were selected based on the convenience sampling method. Demographics questionnaire, DASS-21, and Coping StrategiesQuestionnaire were used for data collection. The obtained data were statistically analysed using descriptive statistics, Analysis of Variance (ANOVA), t-test, and Pearson correlation coefficient in statistical package for the Social Sciences (SPSS) version 21.0. Results: Based on the results, 89.9% of family caregivers suffer from mild to severe anxiety. The most common type of coping strategy used by the respondents was emotion-focused. The results showed no relationship between anxiety and emotioncentrism, but an inverse relationship was found between problem-centrism and anxiety. Conclusion: The majority of family caregivers had anxiety. Given, the inverse relationship between the level of anxiety and the use of problem-based coping strategy, in addition to identifying and reducing the causes of anxiety in caregivers. It is recommended that appropriate coping strategies should be trained to them. 

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A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia

Background and Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers' fulfilment of needs. Design and Methods: In this qualitative study, we conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualized accounts of how caring impacted on carers' lives. Our inductive thematic analysis focused upon asking: "What need is being impacted here?" in order to generate a needs-led framework for understanding. Results: Nine themes were widely endorsed. Each completed the sentence: "Being a carer impacts on fulfilling my need to/ for....": Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. Discussion and Implications: These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.

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Family Caregivers of Liver Transplant Recipients: Coping Strategies Associated With Different Levels of Post-traumatic Growth

Objective Analyze the influence of 2 variables (post-traumatic growth and time since liver transplantation) on coping strategies used by the transplant recipient's family members. Methods In all, 218 family members who were their main caregivers of liver transplant recipients were selected. They were evaluated using the Posttraumatic Growth Inventory and the Brief COPE. A 3 × 3 factorial analysis of variance was used to analyze the influence that post-traumatic growth level (low, medium, and high) and time since transplantation (≤3.5 years, >3.5 to ≤9 years, and >9 years) exerted on caregiver coping strategies. Results No interactive effects between the two factors in the study were found. The only significant main effect was the influence of the post-traumatic growth factor on the following variables: instrumental support ( P = .007), emotional support ( P = .005), self-distraction ( P = .006), positive reframing ( P = .000), acceptance ( P = .013), and religion ( P = <.001). According to the most relevant effect sizes, low post-traumatic growth compared with medium growth was associated with less use of self-distraction ( P = .006, d = −0.52, medium effect size), positive reframing ( P = .001, d = −0.62, medium effect size), and religion ( P = .000, d = −0.66, medium effect size), and in comparison with high growth, it was associated with less use of positive reframing ( P = .002, d = −0.56, medium effect size) and religion ( P = .000, d = 0.87, large effect size). Conclusion Regardless of the time elapsed since the stressful life event (liver transplantation), family members with low post-traumatic growth usually use fewer coping strategies involving a positive, transcendent vision to deal with transplantation. 

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Exploration of Factors Related to Depressive Symptomatology in Family Members of Military Veterans With Traumatic Brain Injury

Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families. Psychological distress, often measured as depression or depressive symptoms, is highly prevalent among family members. Predictors of depression in family members of civilians with TBI have been examined, but predictors of depression in family members of military veterans have received very little research attention and are poorly understood. To address the knowledge gap, this study explored factors related to depressive symptoms in family members of veterans in the United States, using an ecological framework. Baseline data from 83 family members were used. Family members with higher caregiver burden, presence of a veteran with posttraumatic stress disorder (PTSD), and greater financial difficulty experienced significantly more depressive symptoms. Findings suggest that efforts to support family members and decrease their depression should aim to reduce caregiver burden and financial difficulty, and help family members cope with veteran PTSD and TBI. Family-focused interventions are needed. 

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On being a caregiver: The experiences of South African family caregivers caring for cancer patients

The purpose of our study was to describe the experiences of family caregivers of cancer patients using the public healthcare system in South Africa. We used a qualitative descriptive design and conducted in‐depth interviews with 20 purposively selected family caregivers. Data saturation determined the sample size, and qualitative content analysis was used to analyse the data. Three themes arose from the data: emotional responses and feelings towards the cancer diagnosis, fulfilling the role of the caregiver and living and coping with a changed life and a changed person. Caring for a person with cancer was not easy. Participants were overwhelmed with the care responsibilities, which were aggravated by poverty. Some felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. The lives the participants knew changed and they had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person. For some, the sick person they cared for changed and became a person they did not know. Most participants used religious practices to cope with their situation; however, some used other coping mechanisms, such as recreation and even smoking. 

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Impacts of COPD on family carers and supportive interventions: a narrative review

Caring for a relative with chronic disease influences multiple dimensions of family carers' lives. This study aimed to provide an overview of the impacts of chronic obstructive pulmonary disease ( COPD) on family carers and identify interventions aimed at supporting them. A narrative review was conducted. Searches were performed in electronic databases using a combination of keywords. Articles were screened for relevance and selected articles were analysed in two groups considering the study aims. Eighteen articles were selected. Fifteen studies evaluated the impacts of COPD on family carers and three studies presented interventions aimed at supporting them. Carers reported negative impacts of caring on physical health, emotional, social, relational and financial/employment life dimensions. Positive aspects of care-giving were reported in four studies and were related to carers' personal growth and satisfaction in being able to do something useful for their relatives. The existing interventions were directed at both patients and carers; however, studies provided limited information on how carers were involved, hindering the interpretation of findings. In conclusion, COPD poses several unique challenges to family carers related to the specificities of the disease. Further research with appropriate intervention studies is needed to promote carers' healthy adjustment to the disease. 

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Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature

Aim: To identify factors reported with negative and positive outcomes for caregivers of the traumatic brain injury and spinal cord injury cohorts, to investigate what interventions have been studied to support carers and to report what effectiveness has been found. Methods: Scoping systematic review. Electronic databases and websites were searched from 1990 to December 2015. Studies were agreed for inclusion using pre-defined criteria. Relevant information from included studies was extracted and quality assessment was completed. Data were synthesised using qualitative methods. Results: A total of 62 studies reported caregiver outcomes for the traumatic brain injury cohort; 51 reported negative outcomes and 11 reported positive outcomes. For the spinal cord injury cohort, 18 studies reported caregiver outcomes; 15 reported negative outcomes and three reported positive outcomes. Burden of care was over-represented in the literature for both cohorts, with few studies looking at factors associated with positive outcomes. Good family functioning, coping skills and social support were reported to mediate caregiver burden and promote positive outcomes. A total of 21 studies further described interventions to support traumatic brain injury caregivers and four described interventions to support spinal cord injury caregivers, with emerging evidence for the effectiveness of problem-solving training. Further research is required to explore the effects of injury severity of the care recipient, as well as caregiver age, on the outcome of the interventions. Conclusion: Most studies reported negative outcomes, suggesting that barriers to caregiving have been established, but not facilitators. The interventions described to support carers are limited and require further testing to confirm their effectiveness.

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The experience of psychological distress in family caregivers of people with dementia: A cross‐sectional study

Purpose: To evaluate the degree of psychological distress in family caregivers of people with dementia. Design and Methods: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. Findings: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Practice Implications: Alleviating the caregivers’ distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver. 

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Understanding patient and relative/carer experience of hip fracture in acute care: A qualitative study protocol

Background: This paper presents a qualitative study protocol focusing on older peoples' experience of recovery in acute care following hip fracture and also the experiences of their family or informal carers. There is limited evidence regarding older people and their relatives'/carers' experiences of recovery in acute care.; Aim: The study had two research questions. First what is the experience of older people who have suffered a fractured hip and secondly what is the relatives'/carers' experience of being alongside a person who has suffered a fractured hip?; Methods: The methodology chosen is phenomenology using the methods of interviewing and participant observation. It is planned to recruit a purposive sample of up to 40 patients including those with memory loss who have suffered a fractured hip, and up to 30 of their relative/carers, and up to 20 staff may choose to take part in the observation sessions. Analysis will be through drawing out units of meaning, bringing them together to form categories and themes of experience.; Conclusion: This study will extend knowledge by exploring what is important to patients and their relatives/carers in the early phase of recovery. Practice based principles that can be integrated into the hip fracture pathway and enhance future care will be developed from the study findings.; Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

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Carer involvement in compulsory out-patient psychiatric care in England

Background: There is an expectation in current heath care policy that family carers are involved in service delivery. This is also the case with compulsory outpatient mental health care, Community Treatment Orders (CTOs) that were introduced in England in 2008. No study has systematically investigated family involvement through the CTO process.; Method: We conducted qualitative interviews with 24 family carers to ascertain their views and experiences of involvement in CTOs. The transcripts were subjected to thematic analysis that incorporated both deductive and inductive elements.; Results: We found significant variation in both the type and extent of family carer involvement throughout the CTO process (initiation, recall to hospital, renewal, tribunal hearings, discharge). Some were satisfied with their level of involvement while others felt (at least partly) excluded or that they wanted to be more involved. Some wanted less involvement than what they had. From the interviews we identified key factors shaping carers' involvement. These included: perceptions of patient preference; concern over the relationship to the patient; carers' knowledge of the CTO and of the potential for carer involvement; access to and relationships with health professionals; issues of patient confidentiality; opportunities for private discussions, and; health professionals limiting involvement. These factors show that health professionals have many opportunities to facilitate, or hinder, carer involvement. The various roles attributed to carers, such 'proxy' for patient decision, 'gatekeeper' to services, 'mother' or 'expert carer', however, conflict with one another and make the overall role unclear.; Conclusions: There is a need for clarification of the expectations of carers in individual care situations, for carers to be equipped with the information they need to in order to be involved, and for services to find flexible and innovative ways of ensuring continuous, open communication. The introduction of CTOs in England has not been successful in its ambition for carer involvement.

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Negative Consequences of Family Caregiving for Veterans With PTSD and Dementia

Recent research shows veterans with posttraumatic stress disorder (PTSD) are twice as likely as other veterans to develop dementia. However, no studies to date have examined the impact of co-existing PTSD and dementia on family caregivers, who provide the majority of care to these veterans. Using the Stress Process Model, the current investigation explored the similarities and differences in psychosocial, health, and service use outcomes among caregivers assisting veterans with PTSD and dementia compared with caregivers assisting veterans with dementia only. Caregivers of veterans with PTSD and dementia indicated that their relative exhibited more difficult behavior symptoms and used more community services. These caregivers also reported more difficulties understanding veterans' memory problems and more physical strain. Together, results suggested caregivers of veterans with both PTSD and dementia were at greater risk of negative caregiving consequences. Implications and suggestions for future research are discussed.

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Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers

Background: Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers.; Method: This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed.; Results: Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the patient's illness. When comparing the two groups (patients vs. caregivers), we observed that they presented similar results for the presence of anxiety, depression, and fatigue. Caregivers received less social support than patients did. Both groups presented similar predominance of stress levels; however, patients presented more predominance of psychological symptoms. With reference to quality of life, patients and caregivers presented similar results on the social aspects, vitality, mental health, and mental domains.; Conclusion: The mental health characteristics of patients and caregivers were similar, and within the context of dialysis for renal disease, both must undergo specific interventions.

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Spirituality as a coping mechanism for family caregivers of persons with aphasia

This study sought to describe spirituality resourcing of family caregivers for people with aphasia (PWA). A purposive sample of 14 female family caregivers of PWA from a historically disadvantaged South African community were participants (married = 42%; age range 21 to 65 years). They completed interviews regarding the spiritual support that they received when caring for their family member with aphasia. Thematic analysis of the data yielded findings to suggest spiritual interpretation of their experiences, importance of prayer as a source of hope and healing, and significance of social support from church fellowship. Spirituality is a resource for coping with the carer-role among community women with responsibility over family members with aphasia.

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What do we know about older former carers? Key issues and themes

Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.

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Supporting change in chronic disease risk behaviours for people with a mental illness: a qualitative study of the experiences of family carers


People with a mental illness experience greater chronic disease morbidity and mortality, and associated reduced life expectancy, compared to those without such an illness. A higher prevalence of chronic disease risk behaviours (inadequate nutrition, inadequate physical activity, tobacco smoking, and harmful alcohol consumption) is experienced by this population. Family carers have the potential to support change in such behaviours among those they care for with a mental illness. This study aimed to explore family carers’: 1) experiences in addressing the chronic disease risk behaviours of their family members; 2) existing barriers to addressing such behaviours; and 3) perceptions of potential strategies to assist them to provide risk behaviour change support.


A qualitative study of four focus groups (n = 31), using a semi-structured interview schedule, was conducted with carers of people with a mental illness in New South Wales, Australia from January 2015 to February 2016. An inductive thematic analysis was employed to explore the experience of carers in addressing the chronic disease risk behaviours.


Two main themes were identified in family carers’ report of their experiences: firstly, that health behaviours were salient concerns for carers and that they were engaged in providing support, and secondly that they perceived a bidirectional relationship between health behaviours and mental well-being. Key barriers to addressing behaviours were: a need to attend to carers’ own well-being; defensiveness on behalf of the family member; and not residing with their family member; with other behaviour-specific barriers also identified. Discussion around strategies which would assist carers in providing support for health risk behaviours identified a need for improved communication and collaboration between carers and health services accessed by their family members.


Additional support from general and mental health services accessed by family members is desired to assist carers to address the barriers to providing behaviour change support. Carers have the potential to support and extend health service interventions aimed at improving the chronic disease risk behaviours of people with a mental illness but may require additional information, and collaboration from services. Further research is needed to explore these constructs in a large representative sample

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Relative invisibility: an integrative review of carers’ lived experiences of a family member’s emergency mental health crisis

An integrative review was conducted to evaluate and synthesize the current state of knowledge of family carers’ experiences of emergency psychiatric crises of an adult relative. A literature review was performed by searching key terms in EBSCO (CINAHL, Criminal Justice Abstracts, Social Work Abstracts), and Proquest (MEDLINE, PsycINFO) citation databases; 3,350 citations were retrieved and screened for inclusion. Data synthesis of 25 articles meeting inclusion criteria revealed the following five themes: building to crisis; conflicted emotional experience; police apprehension; invisible experts; and “need to know.” Findings provide essential insight into family carers experiences and needs during crisis that is informative for emergency mental health response practices.

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Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries

Background: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. Aim: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. Design: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers (n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts (n = 30) where narrative analysis was undertaken. Setting/participants: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants (n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. Results: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. Conclusion: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries

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Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

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.

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Spinal cord injury and long-term carers: Perceptions of formal and informal support

The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context. In this paper, the focus is on the extent to which longterm family carers perceived they were supported by health and social services. Findings revealed a significant need for practical and lifestyle assistance, including formal respite from familial and/or caregiving responsibilities when needed. Participants also sought out a range of health and social care services to address the loneliness, isolation, grief and loss, all of which can be involved in this experience. Participants revealed that their caregiver needs are usually not recognised by health service staff, and most expressed a desire for more recognition from health professionals for the important role they play in supporting the independence of the person in their care. The study also identified that participants tended to be more reliant on informal networks of support for practical assistance and other support. Findings on the experience, perceptions and support needs of family carers of people with lifelong disability provide valuable information of great relevance to rehabilitation practice.

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The Experience of Transitioning to a Caregiving Role for a Family Member with Alzheimer's Disease or Related Dementia

Background: Alzheimer's disease is a chronic, debilitating disease that currently affects an estimated 5.5 million Americans. The majority are being cared for at home by family caregivers, who are known to have higher levels of burden than any other group of caregivers.; Purpose: The purpose of this phenomenological study was to explore the lived experiences of people who transition to the role of caregiver for a family member with Alzheimer's disease or a related dementia.; Methods: The study used purposeful sampling. Eight women and two men (mean age, 66.3 years) participated. Data were collected through in-depth semistructured interviews, along with observational field notes. Data were analyzed using a hermeneutic phenomenological approach.; Results: The average duration of caregiving reported by participants was five years. Seven themes were uncovered: something is wrong; journey to diagnosis: ambiguity and negative emotions; shifting roles and relationships: losses and challenges; seeking knowledge and support: solutions and frustrations; adapting to the topsy-turvy world of caregiving: finding purpose; preserving self without guilt; and finding a way out.; Conclusions: The study findings have implications for nursing education, research, and practice, with participants expressing needs for better communication and access to resources. The findings also suggest the importance of health care planning early in the disease process, and of raising awareness about nurses as a resource for family members

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Impact of psycho-education on burden and other correlates of caregivers of patients suffering from bipolar mood disorder

Psycho education to family members has been emerged as an important prerequisite to modern psychiatric treatment and rehabilitation, since through psycho education many problematic areas related to patient care and compliance with the treatment can be successfully addressed. Being an indispensable adjunct to modern psychiatric treatment it is more efficacious in targeting all areas of patient's illness and functionality quite suitably than any single therapy based approach. Effects of bipolar disorder can be far-reaching, both into the lives of patients and those around them. Severe cognitive, emotional and behavioural dysfunctioning related to illness lead to burden, expressed emotion, life stress, avoidance coping, decreased quality of life and lesser social support in family members of patients because of their inability in understanding the meaning of psychiatric and neurological symptoms. Primary caregiver plays multiple role in care of the ill persons, not only they take day-to-day care of the patient, supervise medications, take the patient to the hospital and look after the financial needs but also they have to bear with the behavioral disturbances in the patient. Experiencing considerable stress and burden they might develop an unhealthy coping style which may adversely affect the caregiving function and their own health. Interventions techniques have proven efficacy in reducing relapse rates and negative impact of symptoms on caregivers and can diminish negative attitudes and increase the willingness in the caregivers in providing care to patients. Through intervention caregivers are imparted knowledge about illness, its course, etiology, warning signs and various ways of managing the patient during distress and dysfunctioning. Psychoeducational training is a way of offering help for caregivers, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. It helps caregivers to become skilled in closer monitoring of disease treatment and symptoms which can have major implication in the evolution of the disease over the long term. The goals of these efforts are educational, prevention and to promote psychological health among caregivers as well as the patients. 

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"Like a drawing of breath": leisure-based art-making as a source of respite and identity among older women caring for loved ones with dementia

Background: Caring for a family member with dementia is stressful. This study explores carers' experiences of leisure-based art-making, and its contribution to psychological well-being. Method: This study interviewed six women (>60 years old) with lengthy experience of caring for a relative with dementia. All engaged regularly in art-making. Findings were inferred through Interpretative Phenomenological Analysis. Results: Participation in art-making promoted positive identity, and resilience for care-giving. It offered temporary respite from caregiving demands, helping participants maintain contact with the richness of the external world, and freedom from confinement. Artmaking facilitated meaningful connections with others, including the person with dementia, and enabled positive feedback. Participants whose loved ones had recently died or moved to residential care, processed, in oblique, possibly symbolic ways, the end of their intense involvement in care-giving. Conclusions: The findings suggest that meaningful creative leisure occupations may help to protect the psychological well-being of caregivers, promoting resilience.

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A qualitative study of factors that influence active family involvement with patient care in the ICU: Survey of critical care nurses

Objective: Family caregiver involvement may improve patient and family outcomes in the intensive care unit. This study describes critical care nurses' approaches to involving family caregivers in direct patient care.; Research Methodology& Design: This is a qualitative content analysis of text captured through an electronic survey.; Setting: A convenience sample of 374 critical care nurses in the United States who were subscribers to one of the American Association of Critical Care Nurses social media sites or electronic newsletters.; Main Outcome Measure: Critical care nurses' responses to five open-ended questions about their approaches to family involvement in direct patient care.; Findings: Nurse, patient and family caregiver factors intersected in the context of the professional practice environment and the available resources for family care. Two main themes were identified: "Involving family caregivers in patient care in the intensive care unit requires careful assessment" and "There are barriers and facilitators to caregiver involvement in patient care in the intensive care unit."; Conclusion: Patient care demands, the professional practice environment and a lack of resources for families hindered nursing family caregiver involvement. Greater attention to these barriers as they relate to family caregiver involvement and clinical outcomes should be a priority in future research.; Copyright © 2017 Elsevier Ltd. All rights reserved.

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How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer

Background: Health professionals commonly underestimate caregiver needs for information about palliative care, death and dying and may feel poorly prepared to discuss these issues. Few studies have sought caregiver perspectives of these communication practices. Aim: To explore caregiver perspectives on communication about death, dying and the introduction to palliative care, with a view towards a series of caregiver-informed recommendations for use in clinical practice. Design: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled, English-speaking, adult caregivers of people with advanced cancer (n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Results: Caregivers reported wanting routinely available written resources about palliative care, supplemented by conversations that are ideally staged overtime. Education about the tasks of palliative care should be separated from referral process, allowing time for gradual adjustment, and re-visiting discussion to enable patients and families to take some control in the process of transition. Once death is imminent, carers wanted health professionals to clarify how much they want to know about the dying process; provide spoken acknowledgement when death is close; include the words 'death' and 'dying'; use direct language, avoiding euphemisms; and communicate about death with patient present. Conclusion: This study is among the first to directly address caregiver perspectives of communication about death, dying and the introduction to palliative care. The recommendations derived from caregiver perspectives build upon existing guidelines and offer health professionals some preliminary considerations around how to undertake these important communication tasks in future. 

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Measures used to assess burden among caregivers of stroke patients: a review

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.

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Guidelines for psychosocial interventions in dementia care: a European survey and comparison

Objective: The effectiveness of psychosocial interventions in treating people with dementia and their carers is increasingly emphasised in the literature. Dementia guidelines should summarise the scientific evidence and best practice that is currently available, therefore, it should include recommendations for psychosocial interventions. The aims of our study were (1) to collate dementia guidelines from countries across Europe and to check whether they included sections about psychosocial interventions, and (2) to compare the methodological quality and the recommendations for specific psychosocial interventions in these guidelines.

Methods: The European dementia guidelines were inventoried. The methodological quality of the guideline sections for psychosocial interventions was assessed with the (AGREE) Appraisal of Guidelines Research and Evaluation instrument. The recommendations for specific psychosocial interventions were extracted from each of these guidelines and compared.

Results: Guidelines for psychosocial interventions were found in five of 12 countries. Guideline developers, methodological quality and appreciation of available evidence influenced the inclusion of psychosocial interventions in dementia guidelines from Germany, Italy, the Netherlands, Spain and the UK. The UK NICE SCIE guideline had the best methodological quality and included the most recommendations for psychosocial interventions. Physical activity and carer interventions were recommended the most across all guidelines.

Conclusion: The inclusion of psychosocial interventions in dementia guidelines is limited across Europe. High-quality guidelines that include psychosocial interventions and are kept up to date with the emerging evidence are needed. Throughout Europe, special attention to the implementation of evidence-based psychosocial care is needed in the next few years. Copyright © 2011 John Wiley & Sons, Ltd.

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"I wanted to learn how to heal my heart": family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

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General practitioners, primary care and support for carers in England: can training make a difference?

As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.

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Developing supportive care for family members of people with lung cancer: a feasibility study

Purpose: Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer.

Materials and methods: A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12.

Results: Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12.

Conclusion: This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.

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The experience of respite during home-based family caregiving for persons with advanced cancer

The purpose of this qualitative interpretive study was to explore the experience of respite during home-based family caregiving for persons with advanced cancer. Fifteen caregivers were interviewed twice after the death of their family member. Three main themes emerged from the data analysis. First, caring for a dying family member at home is an emotionally intense, exhausting, and singular experience, set in a world apart from everyday life patterns. Second, the caregivers; differentiated between cognitive breaks and physical (getting away from) breaks of respite. To achieve a cognitive break and yet remain within the caregiving environment was viewed as important, whereas the physical separation from it was significant only if it contributed in some meaningful way to the caregiving. Third, the meaning of respite is rooted in the desire to bring a measure of quality and normalcy to the life of the dying person. Respite means staying engaged in living life with the dying family member.

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Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

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Predictors and consequences of perceived lack of choice in becoming an informal caregiver

Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.

Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.

Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.

Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.

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Parents caring for adult children with physical disabilities: the impact of hope and closeness on caregiving benefits

In the present study, we examined 82 parents of adult children with physical disabilities. The parents described the benefits of caregiving, and reported positive feelings about their involvement in caregiving as well as a sense of personal growth as a result of caregiving. When parents perceived caregiving as causing less emotional strain (subjective burden), and when they felt higher levels of closeness with their offspring, and expressed higher levels of hope, they were more likely to indicate that caregiving yielded benefits. In the discussion, we focus on the importance of developing closeness and hope among parents who care for their adult offspring with physical disabilities. The implications of this conclusion for social work intervention are also discussed.

