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Relationships and care

The following resources examine the multiple relationships in caring including parents; children; siblings; intergenerational care; mutual support; non-kin care, and other caring dyads.

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).
 

Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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Longitudinal evaluation of the effects of illness perceptions and beliefs about cardiac rehabilitation on quality of life of patients with coronary artery disease and their caregivers

Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes). 

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The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method: The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings: One overarching theme arose: Dementia preserved and challenged the value of “us.” It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion: Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit – as an “us” – where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship). 

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Estranged relations: Coercion and care in narratives of supported decision-making in mental healthcare

Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare. 

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Intergenerational Relationships, Family Caregiving Policy, and COVID-19 in the United States

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.

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The Mental Well-Being of Informal Carers of Adults on the Autism Spectrum: a Systematic Review

Carers of autistic adults may experience increased day-to-day stress relating to their caring role. This review aims to (1) summarise the current literature on factors that affect mental well-being in carers of autistic adults and (2) map these results to an existing conceptual model of carer psychological well-being for individuals with developmental disabilities. Twenty-three studies met inclusion criteria. Some factors, such as adaptive skills and the quality of the caring relationship, were consistently associated with carer mental well-being. Conflicting or weak associations were found with several factors, including carer age and formal services received. These findings may be mapped to the King et al. (Journal of Pediatric Psychology, 24(1), 41–53, 1999) model, and adaptations to this model are discussed. 

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“I Know Who I Am; the Real Me, and That Will Come Back”: The Importance of Relational Practice in Improving Outcomes for Carers of People With Dementia

Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care. 

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Carer experience of end-of-life service provision: a social network analysis

Objective To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. Methods Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. Results Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. Conclusion The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care. 

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The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID. 

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Caring for older people: relational narratives of attentiveness, commitment and acceptance

Informal care evolves from an existing relationship with the care recipient. This study aims to understand the relational nature of such care. Six participants caring for a spouse or parent chose their own methods of data collection, including keeping a journal, telephone interviews or face-to-face interviews. Participants drew on personal narratives to reveal different identities, which included a guardian, a partner, a coper, and a campaigner on behalf of the person receiving care. These findings demonstrate how providing good care is part of each carer’s relational identity. Acknowledging the relational nature of care will enable better support for carers.

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Interpersonal relationship challenges among stroke survivors and family caregivers

A strong interpersonal relationship after stroke is important for the well-being of survivors and family caregivers. However, as many as 54% of families experience relationship problems after stroke and as many as 38% of couples experience overt conflict. The purpose of this study is to enhance understanding about relationship challenges among stroke dyads and to identify implications for direct practice in social work. Semi-structured interviews were conducted with N = 19 care dyads. Qualitative data were analyzed through an interpretive description lens. Seven themes about relationship challenges were identified. Findings highlight areas to consider in promoting strong relationships between survivors and family caregivers. Social workers may have the opportunity to assist dyads with disrupting negative communication cycles, strengthening empathy and collaboration, and achieving a balance so that each person's needs are met.

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Family Caregiver-Receiver Mutuality: A Concept Analysis

There are more than 43 million family caregivers in the United States. In studies of family caregivers and receivers, evidence suggests that family caregiver-receiver mutuality is linked to health. Lack of a clear definition of family caregiver-receiver mutuality is an obstacle that prevents scientific progress and effective operationalization of the concept. To address this issue, the authors applied Walker and Avant's method for concept analysis and clarified the concept of family caregiver-receiver mutuality. A standardized definition of caregiver-receiver mutuality is presented along with antecedents, consequences, defining attributes, empirical referents, and case illustrations.

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Factors associated with family functioning among people with a diagnosis of schizophrenia and primary family caregivers

Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.

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Coping with cognitive impairment and family caregiving: Introduction to the special section

Consistent with the long history within Psychology and Aging of publishing high impact articles on family caregiving, the current Special Section includes 5 articles that provide important advances, in knowledge and in methodological sophistication, to the study of cognitive difficulty, impairment and family caregiving. One study used daily diary data over 14 days to conduct microlongitudinal analyses of the prospective impact of everyday memory failures on negative affect and marital interactions in older couples. Also relying on dyadic data, 2 other articles addressed the impact of caregiving on family members, including a study of the effects of transitioning to family caregiving over time on well-being in older husbands and wives, and a comparison of primary and secondary caregivers. Together, these articles represent important methodological advances in terms of the use of longitudinal data to study the effects of transition to cognitive impairment and spousal caregiving within the couple, and the inclusion of multiple caregivers to illustrate the impacts of caregiving in the broader family. In addition, two articles examined issues in clinical intervention for caregivers. Both articles offer new insights about the effectiveness of caregiver interventions, with the former focusing on the relative merits of offering intervention components in a flexible way over the manualized approach, and the latter a comprehensive systematic review and meta-analysis to tease out the relative utility of different intervention characteristics and approaches, with a new lens to look at psychoeducational programs. The implications of these articles for family caregiving and further research advances are discussed. 

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Changes in Family Dynamics in Caregiving for People With Dementia in South Korea: A Qualitative Meta-Synthesis Study

Living with a person with dementia considerably affects the lives of both the primary caregiver and the entire family. This study aimed to synthesize the findings of qualitative studies that explored dementia caregivers' experiences, to further understand the impact of dementia caregiving on family dynamics. Thirty-seven qualitative studies were analyzed and synthesized according to the meta-synthesis methods suggested by Sandelowski and Barroso. Four themes were identified to describe the impact of dementia caregiving on the family: cracked foundation of the family caused by dementia, voluntary or involuntary setup of a marked boundary of care, family as supportive foreground versus reluctant or interfering background, and re-established relationships within and outside the family. The findings illuminate that dementia caregiving has a destructive impact on the entire family, and therefore, it is imperative to develop interventions and infrastructures for both the caregiver and the entire family of individuals with dementia. 

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The Care of "Small Things": Aging and Dignity in Rwanda

In Rwanda, disruptions to family and social life as a result of the 1994 genocide, and the economic transformations in its aftermath, have complicated the fabric of elder care across the country. In this article, I focus on how elderly Rwandans are reconfiguring their care networks - many of which were destroyed during the genocide - by acting as caregivers and care receivers for each other on a daily basis. Although emotionally and physically taxing, elderly Rwandans emphasize that the "small things" embedded in the giving and receiving of care are intricately connected to how personal and collective dignity is cultivated. 

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Buffer or Blade: Perceived relationship closeness in couples navigating Alzheimer's

Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an “ideal type,” these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families “where they are” in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as “stress” and “burden” and exacerbates the very real threat to social disenfranchisement. 

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"Everybody Takes Care of Everybody": Care Circulation and Care Relations in Three-Generation Cohabitation

Demographic changes in Western societies have enabled long-term relationships between more generations and have significantly affected the structure and dynamic of family lives and contemporary families. This article presents a case study of three-generation cohabitation, the situation in which three generations live together in the same place at the same time. Drawing on in-depth interviews with three generations—grandparents, parents, and adult grandchildren—the article illuminates the characteristics of intergenerational caregiving and care-receiving. It uses the concept of care circulation to explore the everyday repeated exchanges of care among all family members and the caregiving constellations, arrangements, and distributions across the generations. We argue that the care is not unidimensional and unidirectional; rather, the care circulates among the family members cohabiting in three-generation households who are at the same time both caregivers and care-receivers. 

