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The following resources examine what happens to carers when the caring situation ends.

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).

Spousal bereavement after dementia caregiving: A turning point for immune health

Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers’ bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers’ trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers’ loss, particularly among those with more robust social networks prior to bereavement. 

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Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

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Early caregiving experiences and the impact on transition into adulthood and further life: a literature review

Internationally, there is a growing body of knowledge about young carers, but there is a lack of research about their experiences in later life and about how their caregiving responsibility influences their transition into adulthood and affects them in their future life. The aim of this literature review is to present the experiences of young adult carers in the phase of life in which many decisions are made for one's own life as an adult. In addition, the retrospective perspective of former caregivers will be described, too. Thirteen studies, published in English or German, were included after critical appraisal. Of these, six focused on the phase of transition and seven gave their attention to the retrospective. The analysis was performed explorative in line with the Grounded Theory Method. The findings of the literature review provide insights into the family situations at the time of caregiving and into the tasks of former young carers. They also impart the positive and negative effects. Former young carers assumed responsibilities they did not want to take over. They often took on the parental role. In retrospective, especially older female siblings felt that they had to change roles, often taking over the mother's role. In this role, they sometimes felt overwhelmed and left alone. Adult former carers feel mentally less healthy and insufficiently strengthened due to the long-term care or support they have given. But there are also positive effects pointed out by former young carers. Many of them are distinguished by outstanding social skills in adulthood. They feel well prepared for life through the care experiences and appreciate the practical skills they have learned. The results of this literature review show that the caring experiences influence the life of former young carers and determine their further life course.

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Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation

Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

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Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study

Context The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. Objectives The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers. Methods A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement. Results At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term. Conclusion For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

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Complicated Grief of Immediate Family Caregivers: A Concept Analysis

Grieving is a normal reaction to loss; however, not everyone is able to recover from grief and adjust to a life after the loss. "Complicated grief" (CG) is a term used to describe intense and prolonged bereavement after the loss of a loved one that interferes with normal activities accompanied by destructive thoughts and behaviors. In practice and research, the concept of CG varies in definition and instruments used to measure. This concept analysis examines relevant research related to CG experienced by caregivers to provide a clear, comprehensive definition. Implications for nursing practice and research are explored.

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Forgotten Family Caregivers

The purposes of this article is to discuss the topic of family caregiver recovery and inspire further development of the concept to promote greater awareness of the process of caregiver recovery in order to guide healthcare professionals to better serve family caregivers. 

The article offers information on the family caregivers who are individuals, such as family members, partners, friends, and neighbors, who take care of loved ones with functional, emotional, and/or cognitive limitations due to illness or injury. Topics include that family caregivers experience many of the same risks and challenges of caregiving that seem to extend into the transitional life phase of caregiver recovery such as family caregiving risks, compassion fatigue and relationships.

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Healing experience for family caregivers after an intensive care unit death

Objectives: Family caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU.; Methods: Semi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews.; Results: Seven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one's decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one's own.; Conclusion: By identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver's bereavement.

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Collaborative story production with bereaved family carers of people who died in advanced age

Purpose Is collaborative story production (CSP) a useful method to collaborate with bereaved families to record their reflections on the end of life circumstances and care of people of advanced age? The paper aims to discuss this issue. Design/methodology/approach Drawing from Te Pākeketanga, a bicultural study involving 58 bereaved Māori and non-Māori families on behalf of 52 older relatives, the authors describe the CSP method. Researchers and participants co-created personalised written stories about the older person and their end of life experiences, supported with photographs of family, friends and memorabilia. The authors aimed to uplift the status of the older person and their family by tangibly reflecting the significance and magnitude of what had been shared and to strengthen the research analysis.Findings CSP supported member checking, promoted a robust understanding of participants’ narratives and increased the trustworthiness of data and strengthened the Kaupapa Māori and social constructivist analysis. However, some participants experienced difficulty revisiting painful memories when reading their story. CSP took longer than anticipated, was labour intensive and required a highly skilled and resourced team to ensure participants benefitted. Originality/value Using the CSP method with a bicultural cohort of bereaved families who had provided care to someone over the age of 80 was very helpful in assisting the researchers to gather narrative information and present it back to participants in a story format for their comment and feedback. The method contributed a useful way to partner with bereaved family caregivers following the death of an older family member. The authors needed a way to record the participants’ narratives of the older person’s end of life circumstances and end of life care experiences. This was very important, particularly for grieving families and indigenous families who may have felt vulnerable engaging with research, and with the research processes. The approach provided a helpful and non-intrusive member-checking process. The unique bicultural study approach deliberately utilised the CSP method to assist the researchers to work safely with bereaved families as the participants reflected upon and explored not only the end of life circumstances of the older person, but they also focused on the “death” and their own bereavement experiences. CSP also provided a helpful member-checking method; the authors were working with highly sensitive information and wanted to ensure that the authors as researchers understood and interpreted the families’ narrative data correctly, according to their perspectives.