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Family carers in stroke care: examining the relationship between problem-solving, depression and general health

Aims and objectives.  The purpose of this article is to describe the problem-solving abilities of Hong Kong family carers looking after a stroke patients at home and report the relationships between their perceived problem-solving abilities with their depression level, general health status, and the functional recovery of stroke patients.

Background.  Previous research on supportive interventions for caregiving in stroke care suggests that enhancing carers’ problem-solving abilities is useful. Nevertheless, not much is known about the relationship between carers’ problem-solving abilities and their physical and psychosocial health and there is notably little work that has been done with the Chinese population.

Design.  A cross-sectional and correlational design was used.

Methods.  A convenience sample of 70 family carers, who were the main carers of stroke patients at home, during the first three months poststroke was recruited to complete a self-report questionnaire.

Result.  Significant correlations were found between the family carers’ global perceived problem-solving abilities and higher level of depressive symptoms (r = 0·35, P = 0·01) and poorer perceived health (r = 0·50, P = 0·01) as measured using the Center for Epidemiological Studies – Depression Scale and General Health Questionnaire. Among the three subscales of the Problem-Solving Inventory, problem-solving confidence showed the highest correlation with these variables. The functional ability of the stroke patients as measured using the Modified Barthel Index (MBI) was not associated with any variables.

Conclusion.  Findings of this study suggest that perception of confidence is a key factor in appraisal of problem-solving among Chinese family carers, which raises questions for future research about the impact of cultural influences on designing and measuring interventions.

Relevance to clinical practice.  The study has implications for nursing and health care practice and for developing interventions targeted at building self-confidence among Chinese carers.

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Family caregiving and congestive heart failure. Review and analysis

BACKGROUND: There is increasing evidence that discharge planning and post-discharge support for CHF patients can contribute greatly to the medical management of heart failure (CHF) in the community and that the quality of the CHF patient's close personal relationships can influence outcome in CHF. However, there has been little research on the impact of CHF on the family or the role of the family in the management of the condition. In this paper, we provide a review and analysis of studies that have explicitly investigated these issues in the informal carers of CHF patients.

RESULTS OF THE REVIEW: Sixteen papers were identified that examined the role and/or impact of informal caregiving for CHF patients. Our main findings were: demands specific to CHF caregiving were identified, e.g., monitoring complex medical and self-care regimen, disturbed sleep and frequent hospitalisation of patients. Relatively high levels of emotional distress were identified in CHF caregivers. Few studies explicitly investigated the role of informal carers in the management of CHF. Studies were limited in number, scope and quality.

CONCLUSION: Caring for a family member with CHF can affect the well-being of those responsible for care, which may have consequences for the CHF patient's health. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community.

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Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff

Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.

Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.

Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.

Conclusions: The ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness.

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Carer knowledge and perception of healthy lifestyles for adults with intellectual disabilities

Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Sixty-three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.

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Methodological issues in inclusive intellectual disability research: a health promotion needs assessment of people attending Irish disability services

Background  This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately 325 000). This is the first known triangulated large-scale approach to inclusive needs assessment of clients using regional disability services in Ireland.

Method  The research included interviewer-directed surveys of 247 clients with intellectual disability (or advocates) and 180 clients with physical/sensory disability; focus groups for clients, service providers and carers; and a postal survey for centre managers. Modification of existing surveys was required for people with intellectual disability.

Results  Fifty-six of 60 (93.3%) centres participated. The response rate at the client level was 98.8% (3/250 refusals). Health behaviours, likes and dislikes were well described by clients and advocates. Clients identified the need for more creative therapy, physical activity, relaxation therapy and social activities. Service providers and carers emphasized more the need for speech and language therapy, counselling, occupational therapy and physiotherapy.

Conclusions  Inclusive research methods can produce useful outcome measures of the health promotion needs of those with disability. Triangulation is valuable, where clients, carers and service providers are all involved in the research process.

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People with learning disabilities, carers and care workers awareness of health risks and implications for primary care

Background. People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care.

Objectives. To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease.

Methods. A qualitative approach was adopted incorporating semi-structured interviews based on vignettes. Twenty people with mild learning disabilities, 10 carers and 10 care workers were recruited. Data were analysed using Miles and Huberman's five-fold process.

Results. In total, 29 women and 11 men were interviewed. A range of health risks was identified with different patterns across groups. There were common concerns around diet. Approximately 50% of participants also had worries regarding ‘excessive computer usage’, often related to physical inactivity, and a similar proportion identified social isolation as a risk. The importance of safeguarding personal autonomy was stressed in all three groups.

Conclusion. We demonstrated the feasibility of engaging with people with mild learning disabilities regarding health improvement. Participants recognized not only risks but also the subtle interplay of different factors, reflecting a grasp of the complexity of health promotion. Approaches within primary care to health improvement need to acknowledge this level of awareness.

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Together for mental health: annual report 2013-14

"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:

a. The mental health and well-being of the whole population is improved.

b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.

c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.

d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.

e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.

f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved. 

This is the second annual report on the implementation of the Welsh Government mental health strategy. 

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A bulletin on the personal well-being of people who need care and support and carers who need support, 2014-15

This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only. 

Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.

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Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey

Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.

Methods : In a population survey, a respondent-defined question was asked regarding ‘additional spiritual support’ that would have been helpful if someone ‘close to them had died’ an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed.

Results : There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46–1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). ‘Additional spiritual support being helpful’ was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001).

Conclusion : People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.

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Informal caring in England and Wales - Stability and transition between 2001 and 2011

Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.

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The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers

Objectives: Positive aspects of the caregiving experience may buffer caregivers from the many negative psychological and physical consequences of caregiving. Understanding what factors relate to the recognition of positive aspects of caregiving is important for the enhancement of caregiver well-being. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation.

Methods: This study examined the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a loved one with Alzheimer's disease. Participant data was gathered through individual interviews conducted as a part of a larger randomized controlled trial of a caregiver intervention.

Results: We found that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.

Conclusions: Our results suggest that high self-efficacy relates to caregivers’ perception of positive aspects of the caregiving experience.

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Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory

OBJECTIVE: Following Leventhal's self-regulation model, the purpose of the present study was to provide an examination of the relationship between psychosis perceptions, coping strategies, appraisals, and distress in the relatives of patients with schizophrenia.

DESIGN: Cross-sectional study. METHOD: Participants were 42 relatives of patients with schizophrenia who completed the Hospital Anxiety and Depression Scale (HADS), a brief coping strategies measure (COPE), the Revised Illness Perception Questionnaire (IPQR), and a measure of primary and secondary appraisals (Family Questionnaire).

RESULTS: In general, carers who viewed their relative's psychosis as chronic, who had a stronger illness identity (experience of symptoms), who held a stronger belief in the severity of its consequences, and who reported weaker beliefs in treatment control but stronger beliefs that their relative could exert control over their condition had higher distress scores. Coping through seeking emotional support, the use of religion/spirituality, active coping, acceptance, and positive reframing were associated with less distress, while coping through self-blame was associated with higher distress scores. Hierarchical regression demonstrated that illness perceptions and coping (acceptance, positive reframing, and self-blame), respectively, made significant additional contributions to the variance in distress when entered after demographics, and primary and secondary appraisals. Furthermore, a mediational analysis suggested that coping strategies characterized by greater positive reframing, less self-blame, and greater acceptance mediated the relationship between distress, and both illness identity and carer's beliefs about how much personal control the patient could exercise over their condition. There was no mediational effect of coping on the relationship between distress and carers' perceptions about symptom control through medical treatment.

CONCLUSION: Results provide partial but not unequivocal support for the self-regulation model in the current sample. Findings may invite us to consider the further use of the self-regulation/common sense model as a framework for understanding distress in the carers of people with a diagnosis of schizophrenia.

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The experience of carers in supporting people with intellectual disabilities through the process of bereavement: an interpretative phenomenological analysis

Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement.

Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA).

Results: A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support.

Conclusions: Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.

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Home support workers perceptions of family members of their older clients : a qualitative study

Background: Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ family members. The goal of this research is to improve client care and better connect formal and informal care systems.

Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data.

Results: Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers.

Conclusions: HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.

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Factors affecting the decision to place a relative with dementia into residential care

AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor. CONCLUSION: Carers looking after a relative who has dementia would benefit if the relative was provided with increased day care and home respite sitting services; services should be increased at Christmas; and support staff should be knowledgeable about the specific needs of people who have dementia and their carers. 

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Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.

56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.

Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.

PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.

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Suicidal ideation in family carers of people with dementia: a pilot study

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.

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Short report. Palliative care in heart failure - a neglected area in specialist training?

Heart failure has a comparable prognosis to many cancers and accounts for approximately 4% of deaths in the UK. Despite its poor prognosis, few patients have access to specialist palliative care services. The National Institute for Health and Clinical Excellence (NICE) acknowledges that the palliative care needs of patients with heart failure and their informal carers are not currently being met. Its recently published guidance recommends the development of an effective multidisciplinary service model for such patients.

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Memories, identity and homeliness: the social construction of mealtimes in residential care homes in South Wales

Mealtimes in residential care homes are fundamentally social occasions, providing temporal structure to the day and opportunities for conversation and companionship. Food and drink are imbued with social meanings and used to express and create relationships between people. There is a dearth of research exploring care home residents' mealtime experiences in the United Kingdom. This paper reports on particular findings from a qualitative study which investigated factors influencing nutritional care provided to residents in two different types of residential care settings in South Wales, UK. Data were generated through focus group interviews with relevant staff members (N = 15), individual interviews with managers (N = 4) and residents (N = 16) of the care homes and their informal carers (N = 10), observation of food preparation and mealtimes throughout the day, and analysis of appropriate documents. Data were analysed using thematic analysis. This paper's focus is on the ways in which care home residents' experiences and understandings of mealtimes were influenced by various environmental factors, such as the home's geographical location, physical lay-out and ambience. Moreover, the shared meaning of mealtimes for residents, informal carers and staff was constructed from each group's socio-cultural background, family experiences and memories, and was integral to residents' sense of normality, community and identity.

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The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before-after cluster phase II trial of outcomes reported by family members

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain.

Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital.

Design: Uncontrolled before–after intervention cluster trial.

Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting).

Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed.

Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

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Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

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Stress of Caregivers in Caring for People With Stroke Implications for Rehabilitation

Stroke may bring about various impacts on functional deficits to people with stroke, as well as caregiving stress. The present study aims at exploring the relationship between the demographic characteristics of 33 caregivers and the stress experienced plus their implications for rehabilitation. The patients' admission scores on the Chinese Mini-Mental State Examination (CMMSE), modified Barthel Index (MBI), and Relatives' Stress Scales (RSS) of caregivers were collected. It was found that older caregivers would experience more stress, while better independence and functioning of patients suggested lower personal distress. Admission Chinese Mini-Mental State Examination scores of patients had a negative correlation with the negative feeling subscale of Relatives' Stress Scales, implying that a higher level of stroke patients' dependence on the daily activity and reduction in physical ability of caregivers may hint at a higher level of personal distress for caregivers. Cognitive deficits of patients may also induce emotional distress for caregivers. Proper handling techniques and caregiving skills for the people with cognitive deficits and higher daily activity dependence are suggested for better management.

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Wellbeing among people with dementia and their next of kin over a period of 3 years

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin’s experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient’s state of mind and care provision). Data also consisted of next-of-kin’s self reports concerning health, burden and satisfaction. The result showed that patients’ state of mind was mainly positive at baseline but a deterioration was seen over time in the patient’s mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients’ mood and the caregiver’s satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins’ general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

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Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs

Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer

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The recognition of and response to dementia in the community: lessons for professional development

Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.

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Trends in health outcomes for family caregivers of hip-fractured elders during the first 12 months after discharge

Aim.  This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes.

Background.  Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture.

Method.  For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001–2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient.

Findings.  During the 12 months after the patients’ discharge, family caregivers’ scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers’ scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support.

Conclusions.  Caring for a hip-fractured older family member over a sustained period may enhance family caregivers’ role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers’ health perception, mental health and social support.

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A Strengths Perspective on Caregiving at the End-of-life

The adverse effects of caregiving provided by family members, partners, and friends for people dying at home from a life-limiting illness have been extensively documented in the palliative care research literature, yet minimal attention has been directed towards the strengths of informal carers and their subsequent growth and development. Using in-depth interviews from a purposive sample of informal carers (n = 28), this paper reports empirical evidence from a subset of data analysed for an Australian qualitative study, illuminating a range of strengths frequently obscured beneath the emotional-labour work of caregiving and further sequestrated by the chaos of grief. A strengths perspective on caregiving at end-of-life is important because it helps to inform a reconstruction of caring and dying to include dimensions that relate to the growth of human potential and capacity, as well as enabling collaborative partnerships between workers and informal carers at the end-of-life.

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Young adult carers feel double the pressure at exam time

The article discusses the call of six leading charities for teaching professionals to take note of the huge number of young carers and young adult carers who are providing practical and emotional support to their sick or disabled family members and show how they are building carer-friendly communities. The charities, during Carers Week 2015, highlighted the lack of identification of young carers and young adult carers which leaves them without support.

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Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

OBJECTIVE: Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

METHODS: The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

RESULTS: Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

CONCLUSIONS: This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.

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Carers at the heart of 21st-century families and communities

This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.

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A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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Macmillan Carers Schemes in England: results of a multicentre evaluation

Maintaining sick and elderly people at home, particularly as they approach the end of life, is a long-established challenge for health and social care services. Over the past 30 years palliative care providers have attempted a variety of innovations in this area. We report on a descriptive study of seven pilot Macmillan Carers Schemes in England. The schemes sought to provide practical and emotional help to cancer patients and families living in their own homes. Data are available on 624 referrals to the schemes over a 1-year period. Emphasizing comparisons between schemes, we report on reasons for and sources of referral, services offered, number and duration of visits and tasks undertaken. We consider the views of informal carers who made use of the service, the perceptions of Macmillan carers themselves, and we compare financial costs of schemes. It is concluded that the schemes have the potential for further development but face problems, which reflect on their borderline position between ‘health’ and ‘social care’. Current policy changes may be beneficial to the schemes in this respect.

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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

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Caring and Retirement: Crossroads and Consequences

As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.

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Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

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An evaluation of the needs and service usage of family carers of people with dementia

This study investigated, by way of interview (n=45), the needs of those caring for a person with dementia and their satisfaction with current services in the Caerphilly County Borough of South Wales. Carers reported having the most difficulty coping with the demands on their time and the emotional strain associated with caring. Carers requested more information regarding available services, the diagnosis of dementia and the legal and financial aspects of caring. They also mentioned the need for a night‐sitter service, a 24‐hour helpline, more support groups and more visits from social workers and community psychiatric nurses (CPNs). On the whole, the carers were satisfied with the services provided, although their use of these services was not extensive. However, issues around lack of support, quality and availability of homes and hospitals and poor communications were identified as areas of concern. The findings were welcomed by strategic planners and the information is being used as a basis for developing and improving specific carer support services.

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The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

Background: While the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden.

Methods: Health professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis.

Results: Twenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship.

Conclusions: The economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.

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The national outcomes framework for people who need care and support and carers who need support, 2014-15: working document

The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.

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Family Caregivers, Their Needs, and Home-based Palliative Cancer Services

The focus of this four-stage, longitudinal, qualitative, and quantitative study was to explore, from the caregivers perspective, the impact of caring for a person with a diagnosis of terminal cancer, in order to improve the planning and coordination of home-based hospice services in Australia. Caregivers identified five primary-care needs relating to lack of information and ineffective communication with health professionals, inadequate emotional support, the need for assistance with physical care and household tasks, support for caregiver health and social wellbeing, and financial issues. The extent to which current service provision met each of these needs varied. The findings of this study suggest that if palliative care is to be shifted to the home environment, improvement in services concerned with providing support for family caregivers is essential if existing guidelines for palliative care provision are to be met.

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Exploring the other side of cancer care: the informal caregiver

Objectives: To identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression.

Methods: One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies.

Findings: One-way ANOVA showed that there are significant differences among the various educational levels (p<0.001) and the income (p<0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females (p=0.29). In regression analysis it was found that only caregiver's income and patient's age are statistically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies (p<0.001).

Conclusions:Caregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver's income and patient's age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving.

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Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden

Research has shown that several variables influence the burden of primary caregivers of cancer patients staying at home in the palliative phase, but the associations between these variables have hardly been explored. The aim of this study was to examine the associations of theory-driven variables with the caregivers’ burden by means of path analysis. The sample consisted of 96 caregivers of cancer patients in the palliative phase staying at home recruited from a hospital trust in Norway. The dimensions of burden from the Caregiver Reaction Assessment, namely self esteem, lack of family support, impact on finances, and impact on daily schedule, were used as the dependent variable. The following independent variables were tested in the models: the patients’ levels of pain, fatigue, and nausea; and the caregivers’ physical quality of life, anxiety and depression, and social support.

The Partial Least Squares approach to structural equation modelling was used for the path analysis. Model 1 shows the direct associations between the independent variables and the dependent variable, explaining 16% of the variance in caregiver burden. Model 1 supports the finding that only caregivers’ depression has a direct significant association with caregiver burden, and shows further that the effects of the other independent variables on burden are mediated through depression. In Model 2, anxiety and depression are mediating factors between three other independent variables and caregiver burden, and 12% of the variance is explained. Model 2 supports none of the independent variables as antecedents of burden. Testing of the models suggested that caregivers’ depression was the main factor associated with caregiver burden, but also an important mediator of indirect associations of indirect associations of caregivers’ anxiety and physical health.

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Unmet needs of outpatients with late-life depression; a comparison of patient, staff and carer perceptions

Background: There is evidence that late life depression is associated with high levels of unmet needs. Only a minority of the depressed patients appears to be adequately treated.

Methods: Ninety-nine older patients (58–92 years), 96 informal carers and 85 health-care professionals were recruited from six outpatient facilities for old age psychiatry in the Netherlands and interviewed to identify met and unmet needs, using the Camberwell Assessment of Needs for the Elderly (CANE). The severity of depression was measured with the Montgomery Åsberg Depression Rating Scale (MADRS).

Results: On average patients scored more unmet needs than staff and carers. On item level, patients and staff showed the highest agreement in the psychological needs category. Patient and carers showed the highest agreement on physical health needs. Logistic regression showed that severe depression is a significant predictor of low concordance between stakeholders on a substantial number of CANE items.

Limitations: Kappa coefficients were computed to determine agreement between parties involved. However, Kappa coefficients should be interpreted with caution, especially when obvious disparity in unmet needs scores between groups of interest can be observed.

Conclusion: Home dwelling older patients with major depressive disorder, their practitioners and their informal carers have different perceptions of the older patients unmet needs.Practitioners should be aware of the negative impact of depression severity on reaching agreement regarding unmet needs and its possible consequences for mutual goal setting and compliance.

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Do different stakeholder groups share mental health research priorities? A four-arm Delphi study

BACKGROUND: Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research.

OBJECTIVE: To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them.

DESIGN: Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds.

SETTING AND PARTICIPANTS: The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23).

FINDINGS: There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self-esteem and recovery. The quality of in-patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board.

CONCLUSIONS: The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.

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Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers

Objective: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.

Design: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.

Settings: Lothian region, Scotland, and Meru District, Kenya.

Participants: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers.

Main outcome measures: Descriptions of experiences, needs, and available services.

Results: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.

Conclusions: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

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A structured training programme for caregivers of inpatients after stroke (TRACS) : a cluster randomised controlled trial and cost-effectiveness analysis

Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.

Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with, number ISRCTN 49208824.

Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.

Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.

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Informal care and home-based palliative care: the health-related quality of life of carers

Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.

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Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.

Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.

Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.

Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.

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Does physical activity reduce burden in carers of people with dementia? A literature review

Objectives: Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia.

Methods: Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias.

Results: A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training. Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference −0.43; 95% confidence interval (CI) −0.81 to −0.04, in comparison to a control group of usual care.

Conclusions: There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia. Copyright © 2014 John Wiley & Sons, Ltd.

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Asian carers' experiences of medical and social care: the case of cerebral palsy

This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in‐depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. We conclude that developments in service provision need to build on the perspectives of South Asian individuals and communities to respond effectively to their needs.

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Bringing Young Carers Out of the Shadows

The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays. However, many young carers also see positive outcomes of their role like heightened sense of self-worth, satisfaction from caregiving tasks, and belief that they are more mature.

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Community care for people with disability: blurring boundaries between formal and informal caregivers

Health care for individuals with disability is increasingly shifting from institutional settings to the "community," with assistance by those in the formal sector. In this article, the authors examine 5 case studies illustrating interactions and relationships between people with disability and their caregivers, using qualitative data collected as part of a community study of disability conducted in a medium-sized city in the northeastern United States. Employing the task specificity framework, they explore the implications of using either formal care providers to fill needs that are more typically met by family and friends or family caregivers to provide care that is best provided by the formal sector. Although our narratives illustrate the negative implications of mismatched care substitution, we conclude that the framework is less applicable to emerging systems of community care.

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The relationships between depression and other outcomes of chronic illness caregiving

Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).

Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.

Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.

Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

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Psychosis and schizophrenia in adults: QS80

This quality standard covers the treatment and management of psychosis and schizophrenia (including related psychotic disorders such as schizoaffective disorder, schizophreniform disorder and delusional disorder) in adults with onset before the age of 60 years in primary, secondary and community care. It does not cover adults with transient psychotic symptoms. The standard sets out key quality statements, providing quality measures for each of them and explaining what they mean for service providers, health and social care practitioners, and commissioners and for patients, service users and carers. The eight statements cover: referral to early intervention in psychosis services; cognitive behavioural therapy; family intervention; treatment with clozapine; supported employment programmes; assessing physical health; promoting healthy eating, physical activity and smoking cessation; carer-focused education and support.

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2011 census analysis: unpaid care in England and Wales, 2011 and comparison with 2001

The provision of unpaid care was included in the Census in 2001 and 2011, when Census forms asked whether people provided unpaid care to family members, friends, neighbours or others because of long-term physical or mental ill health or disability, or problems related to old age, and for how many hours per week. This document presents an overview of the provision of unpaid care in England and Wales in 2011, including key findings at regional and local authority level and by area deprivation groupings, and comparisons with 2001. It notes that the provision of unpaid care is becoming increasingly common as the population ages, and that there were approximately 5.8 million people providing unpaid care in England and Wales in 2011. It includes a brief summary of key points and is accompanied by interactive maps and a short video about the provision of unpaid care in England and Wales.

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Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being

Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.

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Youth adjustment to parental illness or disability: The role of illness characteristics, caregiving, and attachment

This study aimed to (1) examine relations between youth adjustment and three sets of predictors: parental illness/disability characteristics, caregiving, and parent–child attachment, and (2) explore differences on these variables between youths of parental physical illness/disability and youths of parental mental illness. Eighty-one youths between 10 and 25 years of a parent with a physical illness/disability (35%) or a mental illness (43%) completed a series of self-report measures assessing perceived characteristics of the parent's illness/disability, caregiving experiences, and adjustment outcomes. Results revealed a set of predictors of poorer youth adjustment: Gradual illness/disability onset, being male, isolation, lower perceived maturity, and less choice in caregiving. Youths of parental mental illness differed from youths of parental physical illness/disability on emotional distress (worry and discomfort) dimensions of caregiving. Youth–parent attachment security was associated with youth caregiving and there was a trend for attachment to vary according to parental illness/disability type. Findings highlight young caregiving as an important target for service and policy planning.

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A Qualitative Investigation of Health Care Professionals', Patients' and Partners' Views on Psychosocial Issues and Related Interventions for Couples Coping with Cancer

Introduction: There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services.

Methods: A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach.

Results: Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment.

Conclusions: The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.

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Caring for a relative with chronic fatigue syndrome : difficulties, cogntion and acceptance over time

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present. Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness. In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

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Care Partners and Multiple Sclerosis: Differential Effect on Men and Women

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry.

Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment.

Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were men (n = 825, 61.9%), with a mean (SD) age of 51.1 (11.2) years. The mean (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. Compared with male care partners, female care partners reported higher levels of burden and stress and more medication use for stress/anxiety and mood disorders. Male care partners were more likely to report physical concerns. Care partners of people with primary progressive MS reported greater perceived burden than did partners of people with secondary progressive MS and relapsing-remitting MS. More than 40% of care partners (559 of 1288) had missed work during the past year owing to caregiving responsibilities.