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The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study

Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers. Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor-Partner Interdependence Model (APIM) framework. Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad. Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member's life satisfaction and well-being, while the partner's perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.

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Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers. Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the "tips" that survivors and family caregivers offered for dealing with relationship challenges after stroke. Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool. Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship. Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.

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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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Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India

A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients. Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti. Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship. Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients. 

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Relationship and communication characteristics associated with agreement between heart failure patients and their Carepartners on patient depressive symptoms

Objectives: Informal caregivers who recognize patients’ depressive symptoms can better support self-care and encourage patients to seek treatment. We examined patient-caregiver agreement among patients with heart failure (HF). Our objectives were to (1) identify distinct groups of HF patients and their out-of-home informal caregivers (CarePartners) based on their relationship and communication characteristics, and (2) compare how these groups agree on the patients’ depressive symptoms. Method: We used baseline data from a comparative effectiveness trial of a self-care support program for veterans with HF treated in outpatient clinics from 2009-2012. We used a cross-sectional design and latent class analysis (LCA) approach to identify distinct groups of patient-CarePartner dyads (n = 201) based on relationship and communication characteristics then evaluated agreement on patients’ depressive symptoms within these groups. Results: The LCA analysis identified four groups: Collaborative (n = 102 dyads, 51%), Avoidant (n = 33 dyads, 16%), Distant (n = 35 dyads, 17%), and Antagonistic (n = 31 dyads, 15%). Dyadic agreement on the patients’ depressive symptoms was highest in the Distant (Kappa (κ) = 0.44, r = 0.39) and Collaborative groups (κ = 0.19, r = 0.32), and relatively poor in the Avoidant (κ = –0.20, r = 0.17) and Antagonistic (κ =–0.01, r = 0.004) groups. Patients in Avoidant (61%) and Antagonistic groups (74%) more frequently had depression based on self-report than patients in Collaborative (46%) and Distant (34%) groups. Conclusion: Caregiver relationships in HF tend to be either Collaborative, Avoidant, Distant, or Antagonistic. Patients’ depressive symptoms may negatively affect how they communicate with their caregivers. At the same time, improved patient-caregiver communication could enhance dyadic consensus about the patient’s depressive symptoms.

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Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: Secondary analysis of a cluster randomized trial

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care. Trial registration: NCT02244359. Date of registration: September 18, 2014. 

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Investigating the relationship between formal and informal care: An application using panel data for people living together

There is limited evidence on the relationship between formal and informal care using panel data in a U.K. setting and focused specifically on people living together (co-residents). Using all 18 waves of the British Household Panel Survey (1991-2009), we analyse the effect of informal care given by co-residents on the use of formal home care and health care services more generally. To account for endogeneity, we estimate models using random effects instrumental variable regression using the number of daughters as a source of exogenous variation. We find that a 10% increase in the monthly provision of informal care hours decreases the probability of using home help (formal home care) by 1.02 percentage points (p < .05), equivalent to a 15.62% relative reduction. This effect was larger for home help provided by the state (β = -.117) compared with non-state home help (β = -.044). These results provide evidence that significant increases in the supply of informal care would reduce the demand for home-help provision.

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Accuracy of Adult Children's Perceptions of Mothers' Caregiver Preferences

Background and Objectives Most older mothers have strong preferences regarding which offspring will serve as their future caregivers, and violation of these preferences has been found to have consequences for mothers' psychological well-being. However, no study has examined the accuracy of adult children's perceptions of their mothers' caregiver preferences. In this article, we compare mothers' stated preferences for particular caregivers with their adult children's perceptions of their mothers' preferences. Research Design and Methods Data were collected from 675 adult children and their mothers nested within 285 families as part of the Within-Family Differences Study. Results Only 44.6% of adult children accurately reported their mothers' preferences for particular offspring as caregivers. Consistent with our hypotheses, accuracy was higher when mothers and children shared values regarding filial piety, and lower when children were parents, had poor health, and lived further away. Surprisingly, primary caregivers were substantially less likely to accurately report mothers' caregiver preferences than were noncaregivers. This counterintuitive pattern can be explained by the finding that most mothers were cared for by children whom they did not prefer and may have therefore been reluctant to share their preferences with those caregivers. Discussion and Implications Given the negative psychological consequences for mothers whose caregiver preferences are violated, the high level of inaccuracy found among adult children has important implications when mothers face serious health events. These findings underscore the need for intervention efforts to encourage practitioners and clinicians to collect information directly from mothers regarding preferences for particular offspring as caregivers.

[Correction: In “Accuracy of Adult Children’s Perceptions of Mothers’ Caregiver Preferences,” DOI: 10.1093/geront/gny064, the sentence: “Seventy-five percent of the adult children for whom contact information was available agreed to participate, resulting in a final sample of 833 children nested within 277 families.” should read: “Seventy-five percent of the adult children for whom contact information was available agreed to participate, resulting in a final sample of 826 children nested within 360 families.”]

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

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

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Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients

Background: Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships.; Methods: A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI's (n = 19) and their family caregivers' (n = 15) experiences.; Results: Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal.; Conclusions: These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

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Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature

Background: Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia.; Methods: The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative.; Results: Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation.; Conclusions: Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.

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Informal care provision across multiple generations in China

With increasing life expectancy, changes in family structure and, most recently, the relaxation of the hitherto strict family planning policies, understanding how mid-life individuals support multiple generations, particularly their older parents and younger grandchildren, is of increasing research and policy significance in China. This paper analyses data from the 2011 China Health and Retirement Longitudinal Study (CHARLS) to examine the characteristics of Chinese mid-life individuals aged 45–64 who are potentially being ‘sandwiched’ between providing care to older parents/parents-in-law and/or younger grandchildren (under age 16). Binary logistic and multinomial regression models shed light on the factors associated with providing support to one generation or multiple generations. The results highlight that amongst the Chinese mid-life sandwich generation, 58 per cent only provide care to their young grandchildren, 23 per cent only provide care to their parents/parents-in-law, whilst 15 per cent are simultaneously supporting both generations. Rather than acting as competing demands upon the mid-lifers’ time, the multivariate analysis provides evidence that the provision of intergenerational care is complementary, with caring for grandchildren increasing the probability of also supporting one's parents/parents-in-law, and vice versa. However, an increase in the number of younger grandchildren has a negative impact on the care provided to older parents/parents-in-law, indicating that at higher care intensities there may be competing demands across the generations.