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Being a Former Carer: Impacts on Health and Well-Being

In the United Kingdom, policy has formalized the role of carers through the introduction of new rights and entitlements to support. However, this support is directed only at current carers with the needs of former carers being unacknowledged. Yet, when caregiving comes to an end, the transition to a life as a “former” carer can be challenging. This article reports findings from a small-scale qualitative study about the experiences of former carers conducted in the United Kingdom. Findings highlight the impact of caregiving on the health and well-being of former carers with feelings of loss and distress associated with the end of caregiving. The need for support in the post-caregiving phase emerges as a significant issue with former carers feeling abandoned, lacking purpose and motivation to move forward in their lives. Findings suggest that the needs of former carers are not being met. 

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Predictors of psychological distress and sleep quality in former family caregivers of people with dementia

Objectives: The stress-related psychological symptoms experienced by informal family caregivers do not always improve or resolve after the death of the care recipient. The purpose of this study was to explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality and psychological distress of former family caregivers of individuals with dementia following care recipient's death.; Method: A cross-sectional, correlational study was conducted with a sample of 171 former family caregivers of people with dementia. Participants completed an online survey comprised of six instruments and demographic items. Caregiver personal variables (e.g. personality and coping), environmental variables, guilt, psychological distress (depressive and anxiety symptoms), and sleep quality were evaluated using psychometrically validated measures.; Results: In bivariate analysis, post-caregiving guilt was significantly associated with depressive and anxiety symptoms (p < 0.01). After controlling for covariates, dysfunctional coping and neuroticism explained 32% of the variance in depressive symptoms (R2 = .52, ΔR2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R2 = .41, ΔR2 = .24, F(5, 165) = 22.65, p < .001), while dysfunctional coping, pre-loss depression, and extraversion accounted for 16% of the variance in sleep quality (R2 = .30, ΔR2 = .16, F(6, 164) = 11.44, p < .001).; Conclusion: This study demonstrates the critical role of personal variables, including personality traits, coping strategies, and pre-loss depression, in explaining psychological distress and sleep quality in this sample of former dementia caregivers.

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Role of family caregivers' self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement

Background: A substantial number of family caregivers go through bereavement because of cancer, but little is known about the bereaved caregivers' long-term adjustment. This study aimed to document levels of bereavement outcomes (prolonged grief symptoms, intense emotional reaction to the loss, depressive symptoms, and life satisfaction) among family cancer caregivers 3-5 years post-loss and to investigate how self-rated preparedness for the patient's death predicted those bereavement outcomes. Methods: Family members participated in a nationwide survey for cancer caregivers 2 years after the relative's diagnosis (T1). Of those, 109 were identified as bereaved by 5 years post-diagnosis (T2). Of those, 88 continued to participate at 8-year follow-up (T3) and provided valid data for the study variables. Caregivers' distress risk factors were measured at T1, satisfaction with palliative care and preparedness for the death of the patient at T2, and time since death of the patient at T2 or T3. Results: Substantial numbers of family members (18% to 48%) displayed heightened levels of bereavement-related psychological distress years after the loss. Hierarchical general linear modeling revealed that perceived preparedness for the death of the patient concurrently and prospectively predicted better adjustment to bereavement, independent of contributions of other factors studied. Conclusions: Findings underscore the high prevalence of long-lasting bereavement-related distress among family cancer caregivers and the role of preparedness for the relative's death in the level of that distress. Findings suggest that psychosocial programs among caregivers focus on not only caregiving skills per se but also preparedness for the death of the patient. 

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When Caregiving Ends: The Experiences of Former Family Caregivers of People With Dementia

Purpose of the Study: Numerous adverse physiological and psychological effects of family caregiving are documented in the literature. However, there is little knowledge about family caregivers after caregiving ends. The purpose of this study is to examine the health of former family caregivers and describe their experiences following the death of a care recipient with dementia. Methods: Eight former family caregivers were recruited using convenience sampling. Each caregiver participated in one semi-structured interview ranging from 45 minutes to 3 hours in length. The interviews were audio recorded and transcribed for qualitative content analysis. Results: Three overarching themes emerged from the data: (a) sleep disturbances, (b) changes in health status, and (c) learning to live again. Despite relief from caregiving duties, sleep disturbances in former family caregivers persisted for as long as 10 years post-caregiving. Caregivers reported changes in health such as acute health crises, ongoing illness, or a cascade of nonacute illnesses. Caregivers illustrated post-caregiving as a process of learning to live again, characterized by initial uncertainty about how to proceed in life and a reluctance to relinquish caregiving after years of identifying with the caregiver role. Implications: The results of this study suggest that there may be long-term effects of caregiving on health that persist well beyond the first year post-caregiving. Former caregivers would benefit from further research on the physical and psychological health of former caregivers after the first year of post-caregiving, the role of triggering events during post-caregiving, and interventions to meet the needs of former caregivers. 