Conclusions: Care partners of people with MS have substantial physical and psychological health concerns and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse effects of caregiving and evaluate positive aspects of the role.

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Effects of case management in community aged care on client and carer outcomes : a systematic review of randomized trials and comparative observational studies

Background: Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.

Methods: We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.

Results: Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.

Conclusions: Available evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.

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Recognised, valued and supported: next steps for the carers strategy: response to the call for views

In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.

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Experiences of adult stroke survivors and their parent carers: a qualitative study

Objective: To explore the experiences of adult stroke survivors and their parent carers.

Design: Qualitative methodology: interpretative phenomenological analysis. Setting: Six residential areas across England and south Wales. Participants: Six adult stroke survivors (aged 27–46), six mothers (aged 59–76) and five fathers (aged 55–76).

Method: Semi-structured interviews to explore the relationship and interactions between parent and survivor prior to and after a stroke, with opportunities to explore both positive and negative changes. All interviews were transcribed and analysed by a six step interpretative phenomenological analysis process. Survivors, mothers and fathers were analysed as three separate groups and the results were synthesised.

Results: Identical and interconnected themes emerged from the three groups, permitting synthesis into a single organising framework with four superordinate themes capturing the key issues for all three groups. The four superordinate themes were: ‘emotional turmoil’; ‘significance of parents’; ‘negotiating independence versus dependence’ and ‘changed relationships’.

Conclusions:Parents reported adjusting to caring with relative ease. Survivors did not adjust to being cared for with such ease and felt positioned in a child role. Balancing independence and dependence was a challenge for survivors and parents and is considered within a systemic theory framework. Implications for service developments and guidelines are considered.

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Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Aim.  The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.

Methodology.  An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.

Findings.  This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.

Conclusion.  Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.

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Coping with and factors impacting upon the experience of lung cancer in patients and primary carers

There is a paucity of research exploring patients' and their informal carers' experience of coping with and factors impacting on the lung cancer experience. This study aims to explore how patients and their informal carers cope with a diagnosis of lung cancer and describe the key factors that mediate distress in this population in order that they may be better supported in the future. This was a qualitative study employing semi-structured interviews and framework analysis to elicit the experience of 37 patients with lung cancer and 23 primary carers regarding their coping with and factors influencing patient/carer distress. The findings illustrate that participants used both emotional- and problem-focused coping strategies, including accepting the reality of lung cancer, adopting a positive attitude/fighting spirit, denial, avoidance and distraction and information seeking. Maintaining normality was also important. Key factors that mediate the lung cancer experience were also identified including hope, social network, prior experience of cancer and other chronic illnesses, the competing coping strategies of patients and their primary carers, the unpredictable nature of patients' behaviour, changing symptomatology, the perceived attitudes of health professionals and the impact of perceived delays in diagnosis. This study provides important insights into how patients with lung cancer and their primary carers might be better supported.

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Can clinicians and carers make valid decisions about others' decision-making capacities unless tests of decision-making competence and capacity include emotionality and neurodiversity?

Purpose – The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the learning disabled, and the view that current guidance for capacity assessments does not take into account issues of emotionality.

Design/methodology/approach – The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.

Findings – The findings include the discovery that the Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and family/carers may undertake assessments of decision‐making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision‐making capacity (and thus be seen as legally incompetent) such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the decisions on the grounds of incompetence and to act in the person's best interests. As many will lack training in their clinical and legal responsibilities and liabilities, it is crucial that they, and those they care for, are protected by not only an increased knowledge of mental capacity legislation and practice, but also how it may apply to questions of emotionality and neurodiversity.

Originality/value – This paper expands and builds on the authors' previous research into including emotionality in assessments of capacity, and will be of use to practitioners in the field of learning disability, and other psychiatric specialities.

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After a Long-Term Placement: Investigating Educational Achievement, Behaviour, and Transition to Independent Living

This study describes the transition towards independent living of 123 former fostered young people reared for long periods in a private French organisation, SOS Children’s Villages. Three generations of care leavers were analysed through a postal survey and interviews. Their narratives show typical pathways after leaving care. Two-thirds became independent without major problems by the age of 24–25. Analyses have shown that the absence of severe emotional and behavioural disorders, and diplomas obtained, improved their odds of becoming independent. Results suggest a vital need to implement appropriate therapeutic care during placement and to develop care leaver support well beyond the age of 18, in order to help them personally and academically and to ensure their successful transition to adulthood.

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Coping strategies of families in HIV/AIDS care: some exploratory data from two developmental contexts

Caring for a family member with HIV/AIDS presents multiple challenges that strain a family's physical, economic and emotional resources. Family carers provide physical care and financial support and deal with changes in family relationships and roles, often with little support from outside of the family. Carers in developing countries face even greater challenges, due to lack of medical and support services, poverty and widespread discrimination against those with HIV/AIDS. Little is known about how family carers cope with these challenges or about the ways that development impacts on the process of coping. The current study explored coping strategies used by family carers in two contexts, Kerala, India and Scotland, UK. As part of a larger study, 28 family carers of persons living with HIV/AIDS were interviewed −23 in Kerala and 5 in Scotland. A modified version of the Ways of Coping scale was used to assess coping strategies. Responses were compared on the total number of coping responses used as well as on selected subscales of the WOC. Differences were assessed using the Mann-Whitney U-test. The two cohorts differed significantly in terms of the coping strategies used. The carers from Scotland used a larger number of different coping strategies and scored higher on measures of problem focused coping, positive reappraisal, seeking social support, self-controlling and distancing/detachment. Respondents from Kerala scored higher on a measure of self-blame. Results are discussed in terms of the impact of community resources on coping strategies.

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Support in the community for people with dementia and their carers: a comparative outcome study of specialist mental health service interventions

Background: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support.

Method: 104 carers of people with dementia who were interviewed as soon as possible after being referred to a number of Admiral Nurse (AN) services or conventional services in neighbouring areas, and who were re-interviewed eight months later, form the sample (43 AN; 61 comparison).

Results: There were no significant differences between groups, controlling for initial score, on the primary outcome measure at follow-up, the 28-item General Health Questionnaire (GHQ) or its sub-scales, apart from anxiety and insomnia, where outcome was better for the AN group (p = 0.038). Follow-up GHQ scores were associated with ratings of past and current relationship quality. There were no differences in survival in the community between the groups.

Conclusion: Both conventional and AN services are associated with lower distress scores over an eight-month period. Outcome for people with dementia (in terms of institutional placement) is no worse in the AN group, despite the carer focus. Some support is provided for a model of dementia-specialist service which engages with the caregiver and continues involvement for as long as is required, rather than simply carrying out an assessment and referring the person back to social services or primary care. Copyright © 2003 John Wiley & Sons, Ltd.

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A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service

Objective: To investigate stroke patients’ and carers’ perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.

Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.

Setting: Community stroke services in North Nottinghamshire, UK.

Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.

Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

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Unintended consequences: caregivers may be a barrier to the aging becoming tech savvy

"Caregivers are so overwhelmed by the demands of managing basic needs that they tend to only think of technology as tools to save time or provide safety," said Bill Novelli, founder of the Global Social Enterprise Initiative and Georgetown McDonough distinguished professor of the practice. "We need to eliminate the disconnect between the caregivers' ability to incorporate enriching technology into their care routines and their role in providing basic care for their loved ones." In addition to time constraints placed on the caregiver, the caregiver's perception of what defines successful aging focuses on the health of the adult for which they are caring. As a result, caregivers are viewing technology for aging well too narrowly and products aimed at caregivers primarily fall into the category of health and safety monitoring - which give caregivers comfort and peace of mind. 

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A question of survival: who cares for carers?

This paper describes a young refugee's experience of unbearable emotional pain, and its impact on the professionals who work with her. It demonstrates the importance of adequate support for professionals working with refugees; and the difficulties for both individuals and organizations in tolerating the limitations of resources.

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Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

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Active living: what works

Reports on a study which took place at a memory clinic in the south west of England to investigate the reasons why people with dementia and their carers do, and do not, stay physically active. The study also wanted to find out which activities would be acceptable and sustainable for people with dementia and their carers. Five people living with Alzhiemer's Disease and their five spouse carers were interviewed using semi-structured interviews. Barriers and facilitators to physical activity were linked to both the progression of dementia and the relationship between carers and the person with dementia. Other issues identified include time constraints; previous activities undertaken; social acceptance and general attitudes towards dementia. The findings highlight the need to understand the attitudes, routines, previous activities and abilities of people with dementia.

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Adjusting to the caregiving role: the importance of coping and support

Background: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development.

Method: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients.

Results: Caregivers’ existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding from family and friends.

Conclusions: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.

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Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

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Living with Parkinson's disease in the community: improving assessments and interventions

Understanding how long-term illness affects quality of life for patients and families is central to providing individualised, patient-focused care in the community, as Leire Ambrosio and colleagues explain

Parkinson's disease (PD) is a long-term condition that affects patients' and carers' quality of life. It is important to develop and implement new approaches that bring together health and psychosocial care for people living with chronic illnesses such as PD. The authors emphasise the role of primary care nurses in supporting patients and their informal carers, and outline how practitioners can focus care on patients' psychosocial as well as physical needs. The article includes a literature review of the process of living with PD and discusses the development and implementation of interventions based on assessments tailored to the individual needs of patients and their carers.

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Bipolar disorder in adults: QS95

This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.

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Community-based organizations for vulnerable children in South Africa: Reach, psychosocial correlates, and potential mechanisms

Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.

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Hip fracture patients' cognitive state affects family members' experiences - a diary study of the hip fracture recovery

Background: Many patients with hip fractures suffer from dementia disease, which has shown to affect the outcome of recovery strongly, as well as care and treatment. As most hip fracture patients are discharged home early after surgery, caregiving often falls on family members – spouses, daughters, sons, or even neighbours become informal carers.

Aim: To explore how hip fracture patients’ cognitive state affect family members’ experiences during the recovery period.

Methods: Eleven diaries written by family members’ of hip fracture patients were analysed by means of qualitative content analysis.

Findings: The analysis generated two main categories with four categories. The first main category was; ‘Being a family member of a cognitively impaired patient’ with the categories ‘Dissatisfaction with lack of support’ and ‘Emotional distress due to the patient’s suffering’. The second main category was ‘Being a family member of a cognitively intact patient’ with the categories ‘Satisfaction with a relative’s successful recovery’ and ‘Strain due to their caring responsibilities’. Being a family member of a patient with cognitive impairment and a hip fracture meant being solely responsible for protecting the interests of the patient; in regard to care, rehabilitation and resources. The family members were also burdened with feelings of powerlessness and sadness due to the patients’ suffering. On the contrary, family members of cognitively intact hip fracture patients had positive experiences. The family members expressed pleasure from seeing their close ones make progress. However, when the healing process was delayed this led to strain on the family members.

Conclusions: The findings suggest the hip fracture patient’s cognitive state is more decisive than the hip fracture itself for the family members’ experiences.

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Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

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The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment overtime

This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.

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Informal carers and wound management: an integrative literature review

Objective:The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention.

Method: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers.

Results: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need.

Conclusion: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.

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Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.

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Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.

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Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.

Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.

Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.

Study limitations: In choosing participants for the study a sampling bias may have occurred.

Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.

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Carers strategy: second national action plan 2014 - 2016

Summarises the Government's progress in supporting carers since the publication of Recognised, valued and supported: next steps for the Carers Strategy' in 2010. It provides an overview of evidence gathered over the last few years and explains the main achievements in recognising and supporting carers during that time. It focuses specifically on progress in four priority areas: early identification and recognition of carers; realising and releasing potential and enabling carers to fulfil their educational and employment potential; providing support to enable carers to have a family and community life alongside caring; and supporting carers to stay mentally and physically well. The report also identifies key actions for the Government for the next 2 years. Examples of initiatives and good practice are included throughout.

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Who's going to care?

This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK. 

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Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

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The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge

The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients’ preferred roles in self-care are under-researched.

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Between worlds: the experiences and needs of former family carers

While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants' post-caring experiences and the emergent themes formed the basis for the development of a semi-structured interview guide. Data from the focus group were analysed inductively using Creswell's qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to ‘move on’.

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Non-pharmacological approaches for dementia that informal carers might try or access: a systematic review

Objective: To review non-drug treatments for dementia; to provide a source of evidence for informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access. The systematic review addresses: what non-drug treatments work and what do they work for? What non-drug treatments might work and what for? What non-drug treatments do not work?

Methods: Literature searches of seven electronic databases (AMED, CINAHL, EMBASE, MEDLINE, PSYCINFO, Cochrane Library of Systematic Reviews and DARE) were carried out in November 2007 using the following search terms (or derivatives): dementia/Alzheimer's AND Review AND non-drug therapies and aimed at finding systematic reviews.

Results: Thirty-three reviews were identified; 25 were judged to be high or good quality. Studies within these systematic reviews were characterised by weak study designs with small sample numbers. Three interventions were found to be effective for use with particular symptoms of dementia: music or music therapy, hand massage or gentle touch and physical activity/exercise.

Conclusions: Whilst informal carers can apply some of the interventions highlighted in the home setting at little or no cost to themselves or to health or social care services, others are likely to require training or instruction. Service providers and commissioners should explore current and future provision of more structured group activities for people with dementia; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer. Copyright © 2009 John Wiley & Sons, Ltd.

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Coping with dementia and older families of adults with Down syndrome

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care. The authors found that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not ascertain any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and what will happen in the future.

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The time perspective of the Alzheimer caregiver

Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.

Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.

Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.

Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.

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The impact of service user cognitive level on carer attributions for aggressive behaviour

Background  This study was designed to test the hypothesis that carer attributions for aggressive behaviour vary according to a service user's severity of intellectual disability.

Methods  Forty-two residential care staff participated in an investigation examining the effects of the level of a service user's intellectual disability on causal attributions for their aggressive behaviour. Equal numbers of participants were assigned to either a ‘mild disability’ or a ‘severe disability’ condition and required to read a vignette depicting a service user with aggressive challenging behaviour. The service user's cognitive abilities were experimentally manipulated across conditions, whilst the behaviour described remained unchanged. Participants were required to make attributions along Weiner's (1980) dimensions of locus, stability and controllability, and in accordance with five prominent models of challenging behaviour (Hastings 1997b).

Results  The service user depicted in the mild disabilities condition was perceived to have significantly greater control over factors causing the aggressive behaviour than the service user in the severe disabilities condition. Participants in the severe disabilities condition considered the aggression to be significantly more challenging. Learned behaviour and emotional causal models of aggressive behaviour were favoured, whilst the physical environment account was seen as least appropriate. Additionally, the biomedical model was rated as significantly more applicable in the severe disability condition than in the mild disability condition.

Conclusions  Implications for staff and service users are discussed. In particular, the relationship between staff causal attributions for challenging behaviour, their emotional responses and willingness to engage in helping behaviour is explored.

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Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia : pragmatic randomised controlled trial

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.

Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.

Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).

Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.

Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.

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Internet interventions can meet the emotional needs of patients and carers managing long-term conditions

Experiencing and managing a long-term condition places heavy emotional demands on a patient or carer. We conducted disease-specific focus groups for patients or carers. We recruited adults with diabetes, heart disease or hepatitis C, parents of children with asthma or diabetes, and carers of people with Alzheimer's disease. Participants had sole access to a PC and were asked to use three Internet interventions, each for 30 min. We conducted 10 disease-specific focus groups in three areas of the UK, involving a total of 40 participants. Three main themes emerged from the data: dealing with negative emotions, boosting positive emotions and social support. Designers of Internet interventions should consider users’ emotional needs and how to meet these needs with every section or facility within an intervention.

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The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis

Objective: To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors.

Methods: Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used.

Results: Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: −0.12; 95% CI: −0.23 to −0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors.

Conclusion: Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format.

Practical implications: To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions.

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Carers are not always seeking out the support they may need

'Hidden carers' refers to informal carers who may not recognise themselves as carers and so do not, or struggle to, access support. This may apply to carers of people with long-term conditions, such as heart disease, whose role involves more emotional work than practical tasks.

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A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

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Understanding social support for patients with cancer

This article considers some of the dimensions of social support that can impact on the quality of life of people with cancer, their carers and their family. The article concentrates on emotional support, information support and tangible support.

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General practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services

Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.

Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.

Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.

Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.

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Self-help groups as mutual support: what do carers value?

The literature suggests that the United Kingdom, in common with Europe, North America, Canada and Scandinavia, has seen significant growth in single-issue self-help/mutual aid groups concerned with health and social care issues since the 1970s, but there is only ad hoc academic and policy interest in such groups in the United Kingdom. This article presents findings from a doctoral study with two self-help/mutual aid groups for carers in South-East England. The data are drawn from semistructured interviews with 15 active members which explored reasons for joining, benefits derived from membership, and perceived differences between support gained by membership and their relationship with professionals. Most group members had prior experience of voluntary work/activity, which influenced their decision to join, often prompted by a failure of the ‘usual’ support network of family/friends to cope or adjust to the carer's needs. Members reported personal gains of empathy, emotional information, experiential knowledge and practical information, based on a core value of reciprocity through peer support. It is this latter benefit that sets apart membership of self-help groups from groups supported by professionals who may not appreciate the scope and breadth of carers’ responsibilities, or of the importance of their relationship with the person for whom they care. In this way, self-help groups offered additional, but not alternative, ‘space’ that enabled members to transcend their traditional role as a ‘carer’. It is concluded that self-help/mutual aid groups, based on reciprocal peer support, offer a valuable type of resource in the community that is not replicable in professional–client relations. The findings have contemporary relevance given the raft of new policies which value the experiential knowledge built by both individual and collectives of carers.

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Supporting family caregivers at the end of life: they don't know what they don't know

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

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Caring for family members with chronic physical illness: a critical review of caregiver literature

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study.

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Prevalence, disability and need in adults with severe learning disability

Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.

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The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.

OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.

METHODS: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered.

RESULTS: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N=168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off.

CONCLUSIONS: Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention. Copyright © 2013 Elsevier B.V. All rights reserved.

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Hidden patients: The relatives of patients in need of palliative care

Background: When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.

Method: The study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ2) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).

Results: Relatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering “very hard to bear” (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.

Conclusion: Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.

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Freedom and Imperative Mutual Care Between Older Spouses With Physical Disabilities

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple’s preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationship.

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Emotional and Tangible Reciprocity in Middle- and Older-Aged Carers of Adults With Intellectual Disabilities

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.

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Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention

OBJECTIVE: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered.

DESIGN AND SETTING: Caregivers of stroke patients were recruited in four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple stepwise regression analysis was performed to determine the effects of patient and caregiver characteristics, resources, coping strategies and duration of the caregiver role on caregiver strain, mental well-being and vitality.

SUBJECTS: The majority of the caregivers were female spouses. Their mean age was 64 years, and their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on average.

MAIN OUTCOME MEASURES: The following main outcome measures were used: the Caregiver Strain Index, and two scales of the Short Form-36 to measure caregivers' mental well-being and vitality.

RESULTS: Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers' strain, mental well-being or vitality.

CONCLUSIONS: Women, younger caregivers, caregivers in poor physical health, and caregivers of patients with severe changes are at risk of burn-out. Support programmes should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programmes should be offered.

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Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment

Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.

Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.

Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).

Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.

Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.

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Patient and carer needs following a cancer-related hospital admission: the importance of referral to the district nursing service

Background. Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitalizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity.

Aim. To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs.

Method. In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically.

Results. Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks.

Conclusion. All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs of carers not resident with/not related to patients is necessary.

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Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.

Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.

Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.

Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified

  • Perceived carer control;

  • Mental and emotional well-being;

  • Types and impact of caregiving tasks;

  • Impact of patients’ physical condition;

  • Impact of age/gender/demographic factors;

  • Positive aspects of caregiving.

Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

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Listening to the voices of young carers using Interpretative Phenomenological Analysis and a strengths-based perspective

The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.

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The Gendered Construction and Experience of Difficulties and Rewards in Cancer Care

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles.

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Efficacy and experiences of telephone counselling for informal carers of people with dementia

Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.

Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.

Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.

Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.

Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.

Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.

Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.

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Spousal Caregiving and Financial Strain Among Middle-Aged and Older Adults

We examine whether spousal caregivers face difficulties in meeting their basic household expenses compared to nonspousal caregivers and whether social support mechanisms ameliorate any financial strain from caregiving responsibilities. We use data for caregivers aged 45 and over drawn from a nationally representative, cross-sectional Canadian Community Health Survey-Healthy Aging (N = 5,067). Spousal caregiving is associated with a 35% increase in the likelihood of experiencing difficulties in meeting basic expenses compared to other types of caregiving. Each of social support mechanisms (affectionate, emotional/informational, and positive social interaction), singularly and combined, lessens financial strain from caregiving. Our findings suggest that spousal caregivers are particularly vulnerable because they have fewer resources to draw on for support and perform much more intensive care. Our results highlight the importance of developing appropriate policies and programs to support caregivers.

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Burden of care in amyotrophic lateral sclerosis

Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. Patients and methods: The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires. Furthermore, influencing factors (functional impairment of the patient, additional carers, participation in support groups) were assessed. Results: The mean total burden of care for ALS was low compared with dementia, mixed neuropsychiatric and internal diseases, but was correlated with functional impairment (P = 0.003). The main burden components were 'personal and social restrictionsfland ’physical and emotional problems‘. Problem behaviour of the patients was low in general, but was higher in carers participating in support groups (P = 0.002). Carers supported by additional carers had higher strain. Conclusion: The low burden of ALS carers may be caused by the low incidence of problem behaviour in ALS patients. However, if problem behaviour exists, carers participate more often in support groups, indicating the need for assistance. The burden of care increases with the functional impairment. Support for the carers has to start sooner.

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Giving care to people with symptoms of AIDS in sub-Saharan Africa

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.

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A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.

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A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

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Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers

Aims and objectives: To characterise the main difficulties, coping strategies, sources of satisfaction and levels of burden disclosed by informal caregivers of older people who are dependent due to physical and mental causes, in the Portuguese context and to compare the impact between caregivers for older people with physical dependence and caregivers for older people with mental dependence.

Background: Caring for a dependent older person is a complex process that puts two people in interaction, each with their own traits and their own histories of private life. When performing this role, the care provider needs to know how to deal with difficulties through a range of coping strategies. The outcome of this relationship may result in burden as a result of the volume of care, the complexity of care or the caregiver's inability to provide needed care. Caring for a family member can also be a source of satisfaction thanks to the pleasure of giving back and/or providing well-being.

Design: This is a quantitative, analytical and correlational study.

Methods: This study was conducted among two distinct groups–caregivers of older people without dementia (physical impairment) and caregivers of patients with dementia (impairment of a predominantly cognitive nature). Data were collected by administering a previously defined questionnaire that sought to gather various sorts of information (sociodemographic, clinical and environmental) and that included certain specific instruments, such as dependency ratio, cognitive assessment tests, an index of difficulties, a satisfaction index, an index of coping strategies and a burden scale.

Results: The sample consisted in 184 caregivers over 40 years of age, of which, 101 cared for dependent people without cognitive impairment and 83 cared for people with dementia. Most caregivers were women (87%), most were married (78·8%), with a low level of education (33·7% did not complete primary school and only 7·1% had any postsecondary education). Most were spouses or daughters (75·5%). The caregivers of older patients with dementia had lower levels of satisfaction, with a mean difference of 12·95 percentage points, p < 0·001. It appears that caring for older people with dementia implies a greater burden, with a mean difference of 15·4 percentage points, p < 0·001. There is a strong correlation between difficulties and burden (r = 0·89, p < 0·001) and between the effectiveness of coping strategies and satisfaction (r = 0·92, p < 0·001).

Conclusions: This study suggests that caregivers of older people with dementia are more vulnerable due to their higher levels of burden, which are associated with higher levels of difficulties and reduced sources of satisfaction.

Relevance to clinical practice: These data are essential for the management and implementation of health programmes that can reduce the vulnerability of caregivers. Programmes should address caregivers' difficulties and burden as a way to promote satisfaction with providing care.

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Double-duty caregivers: healthcare professionals juggling employment and informal caregiving. A survey on personal health and work experiences

Aims: This study compared the work-related experiences and personal health status of double-duty caregivers with those of caregivers who do not provide informal care to a family member or close friend in need.