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Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis

Objectives: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring. Method: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants. Two independent researchers conducted the quality appraisal of studies. We synthesise data through meta-ethnography and developed a behavioural model to explain dyadic interaction. Results: Seventeen studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When people with dementia and their carers have dyadic-oriented goals, their behavioural responses may promote positive interaction. When only one partner has dyadic goals, context-related stress may affect the interaction, because of no perceived shared understanding of the situation. Conclusion: Our findings suggest that unequal power distribution within dyads, can cause significant stress, when coping strategies are impaired. We discussed implications for family carers, people with dementia, and health professionals deriving from greater understanding of dyadic dynamics to care.

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Perceived reliability of assistance among American older adults: a study of kin and non-kin help

As a neglected dimension of the quality of care, assessments of caregiver reliability by older adults receiving help contributes to the better understanding of unmet needs for assistance in everyday life. This study examines how the numbers and composition of helpers - both potential and actual - relate to older Americans' reports of the reliability of assistance. According to the 2008 US National Elder Mistreatment Study (<i>n</i> = 2,176), the potential network, proxied by marital status and household size, was not a significant predictor of unreliable care, nor was the actual number of caregivers. We distinguish four types of helping sources: kin-only; exclusively informal non-kin (eg friends, neighbours); exclusively formal (paid); and mixed type. There was a higher risk of unreliable care among respondents relying exclusively on informal non-kin assistance compared with exclusively kin help. Kin-only provided more reliable care than informal non-kin but were no more reliable than formal or mixed types.

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The availability of carers for older disabled people in Spain: demographic insights and policy implications

The growth of the older population with care needs, together with the decrease of the population traditionally providing such care, are the most frequently cited consequences of demographic change affecting long-term care policies. This study examines the changes in the availability of carers in Spain (1998-2018) using survey data. Results point to a decrease of potential carers in terms of intergenerational care, but also to an increase of potential carers among older people of the same generation.

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Personhood, identity and care in advanced old age by Paul Higgs and Chris Gilleard

How does society collectively envision what ‘old age’ looks like, and what does this vision mean for how we plan for, support and conceptualise care? This book explores the concepts and practices of care in relation to what Higgs and Gilleard describe as the social imaginary of the fourth age: a collective representation of later life composed of those elements most feared about ‘extreme’ older age, namely, physical and cognitive decline, infirmity, and, ultimately, failure. They begin by outlining how the social imaginary of the fourth age has emerged in contrast to that of a third age of ‘successful aging’, wherein an older individual is imagined to be able to exert autonomy, retain productivity and continue an active lifestyle.

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Caregiver burden and family functioning in different neurological diseases

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease and other dementia (AD), Parkinson’s Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations

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Family dynamics in young adult cancer caregiving: "It should be teamwork"

Purpose/objectives: Young adult cancer patients undergo stress at a time when their primary source of psychosocial support may be changing. Our goal was to provide insight into the expectations young adult patients and their family caregivers for types of psychosocial support.; Research Approach: Semi-structured interviews.; Participants: Fifteen patients, 9 caregivers recruited from an AYA clinic. Methodological Approach: Thematic content analysis using the constant comparison method.; Findings: Two themes were identified. First, families described coordinating support around strengths to determine who would take on caregiving roles/tasks. Second, families described the importance of patient-caregiver relationship status/history in determining trust and expectations.; Interpretation: Family strengths and existing relationships can impact caregiving roles and expectations for families of young adult cancer patients. Implications for Psychosocial Providers: Cancer clinics may need to involve members of the psychosocial provider team to better understand the family dynamics of their patients and how these relate to support.

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Using photo-elicitation to explore the lived experience of informal caregivers of individuals living with dementia

Objectives: This study aims to explore the subjective lived experience of informal caregivers supporting an individual with dementia.; Design: This study uses the interpretive phenomenological approach utilizing the method of photo-elicitation and in-depth semi-structured interviews.; Methods: Six individuals were given a disposable camera to capture photographs which they felt illustrated their own lived experiences of being a caregiver of an individual living with dementia. Photographs were printed and used to form discussion within an in-depth semi-structured interview. The photographs provided an innovative way of capturing the lived experiences of formal dementia caregivers and allowed the interview data to be grounded in their daily living, centring around their own lived experiences.; Results: Three themes emerged from data analysis: 'conceptualising the role of informal caregiver', 'support for the informal caregiver', and 'the caregivers own needs'.; Conclusions: Findings demonstrated the complexity of the relationship between the caregiver and the person living with dementia, and the shift in this relationship specifically due to the role of carer, with notable differences between spousal caregivers and adult-child caregivers. The importance of social, emotional, and practical support for caregivers was highlighted, as well as significance of the caregiver's individual needs. Statement of contribution What is already known on this subject? Informal caregivers of individuals living with dementia cover much of the associated health care costs. Informal caregiving of individuals living with dementia can lead to negative health outcomes of the carer. Health outcomes of informal caregivers living with dementia are grounded in culture and are influenced by multiple factors. What does this study add? The complexity of the transition from family member to informal caregiver has both a physical and emotional impact on caregivers. The transition, and experiences of informal caregiving, is dependent on the relationship to the individual living with dementia. Caregiver support and recognizing the caregiver's individual needs were imperative to caregiver well-being.

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Intergenerational Ambivalence and Dyadic Strain: Understanding Stress in Family Care Partners of Older Adults

Objectives: The present study used Pearlin, Mullan, Semple & Skaff's (1990) caregiving stress process model as a framework to examine the comparative influence of two stressors: (a) intergenerational ambivalence as a unified construct and (b) dyadic strain, which is one isolated component of intergenerational ambivalence. Methods: Participants were 120 women providing healthcare and medication assistance to an earlier generation family member with physical and/or cognitive impairments. Results: Hierarchical regression confirmed that intergenerational ambivalence explained perceived stress in family care partners, beyond the variance accounted for by other commonly reported stressors such as length of caregiving experience, memory/cognitive and functional impairments of the care recipient, caregiver overload, family conflict and financial strain. Further analyses revealed that examining dyadic strain apart from intergenerational ambivalence may more accurately explain the influence of ambivalence scores on care partners' perceived stress. Conclusions and Clinical Implications: The comparative influence of dyadic strain versus ambivalence suggests that stress-reducing interventions may benefit from a focus on reducing care partners' experiences of negative strain in the dyadic relationship rather than managing ambivalence.

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Male partners' experiences of caregiving for women with cervical cancer—a qualitative study

Aims and objectives: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. Background: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. Design: The study employs a qualitative design with semi‐structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. Findings: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. Conclusions: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. Relevance to practice: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient–clinician relationships, including information about human papillomavirus. 

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Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.

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Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong

The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.

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Relational aspects of mastery for frail, older adults: The role of informal caregivers in the care process

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community-dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D-SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care-giving (competence), and care-receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person-centred and integrated care.

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Experience of companionship among family caregivers of persons with dementia: A qualitative study

We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39–92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources. The caregivers described their companionship with the family member, including warm feelings of reciprocity, as well as contradictory feelings, such as feelings of being burdened. They expressed a desire to continue caring for their relative and emphasized the positive aspects of their relationship. Knowledge about dementia, together with a good relationship with their ill family member, facilitated the caring role. These results highlight the importance of receiving information about dementia-related challenges and the implications of being a caregiver.