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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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The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. Method: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. Results: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). Conclusions: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. 

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Life after caring: The post-caring experiences of former carers

This qualitative study was informed by grounded theory and data were gathered primarily through semi-structured in-depth interviews with thirty-seven theoretically sampled former carers. They were all white British, lived in the East Midlands and were predominately over sixty (68 per cent) and female (70 per cent). With the exception of one, all had cared for a close relative, 65 per cent having cared for a partner/spouse. Most of their dependants were older adults and each case the cessation of caring had coincided with the death of the dependant. The findings showed that post-caring life for the interviewees had an identifiable trajectory with three phases—the ‘post-caring void’, ‘closing down “the caring time”‘and ‘constructing life post-caring’. Each of these phases involved a distinct set of experiences. In addition, the study established that 70 per cent of those in the sample had cared more than once. Thus, two new concepts—'the post-caring trajectory' and the ‘serial carer’—were developed to reflect these findings. Suggestions are made about ways in which policy, practice and further research can be developed in order to ensure there is effective provision for those who have ceased caring.

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Group support during caring and post-caring: the role of carers groups

This article discusses the findings about the role of face-to-face carers groups which emerged from a qualitative, interpretive study of 37 former carers' experiences in the UK. The study was informed by grounded theory and semi-structured in-depth interviews were used as the main method of data collection. The advantages and disadvantages of carers groups during caring and post-caring that were identified are presented. These include the nature of the support they provided for their members, their limitations and ways in which they can be developed in order to meet the needs of carers and former carers. The concepts of social integration and social support are used to supplement the interviewees' explanations of the beneficial effects of carers groups. Following the discussions, suggestions are made about further research into increasing the effectiveness of carers groups' in meeting the needs of those who are caring and their previously unrecognized role in meeting post-caring needs.

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What's in a name? The implications of diagnosis for people with learning difficulties and their family carers

Diagnosis plays a significant role in the shaping of individual identities and the quality of life for people with learning difficulties and their family carers. Diagnostic labels are constitutive of peoples' lives, in that they bring forth pathology, create problemsaturated stories and construct careers as patients and cases. Disabled identities of people with learning difficulties remain largely ‘embodied’ and within the definitional control of professionals. Whilst the acquisition of a learning difficulty label can open doors to resources, it can also lead to disrespectful and dehumanising treatment, and the severe restriction of opportunities. This paper argues that a social constructionist perspective can offer a way of thinking about diagnosis that challenges the so called ‘facts' and ‘truths' that underpin and support it. Working in partnership with people with learning difficulties in relation to diagnosis requires professionals to relinquish power by resisting the ‘temptations of certainty’ associated with diagnostic practices.

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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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Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care

BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.

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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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Longitudinal changes in the amount of informal care among publicly paid home care recipients

Purpose: This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. Design and Methods: Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from elderly participants (N = 888) in Michigan's Home- and Community-Based Medicaid Waiver Program. Results: The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. Implications:Informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers.

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Choice in the context of informal care-giving

Extending choice and control for social care service users is a central feature of current English policies. However, these have comparatively little to say about choice in relation to the informal carers of relatives, friends or older people who are disabled or sick. To explore the realities of choice as experienced by carers, the present paper reviews research published in English since 1985 about three situations in which carers are likely to face choices: receiving social services; the entry of an older person to long-term care; and combining paid work and care. Thirteen electronic databases were searched, covering both the health and social care fields. Databases included: ASSIA; IBSS; Social Care Online; ISI Web of Knowledge; Medline; HMIC; Sociological Abstracts; INGENTA; ZETOC; and the National Research Register. The search strategy combined terms that: (1) identified individuals with care-giving responsibilities; (2) identified people receiving help and support; and (3) described the process of interest (e.g. choice, decision-making and self-determination). The search identified comparatively few relevant studies, and so was supplemented by the findings from another recent review of empirical research on carers’ choices about combining work and care. The research evidence suggests that carers’ choices are shaped by two sets of factors: one relates to the nature of the care-giving relationship; and the second consists of wider organisational factors. A number of reasons may explain the invisibility of choice for carers in current policy proposals for increasing choice. In particular, it is suggested that underpinning conceptual models of the relationship between carers and formal service providers shape the extent to which carers can be offered choice and control on similar terms to service users. In particular, the exercise of choice by carers is likely to be highly problematic if it involves relinquishing some unpaid care-giving activities.

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