Background: The interest in providing informal care alongside employment is growing. However, little attention has been paid to the dual role of the healthcare professional who also has caregiving responsibilities for a needy person in his/her private situation. It is important to study the negative and positive consequences of this combination of professional and family care giving.

Design: A cross-sectional study.

Methods: In 2011, we distributed a digital questionnaire to employees with a professional care function working at a healthcare organization in the Netherlands. Descriptive statistics, analyses of covariance and tests of linearity were performed.

Results: Analyses of variance demonstrated that as professional healthcare workers provide more hours of informal care in their private lives, their mental and physical health significantly worsens, while their need for recovery increases. Also, statistical significant increases were seen for emotional exhaustion, presenteeism and negative experiences with Work–Home and Home–Work Interferences. Remarkably, positive Home–Work Interference increased significantly with increasing hours of informal care. Double-duty caregivers appeared to be equally motivated and satisfied with their work as their co-workers. No differences were seen with respect to absenteeism.

Conclusion: Double-duty caregivers prove to be employees who are at risk of developing symptoms of overload. This finding calls for special attention, with long-term solutions at both legislative and organizational level.

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Adult autism strategy consultation: a summary of the submissions received in response to the online consultation

The Department of Health’s A Better Future: consultation on a future strategy for adults with autistic spectrum conditions has attracted responses from a wide range of people and institutions, including people with an autistic spectrum condition (ASC), their families and carers, professionals involved with people with an ASC, and campaigning organisations. Respondents express frustration at the way people with an ASC are so little understood not only by the public at large, but often by the professionals who determine the care they receive. Particular problems expressed within the responses include the difficulty for adults in getting an ASC diagnosis. A national standard for such diagnoses, recognised by bodies other than the National Health Service, is recommended. Health professionals need to be aware of the other health problems, both physical and mental, to which an ASC can lead and that such problems can mask the underlying existence of an ASC.

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The impact of informal care for patients with Pompe disease: An application of the CarerQol instrument

BACKGROUND: Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease.

METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers.

RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities.

CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.

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The good doctor: the carer's perspective

Carers are family members, friends, and neighbours who perform medical tasks and personal care, manage housekeeping and financial affairs, and provide emotional support to people who are ill, disabled, or elderly. From a carer's perspective, the primary requisite for a good doctor is competence. Assuming equal technical skills and knowledge, the difference between ‘good’ and ‘bad’ doctors comes down to attitudes and behaviour-communication. An important aspect of communication is what doctors say to carers, and how they interpret what carers say to them. Body language-stances, gestures and expression-communicates as well. Good doctors are surrounded by courteous, helpful and efficient assistants. Doctors can make two types of errors in dealing with carers. Type 1 errors occur when doctors exclude the carer from decision making and information. Type 2 errors occur when doctors speak only to the carer and ignore the patient. Good doctors, patients and carers confront the existential meaning of illness together.

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System-wide information about family carers of adults with intellectual/developmental disabilities: scoping review of the literature

Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross-sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.

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Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.

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Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

Background: Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer.

Objective: Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC’s interactive page, “Ask the Physician”, rather than consulting with their own specialist.

Methods: This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website.

Results: Respondents used the Internet and the DLIC website to look for lung cancer–related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist.

Conclusions: The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.

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Global action against dementia: G8 Dementia Summit declaration

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and therefore call for greater innovation to improve the quality of life for people with dementia and their carers, while reducing emotional and financial burden. They acknowledge the need to develop a co-ordinated international research action plan and for high-level fora in partnership with the OECD, WHO, the EU Joint Programme on Neurodegenerative Disease (JPND), and civil society. This declaration is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They will meet again in the United States in February 2015 with other global experts, including WHO and OECD, to review the progress that has been made on their research agenda.

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Informal Carers and Their Support

The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.

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Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.

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Work-related factors and early retirement intention : a study of the Danish eldercare sector

Background: Western countries are experiencing an ageing and shrinking workforce in the eldercare sector. This study investigated whether 12 different work-related factors are associated with early retirement intentions of employees in the Danish eldercare sector. We tested whether three hypotheses explained the increase of early retirement intention: (i) high job demands (four factors) and low resources (four factors); (ii) low job attitude (three factors); and (iii) high physical strain (one factor). Methods: We included 2444 employees (aged 45–57 years) from two waves (T1 and T2) from a prospective study. Multinomial logistic regression models showed whether 12 work-related factors (T1) were associated with early retirement intention (T2); very early retirement intention and early retirement intention vs. normal retirement intention. Results: Only 14% of the participants wished to retire at the normal retirement age (65 years or older). High physical strain [hypothesis (iii)] and low and normal affective organizational commitment [hypothesis (ii)] were associated with very early retirement intention. None of the other work-related factors associated with early retirement intention. Conclusions: Future interventions should focus on reducing physical strain and increase or maintain affective organizational commitment among employees in the eldercare sector to postpone retirement.

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No voice unheard, no right ignored: key themes from the consultation responses

Between March and May 2015, the Department of Health asked people and organisations to share their views about strengthening the rights and choices of people to live in the community, especially people with learning disabilities, autism or mental health conditions. This document summarises the main trends in responses to the consultation. There were 481 responses to the consultation: half came from individuals or families, and half from organisations or groups. Most responses from individuals were from service users or family members and carers. Most responses from organisations were from voluntary sector groups, followed by local authorities and the NHS. The responses covered a range of themes, including: being part of the community; being listened to; the Mental Health Act 1983; budgets and finances; and physical and mental health.

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Caring for Mom and neglecting yourself? The health effects of caring for an elderly parent

We examine the physical and mental health effects of providing care to an elderly mother on the adult child caregiver. We address the endogeneity of the selection in and out of caregiving using an instrumental variable approach, using the death of the care recipient and sibling characteristics. We also carefully control for baseline health and work status of the adult child. We explore flexible specifications, such as Arellano–Bond estimation techniques. Continued caregiving over time increases depressive symptoms and decreases self-rated health for married women and married men. In addition, the increase in depressive symptoms is persistent for married women. While depressive symptoms for single men and women are not affected by continued caregiving, there is evidence of increased incidence of heart conditions for single men, and that these effects are persistent. Robustness checks indicate that these health changes can be directly attributable to caregiving behavior, and not due to a direct effect of the death of the mother. The initial onset of caregiving has modest immediate negative effects on depressive symptoms for married women and no immediate effects on physical health. Negative physical health effects emerge 2 years later, however, suggesting that there are delayed effects on health that would be missed with a short recall period. Initial caregiving does not affect health of married men. Published in 2009 by John Wiley & Sons, Ltd.

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Children caring for their “caregivers”: exploring the caring arrangements in households affected by AIDS in Western Kenya

Reflecting dominant understandings of childhood, many researchers describe orphans as an emotional and financial cost to the households in which they live. This has created a representation of orphans as a burden, not only to their fostering household, but also to society. This article seeks to challenge this representation by exploring children's contributions to their fostering households. Drawing on research from Bondo District in Kenya, this article brings together the views of 36 guardians and 69 orphaned children between the ages of 11 and 17, who articulated their circumstances through photography and drawing. Nearly 300 photos and drawings were selected by the children and subsequently described in writing. An additional 44 in-depth interviews and three focus group discussions were conducted to explore findings further. The data suggest that many fostering households benefit tremendously from absorbing orphaned children. All orphans were found to contribute to their fostering household's income and provide valuable care or support to ageing, ailing or young members of their households. The article concludes that caution should be exercised in using the term “caregiver” to describe foster parents due to the reciprocity, and indeed at times a reversal, of caring responsibilities.

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Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease

Objective: To determine the effect of chronic obstructive pulmonary disease (COPD) on the quality of life of caregivers.

Design and methods: A cross-sectional study was carried out with forty-two COPD patients and their primary caregivers. Patients were assessed with the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), Saint George's respiratory questionnaire (SGRQ), 6-min walking test, and spirometric and blood gas measurements. Caregivers were assessed using the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), the 5-point Likert scale for measuring caregiver/patient relationships and the caregiver burden scale (CB scale).

Results: The majority of caregivers were female (85.3%), married (59%) and had low levels of income and schooling. The mean age was 51.6±16 years. Mean caregiver PCS and MCS scores were 45.9±10 and 46±12, while the mean total burden score was 1.79±0.6. The regression analysis showed caregiver/patient relationship quality, caregiver MCS scores and patient PCS scores to be important predictors of burden and explained 63% of the variance.

Conclusions: COPD causes a significant impact on the quality of life of caregivers. The two most important predictors of COPD burden are the relationship between caregivers and patients and caregiver MCS scores.

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Carer mentoring: A mixed methods investigation of a carer mentoring service

Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.

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Current and future concerns of older parents of sons and daughters with intellectual disabilities

Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included “small option homes” and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.

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Caregiver's burden, depression and support as predictors of post-stroke depression: a cross-sectional survey

To examine the effects of caregiver's burden, depression, and support on post-stroke depression (PSD), cross-sectional data were obtained from an epidemiologic survey of 225 stroke survivors and their caregivers living in Seoul, Korea. Multivariate analyses showed that, taking the clinical status of patients into account, caregiver's burden, depression and support were related to higher PSD. Perceived burden exerts adverse effects on PSD through its influence on the depression in caregivers. Hence, the care of stroke survivors that incorporates the care of caregivers is likely to reduce the risk of post-stroke depression in patients.

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Information pathways into dementia care services: family carers have their say

This research described family carers' experiences in accessing dementia information and services in Southern Tasmania, Australia. Focus groups were conducted around three topics: (i) information available to family carers prior to a formal diagnosis of dementia, (ii) sources of information following diagnosis, and (iii) means of transfer of information. Data analysis identified themes reflecting participants' progressive care experiences: from hurtful and dismissive attitudes towards initial requests for information and early diagnosis, to futile searching for information within a seemingly disorganized healthcare system, to eventual resolution of a kind whereby dementia services were finally procured for family members to varying degrees — all of which created emotional turmoil and delayed receipt of services. This study strongly emphasises the value of health professionals seriously and empathically hearing and acting upon family carers' requests for information and prompt diagnosis of dementia. In addition, there is a significant need to improve access and organization of information and services for people with dementia and their family carers.

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An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson’s disease are cared for in the community, little is known about family members’ lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

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‘I felt I have grown up as an adult’: caregiving experience of children affected by HIV/AIDS in China

Background  The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.

Methods  The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.

Results  Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).

Conclusion  While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.

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Burdens of Family Caregiving at the End of Life

A patient's ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided.

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Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies

Purpose. To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies.

Methods. A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996–2006 was undertaken.

Results. Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies.

Conclusions. Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.

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Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Background: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.

Methods: We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.

Results: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.

Conclusions: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

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The effects of nursing home placement on the perceived levels of caregiver burden

Providing care for an ageing parent can be one of the most fulfilling life experiences for an adult child. It can also be one of the most exhausting physically, emotionally and financially. A carer experiences psychological and emotional changes when their dependent parent or spouse is placed into formal care. This research project uses the Montgomery Borgatta Caregiver Burden Scale, amended with a questionnaire, in a self-administered, anonymous survey to explore perceptions of caregiving burden before and after the nursing home placement periods. This research showed that numerous factors influence carers' perceptions of burden and the quality of relationships among family members.

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British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnic group, describe patient and carer characteristics, and identify predictors of increased carer strain. Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3-6 months from stroke onset. Levels of car strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.

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Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers'lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers'global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients'and caregivers'characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver’s wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.

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Family support for stroke: a randomised controlled trial

BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.

INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

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Informal caring for stroke survivors: Meta-ethnographic review of qualitative literature

Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors’ recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers’ experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed.

The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers’ perception of their identity.

Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth.

If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers’ practical and emotional needs.

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Dependence, independence or inter-dependence? Revisiting the concepts of 'care' and 'dependency'

Research and theory on ‘dependency’ and ‘care-giving’ have to date proceeded along largely separate lines, with little sense that they are exploring and explaining different aspects of the same phenomenon. Research on ‘care’, initially linked to feminism during the early 1980s, has revealed and exposed to public gaze what was hitherto assumed to be a ‘natural’ female activity. Conversely, disability activists and writers who have promoted a social model of disability have seen the language of and the policy focus upon ‘care’ as oppressive and objectifying. ‘Dependency’ is an equally contested concept: sociologists have scrutinised the social construction of dependency; politicians have ascribed negative connotations of passivity; while medical and social policy discourse employs the term in a positivist sense as a measure of physical need for professional intervention. Autonomy and independence, in contrast, are promoted as universal and largely unproblematic goals. These contrasting perspectives have led social theory, research and policies to separate and segregate the worlds of ‘carers’ from those for whom they ‘care’. Drawing on the work of Kittay and others, this paper explores the ways in which sociological perspectives can develop new understanding of the social contexts of ‘care’ and ‘dependence’.

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The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty’s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be conscious micro-managers of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a binding vigilance; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.

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The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.

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Caring, Employment, and Quality of Life: Comparison of Employed and Nonemployed Mothers of Adults with Intellectual Disability

The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census survey on intellectual disability carried out in Hsinchu, City, Taiwan. Results revealed that nonemployed mothers are more likely to have a lower level of health status, including the WHOQOL Physical Health domain, than are mothers employed fulltime. Multiple regression analysis showed that mothers' quality of life was significantly determined by the availability of a person with whom they could share care work, family income, social support, and employment status.

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Carers Assistive Technology Service

Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.

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Work Productivity and Health of Informal Caregivers of Persons With Advanced Cancer

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. [Copyright John Wiley and Sons, Ltd.]

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A cognitive behavioural approach for carers of significant others with depression: a pilot study

Depression is a common and chronic illness affecting nearly one in five people in their lifetime. The main responsibility for people suffering from depression falls to their carers. Research indicates that carers find the burden of caring for a family member enormous and often feel isolated with this burden (Highet et al, 2004). This paper presents an evaluation of a six‐week course held in Leeds, based on the principles of cognitive behavioural therapy and specifically aimed for carers. Cognitive behaviour therapy (CBT) is a recognised intervention technique for people with mental distress (Beck, 1976; Beck et al, 1979). The approach was used with carers to help them to become aware of their thoughts, feelings, behaviour and physical reactions to certain stressful situations when caring for a family member. The approach was introduced within the safety of a supportive group situation. Average attendance was 84% and feedback suggested that this approach was beneficial to carers in coping with the stress of the carer role.

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The nature of youth care tasks in families experiencing chronic illness/disability: Development of the Youth Activities of Caregiving Scale (YACS)

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10–24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.

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Effects of family caregivers on the use of formal long-term care in South Korea

Aim: We investigated whether the presence and characteristics of a family caregiver affect the use of formal long-term care under the new Korean long-term care system.

Background: In July 2008, Korea introduced public long-term care insurance, a form of social insurance, in order to cope with the reality of the growing elderly population and the increasing demand for long-term care.

Methods: The family caregivers of 271 applicants for long-term care insurance who had a caregiver and 36 applicants without a caregiver living in one city participated in this cross-sectional study. Data were collected from November 2010 to June 2011 using self-report questionnaires. Variables included the applicant's gender; age; physical and cognitive function; type of long-term care used; presence and type of family caregivers; caregiver's gender, age, education level, marital status, and employment status; and service use covered by long-term care insurance. Logistic multiple regression was used.

Results: The effect of the presence and characteristics of a family caregiver on the use of a long-term care facility was significant. A nursing home was used for care more frequently when the applicant had no family caregiver. An elderly subject who had a spouse as a caregiver used home healthcare services more often than nursing home services.

Conclusion: The decision to use formal services may depend not only on the care level required by the applicant, but also on the presence and type of caregivers. To successfully implement the new long-term care insurance system, consideration of the caregiver situation should be included in policy development.

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A sense of security for cancer patients at home: the role of community nurses

The present paper reports on a qualitative research project designed to expose the presently unrecognised minutiae of community nurses’ work with cancer patients at home, and to identify the ways in which these, combined to form comprehensive care episodes, contribute to physical and psychosocial well-being. The project was conducted in two locations in New South Wales, Australia, one metropolitan and one rural. The research model focused on particular nurse–patient encounters, and involved pre- and post-encounter interviews with nurses, post-encounter interviews with patients and carers, and observation of the encounters themselves. Participants included generalist community nurses, cancer patients being cared for at home, and their primary carers where appropriate. This research demonstrates that regular contact with generalist community nurses is associated with a strong sense of security about the immediate situation for home-based cancer patients and their primary carers. This sense of security is a significant component of patient and carer physical and psychosocial well-being, and may have implications for health services utilisation. In the present paper, the authors outline the factors underpinning this sense of security, and argue that these findings contribute important new knowledge that is vital for contemporary debates about role responsibilities and continuity of care for cancer patients.

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Burden and quality of life in caregivers of persons with multiple sclerosis

Multiple sclerosis (MS) is the second most common cause of disability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients’ perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with family life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers.

In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.

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Contributions of a Retreat Weekend to the Healing and Coping of Cancer Patients' Relatives

Relatives play a key role in the daily support and care of cancer patients. This role, however, can negatively affect relatives physically, psychologically, emotionally, and spiritually, challenging their health and well-being. Consequently, this could inhibit relatives’ abilities to continue in their roles as caregivers. Although various studies have examined different interventions for the relatives of cancer patients, no formal research has been published on the role that retreat weekends play in their cancer journeys. In this qualitative study we used semistructured interviews to explore the experiences of 8 relatives who attended a “Skills for Healing Retreat Weekend” in Ontario, Canada. The findings indicate that the retreat, in bringing people together to partake in discussions and activities, fostered a sense of community among the participants. The retreat also had enduring effects, contributing to relatives’ ongoing processes of healing as well as providing them with strategies for coping in their roles as caregivers.

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The attitudes of people with Huntington's disease and their carers to research

Purpose: The purpose of this paper is to explore the attitude and understanding of research among people with Huntington's disease (HD) and their carers, as well as their experiences of research participation. Design/methodology/approach: Semi-structured interviews were conducted with 12 participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers. Data were analysed using interpretative phenomenological analysis. Findings: The emerging themes indicated that carers played a more active part in the research process while the service users adopted a more passive role. These differences gave rise to differences in their attitudes and perceptions of research. Carers described in detail their information processing and decision-making role when participation was offered and then throughout the subsequent study. They facilitated attendance, provided support, enabled the collection of correct data for the study, as well as ensuring the wellbeing of the service user throughout the research process. Service users, however, focused upon the behavioural and physical changes they experienced during the trial. Nevertheless a great level of enthusiasm for research was reported by both service users and carers. Originality/value: Research on the attitudes and experiences of people with HD and their carers is inadequate. Further research is therefore needed into the carers’ potentially considerable burden and significant role in HD research. This could then conceivably impact on the enhancement of the clinical trial experience and recruitment and retention in studies could be improved.

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Evaluation of a resilience-based intervention for children of parents with mental illness

Objective: The purpose of the present study was to evaluate the effectiveness of a group psychosocial intervention for children (aged 12–18) of a parent with mental illness (copmi).

Method: A treatment and waitlist-control design study with pre- and post-treatment, and 8 week follow up, was carried out. The treatment (n = 27) and control (n=17) groups were compared on three groups of dependent variables: intervention targets (mental health literacy, connectedness, coping strategies), adjustment (depression, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), and caregiving experiences.

Results: Group comparisons failed to show statistically significant intervention effects, but reliable clinical change analyses suggested that compared to the control group, more intervention participants had clinically significant improvements in mental health literacy, depression, and life satisfaction. These treatment gains were maintained 8 weeks after treatment. Participant satisfaction data supported these treatment gains.

Conclusions: Given study limitations and the modest support for intervention effectiveness it is important that this and other similar interventions should continue to be revised and undergo rigorous evaluation.

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Social problem-solving telephone partnerships with family caregivers of persons with stroke

As individuals with significant functional deficits are discharged earlier from the hospital, health care professionals are challenged to develop cost-effective intervention programmes that will assist family members to manage caregiving problems in the home. The literature suggests that social problem-solving can positively influence the physical and psychological well-being of individuals. This paper describes a social problem-solving training procedure provided primarily by telephone to assist family caregivers to manage caregiving issues in the home. (C) 2001 Lippincott Williams & Wilkins.

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Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated

QUESTIONWhat are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?DESIGNIn-depth interviews analysed by constant comparison.SETTINGHomes of stroke survivors.PARTICIPANTSPurposive sample of 20 carers 51-86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs). Carers were recruited from a UK Medical Research Council Incontinence study and a local Family Support Office.METHODSCarers were interviewed for 45-90 minutes on topics including physical role of carer, effect of caring for someone with stroke on life of carer, onset of stroke, health problems related to stroke, urinary incontinence and leakage, and the CR's family. Interviews were tape recorded (except for 1 written record), transcribed verbatim, coded hierarchically, and analysed for themes.MAIN FINDINGSStrategies for becoming [...]

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Development of the Motor Neuron Disease Carer Questionnaire

Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's α, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers’ health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers’ support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40–0.66). The development and testing of the MNDCQ indicates that as the carers’ score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments’ ability to detect change over time.

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Reducing emotional distress in people caring for patients receiving specialist palliative care - Randomised trial

Background: Caring for relatives with advanced cancer may cause psychological and physical ill health.

Aims: To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.

Method: The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.

Results: Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.

Conclusions: The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.

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Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review

Caring for a friend or relative with dementia can be burdensome and stressful, and puts carers at increased risk of physical and psychological problems. A number of psychosocial interventions, some delivered by computer, have been developed to support carers. This review evaluates the outcomes of computer-mediated interventions.

PsychINFO, MEDLINE, and CINAHL Plus were searched for papers published between January 2000 and September 2012. Study quality was evaluated using a modified version of Downs and Black's (1998) checklist.

Fourteen empirical studies, evaluating a range of complex, multifaceted interventions, met inclusion criteria. The most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two higher quality studies also found that anxiety was reduced following intervention. Most studies found that positive aspects of caring were increased through these interventions, as was carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicated general acceptability of these interventions.

The findings support the provision of computer-mediated interventions for carers of people with dementia. Future studies would benefit from design improvements, such as articulating clearly defined aims, having a control group, having adequate statistical power, and measuring a greater range of factors important to carers themselves.

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Carers perspectives on the activity patterns of people with dementia

Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity. Thirty in-depth interviews (i.e. initial and follow-up) were carried out with 15 co-resident carers of people with dementia who were recruited through local community mental health teams. Data were analysed using a grounded theory method. Overall, findings from initial interviews were taken back to the participants at the follow-up interviews. Five activity patterns were identified, which ranged from their usual activity patterns along a continuum through recognizable, illogical, irresponsible and finally reaching a dispossessed pattern. Carers used particular strategies and experienced particular emotional responses along this continuum. This work highlights the complex, temporal and dynamic nature of family carers' involvement in activity engagement. Clinician's interventions could be enhanced by: (1) recognizing the long-term experience of carers in decision making; (2) understanding the strategies used; (3) allowing carers to talk through and share their experiences in a non-judgmental way; (4) ensuring that carers are happy with any suggested interventions.

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Caring for a young adult with cancer: the impact on mothers’ health

That the carers of people with cancer are profoundly affected by their caring role is well established, yet the needs of one particular cohort, i.e. the parents of young adults with cancer, have not been well understood. The majority of carers in this situation are mothers, and it is the impact of the emotional and physical labour entailed by the care of young adults that is the focus of the present paper. Through the analysis of qualitative narrative data contributed by the mothers of young adults with cancer, the aim of this paper is to examine the health effects for women of caring for a young adult son or daughter with a life-threatening illness. The results suggest that there is an impact on the mother's health that results in unspecific, low-grade and chronic psychological and somatic symptoms which the mothers rank as a low priority. The mothers’ attempts to appear to be managing may serve to mask their own health needs from health professionals whose primary concern is the health of the son or daughter. Where psychological distress is admitted, the resulting use of prescribed antidepressants may not be experienced as helpful. The conclusions are that, because of the particular circumstances of caring for a young adult son or daughter with cancer, health professionals’ attention to the mothers’ health throughout the cancer journey may act as a preventative measure for later and more serious ill health.

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Service framework for learning disability

This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care. 

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Symptoms of dementia among adults with Down's syndrome: a qualitative study

Background  Dementia is common among adults with Down's syndrome (DS); yet the diagnosis of dementia, particularly in its early stage, can be difficult in this population. One possible reason for this may be the different clinical manifestation of dementia among people with intellectual disabilities.