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Relationship continuity and person-centred care: An exploratory mixed-methods investigation of spousal partners’ responses to the challenging care needs of those with acquired brain injury

Some partners of people with an acquired brain injury experience the person with the injury and their relationship as continuous with the pre-injury person and relationship, but others experience the person and relationship as very different to what went before. Previous qualitative research has suggested that the experience of continuity may promote a more person-centred approach to how partners respond to challenging care needs. Given the value of triangulating evidence, this exploratory study used a mixed-methods design to investigate this suggestion. Twenty-six partners of people with an acquired brain injury completed the Birmingham Relationship Continuity Measure and a semi-structured interview about their response to challenging care needs. Interviews were coded and scored to provide a measure of the extent to which the participants’ understanding, management and emotional responses showed a person-centred approach. The findings supported the hypothesis. Greater continuity was significantly correlated with a more person-centred approach. Associating relationship continuity and person-centred care is a novel approach to the issue of how family relationships may impact on care quality. Person-centred care can have important benefits for both the giver and receiver of care. Whether it can be promoted through fostering a sense of continuity in the relationship merits further investigation. 

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Relationship quality and sense of coherence in dementia: Results of a European cohort study

Objective: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. Methods: Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). Results: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. Conclusions: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes. 

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Family cohesion, burden, and health-related quality of life among Parkinson's disease caregivers in Mexico

Background: Informal caregivers of individuals with Parkinson's disease face a range of responsibilities that increase as the disease progresses. As a result of these stressors, caregivers are vulnerable to decreased health-related quality of life (HRQOL). Guided by the stress process model of caregiving, the present study examined the relations between family cohesion, perceived burden, and mental and physical HRQOL among Parkinson's disease caregivers in Mexico. It was hypothesized that perceived burden would mediate the relations of family cohesion and mental and physical HRQOL.; Methods: Ninety-five family caregivers of individuals with Parkinson's disease in Mexico City, Mexico, participated in the study. Multiple regression was utilized to conduct mediation analyses.; Results: Results indicated that burden fully mediated the relation between family cohesion and mental HRQOL, and family cohesion was not associated with physical HRQOL.; Conclusions: Findings extend the stress process model cross-culturally and lend support for the importance of family cohesion and perceived burden in determining caregiver mental HRQOL. Clinical health promotion interventions should target perceived burden and family cohesion together to improve mental HRQOL among familial caregivers in Mexico.

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Family assessment of elderly patients with liver disease

Objective: to analyze the structure, development and operation of families of elderly patients with liver disease. Method: this is a qualitative-field study, which used the Calgary Family Assessment Model. The study had as its backdrop of research a philanthropic hospital. The study population consisted of five families of elderly hospitalized patients with liver disease. Results: from the five females families evaluated, two were characterized as extensive, one rebuilt, one was composed of brothers without ties of consanguinity and only one as the nuclear family. It was also possible to verify that the relatives presented themselves as the main caregiver, and that all families presented the monthly average of two minimum wages. Conclusion: taking into consideration that the family participation in the process of illness presents itself as a determinant factor for the satisfactory prognosis of patients, the role of nursing before the evaluation and intervention in the family context will contribute significantly to improved health status and wellbeing of patients and their families.

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"Neither a wife nor a widow": an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.

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Mediators of burden and depression in dementia family caregivers: Kinship differences

Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated.; Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children).; Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers.; Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.

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Family Caregiving and the Intergenerational Transmission of Poverty

The United States relies on uncompensated family caregivers to provide most of the long-term care required by older adults as they age. But such care comes at a significant financial cost to these caregivers in the form of lower lifetime earnings and diminished (or even no) Social Security retirement benefits, ineligibility for Medicare coverage of their healthcare costs, and minimal retirement savings. To reduce the impact of uncompensated caregiving on the intergenerational transmission of poverty, this paper discusses three possible mechanisms of compensating family caregivers: public payments, deemed wage credits under Social Security, and income tax incentives.

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Correlating the Physical Activity Patterns of People with Moderate to Severe Multiple Sclerosis Disability and Their Family Caregivers

Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis. Results: PwMS and caregivers averaged 4,091.3 (SD 2,726.3) and 6,160.2 (SD 1,653.0) steps per day, respectively. The mean number of minutes per day of sedentary, light, and moderate to vigorous activity for PwMS was 566.3 (SD 97.7), 167.4 (SD 94.0), and 7.6 (SD 12.4), respectively, and 551.9 (SD 92.4), 199.6 (SD 63.4), and 21.4 (SD 18.2), respectively, for caregivers. Interdependence between dyads for sedentary, light, moderate to vigorous activity, and step count was low and non-significant (rs=0.20, 0.26, 0.13, and –0.27, respectively; p>0.05). Conclusions: Although our findings do not support the interdependence of PA between caregivers and care recipients with MS, they do show that both partners are not engaging in sufficient PA to achieve important health benefits. These findings are important because they indicate that the dyads are likely to benefit from interventions for changing PA behavior.

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Health Behavior Among Men With Multiple Family Roles: The Moderating Effects of Perceived Partner Relationship Quality

Men in the United States are increasingly involved in their children's lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years and older. Yet much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects of perceived partner relationship quality, conceptualized here as partner support and strain, on direct family role-health behavior linkages were also examined. A secondary analysis of survey data from 366 cohabiting and married men in the Work, Family and Health Study indicated that men's multiple family role occupancies were generally not associated with health behavior. With men continuing to take on more family responsibilities, as well as the serious health consequences of unhealthy behavior, the implications of these null effects are encouraging - additional family roles can be integrated into cohabiting and married men's role repertoires with minimal health behavior risks. Moderation analysis revealed, however, that men's perceived partner relationship quality constituted a significant factor in determining whether multiple family role occupancies had positive or negative consequences for sleep duration, alcohol consumption, and fast food consumption. These findings are discussed in terms of their empirical and practical implications for partnered men and their families.;

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Psychometric characteristics of the mutuality scale in heart failure patients and caregivers

Background Higher patient-caregiver mutuality is associated with improved patient and caregiver outcomes, but no studies have tested the psychometric characteristics of the mutuality scale (MS) in heart failure (HF) patient and caregiver population. Objectives To test the validity and reliability of the MS. Methods A cross-sectional design. The MS validity and reliability were tested with confirmatory factor analysis (CFA) and hypothesis testing, and with Cronbach's alpha and model-based internal consistency index, respectively. Results CFA supported the validity of the MS in the HF patient and caregiver versions. Hypothesis testing showed significant correlations between both versions of the MS and anxiety, depression, quality of life, and self-care. Also, MS caregiver version scores correlated significantly with caregiver preparedness. Cronbach's alphas and the model-based internal consistency index ranged between 0.72 and 0.94 in both versions. Conclusions The Mutuality Scale showed supportive validity and reliability for HF patients and caregivers.

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Ambivalence, families and care

Although research shows that most parents and adult children report generally positive and supportive ties, there is also evidence that negative interactions and emotions are common in intergenerational relationships. To investigate this complexity, researchers have moved beyond simple models to orientations and approaches that recognise contradictory emotions and attitudes regarding family relationships in later life. These efforts have given rise to what has come to be termed the 'intergenerational ambivalence' perspective. In this article, we explore the applicability of this perspective to the issue of family caring. We begin by reviewing recent developments in the intergenerational ambivalence perspective. We then discuss a paradox: although caring appears to be a situation particularly prone to conflicting emotions, little research has focused specifically on ambivalence among carers. We present results from our work that shed light on the measurement of carer ambivalence, as well as substantive findings regarding sources of ambivalence for carers.

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Sharing lives: Adult children and parents by Marc Szydlik (2016)

No relationships last longer than connections between parents and children, particularly in the era of ever-growing life expectancy. Low fertility and the small number of siblings mean that modern families include fewer members of the same generation and more of a previous one, recasting the balance of exchange between parents, children and grandchildren in terms of space, money and time/care. This book presents and discusses the key findings of the Survey of Health, Ageing and Retirement in Europe (SHARE), focusing on intergenerational relations.

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Exploring intergenerational, intra-generational and transnational patterns of family caring in minority ethnic communities: the example of England and Wales

We investigated family caring using established questions from national surveys of 1,206 adults aged 40+ from six minority ethnic communities in England and Wales. We included in our analysis factors that predisposed caring (age, sex, marital status and household composition) and enabled caring (health, material resources, education, employment and cultural values). In the general population, 15% of adults are family carers. Three groups reported lower levels of caring (Black African [12%], Chinese [11%] and Black Caribbean [9%]) and three reported higher levels of caring (Indian [23%], Pakistani [17%] and Bangladeshi [18%]). However, ethnicity predicted caring independent of other factors only for the Indian group.

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The meaning of care: The social construction of care for elderly people by Bernard Weicht

Weicht’s latest book represents a profound reflection on informal care for elderly people from a social-constructivist perspective – a reflection that also provides a thorough account of gendered practices, power relations and contextual constraints in how care norms, practices and relationships are discursively constructed. 

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Home Alone Revisited: Family Caregivers Providing Complex Care

The AARP Home Alone study in 2012 was the first national look at how families, neighbors, and friends are managing medical/nursing tasks—that is, the complex care associated with administering multiple medications, changing dressings, handling medical equipment, and providing many other kinds of help that were formerly offered by trained professionals.  (See www.aarp.org/homealone.) Seven years later, this Home Alone Revisited study sought a deeper understanding of what family caregivers who perform medical/nursing tasks experience. Employing an oversampling of multicultural groups, it took a closer look at specific difficult tasks, such as managing incontinence, pain, and special diets. It also offered greater attention to resources and outcomes as well as multicultural, gender, and generational experiences. A nationally representative, population-based, online survey of 2,089 family caregivers provided the basis for our analyses. An organizing framework, qualitative findings, and multivariate analyses provided further insights into the stories these family caregivers told us. Their voices led to our recommendations, found in these pages, for professionals, health care organizations, policy makers, and private-sector stakeholders.

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Intergenerational Caregivers of Parents With End-Stage Heart Failure

Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility , and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

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The Relationship Between Mutuality and Health-Related Quality of Life in Adult Child Caregivers in China

The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR 2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers' HRQoL, this was the first study exploring the impact of caregiver-care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.

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Structural relationship between emotional and social support for young adult carers towards intergenerational care of the multi-ethnic elderly

Purpose The purpose of this paper is to examine the structural relationship between the emotional and social support provided for individuals with caring responsibilities for elderly relatives, and the quality of care actually delivered. In addition, the moderating role of gender is explored. Design/methodology/approach A quantitative research design was utilised in which 200 usable questionnaires were collected from 250 respondents comprised of young adults who adopt a caregiving roles in respect of elderly parents or other close elderly relatives. The structural equation modelling (SEM) technique was selected for data analysis, and the Analysis of moment structure software version 21 was used. Findings The SEM results revealed that emotional support for caregivers was the most important predictor affecting the intergenerational care of multi-ethnic elderly people. Additionally, a moderation analysis revealed that the relative influence in this connection was more pronounced among female caregivers. An increase in the emotional support received by the recipient was found to enhance the level of the relationship, and to result in closer intergenerational ties in the care of the multi-ethnic elderly. Furthermore, the receipt of social support positively influences the judgement of an individual, and expands that person's social network, which can subsequently have a favourable impact on the way in which one fulfils their caring role. The significant effect of social support provided for intergenerational caregivers in the context of the multi-ethnic elderly was higher in the group of male caregivers than in the group of female caregivers. Practical implications This study sends a strong message to policy-makers in developing countries about the need to consider within their National Policy for the Elderly, improvements in the national action plan for a holistic and integrated approach to ensure the well-being of caregivers and the elderly. Originality/value The results of the study help young adults to understand the importance of emotional and social support in boosting their relationships with parents and families and motivating intergenerational efforts in the care of the multi-ethnic elderly. Harmony within families is an important ideal in any circumstance, but in the scenario of ageing family members it may be even more essential to try to achieve it.

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Quality of family relationships and outcomes of dementia: A systematic review

Objectives To evaluate the association between the quality of relationship between a person with dementia and their family carer and outcomes for the person with dementia. Design Systematic review. Eligibility criteria Cohort studies of people with clinically diagnosed dementia and their main carers. Exposures of interest were any elements of relationship quality, for example, attachment style, expressed emotion and coping style. Our primary outcome was institutionalisation, and secondary outcomes were hospitalisation, death, quality of life and behavioural and psychiatric symptoms of dementia ('challenging behaviour'). Data sources MEDLINE, Embase, Web of Science, PsycInfo, the Cochrane Library and Opengrey were searched from inception to May 2017. Study appraisal and synthesis methods The Newcastle-Ottawa Scale was used to assess risk of bias. A narrative synthesis of results was performed due to differences between studies. Results Twenty studies were included. None of the studies controlled for all prespecified confounding factors (age, gender, socioeconomic status and severity of dementia). Reporting of results was inadequate with many studies simply reporting whether associations were statistically significant' without providing effect size estimates or CIs. There was a suggestion of an association between relationship factors and global challenging behaviour. All studies evaluating global challenging behaviour provided statistical evidence of an association (most P values below 0.02). There was no consistent evidence for an association for any other outcome assessed. Conclusions There is currently no strong or consistent evidence on the effects of relationship factors on institutionalisation, hospitalisation, death or quality of life for people with dementia. There was a suggestion of an association between relationship factors and challenging behaviour, although the evidence for this was weak. To improve our ability to support those with dementia and their families, further robust studies are needed. PROSPERO registration number CRD42015020518. 