Aims  The aim of this study was to map out the carers' perspective of symptoms of dementia among adults with DS in order to inform the development of an informant-rated screening questionnaire.

Method  Unconstrained information from carers of people with DS and dementia regarding the symptoms, particularly the early symptoms of dementia, was gathered using a qualitative methodology. Carers of 24 adults with DS and dementia were interviewed. The interviews were recorded and fully transcribed. The transcripts were then analysed using qualitative software.

Results  There appeared to be many similarities in the clinical presentation of dementia in adults with DS and the non-intellectually disabled general population. Like in the non-intellectually disabled general population, forgetfulness especially, impairment of recent memory combined with a relatively intact distant memory and confusion were common, and presented early in dementia among adults with DS. However, many ‘frontal lobe’-related symptoms that are usually manifested later in the process of dementia among the general population were common at an early stage of dementia among adults with DS. A general slowness including slowness in activities and speech, other language problems, loss of interest in activities, social withdrawal, balance problems, sleep problems, loss of pre-existing skills along with the emergence of emotional and behaviour problems were common among adults with DS in our study.

Conclusions  This study highlights the similarities in the clinical presentation of dementia among the general population and people with DS with a particular emphasis on the earlier appearance of symptoms associated with the frontal lobe dysfunction among adults with DS.

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The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives.  The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers.

Background.  Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons.

Design and methods.  Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden.

Results.  Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies.

Conclusions.  The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving.

Relevance to clinical practice.  Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.

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A qualitative study of the experiences of long-term care for residents with dementia, their relatives and staff

Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions. We interviewed 21 residents, 17 relatives and 30 staff and five main themes were identified: Privacy and choice; relationships (abuse and vulnerability); activities; physical environment; and expectations of a care environment by carers, should they one day live in long-term care themselves. Despite being no longer responsible for the day-to-day care of the residents there was a continuing level of psychological distress among some relatives. We found that residents with a range of severity of dementia were able to participate. The most striking theme from their interviews was the need for choice. All groups talked about improving lines of communication amongst residents, relatives and staff and about the importance of activities. We recommend that homes should set up formal structures for engaging with user and carer views at all levels. This would mean relatives on the board, and regular meetings for residents, relatives, advocates and staff. This should lead to cultural changes where residents are perceived as individuals and care is provided in a more flexible way. There should be a programme of activities in each 24-hour care setting, which all care staff are given time to implement. These activities need to be tailored to the individual resident rather than the whole group.

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The provision of emotional labour by health care assistants caring for dying cancer patients in the community: A qualitative study into the experiences of health care assistants and bereaved family carers

Background: While previous research has suggested that health care assistants supporting palliative care work in the community regard the provision of emotional labour as a key aspect of their role, little research has explored the experiences of family carers who are the recipients of such support.

Objective: To explore the emotional labour undertaken by health care assistants working in community palliative care from the perspectives of both health care assistants and bereaved family carers.

Design: We conducted a qualitative interview study in 2011–2012 with bereaved family carers of cancer patients who had received the services of health care assistants in the community, and health care assistants who provided community palliative care services. Transcripts were coded and analysed for emergent themes using a constant comparative technique.

Settings: Three different research sites in the United Kingdom, all providing community palliative care.

Participants and methods: Semi-structured interviews were conducted with 33 bereaved family carers and eight health care assistants.

Results: Health care assistants view one of their key roles as providing emotional support to patients and their family carers, and family carers recognise and value this emotional support. Emotional support by health care assistants was demonstrated in three main ways: the relationships which health care assistants developed and maintained on the professional–personal boundary; the ability of health care assistants to negotiate clinical/domestic boundaries in the home; the ways in which health care assistants and family carers worked together to enable the patient to die at home.

Conclusion: Through their emotional labour, health care assistants perform an important role in community palliative care which is greatly valued by family carers. While recent reports have highlighted potential dangers in the ambiguity of their role, any attempts to clarify the ‘boundaries’ of the health care assistant role should acknowledge the advantages health care assistants can bring in bridging potential gaps between healthcare professionals and family carers.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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There's no apprenticeship for Alzheimer's : the caring relationship when an older person experiencing dementia falls

Older people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

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Caring for carers: how community nurses can support carers of people with cancer

There are more than 1 million people in the UK looking after a family member or friend with cancer, but half the number of these carers do not receive support to care. Providing this care significantly affects cancer carers emotionally, physically, and financially. Community and district nurses have a vital role to play in reaching out to these hidden carers and signposting them to the correct support. This article provides tips on identifying carers, including who they are, the challenges they face, and how health professionals can approach and speak to them. It also provides guidance on signposting carers to national and local sources of support in the UK.

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Young carers get help and support through innovative pilot scheme

A pioneering nurse is leading a pilot programme to tackle physical and mental health problems among young carers.

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"Sometimes we get it wrong but we keep on trying": A cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia

Background: The need to support carers of stroke survivors is widely recognised. However, research on which to base recommendations is scarce. Little research has focused on carers of stroke survivors with aphasia, and that which exists suffers from problems with sample size and methodology. More information is needed about methods used by carers to manage communication difficulties and about coping strategies that promote emotional wellbeing.

Aims: To assess the coping strategies used by informal carers of stroke survivors with aphasia to manage communication problems, and their association with depressive symptoms. To assess whether a problem-specific coping inventory offers an advantage over a generic coping questionnaire for this purpose.

Methods & Procedures: Questionnaires were completed by 150 informal caregivers of stroke survivors with aphasia. The Centre for Epidemiologic Studies Depression Scale measured depressive symptoms. Coping was assessed with the Brief COPE and a problem-specific questionnaire on coping with communication difficulties. Level of social support was also assessed. Multiple regression analysis explored associations between coping and depressive symptoms. Mediation analysis assessed the significance of the indirect effect of coping between the level of communication impairment in the stroke survivor and the degree of depressive symptoms in the carer.

Outcomes & Results: Participants reported a wide range of coping strategies. Avoidant styles of coping were associated with increased depressive symptomatology. Coping by use of positive reframing was linked with fewer symptoms of depression. Anticipated level of social support was also associated with less depressive symptomology. The level of communication impairment of the stroke survivor was not predictive of depressive symptoms in carers after controlling for coping and social support. Limited support was found for a mediating model of coping. Inclusion of one subscale from the problem-specific questionnaire improved the amount of variance accounted for in depressive symptoms, above that explained by the Brief COPE.

Conclusions: The results verify that the impairment of the stroke survivor has less effect on carers' psychosocial functioning compared to coping. Assessment of coping can help to identify carers presenting with increased risk of depression. A traditional coping inventory provides an adequate assessment of the coping strategies used to manage communication problems, and can be supplemented by specific questions about avoidance. Interventions that develop some emotion-focused coping strategies in carers may support adaptation. Interventions should also aim to decrease the use of unhelpful coping strategies rather than solely focusing on increasing problem-focused forms of coping.

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Informal carers of mentally infirm elderly in Lancashire

Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.

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What carers of family members with mental illness say, think and do about their relative's smoking and the implications for health promotion and service delivery: a qualitative study

Few researchers have explored family carers’ perspectives of smoking by their family members with mental illness, despite smoking rates remaining high for people with mental illness. In-depth qualitative interviews with twelve South Australian family carers explored their experiences and views of providing care for people with mental illness who smoke. Data were analysed thematically. Around the central theme of the caring role within the context of mental illness and smoking, were three interrelated themes: (1) responsibility; (2) accommodation; and, (3) dissonance. Carers struggled physically, philosophically and emotionally with perceived responsibilities involving their family member's smoking. They felt isolated and asserted as there was limited support from service providers to assist them. Carers are important agents within the person's immediate environment who could potentially help them to improve their smoking cessation success. Community services aiming to support smoking cessation support for this population need to incorporate the role of family carers.

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Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Background Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS). Objectives To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results Carers (61% women, mean age 60.2years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p = 0.009), and living with the PwSMS (p = 0.02) were independent predictors of perceived burden.  Conclusions Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.

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Carer knowledge and experiences with menopause in women with intellectual disabilities

Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. One-to-one interviews were undertaken with 69 carers (7 male/62 female) from a range of backgrounds, all with current responsibility for the care of one or more pre-, peri-, and/or postmenopausal women with ID. Carers reported difficulty in disentangling the psychological and physical consequences of the menopause from behaviors and symptoms arising from other causes. There was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. However, carers emphasized the need for health resources to be better tailored to the women's needs and for more relevant health education training for staff. The authors conclude that additional and new demands are placed on service provision as women with ID live longer. An increased awareness of health issues relating to menopause is needed, as are more appropriate and readily available relevant health education materials for women with ID in middle age.

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Women at the crossroads : a literature review of the mental health risks facing women in mid-life

This review focuses upon women aged 45-60: an under-researched subgroup of the adult female population. Women in mid-life occupy a unique position in the lifespan at the intersection of a number of age-related and lifelong pathways. The lives of these women can be distinguished from those of both older and younger women along a number of important dimensions including their family and working lives, economic situation, general health, and the complexity of their roles both inside and outside the home. Personal and economic changes are common at mid-life as are physical changes; all have particular and distinct implications for women’s emotional and psychological health. The aim of this review is to address a knowledge deficit. Though some evidence exists about the extent of psychological distress in women aged 45-60, far less has been gathered about the causes of such difficulties or the challenges to mental health associated with mid-life experience. The lifespan is routinely conceived as containing a number of discrete stages: women’s lives are characterised by experiences that have overlapping threads and meanings and these combine with age-related issues in ways that warrant focused attention. This review draws evidence from a range of sources to identify the key parameters of mid-life women’s lives. These include: the areas and types of risk to their mental health from a range of sources, the extent of psychological distress, and the ways in which research and policy could reduce the challenges that commonly face women in mid-life and alleviate or prevent mental ill health. It should be noted at the outset that the age group 45-60 years does not map perfectly on to the existing field of research: researchers and national statisticians punctuate the life span in whatever ways they see fit. So, although we have tried to locate research which matches the age span of interest, inevitably we also draw upon the findings of research which only offers a close approximation. 

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Psychological Symptoms, Illness-Related Concerns and Characteristics of Relatives of Turkish Patients with Cancer

Being the relative of a patient with cancer is often very stressful, and there is a need for information, support, and help for carers. It is also important for the relative to know that the patient receives care of a good quality. This research investigated the relationships between sociodemographic characteristics, illness related concerns and psychological symptom scores of relatives of the patients with cancer in an inpatient oncology clinic of the GATA. A Questionnaire and Symptom Distress Check List (SCL-90-R) was administered to 106 relatives of in-patients and statistically significant relationships were found between the following characteristics and psychological symptom scores: sex, education level, duration of stay in hospital, having emotional problems and having financial problems. It was established that most problems of relatives were psychological and financial (p<0.05). Cancer is still a great source of fear and it is evident that offering psychosocial support at a professional level in addition to medical treatment will yield more favorable results for both patients and their relatives.

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How caring for a parent affects the psychosocial development of the young

Aim To investigate the impact of caring for a parent on the psychosocial development of the young person. Methods A total of 20 young carers and 20 non-caregiving peers, aged 11-18 years, were compared on self-report measures of life satisfaction, self-esteem, and behavioural strengths and difficulties. Parental reports on their child's behaviour were obtained and measured. Results Young carers reported lower life satisfaction and self-esteem compared with non-caregiving peers, and their parents rated them as having more difficulties with peer relationships and more emotional symptoms. There was no evidence of more pro-social behaviour on the part of young carers. Conclusions Caregiving has a negative effect on young people overall; improved support of and more research around young carers are required.

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Women caring for disabled parents and other relatives: Implications for social workers in the health services

Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care. 

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The health status of family caregivers in Taiwan: an analysis of gender differences

Background: Many studies have assessed the impact of caregivers' work activities on the caregiver. There is growing concern about the ever-increasing problems, both physical and physiological, faced by health care workers who provide care for the ill and incapacitated.

Aim: The aim of the study was to examine what, if any, differences exist between male and female caregivers. This study primarily focused on caregivers who were taking care of a family member.

Method: Three hundred and eighty-eight caregivers (280 females and 108 males) were recruited from 16 randomly selected home-care agencies in Southern Taiwan. The participants completed the Chinese Health Questionnaire-12 and the Self-Rated Health Scale. They also completed questionnaires drawn up specifically for the purpose of this study.

Results: Compared to the male caregivers, the female caregivers more often reported they suffered from symptoms of lack of well being, a decrease in psychosocial health and overall self-rated health.

Conclusion: The results reiterate the importance of considering gender differentiation in the caregiving role. Major differences were found in the extent to which negative health consequences were experienced by the male and female caregivers. The results suggest that caregivers, especially female caregivers, urgently require adequate professional health care assistance in order to reduce the negative physical and physiological effects of caregiving on the health caregiver. Copyright © 2005 John Wiley & Sons, Ltd.

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Dementia care: involving people in Alzheimer’s cafes

An Alzheimer’s Café is a monthly social gathering in a friendly café-like atmosphere where anyone interested in dementia, especially people with dementia and their carers, can meet. In addition to offering a social outing, this group intervention also provides a structured programme of education and information about dementing illnesses and various types of support. This article explains how Alzheimer’s Cafés are hosted, and how care home staff are involved in them. Alzheimer’s Cafés follow a set routine and are structured around an annual programme of themed topics. The topics broadly follow the course of a dementing illness and explore issues relating to the emotional aspects of having dementia and caring for a person with dementia. The overall atmosphere is one of safety, in the presence of others who understand about dementia, so that no one need be embarrassed. Managers and staff from care homes assist at Alzheimer’s Cafés and this can be good advertising for a care home or service.

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Implications for carers of terminally ill patients dying at home

Most terminally ill patients will express a wish to die at home. To achieve this, patients must rely on the support of family carers, who may experience emotional and health difficulties in providing such care, both before and after the death. Healthcare professionals can help to relieve the burden on family carers, and there is guidance available to direct GPs and other community healthcare professionals on providing good anticipatory palliative care for patients, and support for carers. This will increase the likelihood that patients at the end of life will achieve a 'good death', and family members will have a positive experience of care giving.

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Association between unmet needs for community services and caregiving strain

This study describes informal caregivers' unmet needs for community services and investigates the association between unmet needs and caregiving strain. The data used in this study were extracted from the Family Caregiving in the U.S. Survey and included 463 caregivers caring for an older adult who received community services. Among these caregivers, over one-third reported that the community services used by the care receivers did not meet their needs. Findings indicated informal caregivers who reported unmet needs were more likely to experience higher levels of emotional strain than those who did not report unmet needs after potential confounding factors were controlled for. However, the relationship between unmet needs and physical strain was marginally significant. 

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Outreach nurse support after stroke: a descriptive study on patients' and carers' needs, and applied nursing interventions

Objective: To describe the number and types of problems mentioned by successfully contacted home-dwelling stroke patients and their carers, and nursing interventions applied.

Design: In this multicentre quantitative study in the Netherlands, stroke patients and carers received outreach nurse support consisting of three telephone contacts and one home visit within six months after discharge. Standardized checklists describing a wide range of potential problems were used to record problems and interventions.

Subjects: A sample of 173 patients admitted for a stroke and discharged home, and 148 carers.

Results: Of 173 patients, 166 (96%) were contacted and 162 mentioned in total 1419 problems. Physical problems were mentioned most frequently (92%; 153/166), followed by emotional problems (60%; 99/166). The proportion of patients with problems decreased from 94% (142/151) at the first contact to 74% (108/145) at the last contact. Of 148 carers, 118 (80%) were contacted and 84 mentioned 266 problems. ‘Psychosocial burden’ was mentioned most frequently (45%; 53/118). Proportions of carers with problems were 56% (54/96) at the first contact and 37% (26/70) at the last contact. Of 864 interventions to patients, stroke nurses most frequently applied ‘supportive listening’ (55%; 471/864) and ‘reassuring or encouraging’ (12%; 107/864), and of 258 interventions to carers 45% (115/258) were ‘supportive listening’ and 17% (43/258) ‘informing’.

 Conclusions: Almost all patients and most carers were contacted. Though the number of needs decreased during the consecutive contacts, many patients and carers still raised problems during the last contact. Nurses most frequently applied the intervention ‘supportive listening’.

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Stroke: the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

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

Background: 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.

Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.

Design: This was a correlational study using a cross-sectional design.  Setting/participants: 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.

Result: 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.

Conclusion: 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.

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Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.

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Doubly deprived: a post-death qualitative study of primary carers of people who died in Western Australia.(Report)

This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.

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Who cares? A profile of people who care for relatives with a mental disorder

Objective: To profile the Australian adults who are caring for a relative with a mental disorder.

Method: Data came from the 2007 National Survey of Mental Health and Wellbeing 2007 (NSMHWB), a nationally representative household survey of 8841 individuals aged between 16 and 85 years.

Results: Many people act as carers: 15% of the Australian adult population, or nearly 2.4 million individuals. The strongest predictors of being a carer are being female and being in a relatively older age bracket. Carers provide a range of emotional and practical supports to close relatives with a range of mental disorders, most notably high prevalence disorders. Their relatives’ health problems cause them considerable worry, anxiety and depression, and their caring role can be associated with high financial costs.

Conclusions: Carers are significant stakeholders in the mental health system. Providing support for carers is crucial, particularly because their own mental health and well-being may be affected by their care-giving role. The nature of this support should take into account their large numbers, their profile and the role they perform.

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When they don't die: Prognosis ambiguity, role conflict and emotion work in cancer caregiving

Informal carers of cancer patients have high rates of burden, stress, anxiety and unmet needs; yet, some describe caregiving as fulfilling. Building on the work of Thomas and colleagues, this study takes a sociology of emotions approach to understanding variations in carers of cancer patients' emotional experiences, using interview data with 32 carers of a spouse with cancer. Analysis indicates that a clearly terminal (negative) prognosis facilitates clear priorities, unambiguous emotion management and improved social bonds. A more ambiguous (positive) prognosis, that includes a greater chance of survival, fosters role conflict, clashing feeling rules and ongoing guilt within spousal carers. This study highlights the importance of a prognosis to emotion management, underscoring a phenomenon that is likely to grow as survival rates continue to improve and explaining some of the variation in carers' experiences.

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Grouping cancer patients by psychosocial needs

This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.

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Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.

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Depressive symptoms in older female carers of adults with intellectual disabilities

Background  This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID).

Method  In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers.

Results  Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms.

Conclusions  The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group.

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Family caregiving for people with Alzheimer's disease: results of the NYU spouse caregiver intervention study

This article examines the impact caring for a spouse with Alzheimer's disease has on the caregiver. The author, arguing family caregivers often suffer from fatigue, depression, social isolation, anxiety, and physical illness as a result of the stress involved, maintains outside support for caregivers is crucial for their well-being and can benefit the patient.

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Would palliative care patients benefit from social workers’ retaining the traditional ‘casework’ role rather than Working as care managers?: a prospective serial qualitative interview study

Social workers have made a significant contribution to the development and delivery of palliative care. Both palliative care and social work are rapidly evolving but, given their changing contexts and increasing workloads, can they sustain compatibility? Advances in treatment of life-threatening illness mean that people live longer in a period of palliative care. Social work has undergone radical change in the wake of the 1990 NHS and Community Care Act and subsequent local-authority modernizations, with social workers now given the role of care managers, rather than the more traditional ‘casework’ or therapeutic role. This paper aims to explore the current and potential role of the social worker in palliative care for people with cancer and other prolonged life-threatening illness. It draws upon evidence from a prospective qualitative, patient-centred research study, which detailed the experiences of forty people with lung cancer and advanced cardiac failure, and their personal and professional carers (Murray et al., 2002). A total of two hundred and nineteen qualitative interviews were carried out.

We found that social workers were conspicuous by their absence from the lives of these forty vulnerable adults, who were living and dying in the community with many unmet needs which, potentially, could be met by social-work input. The study highlights six areas of concern in which social-work assessment and intervention could have impacted on dying patients’ quality of life and that of their carers: loss and dependency, family-centred issues, carers’ needs, practical tasks, emotional and spiritual struggles, and finally, support needs of staff. These areas are outlined to explore the territory which a social worker might inhabit if resources and policies permitted.

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Personal assistance providers' mistreatment of disabled adults

This article describes a survey of 84 adults with disabilities who received personal assistance with activities of daily living from family members, informal providers, or agency personnel. Results showed that 30 percent reported mistreatment from their primary provider, and 61 percent reported mistreatment by another provider. Verbal abuse, physical abuse, and theft or extortion were the most common forms of mistreatment by primary providers. Verbal abuse, neglect, poor care, and theft were the most common forms of mistreatment by other providers. Adults with lower incomes were the most likely to experience mistreatment. Male providers were more likely to mistreat, as were providers who were inexperienced and who provided more than 50 hours of care per week.

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A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.

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The quality of life of patients with malignant gliomas and their caregivers

The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized. Patients experienced distress in the domains of physical, psychological, and social QOL but in all four of the QOL domains there were also positive outcomes. Caregiver data demonstrated mostly positive outcomes in the four QOL domains except for loved one's declining health and fear that the loved one would die.

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Understanding abuse of women with physical disabilities: an overview of the Abuse Pathways Model

The purpose of this article is to provide an overview of an empirically based theoretical model of abuse of women with physical disabilities. The Abuse Pathways model was developed from a critical disability life history research study conducted with 37 women who had simultaneously experienced abuse and physical disability. The model begins to address the complexity of abuse of women with physical disabilities by identifying the interactive components of the phenomenon. These components include (1) the social context of disability; (2) women's abuse trajectories; and (3) vulnerability factors for abuse. The article concludes by discussing potential applications and limitations of the model.

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Caring for carers of people with stroke: developing a complex intervention following the Medical Research Council framework

Objective: To develop an intervention, using the first three phases of the Medical Research Council (MRC) framework for complex interventions, to facilitate coping skills in new carers of stroke patients.

Methods: In the preclinical (theoretical) phase, a theoretically based framework for a small group course for carers of people with stroke was developed. The intervention was grounded in a cognitive behavioural model and included carers' needs identified from a literature review. Phase I (modelling phase) comprised a qualitative study involving one-to-one semi-structured interviews with a purposive sample of informal carers of people with stroke. Following this, the intervention was modified. In phase II (exploratory phase), the modified intervention was delivered by a clinical psychologist and stroke nurse practitioner to five carers. Following postcourse interviews the course was further refined and delivered to seven new carers who subsequently completed a satisfaction questionnaire.

Results: Carers' needs identified from the literature included information provision; managing emotions; social support; health maintenance; and practical problem solving. Consultation with existing carers confirmed these as important issues with a strong emphasis on finding niches of control in life, becoming an expert carer, and dealing with emotional upheaval. Participants reported feeling more optimistic and empowered subsequent to the course.

Conclusions: The MRC framework provided a useful methodology for the development of a complex intervention. The course aimed to assist carers to regain control over aspects of their lives and manage their emotions. It was feasible to run and acceptable to carers; however a randomized controlled trial (RCT) is required to evaluate its effectiveness.

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Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well‐being of carers of persons with dementia. Forty‐two carers aged between 21 and 88years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross‐sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)‐12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well‐being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

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

Background: Patients with brain tumors form a heterogeneous group in terms of clinical presentation and pathology. However, the impact of the disease on patients′ families is often more homogenous and frequently quite profound. A considerable body of literature is available on the management of brain tumors and recently, the National Institute for Clinical Excellence has developed guidelines on the care of brain tumor patients that should improve the overall outcome for the patient from both the disease and psychological aspects. Objectives: An increasing number of studies have attempted to address the impact of the disease on the care givers and relatives of these patients, but few have considered the problem simultaneously from both the patient′s and care giver′s perspective. In this study, we analyzed the psychosocial and general health of brain tumor patients and related this to the care givers. Materials and Methods: This is a questionnaire-based postal survey of 168 patients and their relatives. We examined how the health and psychological well-being of the caregiver may affect the quality of care. Results: There is significant physical, social, and psychosocial morbidity associated with caring for brain tumor patients. Patients worry about their care givers and this constitutes additional stress for the patient. Conclusions: No constructive and lasting improvement can be made to the quality of life of patients with brain tumor until the health and welfare of their care givers are factored into the care package. With better service to the patient, it is hoped that the burden of care will lighten for the care givers.

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Managing the body work of home care

Body work is a key element of home healthcare. Recent restructuring of health and social care services means the home is increasingly a key site of long-term care. While there is a growing literature on the social dynamics between care recipients and their family caregivers, less is known about the formal work dynamic between paid care workers and care recipients and family caregivers. Drawing on interview data from an Ontario-based study of long-term home care, we explore how body work is negotiated through the embodied practices of care in the home and through care relationships associated with home care. In particular we focus on how the practices of intimate body care (such as bathing, toileting, and catheter management) show the diverse dynamics of care work through which caregivers, care recipients and homespace are constituted. We argue that the practices of care are shaped by a complex interweaving of regulatory mechanisms associated with home care along with the physical and affective dimensions of intimate body work. In turn this suggests the need for new ways of understanding body work in contemporary landscapes of care.

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A household perspective on access to health care in the context of HIV and disability: a qualitative case study from Malawi

Background: Equitable access to health care is a challenge in many low-income countries. The most vulnerable segments of any population face increased challenges, as their vulnerability amplifies problems of the general population. This implies a heavy burden on informal care-givers in their immediate and extended households. However, research falls short of explaining the particular challenges experienced by these individuals and households. To build an evidence base from the ground, we present a single case study to explore and understand the individual experience, to honour what is distinctive about the story, but also to use the individual story to raise questions about the larger context. Methods: We use a single qualitative case study approach to provide an in-depth, contextual and household perspective on barriers, facilitators, and consequences of care provided to persons with disability and HIV. Results: The results from this study emphasise the burden that caring for an HIV positive and disabled family member places on an already impoverished household, and the need for support, not just for the HIV positive and disabled person, but for the entire household. Conclusions Disability and HIV do not only affect the individual, but the whole household, immediate and extended. It is crucial to consider the interconnectedness of the challenges faced by an individual and a household. Issues of health (physical and mental), disability, employment, education, infrastructure (transport/terrain) and poverty are all related and interconnected, and should be addressed as a whole in order to secure equity in health.

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Nurses' experience of delivering a supportive intervention for family members of patients with lung cancer

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: ‘meeting diverse need’, ‘differing models of delivery’ and ‘dilemma and emotion’. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation.

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Dementia risk reduction: it's never too early, it's never too late

There are 850,000 people living with dementia in the United Kingdom today, and there is currently no diseasemodifying intervention available for any form of the condition. Costs from dementia to the UK economy are currently estimated to be over L24 billion a year and approximately 700,000 people are informal carers for people who have dementia. While age is the biggest risk factor for developing dementia, the condition is not an inevitable part of ageing. Other factors such as medical history, lifestyle and genetics may also contribute to the risk of developing dementia. A recent analysis of the research on protective and modifiable factors for dementia concluded that there is strong evidence to show that stroke, midlife high blood pressure and diabetes increase the likelihood of developing dementia. In many cases, risk of these conditions can be minimised through lifestyle choices - cutting out smoking, eating a healthy diet with low alcohol consumption, keeping physically active and maintaining a healthy weight. [...]

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The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers. Health was self-assessed, measured with the SF-36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care-giving was classified as non-carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care-giving, covariates (including work, family and socio-demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care-giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17-point decline in PF (P = 0.009) and a 14-point decline in MH (P < 0.0001) after 2 years for female high caregivers working full-time and 9.3 point improvement (P = 0.02) for non-working male high caregivers. Change was not significant for non-carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care-giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.

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Protecting the health of employees caring for family members with special health care needs

Over half of American workers are holding a paid job while also providing unpaid assistance and support to a family member. Research shows that family members who provide care to children or adults with special health care needs are themselves at risk of physical and mental health problems. Yet, little research has explored how the work environment mediates the effects of caregiving on caregivers’ mental and physical health. With a sample of 2455 currently employed U.S. adults from the Work, Family, Community Nexus (WFCN) survey, a random-digit dial, nationally representative survey of Americans aged 18–69, we examine whether paid leave and flexibility policies mediate the relationship between caregiving and health.

In Ordinary Least Squares regression models, we find that paid leave to address family members’ health was associated with better mental health status as measured by the 5-item Mental Health Inventory and paid sick leave with better physical health status as measured by self-rated overall health status. A supportive supervisor was also associated with improvements in mental and physical health. For both men and women, paid leave and a supervisor’s support offset some or all of the negative effects of caregiving, but for women, the buffering effects of working conditions are slightly larger.

Enhancing the unpaid leave guaranteed in the U.S. Family and Medical Leave Act so that it is paid and passing national paid sick days legislation will help ensure that employed caregivers can retain their jobs, receive needed income, and meet their own mental and physical health needs.

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Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

Introduction: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. Methods: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients’ carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. Results: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. Conclusions: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.

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Kinkeeping and Caregiving: Contributions of Older People in Immigrant Families

Older people can be important members of immigrant households because they do housework and give emotional support to younger family members. Caregiving is a means of symbolic kin-keeping, reinforcing the meaning of family relationships through native foods, language, and religion. Caring for grown children and their families is demanding business for older people, who are sometimes called on to take on new and unanticipated roles. Because older people can expect to become the recipients of family care, they have a big stake in the economic success of their offspring and strength of family ties. 

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A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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Risk factor characteristics in carers who physically abuse or neglect their elderly dependants

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

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Abuse of people with dementia by family carers: representative cross sectional survey

This study used a representative cross sectional survey to determine the prevalence of abusive behaviours by family carers of people with dementia. Participants were 220 family carers of people newly referred to secondary psychiatric services with dementia who were living at home. Participants were selected from community mental health teams in Essex and London. The main outcome measure used were psychological and physical abuse (revised modified conflict tactics scale). 115 carers reported some abusive behaviour and 74 reported important levels of abuse. Verbal abuse was most commonly reported. Only three carers reported occasional physical abuse.  Abusive behaviour by family carers towards people with dementia is common, with a third reporting important levels of abuse and half some abusive behaviour. Results found few cases of physical or frequent abuse, although those with the most abusive behaviour may have been reluctant to report it.

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Towards a more liveable life for close relatives of individuals diagnosed with bipolar disorder

The life of close relatives of persons with bipolar disorder (BD) is associated with emotional distress, depression, and a high level of use of mental health care. Illness-related changes of their life situation endanger relationships, social life, finances, and occupational functioning. Understanding of facilitating conditions for close relatives is still a neglected research area. The aim of the present study thus was to explore what makes the life of close relatives of persons with BD more liveable. A lifeworld phenomenological approach was used. The findings reveal that keeping distance, having stability in everyday life, and strengthening equality through transparent communication are conditions that enable close relatives to influence the unpredictable and its consequences and thus make life more liveable. This implies contributions from close relatives, the person with BD, and the caring services. We propose that health-care support should not be divided in support for the patient and/or the close relatives but instead be designed as support for the ‘patient and close relatives’ as a unit. Professional caregivers need to take responsibility for creating intersubjective settings for the person with BD and their close relatives to share their needs and make joint plans for how to influence the illness-related life issues.

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Participation Rates and Perceptions of Caregiving Youth Providing Home Health Care

Little is known about the population of caregiving youth in the United States. We sought to describe the participation rates, demographics, and caregiving tasks among sixth graders served by the American Association of Caregiving Youth (AACY) in its Caregiving Youth Project (CYP) in Palm Beach County, FL and evaluate the perceived benefit of AACY services. Sixth grade enrollment data from eight middle schools between 2007 and 2013 were obtained from The School District of Palm Beach County and the AACY. Data were obtained using a retrospective review of AACY program participant files. These files contained responses to evaluative questions from both students and family members. Overall, 2.2 % of sixth graders enrolled and participated in the program. Among the 396 caregiving sixth graders studied, care recipients were predominantly a grandparent (40.6 %) or parent (30.5 %). Common activities included providing company for the care recipient (85.6 %), emotional support (74.5 %), and assistance with mobility (46.7 %). Youth reported a median of 2.5 h caregiving on weekdays and 4 h on weekend days, while families reported fewer hours (1.6 and 2.3, respectively). At the end of the school year, the sixth graders reported improvement in school (85.5 %), caregiving knowledge (88.5 %), and self-esteem (89.5 %). Slightly over 2 % of sixth graders participated in the CYP. While support services may mitigate the negative effects of the time spent by caregiving youth, more prospective research is needed to better define the true prevalence, tasks, and time spent caregiving among this subpopulation.

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Developing a primary care-based stroke service: a review of the qualitative literature

The aim of this review was to identify the most frequently encountered longer-term problems experienced by stroke patients and their informal carers. Systematically identified qualitative studies describing self-reported experiences of stroke-related long-term problems were independently reviewed and the findings analysed using a clustering technique. Twenty-three qualitative studies, which included approximately 500 patients and 180 carers, were identified by the search methods. Most of the studies were cross-sectional, United Kingdom-based, and employed semi-structured individual interviews. The review identified 203 problem areas, which were categorised into five domains: hospital experience; transfer of care; communication; services; and social and emotional consequences. The largest domain was the social and emotional consequences of stroke, representing 39% of all problem areas. These included problems relating to mood, social changes, attitudes to recovery, and changes in self-perception and relationships. Service deficiencies, encompassing both health and social care, was the second largest domain, accounting for 29% of the problem areas. The review provides a basis for a user-focused, longer-term stroke service. The need for responses that go beyond the traditional physical rehabilitation approach is evident, and research to identify broader treatment strategies is now required.

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Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care

Objective: Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life.

Methods: A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006.

Results: Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion).

Conclusion:Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia. Copyright © 2009 John Wiley & Sons, Ltd.

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Change of identity: the psychological and emotional impact of caring for someone with multiple sclerosis

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with such a condition is likely to have emotional and psychological consequences. We carried out semi‐structured interviews with nine partners and analysed the interview transcripts using grounded theory (Strauss & Corbin, 1998), the phase presented in this article formed part of a larger overall study that explored the impact of living with MS for partners and a family. Our analysis in this phase highlights two core themes centred on identity issues faced by the participants: ‘playing detective’ in order to acquire information and manage the situation; and ‘reshaping identities’ in a shifting context, which reflected the participants' difficulties in reconfiguring important identities (at work and at home). Although previous research has addressed how carers cope, there is a dearth of qualitative literature relating to whether or not partners' identities are affected by taking a central role in caring, including how previous identities are maintained and new ones acquired.

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Family Caregivers of Older Adults: A Life Span Perspective

When faced with changes in physical health, cognition, and daily functioning, older adults most frequently rely on family members for instrumental support and more intense care activities. Using a life span perspective as our guiding framework, we identified several developmental themes across the late-life caregiving research including individual well-being, relational effects, and caregiver growth. In addition, we examined the effectiveness of education and intervention programs as well as policy initiatives designed to assist middle-aged and older family members care for their aging relatives. The multiple dimensions of, influences on, and the variability in response to the caregiving experience presents multilayered challenges that can best be addressed through the intentional integration of sound research investigations, practice initiatives, and policy directives.

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Psychosocial factors affecting hip fracture elder's burden of care in Taiwan

OBJECTIVE: The aim of this study was to analyze the factors that affect the burden of care for primary caregivers of older people during the transition period after discharge from the hospital to home.

METHODS: Using convenience sampling, 95 older patients who had been hospitalized for a hip fracture and their primary caregivers were enrolled. Data pertaining to the burden experienced by the caregivers were collected 1 week and 1 month after discharge from the hospital.

RESULTS: The burden of care was characterized as moderate. Physical functioning of the older people improved gradually with time after discharge from hospital (F = 164.582, p < .001) and were negatively related to caregiver burden. The predictive factors for caregiver burden 1 week after hospital discharge included the older people's physical functioning and self-efficacy, which together contributed to 15.6% of the total variance in caregiver burden. The predictive factors for caregiver burden 1 month after hospital discharge were the degree of caregiver burden at 1 week and social support, which together contributed to 56.0% of the total variance in caregiver burden.

CONCLUSION: A health education program should be designed to improve the primary caregiver's knowledge of providing care and suggest strategies to increase social support to reduce the overall burden of care.

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Living with advanced heart failure: a prospective, of patients and their carers based study community

Background: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models.

Aim: To describes how patients and carers view health and social care in the last year of life.

Methods: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis.

Results: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent.

Conclusions: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.

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The Care Act 2014: how is it changing social care provision?

The article examines how the Care Act 2014 is changing social care provision in Great Britain. Topics discussed are the concept of a person's well-being, the safeguarding duties of local authorities under the law, the physical, mental and emotional well-being needs of carers, the national eligibility criteria for social care services, the changes to the way care social services are paid for, and the transition arrangements from the old to the revised law.

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Worried sick: the emotional impact of cancer

Macmillan Cancer Support’s Worried Sick report presents a summary of the findings of a major quantitative survey conducted by Opinion Leader Research (OLR). The survey explores the impact of a cancer diagnosis on the lives of both people with cancer (who have received the diagnosis) and people affected by cancer (family members and friends who often help them cope with their cancer experience). Specifically our research objectives were to examine the impact of a cancer diagnosis on: • Living with cancer every day, including people’s experience of the cancer information and support system and the physical impact of cancer • People’s emotional well-being and relationships • People affected by cancer (informal carers, who may be a relative or friend) The research also aimed to establish any differences between the views and experiences of people living with or affected by cancer, and those who had never been affected by the disease.

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Effects of gender and employment status on support provided to caregivers

This study was designed to examine the impact of caregiver gender and employment status on laypeople's willingness to support the caregiver. A total of 216 undergraduates were randomly assigned to read 1 of 4 vignettes that described an individual caring for his or her physically ill spouse. Caregiver gender (man or woman) and employment status (full-time employment or retirement) were manipulated. Overall, female participants reported that they would provide higher levels of support than did male participants, particularly with regard to emotional support. Male participants were more likely than female participants to attend to caregiver employment status when rating their level of instrumental support provision. Gender of the caregiver did not exert an effect. Findings are interpreted in light of gender norms that allocate care of sick family members to women. (Original abstract)

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Awareness of social and emotional functioning in people with early-stage dementia and implications for carers

Objectives: This study explores the extent to which awareness of social and emotional function is reduced in early-stage dementia and whether this relates to the quality of life of the person with dementia (PwD), the quality of the relationship between the PwD and carer and carer stress.

Method: Ninety-seven participants with a diagnosis of Alzheimer's, vascular or mixed dementia rated their social functioning using the Socio-Emotional Questionnaire (SEQ). Carers provided parallel ratings, allowing calculation of discrepancy scores used to index awareness. Neuropsychiatric symptoms, PwD quality of life, the perceived quality of the relationship for both partners and carer stress were also measured.

Results: Factor analysis of the SEQ indicated three domains of social functioning: emotional recognition and empathy (ERE), social relationships (SR) and prosocial behaviour (PB). For PwD unawareness was related to cognitive dysfunction and psychiatric disturbance, but not to quality of life or quality of relationship. Lower awareness was associated with greater carer stress and poorer perceived quality of relationship.

Conclusion: Lack of awareness of social functioning had important implications for relationship quality and levels of carer stress.

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Educational Outcomes in the Rehabilitation of Elderly Patients with Diabetes Mellitus

Background Diabetes mellitus is a major health problem in all age populations, with complications that adversely affect the autonomy and quality of life of patients and their kindred ones, with a heavy demand on health care resources. Sedentary lifestyle, urbanization, eating habits and increasing obesity have been identified as independent risk factors for diabetes. Aim of study To establish the effectiveness of a daily walk and diet education intervention in order to look for optimum ways to change and maintain a healthy lifestyle and quality of life. Sources of research The study population consisted of Caucasian men and women ranging in age from 60 to 91 years old (mean=76.42 years old) with Type 2 Diabetes Mellitus of duration at least one year, attending two primary care offices in Iasi, Romania. Patients had a clinical and laboratory follow-up assessment every 1 to 2 months. For each of them, open interviews were conducted with consistent educative information offered related to ongoing nutrition, self-management and physical activity. This data was subsequently analyzed both in a quantitative and qualitative manner. Main Argument Outcomes of diabetes and co-morbidities management rely not only on drug medication, which depends on adverse effects like hypoglycaemia, the elderly patients’ income and their compliance, but also on human support (family, carers), non-pharmacological strategies like diet, and cardio-metabolic rehabilitation through exercise. Conclusions Results showed an improved glycaemic control, a higher awareness of symptoms and the complications of diabetes. Apart from patients’ self motivation, more frequent contact with them is necessary to encourage better self-esteem, disease prevention and quality of life. Patients who changed their lifestyle formed one important link in educating the closed ones. The role of formal and informal carers is more difficult and needs a different approach from that for younger people, taking into account co-morbidities, age-related changes in functional and mental abilities, occupational history and socioeconomic status that influence health.

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Transforming your care: vision to action: a post consultation report

This document summarises responses to the 'Transforming your care: a vision to action' consultation which ran from 9 October 2012 to 15 January 2013. 'Transforming your care' proposes a reshaped model of care with the individual at the centre to improve health and wellbeing of people, adopting a prevention and enabling approach. A total of 2,242 responses were received to the consultation from either organisations or individuals. The report draws the key themes: investment, supporting carers, the role of the workforce in implementing changes, importance of engaging with the voluntary sectors, and the need for improved joint working to address health inequalities. The followng areas are also discussed: population, health and well-being; delivering services at home and in the community; older people's services; long term conditions; palliative and end of life care; mental health; learning disability; physical disability and sensory impairment; family and child care; maternity and child care; and acute care in hospital.

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Taking things one day at a time

Describes a support group where family carers new to the challenges of dementia can learn more without loosing their privacy. 'One Day at a Time' is a series of monthly talks run by the Dementia Development Team within social services in Kensington and Chelsea who want to develop their understanding and knowledge of dementia, without disclosing all in an emotional support group.

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Dementia management in France: health care and support services in the community

In France, a wide range of care and support services exist for community dwelling people with Alzheimer's disease (AD). These are coordinated by the general practitioner (GP). We investigated interventions that were ‘prescribed’ by French GPs and analysed their perceived barriers to arranging these. Thirty-nine percent of GPs responded to a postal survey, which was sent to 1105 physicians belonging to the Sentinel GP Research Network and to 524 GPs consulting in the Rhône-Alpes region of France. Fifty percent of patients were treated with acetyl-cholinesterase inhibitors and the following other support services were used: home help (63%), nursing care (48%) and physiotherapy (35%). Although GPs acknowledged carers' need for emotional support, only minimal levels of other interventions such as day care (12%) and psychotherapeutic interventions (12%) were prescribed. Reasons for under-use included non-availability and carers' reluctance to undergo psychotherapy. Lack of integrated community care services, insufficient information on services, lack of collaboration between health professionals and the frequent absence of a reliable carer were considered the most important barriers to the effective support of people with dementia in primary health care settings.

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Resilience in children of parents with mental illness: Relations between mental health literacy, social connectedness and coping, and both adjustment and caregiving

This study investigated the relationships between resilience factors (mental health literacy, social connectedness, coping strategies) frequently targeted in interventions, and both adjustment (depressive symptomatology, life satisfaction, prosocial behaviour, emotional/behavioural difficulties) and caregiving outcomes in children (12 - 17 years) of a parent with mental illness. Forty-four participants completed questionnaires. Correlations showed weak support for the predicted beneficial associations of mental health literacy with caregiving and adjustment, stronger support for the beneficial relationships between social connectedness and adjustment, and strong support for the adverse links of disengagement and involuntary coping strategies with adjustment and caregiving. Findings suggest that some resilience factors have a differential impact on adjustment and caregiving, and support the focus of interventions on modifying resilience factors.

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Work - life imbalance: Informal care and paid employment in the UK

In the United Kingdom, informal carers look after relatives or friends who need extra support because of age, physical or learning disability, or illness. The burden of informal care work falls on women, who often care for longer hours and durations than men. This paper considers the impact that caring responsibilities have on women's employment. The research is based on a dedicated questionnaire and in-depth interviews with informal caregivers. The results suggest that carers' employment is affected by the duration of a caring episode, financial considerations, the needs of the person they care for, carers' beliefs about the compatibility of informal care and paid work, and employers' willingness to accommodate carers' needs. Overall, the research confirms that informal carers continue to face difficulties when they try to combine employment and care in spite of recent policy initiatives designed to help them. 

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An exploratory study of anxiety in carers of stroke survivors

Aims and objectives. To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. Background. Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. Design. Prospective, longitudinal, descriptive study. Method. Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions – within one month and at three months after discharge from stroke and rehabilitation units. Results. Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p = 0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. Conclusions.  Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. Relevance to clinical practice.  Nurses working in the community are ideally placed to identify and support carers suffering from anxiety.

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Work, gender, and stress in family cancer caregiving

Goals of work: The objective of this study was to examine whether employment status and gender was associated with family cancer caregivers’ reports of stress and well-being.

Materials and methods: Using a correlational, cross-sectional survey design, this study included 183 primary caregivers (i.e., those individuals who provided the most help to persons with cancer). Caregivers were recruited in a radiation oncology cancer clinic and were administered detailed interviews that collected a wide range of information about the stress process.

Results: Bivariate and multivariable analyses suggested a number of differences between various classifications of employment status and gender. In particular, women who worked appeared more likely to provide instrumental care to the person with cancer when compared to men who did or did not work. In addition, women who worked were more likely to report feelings of exhaustion and fatigue when compared to men who worked.

Conclusions: The results emphasize the need to consider the context of cancer care when analyzing the stress process. When faced with employment, women appear particularly at risk for emotional distress and greater perceived care demands. Utilizing tools that identify cancer caregivers at risk based on work, gender, or other contextual variables may inform the development and targeting of clinical interventions for this population.

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Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients

Background and Purpose— Many stroke patients and informal carers experience a decreased quality of life after discharge home and are dissatisfied with the care received. We assessed the effectiveness of an outreach nursing care program.

Methods— In a multicenter trial, 536 stroke patients were randomized at discharge to standard care (n=273) or standard care plus outreach care (n=263). The outreach care consisted of 3 telephone calls and 1 home visit within 5 months after discharge by 1 of 13 stroke nurses. Patients were masked for the trial objectives. Six months after discharge, they assessed the 2 primary outcomes: quality of life (Short Form 36 [SF-36]) and dissatisfaction with care. Secondary measures of outcome were disability, handicap, depression, anxiety, and use of health care services and secondary prevention drugs. Informal carers assessed strain, and social support. Analysis was by intention to treat.

Results— Twelve patients died before follow-up, 38 declined outcome assessment, and 486 completed the primary outcome assessments. Outreach care patients had better scores on the SF-36 domain “Role Emotional” than controls (mean difference 7.9 [95% confidence limit, 0.1 to 15.7]). No statistically significant differences were found on the other primary outcome measures. For secondary outcomes, no statistically significant differences were found, except that intervention patients used fewer rehabilitation services (relative risk, 0.66 [0.44 to 1.00]) and had lower anxiety scores (median difference 1 [0.19 to 2.79]).

Conclusions— This outreach nursing stroke care was not effective in improving quality of life and dissatisfaction with care of recently discharged patients.

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An evaluation of the impact of voluntary sector family support workers on the quality of life of carers of schizophrenia sufferers

An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.

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Evaluation of informal carers of persons with dementia

Caring for an older adult with dementia at home, is a complex process that creates chronic stress, affecting to a greater or lesser degree the physical and mental health of caregivers, so the evaluation of objective and subjective burden, as well as stressors and ways to tackle them, should not be absent in the Occupational Therapy evaluation, not to mention the family member-caregiver dyad. The preliminary results of the stage of reality immersion, have allowed constituting a sample which initiates the collection of data through in depth interviews and life histories.

The well-being of young people who care for a dependent relative: An interpretative phenomenological analysis

Developing health care systems have placed an emphasis on unpaid, informal care giving from family members as a community health resource. It is estimated that there are between 19,000 and 51,000 young carers in the UK who are at increased risk of physical and psychological ill health. Therefore, the aim of this study was to explore the personal experiences of young carers in relation to their well-being using interpretative phenomenological analysis (IPA). Semi-structured interviews were carried out with five young carers and the verbatim transcripts served as the data for an IPA. Three themes emerged: (1) what caring means; (2) isolation and distancing from others; and (3) integrating caring. The participants struggled to make sense of caring, found it relentless, overwhelming and frustrating. They experienced stigma, which led to secrecy and withdrawal, cutting them off from their social worlds and the benefit of social support. They actively sought to integrate caring into their emerging sense of self and identity, and derived a sense of pride from caring and used this to combat feelings of uncertainty and isolation.