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Depression in Family Caregivers of Mexican Descent: Exacerbated by Stress and Mitigated by Mutuality

Despite common assumptions that non-paid family caregivers of Mexican descent benefit spiritually from their roles according to cultural familistic norms, there is also evidence of caregiver stress resulting in depression. Depression has the potential to seriously affect caregivers' health and their ability to continue to provide care. The current study's purpose was to examine the relationships among depression, stress, and mutuality (i.e., the quality of the caregiver-care recipient relationship) ( N = 74 caregivers of Mexican descent in the southwestern United States). Multiple regression models and exploratory mediational analyses indicated that the stress-depression relationship can be significantly mediated by mutuality. Results support culturally appropriate interventions to decrease caregiver stress and depression by promoting mutuality. In addition, with changing trends in outside work roles and mobility of caregivers of Mexican descent, policy should make services truly accessible to support caregiving families of Mexican descent.

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It’s all about the relationship: cognitively intact mother–daughter care dyads in hospice at home

Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice. Design and Methods: Semi-structured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother–adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyse dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor. Results: A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems. Implications: This work suggests deeper exploration of mother–daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.

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Relationship continuity and emotional well-being in spouses of people with dementia

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.

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Intergenerational flows of support between parents and adult children in Britain

Understanding patterns of intergenerational support is critical within the context of demographic change, such as changing family structures and population ageing. Existing research has focused on intergenerational support at a given time in the individuals' lifecourse, e.g. from adult children towards older parents and vice versa; however, few studies have focused on the dynamic nature of such support. Analysing data from the 1958 National Child Development Study, this paper investigates the extent to which the receipt of parental help earlier in the lifecourse affects the chances of adult children reciprocating with support towards their parents later in life. The findings show that three-quarters of mid-life adults had received some support from their parents earlier in life, and at age 50 more than half were providing care to their parents. Patterns of support received and provided across the lifecourse differ markedly by gender, with sons being more likely to have received help with finances earlier in the lifecourse, and daughters with child care. The results highlight that care provision towards parents was associated with support receipt earlier in life. However, the degree of reciprocity varies according to the type of care provided by children. Such findings have implications for informal care provision by adult children towards future cohorts of older people, and by extension, the organisation of social care.

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Episodic memories of relationship quality, procedural knowledge of attachment scripts, and the experience of daughters caring for a parent with dementia

A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behaviour they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. The authors findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.

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Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers

Background Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions. Methods A qualitative, descriptive, and explorative design were employed to address the aims of this study. We interviewed nine relatives of people with FTD and similar conditions living in nursing homes, and two relatives of people living at home but attending day center 5 days a week. Results Relatives described the transition from being a close relative to someone who had little influence or knowledge of what constituted the care and the daily life of their loved ones. According to relatives’ descriptions, patients are deprived of dignity in various ways: through limited interaction with peers and close relatives, limited confirmation of identity through staff who know them well, lack of possibilities for making autonomous decisions or entertaining meaningful roles or activities. Examples provided from the day care centres show how dignity is maintained through identity-strengthening activities conducted in different places, under various kinds of supervision and care, and together with people representing different roles and functions. Conclusions Maintaining a link with the world outside the institution, through closer cooperation between the institution and family members, and/or by the use of day care centres, seems to facilitate prevention of many of the factors that may threaten dignified care.

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‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities

Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.

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It's Interpersonal: Family Relationships, Genetic Risk, and Caregiving

My research program considers family relationships across the life course: in early life, with a focus on disease prevention -- leveraging genetic risk information and relationships to motivate health-promoting behaviors -- and in later life, with a focus on informal caregiving -- identifying characteristics of those most vulnerable to, or resilient from, caregiver stress. It is fortuitous, if not tragic, then, that my research and personal worlds collided during my mother's final 8 months of life. Here, I discuss how this experience has shifted my thinking within both arms of my research program. First, I consider the state of the science in family health history, arguing that the current approach which focuses on an individual's first- and second-degree relatives does not take us far enough into the relational landscape to activate communal coping with disease risk. Second, I discuss caregiving from a family systems perspective. My family's experience confirmed the importance of using a systems approach and highlighted a need to identify underlying variability in members' expectations of caregiving roles. In so doing, I capture the significance of understanding the multiple perspectives that frame a context in which families adapt and cope with risk and disease diagnoses.

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Social consequences of family care of adults: a scoping review

The power of social connections is a contemporary focus of research across world regions. Yet, evidence of challenges to carers' social relationships remains fragmented and underexplored. The authors conducted a scoping review of 66 articles to create a state-of-knowledge review of the social consequences of caring. Findings indicate evidence of consequences for relationships with care receivers, with other family members and with broader social networks. Knowledge gaps include changes in relationships across time and in understanding diversity in the types and extent of consequences. Evidence challenges assumptions related to caregiving families and to the sustainability of family care.

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Reconciling Marriage and Care after Stroke

Most research on stroke's impact on couples has focused on the transition to caregiving/receiving. Despite considerable evidence that marriage is the primary source of support in the face of chronic conditions, little is known about what happens to marriage in the context of care after stroke. To address this gap, we undertook a qualitative grounded-theory study of 18 couples in which one partner had experienced a stroke. Findings revealed two interrelated themes of the couple processes: working out care, which involved discovering and addressing disruptions in day-to-day activities; and rethinking marriage, which involved determining the meaning of their relationship within the new context of care and disability. Three distinct types of marriages evolved from these processes: reconfirmed around their pre-stroke marriage; recalibrated around care; and a parallel relationship, "his" and "her" marriage. Our findings highlight the need to consider relationship dynamics in addition to knowledge about stroke and care.

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"Shared Destiny": The Dynamics of Relationships in Families of Patients With Brain Injury

This qualitative research focused on the relationships between family members of patients with acquired brain injury (ABI). The aim was to explore the dynamics between caregivers of the family member with a brain injury during rehabilitation hospitalization, and the relationships between them and the rest of the extended family. Twenty semistructured interviews were conducted with family members. In each family, the spouse of the patient and another family member involved in caregiving were interviewed. The importance of the relationships between family members during rehabilitation hospitalization justifies the examination undertaken in this research. Findings point at the change that took place in the relationships between family members because of the need to cope with a relative's injury. It is possible that direct intervention in the dynamics of the relationship, especially between the family of origin and the nuclear family of the injured person, can benefit extended families in coping with the crisis.

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Relationship continuity and person-centred care in how spouses make sense of challenging care needs

Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim. Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories.  Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions. Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

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Do attachment anxiety and hostility mediate the relationship between experiential avoidance and interpersonal problems in mental health carers?

Carers of people with mental illness frequently report interpersonal difficulties in their caring relationship, and experiential avoidance likely contributes to these problems. This study aimed to examine the relationship between experiential avoidance and eight interpersonal problem domains amongst lay mental health carers, and tested the mediating role of attachment anxiety and hostility. In addition, an alternative (reverse) mediation was tested in which experiential avoidance played the mediating role. A cross-sectional community-based sample of 145 mental health carers completed a questionnaire containing demographics and measures of interpersonal problems, experiential avoidance, attachment anxiety and hostility. Results indicated the relationship between experiential avoidance and interpersonal problems was fully mediated for the interpersonal problem domains of cold/distant and socially inhibited. Partial mediation was evident for the vindictive/self-centered, non-assertive, overly accommodating, self-sacrificing and intrusive/needy domains. No mediation occurred for the domineering/controlling domain. Alternative (reverse) model findings indicated partial/full mediation for the overly accommodating, domineering/controlling and vindictive/self-centered domains, and no mediation for the remaining five domains. Although tentative, findings suggest a mechanism for the relationship between experiential avoidance and particular domains of interpersonal problems that warrants further investigation. The importance of our data is highlighted by the burden and difficult relationships experienced by mental health carers, that requires targeted and effective psychological treatment.