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Application of the capability approach to health economics research involving informal carers of people with dementia

In the UK, the number of people with dementia is increasing along with life expectancy - over half of the £23bn annual cost of dementia is due to informal care time. Therefore, there is an economic argument for identifying clinically-effective and cost-effective ways to maintain and improve carer quality of life (QoL). This thesis explores the suitability of a capability based instrument, the ICECAP-O, for measuring QoL in informal carers of people with dementia. Methods: Systematic reviews, qualitative interviews, survey data and clinical trial data were used. Construct validity of the ICECAP-O was examined using baseline data from the Challenge FamCare study of people with dementia and challenging behaviours, and an online survey created to collect additional data. A cost-effectiveness analysis was undertaken using a subsample of carers in the REMCARE trial of joint-reminiscence therapy (RT). Results: The current evidence base for interventions to support carers of people with dementia is poor, with few economic evaluations existing. Qualitative work found the major themes affecting carer QoL overlapped well with capability instruments, suggesting this framework is suitable for carer research. Validity work found the ICECAP-O to be feasible and valid for use with carers. At the end of the 10 month RT trial, the mean difference in ICECAP-O scores between groups was -0.02 (bootstrapped 95% Cl of -0.1 05 to 0.066) and the mean difference in costs was £1 ,464 (bootstrapped 95% Cl of £758 to £2,313), RT was dominated by usual care. The cost-effectiveness acceptability curve indicated a 2% probability that RT was cost-effective at a willingness to pay threshold of £20,000 per point improvement and an 8% probability that RT was cost-effective at a threshold of £30,000 per point improvement on the ICECAP-O.

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A community-based exercise programme to improve functional ability in people with Alzheimer's disease: a randomized controlled trial

Rationale:  Dementia is a common neurodegenerative condition in older age associated with functional decline across multiple domains. This decline impacts not only on the person with dementia, but also on their informal carers and health and aged care systems. With the number of people with dementia rapidly increasing and few effective treatments, there is now a critical need for interventions to improve functional ability in those with the condition.

Aims and objective:  This study assesses the effectiveness of a community-based home exercise programme in improving cognitive and physical function and independence in activities of daily living (ADL) in people with Alzheimer’s disease, the most common form of dementia.

Methods:  In a 4-month randomized controlled trial, 40 community-dwelling patients diagnosed with Alzheimer’s disease and their informal carers were randomly allocated to either the treatment (exercise plus usual treatment) or control (usual treatment) group. The exercise programme consisted of daily exercises and walking under the supervision of their carer. Patients were assessed at baseline and 4-months follow-up by a blinded assessor on primary outcome measures of cognitive and physical function and ADL using standardized assessment scales.

Results:  Sixteen men and 24 women diagnosed with Alzheimer’s disease participated in the study. They had a mean age of 74.1 years (range 51–89) and a mean Mini Mental State Examination score of 22.0 (range 10–28), indicating mild to moderate dementia. At 4-months follow-up, patients who exercised, compared with controls, had improved cognition (increased Mini Mental State Examination scores by 2.6 points, p < 0.001), better mobility (2.9 seconds faster on Timed Up and Go, p = 0.004) and increased Instrumental Activities of Daily Living scores by 1.6 (p = 0.007).

Conclusion:  This study suggests that participation in a community-based exercise programme can improve cognitive and physical function and independence in ADL in people with Alzheimer’s disease.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing

Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people.

Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives.

Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B = −1.60, p < .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B = 1.02, p < .01) and lowered depression symptoms (B = −0.26, p < .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B = 0.44, p < .01) and non-spousal/child (B = 0.25, p < .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B = −1.24, p < .05). Other associations were suggestive but non-significant.

Conclusion: The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period.

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The role of the home-care worker in palliative and end-of-life care in the community setting: a literature review

The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services.

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What to do when 'there is nothing more to do'? A study within a salutogenic framework of family members' experience of palliative home care staff

The aim of this study was to develop a theoretical framework of family members' experience of palliative home care staff based on a secondary analysis of four previous studies. A salutogenic framework was used, i.e. with the origin of health in focus. Data had been collected (semi-structured tape-recorded interviews and postal questionnaires with open-ended questions) from 469 family members of mainly cancer patients referred to advanced palliative home care. Walker and Avant's strategies for theory construction were used. The secondary analysis generated three theoretical blocks: (1) general components of staff input (including five generalized resistance resources (GRRs): competence, support, spectrum of services, continuity, and accessibility); (2) specific interactions with staff (including two GRRs: being in the centre and sharing caring); (3) emotional and existential consequences of staff support (including six health-disease continuums: security-insecurity, hope–hopelessness, congruent inner reality-chaos, togetherness-isolation, self-transcendence-feelings of insufficiency and retained everyday life-disrupted everyday life). It seems important that all three aspects of family members' experience of palliative care staff are to be considered in evaluations of palliative care, in goal-setting and in teaching role models. The study is specific to the Swedish model of palliative home care and replication of the work in other countries is recommended. Copyright © 2006 John Wiley & Sons, Ltd.

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Partner care at the end-of-life: identity, language and characteristics

The delivery of services and benefits to people supporting older and disabled relatives and friends depends largely on their identification within constructs of ‘care-giving’ and ‘carer’. Those who are married or living with a partner may be particularly resistant to adopting the identity of ‘care-giver’ or ‘care receiver’. This paper investigates the circumstances of couples and their adoption of carer identities, drawing on a study of the financial implications of a partner's death. That study was based on over 750 couples where one partner died, drawn from the British Household Panel Survey, and separate qualitative interviews with people whose partner died in the previous two years. The findings show that carer self-identification was influenced by the partner's health-care needs and service contacts, including welfare benefits receipts. None of the socio-demographic factors considered was statistically linked to whether people described themselves as providing care for their partner, unless there was an underlying association with the partner's health-care needs. The findings underline the problems of using self-reported identities in surveys and estimates of take-up of services and benefits, and the difficulties of delivering entitlements to people who care for their partner at the end-of-life. A challenge for policy makers is how to move beyond formal categories of ‘carer’ and ‘care-giving’ to incorporate inter-dependence, emotional commitment and the language of relationships in planning support for frail older people.

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Creating a Supportive Environment for Living with Stroke in Rural Areas: Two Low-Cost Community-Based Interventions

With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.

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The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

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Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland

BACKGROUND: The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities.

DESIGN AND METHODS: An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in-depth interviews.

RESULTS: The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced.

IMPLICATIONS FOR PRACTICE: These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals.

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The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the lite

Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.

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Good practice for keeping stroke patients and carers informed

Stroke patients, and their carers can have many questions about the mental and physical effects of the condition, hospital procedures and treatments, and prospects for the future. This paper discusses issues involved in giving information to patients-some of whom may be experiencing serious communication problems - as well as those looking after them, and offers solutions. 

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Physical health concerns of the patient, the family and the carer

Physical health monitoring is crucial in the light of current knowledge about the risks associated with schizophrenia and its treatment. Cooperation between psychiatrists, patients and informal carers can significantly enhance patient wellbeing in this regard. Moreover, an advocacy approach elevates patients from being passive recipients of care to active participants in an integrated system that has outcome benefits for all stakeholders. Considerable progress is being made in this regard, although there is still a long way to go to maximise the benefits of carer involvement in the global management of schizophrenia.

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'Making the move': relatives' experiences of the transition to a care home

Despite a growing awareness of the significance of helping a relative to relocate to a care home as a key phase in the caregiving career, relatively few studies in the UK have explored this experience in depth. The research on which the present paper is based sought to better understand experiences of nursing home placement from the viewpoint of relatives. The study was informed by a constructivist perspective. Data were collected in 37 semi-structured interviews involving 48 people who had assisted a close relative to move into a nursing home. Data analysis revealed three phases of the transition from the relatives' perspective: 'making the best of it'; 'making the move'; and 'making it better'. The relatives' experiences across these phases were understood in terms of five continua, reflecting the extent to which they felt they were: operating 'under pressure' or not; 'working together' or 'working alone'; 'supported' or 'unsupported', both practically and emotionally; 'in the know' or 'working in the dark'; and 'in control of events' or not. This paper reports on the findings which relate to the second phase of the transition, 'making the move', which relates to experiences around the time of relocation to the care home environment. The findings suggest that health and social care practitioners have enormous potential to influence relatives' experiences of nursing home entry. Experiences are enhanced if family carers perceive that they are able to work in partnership with care staff in order to ease the transition for the older person.

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Prevalence and effects of caregiving on children

Aim This paper reports the prevalence and its related sociodemographic factors of informal caregiving by underage children in Austria. The quantity and intensity of caregiving activities, the motivation for and effects of caregiving and how this differs from non-caregiving children were investigated. Background Young carers are a worldwide phenomenon. Due to methodological and sampling problems, little quantitative data are available. Design Cross-sectional, descriptive study. Methods Based on a random selection of 85 schools and 474 classes, a total of 7403 children aged 10-14 years completed a self-reporting questionnaire that asked for children's help in their families. Descriptive and inferential statistics were used to analyse the data. Results In the sample, 4·5% caregiving children were identified. The average age of young carers was 12·5 years. Most young carers were female (69·8% vs. 52·7% in the non-young carers group). Young carers assumed more responsibilities (household tasks, general care and sibling care) than their peers. They showed a higher level of physical (e.g. headache 38·2% vs. 24·4%) and mental (e.g. to worry about 68·1% vs. 41·8%) adverse effects than non-young carers. Extrapolation suggests a rate of 3·5% young carers in underage children of 5–18 years in Austria.  Conclusion: Data on national level are essential preconditions to initiate support for young carers. Nurses can promote children's health and well-being through prevention of an inappropriate caregiving role.

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Emotional reactions and practical problems of the caregivers of hemodialysed patients

BACKGROUND: The international literature consistently shows that the psychosocial outcomes of the informal carers (caregivers) of chronically ill patients are influenced by factors such as personality traits and perceived social support, but few studies have investigated these variables in the caregivers of hemodialysed patients, and the reciprocal experience of chronicity.; METHODS: Fifty hemodialysed patients and their principal caregivers were recruited. They were administered specific questionnaires to evaluate their emotional stability and anxious/depressive reactions, the perceived burden related to the patients' condition, the quality of their family relationships and knowledge of the disease, and the degree of satisfaction with their lives. The study design was correlational and comparative. The data were analysed using Student's t test and Pearson's correlation.; RESULTS: The patients were significantly more anxious and depressed than their caregivers, and had a more negative perception of their family relationships; they also had significantly higher neuroticism scores. Although the caregivers showed good emotional stability and a relatively low level of perceived burden, they stated that their daily lives were not very interesting and involved few social contacts. Twenty-five percent of them declared that they had financial problems; twelve percent also said they had to face problems of disease-related stigma and embarrassment.  CONCLUSIONS: The results suggest that emotional stability is an important psychological determinant of perceived distress among the caregivers of hemodialysed patients. Assessing this personality trait and the reciprocal experience of chronicity in patients and caregivers may help nephrology teams identify subjects at major psychological risk, and to select the appropriate psychological support.

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“It’s us that have to deal with it seven days a week”: carers and borderline personality disorder

Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers’ focus group, entitled ‘The role of Mental Health services,’ produced four super-ordinate themes. The second carers’ focus, entitled ‘Experiences in the Community,’ produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.

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The needs of carers of men with prostate cancer and barriers and enablers to meeting them: a qualitative study in England

The aim of this study was to explore the needs of carers of men with prostate cancer and to identify barriers and enablers to meeting these needs. Carers were recruited to focus groups or interviews. These were recorded, transcribed and analysed by two researchers using Nvivo QSR6 and the Framework approach to index, chart and analyse data to identify emergent themes of the needs of carers, and barriers and enablers to meeting these needs. Fifteen carers took part in focus groups and 19 were interviewed. Carers' needs varied and were often unmet because of barriers to existing services. Carers needed: information; emotional support; practical support; effective medical care for the patient. Barriers to carers meeting their needs included: lack of awareness of sources of help; lack of understanding of information; reluctance to ask for help; prioritising the patient's needs. Enablers included better signposting to information and sources of support, and assessment of their needs. Interventions to address these needs should be developed taking account of the barriers and enablers identified here, and the experience of reported interventions for carers of other cancer patients. Carers should be offered an assessment to establish their needs and directed to appropriate sources of help.

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A time-sovereignty approach to understanding carers of cancer patients' experiences and support preferences

Much of the literature on informal carers of cancer patients is quantitative and psycho-oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non-caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time-sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion-focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time-sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.

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Behavioral and mental health problems in low-income children with special health care needs

This study examined caregiver perceptions of mental health problems and counseling needs in low-income children with special health care needs (CSHCN). Interviewers collected data from 257 caregivers of CSHCN (61% males; 60% African American; Mean age = 8.4 years) attending six Midwestern inner-city health clinics. Measures included the Child Behavior Checklist (CBCL) and an investigator-designed questionnaire. CBCL T-scores indicated that 38% of CSHCN had a behavioral or mental health problem, but only 26% of caregivers perceived the need for treatment or counseling. CSHCN should be assessed and referred appropriately for behavioral and mental health problems during routine health care visits.

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From independence to interdependence: integration means 'think family'

This article reviews current policies and their impact on carers' lives, and highlights the potential limitations of a more personalised approach to care. Using some key research findings and illustrative case studies, the article argues that we should build on the achievements of the personalisation reforms, but not limit our ambition to offering individuals more choice and control over their services. Instead, there should be a focus on individuals achieving ordinary life chances and families achieving emotional and financial sustainability. For people to experience a truly integrated response to their needs, professionals must be able to achieve integration not only across service boundaries, but also across their responses to inter‐linked individuals. Recognising this lessens the risk of offering care solutions that result in trade‐offs between one family member's independence and another's.

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Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

Background: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers’ experiences over time.

Objectives: To investigate the experiences of informal carers of stroke survivors over time.

Design: Qualitative study.

Setting: Carers of stroke survivors from one acute and two rehabilitation units in South-West London.

Participants: A purposive sample of 31 informal carers of stroke survivors discharged from inpatient treatment and rehabilitation returning home were interviewed. The majority of participants’ were spouses but they also included adult sons and daughters. Most participants were post-retirement age.

Methods: Audio-taped in-depth interviews of 30–90 min duration were undertaken at three time points—close to discharge, 1 month and 3 months post-discharge. Interviews were transcribed immediately after each interview. Analysis was an ongoing process starting during data collection and ending with themes. As themes emerged they were identified and discussed with other members of the team so that any patterns across the interviews were noted. Themes were followed up at subsequent interviews. This process enabled progressive focusing of ideas and also validated respondents’ accounts.

Results: There were a total of 81 interviews and these carers were similar demographically to other carers in stroke research. A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty. These themes can all be related to the changes in carers’ lives or the management of uncertainty around stroke. Differences in experiences and coping strategies were identified between new carers and those with prior caring experience.

Conclusions: Carers experience considerable uncertainty when caring for stroke survivors. Living with uncertainty is central to these carers’ experiences and this should be acknowledged by clinicians when supporting stroke survivors and carers. Encouraging the identification of the positive aspects of caring may help carers manage the challenges and uncertainties created by stroke.

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Couples' provision of informal care for parents and parents-in-law : far from sharing equally?

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-in-law. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of non-marital cohabitation in mid-life.

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Introduction of a new NHS electric-powered indoor/outdoor chair (EPIOC) service: benefits, risks and implications for prescribers

Objective: To determine problems associated with electric-powered indoor/outdoor wheelchairs (EPIOCs) and the benefits perceived by their users.

Design: Hospital-based cohort study of all patients referred over a 19-month period.

Setting: Regional Wheelchair Service for North West London serving nine district wheelchair services.

Subjects: Of the 174 subjects referred, 10 withdrew their application or were found to be unsuitable at screening, 164 were assessed and 124 were prescribed chairs. One hundred and thirteen subjects were interviewed by telephone four months after provision of the chair.

Main measures: Demographic and diagnostic data; current chair usage; self-reported accidents and component faults were compared with those recorded in the unit records; new activities embarked on since delivery; and benefits reported for main carers.

Results: Seventeen ‘mishaps’ were reported by 15 users including tipping from chairs (6) and falls during transfers (3). Three probably reflected mechanical failure. Component failure was found in 39% of EPIOCs, mostly affecting control boxes (22), frames (10) and footrests (10). New activities were undertaken by 56 (50%) users, usually shopping and visits to friends/family. Eighty-five per cent of users felt that the chairs made life easier for their informal carers through increased independence, reducing transfers and reduced need for ‘pushing’.

Conclusions: The component failures and self-reported accidents (some potentially dangerous) have implications for the NHS, manufacturers, prescribers and users. EPIOCs enhance the independence of severely physically disabled individuals in the community and assist carers by lessening dependence and enhancing social interaction. This study demonstrated the need for follow-up of EPIOC users and chairs.

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Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta- analysis

In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.

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Caring for a relative with dementia: family caregiver burden

This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalisation. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Centre for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68·02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Conclusion. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.

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Next-of-kin caregivers in palliative home care - from control to loss of control

Aim.  This paper is a report of a study to describe situations influencing next-of-kin caregivers’ ability to manage palliative care in the home.

Background.  Palliative home care often involves major resources from next-of-kin, municipal and county personnel. Next-of-kin caregivers’ situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver.

Methods.  A qualitative study using the Critical Incident Technique was conducted. Nine next-of-kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005.

Findings.  The analysis resulted in two main areas: ‘Maintaining control’ and ‘Losing control’. Next-of-kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient’s needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient’s physical or mental persona metamorphosed or as serious symptoms developed that they could not control.

Conclusion.  Next-of-kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re-evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.

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Measuring the impact of informal elderly caregiving: a systematic review of tools

Purpose: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life. Methods A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers. Results The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified. Conclusions: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer’s life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.

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Caregiver Bereavement Outcome: Relationship With Hospice at Home, Satisfaction With Care, and Home Death

This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were surveyed six weeks post-bereavement about the quality of terminal care. Carers next completed measures of their own bereavement response and general health six months post-bereavement. There was no evidence that HAH had an impact on bereavement outcome. In contrast, perceptions of inadequate terminal support and high symptom severity were associated with worse carer bereavement response. However, it remains unclear whether carers' retrospective ratings constitute an accurate account of symptoms and care. Home deaths were associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths. Further research is needed to investigate the implications of death at home for the carer.

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Distress relief

Reports on research from the Social Policy Research Unit (SPRU) designed to measure and monitor health inequalities between carers and noncarers. The study used data from the British Household Panel Survey (BHPS) covering the period from 1991 to 2000. Results found that emotional and mental health problems are more often associated with caregiving than physical health problems

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Psychological well-being of spouses of stroke patients during the first year after stroke

OBJECTIVE: To investigate whether spouses' psychological well-being changed between the first weeks after their partner's stroke and four months and one year later, and to study the relationship between spouses' psychological well-being and objective characteristics of the stroke patients.

DESIGN: Prospective, longitudinal study.

SETTING: Hospital care and follow-ups.

SUBJECTS: Sixty-seven consecutively enrolled spouses to first-ever stroke patients < 75 years.

MAIN MEASURES: The Psychological General Well-Being (PGWB) Index. Clinical examination of the stroke patients. The Barthel Index.

RESULTS: The spouses' psychological well-being was significantly lower in the first weeks after their partner's stroke as compared with norms. At four months, it had increased significantly. Between four months and one year, individual changes were observed in both positive and negative directions; thus, the mean level of the group remained constant. The spouses' psychological well-being in the first weeks was significantly related to the patients' sensorimotor impairments, while it was related at four months to cognitive impairment and the patients' abilities in self-care. At one year, psychological well-being was related to remaining sensorimotor and cognitive impairments. A significant relationship was also seen between the spouses' and the stroke patients' emotional health.

CONCLUSIONS: The spouses' psychological well-being increased after the first chaotic weeks. The presence of visible impairments initially seemed to affect spouses' emotional health, while cognitive and emotional impairments became more evident in everyday life. In the long term, however, the spouses' individual life situations and coping abilities seem to be of relatively increasing importance for their continued well-being.

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A study identifying the difficulties healthcare students have in their role as a healthcare student when they are also an informal carer

There is a growing body of literature concerning the needs of informal carers, however, there is little relating to the needs of carers who are also university students. There are a number of publications concerning the difficulties university studies may cause and in particular the stress that some healthcare students endures when they undertake clinical placements. Being an informal carer has the potential to aggravate any difficulties students may have in the normal course of their studies.

The purpose of the study was to explore the experiences and needs of healthcare students who are also informal carers. An electronic survey (February 2010) of 3567 students identified 36 students who are also informal carers. Most were female, pre-registration nursing students, studying full-time and who cared for their physically disabled children, chronically ill parents or terminally ill grandparents. Most respondents spent over 6 h a day on informal caring responsibilities. The majority said informal caring had a negative impact on their studies.

An in-depth interview study was undertaken (April 2010) with ten students. Data themes identified in the analysis were; descriptions of being an informal carer, impact of caring on studying, sources of support and hidden lives. In the theme ‘hidden lives’ students highlighted that they did not want university staff to know that they were informal carers as they did not want ‘special’ treatment. It was theorised that this could be due to the stigmatisation sometimes attached to being a carer. The value of the study was that it was found that more targeted information about student support services is needed, to help students successfully complete their studies. This would be beneficial for universities too as students who leave early without successfully completing their programme have financial implications.

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Respite in palliative care: a review and discussion of the literature

Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term ’respitefland its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.

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Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.

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Thematic inspection of health and social services for adults who require hospital inpatient treatment for physical ill-health in Wales

This thematic inspection was carried out jointly by SSIW and the former CHI between January and June 2004. Its main purpose was to better understand the experiences of patients with social care needs who are admitted to hospitals with physical ill-health in Wales and to examine the effectiveness of health and social care services in meeting those needs. Evidence of patients' and family carers' experiences was elicited from an all-Wales questionnaire completed by over 200 respondents and from interviews with 36 patients or their family carers from three different parts of Wales. Evidence of the effectiveness of the services was elicited from an all-Wales self assessment questionnaire completed by most local authority social services, local health boards and NHS Trusts and from fieldwork in three geographical regions: north-east Wales, Ceredigion and mid-Wales and Pontypridd and Rhondda.

How does a cancer education program impact on people with cancer and their family and friends?

Background. In this article, we report on the effects of patient education for people with cancer in comparison to family and friends. Methods. Data are from 666 participants with cancer and 324 family and friends who completed preprogram and postprogram questionnaires. Results. Results show high levels of participant satisfaction and positive changes in measures such as illness perceptions and emotional functioning. In many cases, the pattern of change was different for people with cancer compared to family and friends. Conclusions. This education program may be useful for helping people with cancer cope with the disease, with some distinct benefits for family and friends.

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Listening for the communicative signals of humor, narratives, and self-disclosure in the family caregiver interview

During interviews and conversations in health care environments, respondents often convey information in a humorous fashion, self-disclosure something very personal, or  tell detailed stories containing emotional content that is difficult to decipher and interpret. This article offers suggestions for achieving more productive and satisfying interviews with family caregivers who rely on humour to help them tell their stories.

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Stroke caregivers' strain prevalence and determinants in the first six months after stroke

PURPOSE: Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input.

METHOD: Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors.

RESULTS: Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time.

CONCLUSIONS: These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers.

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Life with two hats: part 3

Part 3 of a video on carers of people with dementia.The video highlights the different roles a carer plays (or different hats). They need to be compassionate when looking after the physical and mental health needs of the person they are caring for. They also need to be a warrier in order to battle to find out what services and benefits are available.

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'He stopped being my husband and became my carer'

Outlines ongoing research into the way care in mental health is constructed by professionals in law and policy, and the impact of those constructions for people who find themselves identified as 'carer' or 'cared for'. The research also looks at how people construct and experience care within their partnerships.

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Use of home telehealth in palliative cancer care: a case study

We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.

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Perceptions of the role of general practice and practical support measures for carers of stroke survivors: a qualitative study

Background: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.

The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective.

Methods: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed.

Results: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.

General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive.

Conclusions: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.