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Experiences of giving and receiving care in traumatic brain injury: An integrative review

Aims and objectives: To synthesise the literature on the experiences of giving or receiving care for traumatic brain injury for people with traumatic brain injury, their family members and nurses in hospital and rehabilitation settings. Background: Traumatic brain injury represents a major source of physical, social and economic burden. In the hospital setting, people with traumatic brain injury feel excluded from decision‐making processes and perceive impatient care. Families describe inadequate information and support for psychological distress. Nurses find the care of people with traumatic brain injury challenging particularly when experiencing heavy workloads. To date, a contemporary synthesis of the literature on people with traumatic brain injury, family and nurse experiences of traumatic brain injury care has not been conducted. Design: Integrative literature review. Methods: A systematic search strategy guided by the PRISMA statement was conducted in CINAHL, PubMed, Proquest, EMBASE and Google Scholar. Whittemore and Knafl's (Journal of Advanced Nursing, 52, 2005, 546) integrative review framework guided data reduction, data display, data comparison and conclusion verification. Results: Across the three participant categories (people with traumatic brain injury/family members/nurses) and sixteen subcategories, six cross‐cutting themes emerged: seeking personhood, navigating challenging behaviour, valuing skills and competence, struggling with changed family responsibilities, maintaining productive partnerships and reflecting on workplace culture. Conclusions: Traumatic brain injury creates changes in physical, cognitive and emotional function that challenge known ways of being in the world for people. This alters relationship dynamics within families and requires a specific skill set among nurses. Relevance to clinical practice: Recommendations include the following: (i) formal inclusion of people with traumatic brain injury and families in care planning, (ii) routine risk screening for falls and challenging behaviour to ensure that controls are based on accurate assessment, (iii) formal orientation and training for novice nurses in the management of challenging behaviour, (iv) professional case management to guide access to services and funding and (v) personal skill development to optimise family functioning.

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Caregiving as mobility constraint and opportunity: married daughters providing end of life care in northern Ghana

In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities. This article contributes to geographies of care by offering an examination of the mobility constraints experienced by married and externally-resident daughters seeking to provide end of life care to a parent in northern Ghana. Drawing on ethnographic research, I examine how particular familial relationships are embedded with socially constructed labour obligations, leading to conflicting responsibilities at a parent’s end of life. I then consider how a woman as a daughter works to overcome these constraints to provide end of life care. I conclude that understanding the mobility of care providers can contribute to avoiding potentially damaging assumptions of ‘traditional’ norms of care and is an important consideration towards understanding the geographies of care in the rural global south.

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Extraordinary normalcy: Home, relationships and identities in narratives of unpaid care

Based on audio diaries and narrative interviews with family carers, this paper suggests care can be understood as an experience of ‘extraordinary normalcy’, meaning that profound shifts in home, relationships and identities take place whilst caring, yet these become part of the normalcy of family life. To maintain and understand a sense of normalcy, our participants utilise professional and technological interventions in the home and draw on notions of responsibility, reciprocity and role-reversal as frameworks for explaining why they continue to care, despite the challenges it brings. The paper considers how domestic activities performed in the home can both highlight the extraordinary aspects of care and help maintain the normalcy of the everyday. Extraordinary normalcy is a concept that problematises definitions of care that remove it from the relational and everyday, yet acknowledges the challenges people face when performing care. This paper contributes to a call for a narrative based development of social policy and makes recommendations for policy and practice based on the in-depth accounts of family carers.

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Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision. Design: A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content. Data sources: Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review. Results: Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing. Conclusion: Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.

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Challenges in intergenerational caregiving for frail older people: A multiple case study

Families in Taiwan are considered central in caring for frail older people. However, rapid social changes are reshaping Taiwanese family values and structures. In this study, we explored the challenges of intergenerational families in caring for frail older people in Taiwan. Using a multiple-case study, 32 participants representing 12 families comprising three or more generations participated in individual, semistructured interviews. A grounded theory technique was used for the data analysis. Four themes emerged in the findings: intergenerational and intragenerational disharmony, restrictions in the physical environment, financial caregiving burdens, and lack of support from the healthcare system. The findings can help raise awareness of filial caregiving obligations of aging family members that have shifted from a parent-child dyad to being shared across multiple generations in Taiwan. Intergenerational caregiving for frail older people has become a challenge for policies aimed at keeping the aging population in the community.

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Impact of Behavioral Symptoms in Dementia Patients on Depression in Daughter and Daughter-in-Law Caregivers

Background: One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Materials and Methods: Ninety-five daughter (n=47) and daughter-in-law (n=48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Results: Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Conclusions: Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress. 

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Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race

Purpose of the Study: This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Design and Methods: Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers’ well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Results: Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. Implication: The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background.

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Effect of caregiving relationship and formal long-term care service use on caregiver well-being

Aim: Despite efforts to revise the traditional long‐term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front‐line care providers. The present study aimed to understand the effect of informal caregiving on caregivers’ well‐being in Singapore with respect to different types of patient–caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers’ well‐being. Methods: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers’ well‐being (self‐rated general health, stress level and quality of life) and LTC service use among different patient–caregiver relationships. Results: Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non‐immediate family caregivers showed better overall well‐being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self‐rated general health compared with caregivers of patients referred to community‐based services. Spouse and non‐immediate family caregivers of patients who utilized nursing home or home‐based services presented poorer self‐rated general health than caregivers of the patients who did not use any formal services. Conclusions: Developing a better understanding of the associations between well‐being and formal LTC service use for different types of patient–caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care. 

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Dyadic effects of gratitude on burden, conflict, and contribution in the family caregiver and sibling relationship

Family caregivers are a quickly growing population in American society and are potentially vulnerable to a number of risks to well-being. High stress and little support can combine to cause difficulties in health and personal relationships. Siblings are, however, a possible source of protection for the at-risk caregiver. This study examines the relationships between caregiver burden, relational conflict, individual contribution, and gratitude exchange between caregivers and their siblings as they attend to the issue of caring for aging parents. Dyadic data were collected through an online survey and were analyzed using a series of actor–partner interdependence models. Dimensions of gratitude related to reduced caregiver burden, improved care-related conflict, and promotion of greater contribution to caregiving.