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The experiences of neighbour, volunteer and professional support-givers in supporting community dwelling older people

Public policy increasingly emphasises the importance of informal support networks to meet the needs of the ageing population. Evidence for the types of support neighbours provide to older people and how neighbours collaborate with formal support-givers is currently insufficient. Our study therefore explored (i) types of informal neighbour support and (ii) experiences of neighbours, volunteers and professionals providing support. Interviews with nine Dutch neighbour support-givers, five volunteers and 12 professionals were conducted and subjected to latent content analysis. Findings indicate that commitment occurred naturally among neighbours; along with providing instrumental and emotional support, neighbour support seems to be a matter of carefully ‘watching over each other’. Neighbour support-givers, however, are often frail themselves and become overburdened; they furthermore lack support from professionals. Neighbour, volunteer and professional support-givers seem to operate in distinct, non-collaborative spheres. Findings suggest that policy-makers should consider the opportunities and limitations of neighbour and volunteer support. Professionals have an indispensable role in providing back-up and accountable, specialised support. They may be trained to adopt a visible and proactive attitude in neighbourhoods to facilitate, cooperate with and mediate between neighbour and volunteer support-givers.

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Caregiver burden of terminally-ill adults in the home setting

A caregiver is an unpaid person, typically a family member or friend, who helps an ill person with the physical care and management of a disease. The task of care-giving results in additional responsibilities on the caregiver's daily life, and occupies the caregiver's time, energy, and attention, which is demanding and complex. The burden from care-giving, when prolonged, might affect the physical health of caregivers, causing symptoms, such as anxiety and depression, leading to a negative impact on their capacity for social engagement. This information sheet focuses on the best available evidence on factors that influence caregiver burden of the terminally-ill person, and provides some recommendations for practice. 

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People into Employment: supporting people with disabilities and carers into work

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

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Informal carers' experiences and needs when supporting patients through chemotherapy: a mixed method study

Informal carers provide important emotional support to patients having chemotherapy and assistance in monitoring and managing side-effects. If they are inadequately supported in this, patient and carer morbidity may result. This study explored needs of informal carers supporting patients with cancer having chemotherapy. The study used a mixed methods approach. Carers of colorectal or lymphoma cancer patients at one comprehensive cancer centre participated. Questionnaire data informed semi-structured interviews conducted with a subsample of respondents. Interviews were analysed using Framework analysis. Questionnaire data were analysed descriptively. Fifty-nine informal carers were invited to participate; 48 returned the questionnaire (response rate 81%) and 13 were interviewed. Informal carers' needs for information about chemotherapy and its side-effects were largely met although a third felt completely or somewhat unprepared to deal with particular symptoms experienced by patients at home. Many carers had unmet needs regarding financial support and their own needs as carers. Assertiveness was important to many caring roles, but it appeared difficult for informal carers to adopt when they were unsupported in this and their role was unrecognised by health professionals. Future research should develop interventions to systematically prepare carers for their carer role, improve carer involvement and ultimately improve patient outcomes.

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Stroke: an exploration of the experience of informal caregiving

OBJECTIVE: To explore the experience of caregiving in informal carers of stroke patients.

DESIGN: The research approach was qualitative. Data were collected one year after the stroke occurred using a semi-structured interview. The audio-taped interviews were transcribed and following this process were analysed thematically using constant comparative procedures.

SETTING: West of Scotland.

SUBJECTS: Twenty-two informal carers of stroke patients.

RESULTS: The results are presented under the headings: Preparation for discharge/feelings about discharge; The early weeks/months at home; A year of caring; and The future. The main themes identified within these broad areas were as follows: physical preparation; emotional support; the supply of information and advice; and the provision of appropriate services (both social and health service provision).

CONCLUSIONS: The data gathered in this small-scale study suggest that the physical and emotional toll associated with caregiving was great. Unfortunately, the help and support provided by the health and social services was often inadequate, inappropriate and poorly tailored to their individual needs. There was little evidence of a seamless flow of care between the secondary and primary care settings.

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Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review

The aim of this article is to provide an overview of the issues faced by caregivers of people diagnosed with cancer, with a particular emphasis on the physical, psychosocial, and economic impact of caring. A review of the literature identified cancer as one of the most common health conditions in receipt of informal caregiving, with the majority of caregivers reporting taking on the role of caring because of family responsibility and there being little choice or no one else to provide the care. For some, caregiving can extend for several years and become equivalent to a full-time job, with significant consequent health, psychosocial, and financial burdens. Having a better understanding of the critical and broad roles that caregivers play in the oncology setting and the impact of these on their health and well-being may assist health care professionals in supporting caregivers with these tasks and targeting services and interventions toward those most in need.

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Grandmothers and caregiving to grandchildren: continuity, change, and outcomes over 24 months

Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the effects of stability and change in grandmother caregiving roles (raising a grandchild, living in a multigenerational home, or not caregiving to grandchildren). Drawing on the Resiliency Model of Family Stress, the study examined caregiving stress and reward, intrafamily strain, social support, resourcefulness, depressive symptoms, mental and physical health, and perceived family functioning. Caregiver group, time of measurement, switching between caregiver groups, and baseline age, race, education, work status, and marital status were considered as independent variables within the context of a one-way treatment structure in a mixed-model multivariate analysis. Results: There were significant caregiver group effects for all variables, except mental health and resourcefulness. Grandmothers raising grandchildren reported the most stress, intrafamily strain, and perceived problems in family functioning, the worst physical health and more depressive symptoms, and the least reward and subjective support. Across groups, there were significant time effects, with worsening physical health and increased stress over time. Switching to higher levels of caregiving was associated with worsening physical health and increases in stress, intrafamily strain, and perceived problems in family functioning. Implications: Recommendations for research and for practice, especially during times of caregiving transition or for grandmothers raising grandchildren, are discussed.

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The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).; Main Results: Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05). Conclusions: Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.

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Abuse of vulnerable people with dementia by their carers: can we identify those most at risk?

Objective: We wanted to explore possible associations between characteristics of carers, dementia sufferers and the caring situation and the presence of abuse that was acknowledged by carers.

Methods: Eighty-two carers of dementia sufferers were interviewed in their homes about three types of abuse (verbal abuse, physical abuse and neglect) using a structured questionnaire.

Results: Fifty-two percent (n = 43) carers admitted to having carried out some form of abuse. Verbal abuse was the most common form (n = 42, 51%), while 20% (n = 16) of carers admitted to physical abuse and 4% (n = 3) to neglect abuse. Significant associations were found between verbal abuse and psychological ill health in the carer and behavioural problems in the dementia sufferer. Physical abuse was significantly associated with higher levels of self-reported good health by the carer. High expressed emotion measured in carers was highly correlated with all types of abuse.

Conclusion: It is possible to identify situations where people with dementia may be at high risk of abuse from their carers. Any effective intervention strategy should address psychological health problems in the carer, behavioural problems in the dementia sufferer and a strategy to manage high levels of expressed emotion in these situations.

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Exploring factors that influence informal caregiving in medication management for home hospice patients

Objective: To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients.

Methods: Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4 hospice programs in the Chicago metropolitan areas. Qualitative analysis was conducted consistent with the grounded theory approach.

Results: In general, informal caregivers and hospice providers identified similar key factors that facilitated or impeded caregivers' process in managing medications. Caregivers' life experience and self-confidence were considered assets that facilitated medication management. Limitations impeding the process included caregivers' negative emotional states, cognitive and physical impairments, low literacy, other competing responsibilities, as well as patients' negative emotional states and complex medication needs. Furthermore, the social context of medication management emerged as a salient theme: caregivers' good interpersonal relations with patients facilitated medication management, whereas poor communication/relations among caregivers within a support network impeded the process. While both study groups discussed the positive attributes of good caregiver–patient relations and support from multiple caregivers, hospice providers were cautious about the potential adverse influence of close relations with patients on caregivers' decision making about medications and discussed poor communication/relations among informal and privately hired caregivers that often resulted from family conflicts and/or a lack of long-standing leadership.

Conclusion: Our findings suggest additional intervention points, beyond knowledge and skill building, that could be addressed to support caregivers in executing medication responsibilities at home for hospice patients.

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Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Background  Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.

Method  Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited.

Results  Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported.

Conclusion  The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.

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Emotional over-involvement can be deleterious for caregivers' health: Mexican Americans caring for a relative with schizophrenia

The study of emotional over-involvement (EOI) has focused primarily on its relationship with patients' course of illness. The authors know little about the predictors and possible consequences of EOI for caregivers. Based on past research, they tested the hypotheses that EOI is associated with worse physical and psychological health among caregivers and examined whether caregiver burden and social support may mediate this relationship. In a sample of 37 Mexican American caregivers and their ill relatives recruited from two outpatient clinics, the authors examined the relationships between EOI, caregiver burden, caregivers' level of social support, and caregivers' health. Additionally, they examined whether caregiver burden and social support may mediate the relationship between EOI and caregivers' health. Cross-sectional analysis indicates that at baseline EOI was not associated with caregiver burden or social support, but was related to worse current health. Longitudinal analysis, however, indicates that EOI at baseline was associated with greater burden, less instrumental support, and worse health among caregivers at follow-up. Moreover, objective burden and instrumental support mediated the relationship between EOI and several health outcomes. Consequently, EOI may be a marker of poor current health status and predicts worse future health among Mexican–American caregiving relatives of individuals with schizophrenia. Moreover, changes in burden and social support associated with EOI appear to mediate the relationship between EOI and several health outcomes among caregivers. These findings suggest that it might be important for family interventions to not only address the functioning of individuals with schizophrenia but also their caregiving relatives.

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Chair massage for carers in an acute cancer hospital

The Chair Massage service considered in this evaluation study was provided to carers, visiting in-patients at a major cancer hospital in the UK. The two-stage evaluation comprised: firstly, a retrospective review of treatment records for the previous 12 months (Math Eq), and secondly, a prospective study, gathering data by interview and a ‘next-day’ questionnaire from carers (Math Eq), during 1 week of service delivery. The study at both stages sought to identify who used the service, post-treatment comments and changes in scores using a Feeling Good Thermometer (Field, T., 2000. Touch Therapy. Churchill Livingstone, London). During the second stage the carers were also asked about their concerns and worries, and to report changes in physical and emotional states using visual scales. Findings included significant improvements in physical and psychological scores; these were retained through to the next day. The next-day questionnaire also reported improved sleep for the majority of carers. A number of concerns and worries were raised at interview, notably anxieties about the patient and uncertainty about the future, family and financial worries. Overall, the service was well evaluated with parents and in particular female carers appearing to gain the most from the intervention.

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Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience. Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient. Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified. Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

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Burden of informal carers in northwest Ireland: A pilot study of factors that influence burden

Introduction Research has shown that approximately 67% of carers experience extreme mental tiredness, a decrease in their quality of life and a deterioration in their physical health since taking on a care-giving role. Aims and objectives This study aims to identify factors that influence carer burden and in doing so, identify the sub-populations of carers who are most susceptible to burden. Methods In northwest Ireland, 53 informal carers referred to the Carers Association, Sligo were contacted and met for a face-to-face interview. Measurements used included demographic data, the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index and Brown's Locus of Control Scale. Results Of the 53 carers, 43 were females and 10 males (age range: 32–81 years, mean age of 64.5 years). Of the corresponding 53 patients, 21 were females and 32 males (age range: 17–92 years, mean age of 72.1 years). Multiple linear regression analysis showed that sex of carer, marital status and the patient's behavioural problems were statistically significant independent factors, which influenced carer burden (p < 0.01). Female sex and greater patient behavioural problems increased susceptibility to burden and being married increased resilience towards burden. Conclusions: The ability to predict which carers are more susceptible to burden allows physicians to more quickly identify “higher risk” carers, facilitating routine check-ups by physicians and carer support services. Further research should explore why female and unmarried carers are more susceptible to burden and whether it is possible to tailor support services to their individual needs.

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Exploring the collective hospice caregiving experience

Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.

Objective: The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time.

Design: A mixed model analysis was used.

Setting/subjects: Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification.

Measurements: Measured were caregiver quality of life, social support, anxiety, and depression.

Results: Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety.

Conclusions: Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.

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Everyday experiences of parents with disabled children

The family is a space for learning that is in constant renewal and enrichment. However, when one of its members has a disability, the family plays a major role in the daily reconstruction of the intimate and social life of its members. And as ageing is inevitable, parents are constantly worried about who will take care of their children. Children become increasingly more dependent as parents face physical limitations in caring for their children. A qualitative descriptive exploratory study using a phenomenological approach was carried out to answer the initial question: “Do parents of adult children with disabilities experience specific needs?” Based on this methodology, data were collected through semi-structured interviews with five elderly parents caring for their disabled children and attending the CEFPI (Centre for Integrated Vocational Education and Training). Results indicate that these parents live for their children, which is inherent to a moderate level of care dependence for self-care functions such as personal hygiene, walking, dressing and undressing. They care for the children by themselves, and they feel alone in their role.

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The quality of life of carers of patients with severe lung disease

Severe lung disease is known to affect the lives of not only the sufferer but also his/her family. This qualitative phenomenological study identified seven patients with severe lung disease and studied the quality of life of their carers (five female, two male) who were not fully employed, living in the same house or nearby. In a semistructured interview, the carers were asked about looking after their spouse or relative, whether they had support and the effect of caring on their health and finances. The findings showed the carers' lives to be severely restricted, all carrying a heavy emotional burden of frustration, depression and isolation: part-time jobs were important both financially and to reduce isolation. Family support was vital to their coping, but few had received professional help. All were affected by reduction in income, but claiming allowances was confusing; unpredictability of the disease complicated much-needed recreation and holidays. Findings were similar to previously published data.

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Caregiver’s spirituality and its influence on maintaining the elderly and disabled in a home environment

This study examined the role that faith-based organizations play for caregivers in maintaining the elderly and disabled in their homes. The study explored if persons who use religious beliefs and practices cope with caregiver stress better than those who do not use religious beliefs and practices. The study also explored the role of religious coping as a factor affecting decisions to institutionalize, and the role that faith-based practices and organizations play in helping caregivers maintain the elderly and disabled in their homes.

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Dying well with dementia: qualitative examination of end-of-life care

Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.

Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.

Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.

Results: The data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.

Conclusions: The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

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General practice based psychosocial interventions for supporting carers of people with dementia or stroke: a systematic review

Background: Particularly with ageing populations, dementia and stroke and their resultant disability are worldwide concerns. Much of the support for people with these conditions comes from unpaid carers or caregivers. The carers' role is often challenging and carers themselves may need support. General practice is often the first point of contact for people with these conditions and their carers, making it potentially an important source of support. This systematic review therefore synthesised the available evidence for the impact of supportive interventions for carers provided in general practice. Methods: PRISMA guidelines were adopted and the following databases were searched: MEDLINE; EMBASE; the Cochrane Library; PsycINFO; CINAHL Plus; Applied Social Sciences Index and Abstracts and Healthcare Management Information Consortium. Results: Two thousand four hundred eighty nine results were identified. Four studies, involving 447 carers, fitted the inclusion criteria. Three of these came from the United States of America. None investigated supportive interventions for carers of people with stroke. Primarily by the provision of information and educational materials, the interventions focussed on improving carer mental health, dementia knowledge, caregiving competence and reducing burden, difficulties and frustrations. Overall the evidence suggests that these interventions may improve carer well-being and emotional health but the impact on physical health and social variables was less clear. However, the diversity of the carer outcomes and the measures used means that the findings must be viewed with caution. Conclusions: Unpaid carers pay an essential role in caring for people with stroke and dementia and the dearth of literature investigating the impact of supportive interventions for these carers of is surprising. The available evidence suggests that it may be possible to offer support for these carers in general practice but future research should consider focussing on the same outcome measures in order to allow comparisons across interventions.

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Aggression and trauma experiences among carer-relatives of people with psychosis

Background: Exposure to aggression and associated psychological outcomes are poorly characterised among carer-relatives of people with psychosis.

Method: Carer-relatives (N = 106) completed questionnaires assessing socio-demographics and perceived prevalence of aggression in their caring role in the last 12 months. Carers exposed to moderate–severe levels of aggression were re-approached to assess PTSD and coping strategies.

Results: Most respondents (77.4%) reported experiencing moderate–severe levels of aggression. Increased contact with (M = 15.12 vs. M = 6.71 days per month), and significantly higher ratings of affective, antisocial, negative and psychotic symptomology in affected relatives were associated with experiences of moderate–severe aggression. Approximately half of the moderate–severe respondents reported potentially significant levels of PTSD (52%, N = 34), which was associated with greater exposure to verbal aggression and increased usage of coping strategies.

Conclusions: Comparable ratios of physical to non-physical aggression to those reported by professional carers working in acute psychiatric treatment settings were reported. Carer-relatives require greater levels of information and support to assist them in their community caring roles.

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Research to support the Duty to Review the Implementation of the Mental Health (Wales) Measure 2010... part 2 final report: coordination of and care and treatment planning for secondary mental health users

This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 2 of the Mental Health (Wales) Measure 2010. This part of the Measure requires health boards and local authorities to work in a coordinated way to improve the effectiveness of mental health services. It also requires that care and treatment plans (CTPs) be provided for service users of all ages who have been assessed as requiring care and treatment within secondary mental health services. The report draws upon the focus groups and interviews conducted with service users, their carers and with mental health practitioners. The findings under each of the specific review questions are presented in turn, covering: whether CTPs address the eight areas of life (finance and money, accommodation, personal care and physical well-being, education and training, work and occupation, parenting or caring relationships, social, cultural or spiritual, medical and other forms of treatment including psychological interventions.

Original document (pdf) on the Welsh Government website.

Recognised, valued and supported: next steps for the carers strategy

This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer

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Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.

Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.

Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.

Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

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Cancer caregivers online - Hope, emotional roller coaster, and physical/emotional/psychological responses

The demands placed on cancer caregivers are well documented. Support for informal caregivers has been shown to increase hope and decrease psychosocial morbidity. The Internet is a readily available means of support for cancer caregivers, however little research on online support for informal caregivers of cancer patients exists. Descriptive statistics and qualitative analysis were used to evaluate messages posted over a 2-month period on an online cancer caregiver listserv. Three major themes emerged from the data: hope, emotional roller coaster, and physical/emotional/psychological responses. Supportive and hopeful statements prevailed among online participants in the current study. However, subjects also described the emotional roller coaster associated with caregiving. Emotional/physical/psychological responses included anger, weakness, exhaustion, grief, and sadness. Outcome research is needed to help evaluate the efficacy of online support for caregivers. Findings in this study can help nurses focus on some problems common to caregivers of cancer patients and plan appropriate interventions and research.

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Informal care, health and mortality

Informal care provision is an activity in which individuals are increasingly likely to become involved across their life course, and particularly in later life, as a result of demographic changes such as increasing longevity and changes in co-residential living arrangements in later life. Academic research so far has highlighted the adverse impact of informal care provision on the financial position of the carer, however, the evidence on the impact of informal care provision on the carer's physical, mental and emotional health, and on their mortality, presents a more complex picture. This paper reviews research from the UK and beyond on the provision of informal care and its subsequent impact on health and mortality outcomes. Two key findings emerge from this review paper. Firstly, the cross-sectional analysis of data shows mixed associations between informal care provision and poor health outcomes for the carer. Such research highlights the importance of the demographic and socio-economic characteristics of the carer and the person cared for, and of the specific characteristics and nature of the care provided (e.g. duration, level). Secondly, longitudinal analysis, which typically benefits from a longer timeframe to follow up the impact of caring, shows that although informal care provision is not per se associated with adverse health and mortality outcomes, nevertheless particular types and durations of caring have shown negative outcomes.

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The Impact of Immersive Outdoor Activities in Local Woodlands on Young Carers Emotional Literacy and Well-Being

Children’s well-being is linked to a complex web of factors including the child’s personality, inherent protective mechanisms, family relationships, social capital, and economic status. Young carers are particularly at risk from poor mental health outcomes and low well-being. In this study the impact of immersive activities in nature on the well-being of 8 young carers (3 girls and 5 boys; aged 9–13 years) was explored. The immersive woodland activities included practical skills such as fire making, cooking, and using tools as well as team building and activities to help build trust. A mixed method, pre-test/post-test approach was undertaken using Emotional Literacy Checklists and interviews, poems and discussion. There were measurable improvements—specifically in motivation and self-awareness—in the young carers’ emotional literacy as reported by the parents and teachers. The well-being indicators that were referenced most frequently by parents and teachers related to the children’s social relationships and their development as individuals. The children reported changes related to social, physical, and “natural connection” well-being.

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Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges: NG11

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

The guidelines stress the importance of carrying out thorough assessments to identify the multiple factors that are likely to contribute to any challenging behaviour. Any assessments should include assessment of the person, their environment and any biological predisposition, together with a functional assessment. Any intervention should be to improve the overall quality of the person's life. Key priorities for implementation cover general principles of care; support and interventions for family members or carers; early identification and assessment of behaviour that challenges; psychological and environmental interventions; and medication.

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Suppporting family caregivers: The hospital nurse's assessment of family caregiver needs: a smooth transition for the patient is the ultimate goal

This article is part one of a three-part series designed to help nurses help caregivers.

Families provide most of the care for older adults with chronic illnesses and disabilities. Estimates vary, but as many as 43.5 million Americans currently provide care for a person over 50. Because care giving for seriously and chronically ill people carries well-known physical, emotional, and financial risks, with consequences for the older adults as well as the caregiver, it's important to assess and address a family caregiver's needs, strengths, and limitations. Nurses have the training, skills, and opportunities to carry out these assessments.

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Social work and elder abuse: a Foucauldian analysis

The thesis pursued in this article is that an accelerating interest in elder abuse is central to understanding modern care policy as a social phenomenon. It will be argued that the 'discovery' of elder abuse legitimates practice in which the state monitors and co-ordinates but does not intervene. This has led to a social situation that has radically transformed social welfare of its traditional rationale as 'caregiver'. Simultaneously, informal care has become the centrepiece of social policy following the adoption of market forces to community care policies in the UK and elsewhere. One intended consequence of these policies has been to transfer the financial and emotional responsibilities for care to informal carers. The absence of a mechanism for formalising informal care is highly problematic. Such a social policy has found resolution through an emphasis on forms of abuse perpetrated by carers on older service users. This sudden concern for the safety and financial security of older people, who are service users, legitimates a role for welfare professionals within the bleak landscape constructed by community care policy. The price to be paid, however, is that the relationship between the state and older people has been reduced to one of surveillance and the enforcement of an oppressive notion of what community obligation might entail. As with other forms of tacit control, the surveillance role left to a residual local state evokes a 'surface' of reality as constructed as 'depth', whereby generic methods of surveillance are presented as 'concern' models. This act of observation confers a uniformity that emphasises the 'protective' role of the professional rather than the substantive requirements of older people at the centre of inspection.

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Don't let carers slip off the radar

The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.

The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time

This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The objectives of this article are twofold: (i) to present a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan.

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Elder abuse : a systematic review of risk factors in community-dwelling elders

Objective: to undertake a systematic literature review of risk factors for abuse in community-dwelling elders, as a first step towards exploring the clinical utility of a risk factor framework. Search strategy and selection criteria: a search was undertaken using the MEDLINE, CINAHL, EMBASE and PsycINFO databases for articles published in English up to March 2011, to identify original studies with statistically significant risk factors for abuse in community-dwelling elders. Studies concerning self-neglect and persons aged under 55 were excluded. Results: forty-nine studies met the inclusion criteria, with 13 risk factors being reproducible across a range of settings in high-quality studies. These concerned the elder person (cognitive impairment, behavioural problems, psychiatric illness or psychological problems, functional dependency, poor physical health or frailty, low income or wealth, trauma or past abuse and ethnicity), perpetrator (caregiver burden or stress, and psychiatric illness or psychological problems), relationship (family disharmony, poor or conflictual relationships) and environment (low social support and living with others except for financial abuse). Conclusions: current evidence supports the multifactorial aetiology of elder abuse involving risk factors within the elder person, perpetrator, relationship and environment.

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Dementia research – what do different public groups want? A survey by the Scottish Dementia Clinical Research Network

Scotland's National Dementia Strategy calls for people with dementia and their carers to give voice to what they see as the priorities for dementia research. We sent questionnaires on dementia research priorities, locus and type of research, desired outcome measures and willingness to volunteer, to two groups of dementia research stakeholders: (1) people with dementia and their carers who may or may not be participating in research and (2) those who are directly participating in research. We also made the questionnaire available on a national dementia research website. Five hundred and fourteen responses were received. The top four topics rated by importance were identical across all three groups of respondents: early detection (38.1%), drug trials (14.2%), studies on people living at home (9.7%) and study of carers (6.0%). The data can help shape the dementia research agenda, but more information needs to be made available to the public about other potential research areas.

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