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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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Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study

Objective: Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life.; Background: Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction.; Methods: A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period.; Results: An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health.; Discussion: High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

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Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study

Purpose: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving.; Methods: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews.; Results: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving.; Conclusions: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

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Informal care relationships and residential aged care recommendations: evidence from administrative data

Background: The Australian government recognises the importance of informal care to enable ageing in place. Yet, few multivariable studies have examined aspects of informal care that alter the probability of entry to residential care in Australia. Existing Australian and international studies show differing effects of informal care on entry to residential care.; Methods: We utilise unique administrative data on aged care assessments collected from 2010 to 2013, consisting of 280,000 persons aged 65 and over. Logistic regression models were fitted to measure the propensity to be recommended care in a residential care setting, disaggregated by characteristics of informal care provision.; Results: Providing some explanation for the divergent findings in the literature, we show that close familial carer relationships (partner or child) and coresidence are associated with recommendations to live in the community. Weaker non-coresidential friend or neighbour carer relationships are associated with recommendations to live in residential care for women, as are non-coresidential other relatives (not a child, partner or in-law) for both males and females. Non-coresident carers who are in-laws (for females) or parents have no impact on assessor recommendations. Despite these significant differences, health conditions and assistance needs play a strong role in assessor recommendations about entry to residential care.; Conclusion: Co-resident care clearly plays an important protective role in residential care admission. Government policy should consider the need for differential supports for co-resident carers as part of future aged care reform.

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Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions

Background: Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.; Methods: PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.; Results: A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.; Conclusion: Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

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Dyadic incongruence in chronic heart failure: Implications for patient and carer psychological health and self-care

Aims and Objectives: To examine whether chronic heart failure patient-carer dyads who disagree about the division of illness management tasks (incongruent) experience poorer psychosocial health and self-care, than those who agree (congruent).; Background: Informal carers often assist patients with chronic heart failure in the complex management of their illness, but little is known about how relationship dynamics may affect psychosocial health.; Design: A prospective cross-sectional study was adopted with a purposeful sample of 25 chronic heart failure patient-carer dyads residing in Australia.; Methods: Data were collected via mail-out questionnaires. Dyads were classified as congruent or incongruent using the Heart Failure Care Assessment Scale. Depression, anxiety, stress and quality of life were assessed in patients and carers. Additionally, self-care and relationship quality were assessed in patients; and burden and esteem were assessed in carers. Differences in congruent and incongruent patient and carer outcomes were examined.; Results: Dyads were predominantly spousal and around a third demonstrated incongruence. No significant differences were found between congruent (n = 16) and incongruent (n = 9) dyads, although patients in incongruent dyads tended to have been diagnosed more recently.; Conclusion: In chronic heart failure patient-carer dyads incongruence exists even for patients with relatively mild chronic heart failure symptoms. These findings indicate that dyadic incongruence in illness management might not affect high-functioning chronic heart failure heart failure patients or their carers.; Relevance To Clinical Practice: Given the prevalence of dyadic incongruence and the possibility of further negative outcomes with disease progression, it is important to examine factors such as length of time since diagnosis or type of carer relationship. By implementing self-care education and management strategies that focus on the dyad, rather than the individual, nurses have the potential to improve both patient and carer outcomes.

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A longitudinal study looking at and beyond care recipient health as a predictor of long term care home admission

Background: The unpaid care provided by informal caregivers allows care recipients to live longer in their homes, which often results in fewer unnecessary long term care home (LTCH) admissions. Although the relationship between care recipient's health characteristics and institutionalization is well known, the influence of caregiver distress and caregiving coresidence and relationship on this outcome is less clear. This study examines the association of care recipient care needs, caregiver distress and caregiving coresidence and relationship with care recipient long term care home admission.; Methods: A total of 94,957 resident assessment instruments-home care (RAI-HC), completed between April 01st 2013 and April 01st, 2014 as part of a clinical practice by 14 Local Health Integration Networks (LHINs) in Ontario, Canada, were linked to LTCH admissions within 1 year after completion of the first RAI-HC assessment. Cox models were used to examine whether care recipient health care needs, caregiver distress and caregiving characteristics such as coresidence and relationship were associated with LTCH admission. Age, marital status and gender of the care recipient were included as covariates in the model.; Results: Care recipient health care needs and age were the strongest predictors of LTCH admission followed by caregiver distress and caregiving coresidence and relationship. Care recipient marital status was not significant in the survival model. Interestingly, care recipients who were cared for by a coresiding adult child caregiver were less likely to be admitted to a LTCH than care recipients cared for by a spouse caregiver coresiding or not with care recipient. Hazard rates (HR) of admission for care recipients cared for by caregivers coresiding and with other type of relationship with care recipient were not significantly different than HR of care recipients cared for by coresiding child caregivers.; Conclusions: These results emphasize the influence of caregiver distress in LTCH admission and highlight the impact of caregiving relationship and coresidence on this outcome. Policy and decision makers should consider these findings when developing and evaluating interventions aiming to avoid LTCH admissions. Moreover, caregiving coresidence and relationship should be explored in future studies with similar aims, as this information has been neglected in past research.;

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Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication

Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10–17 and 14 young adult carers aged 18–25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face.

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A bittersweet relationship: What does it mean to be the caregiver of a patient with bipolar disorder?

Background: As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder. Objective: Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients. Method: This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate. Results: Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient–caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease. Conclusions: It is necessary to integrate evaluation and attention for patients’ caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient–caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD. 

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I just can't please them all and stay sane: Adult child caregivers’ experiences of family dynamics in care‐giving for a parent with dementia in Australia

Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care‐giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers’ distress in the context of caring for a parent with dementia. Semi‐structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers’ lack of choice in adopting the care‐giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care‐giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.

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Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads

Objective: Many difficult decisions are made in the inpatient hospital setting regarding the daily care of persons with dementia (PWDs). Incongruent perceptions of the PWD's care values limit the family caregiver's ability to make surrogate decisions. The objectives of this pilot study were to describe and identify determinants of incongruent perceptions in the hospital setting. Methods: Using multilevel modeling (MLM), we examined cross-sectional data collected from 42 PWD-family caregiver dyads. Results: There was a significant amount of incongruence, on average, for all four subscales representing the PWD's care values: autonomy = −0.33 (p< .001); burden = −.49 (p< .001); safety/quality of care = −.26 (p< .001); and social interactions = −.21 (p= .004). Family caregivers (CG) rated the importance of care values to the PWD as lower than the PWD rated the importance. Determinants of greater incongruence included higher relationship strain and fewer positive dyadic interactions. Conclusion: Our findings reveal significant levels of incongruence in perceptions of the PWD's values among dementia care dyads in the hospital setting. Our analysis suggests a potential impact of relationship variables on incongruence. Further research is needed around this overlooked interpersonal context for supporting the dementia care dyad in the hospital setting. 

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For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study

Objectives: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. Methods: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad’s status at follow-up. Results: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. Discussion: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained. 

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Allocating Family Responsibilities for Dependent Older People in Mexico and Peru

This paper applies different analytical frameworks to explore processes of family bargaining about providing care for dependent older people in Mexico and Peru. These frameworks include cultural norms, life course effects and material exchange. The paper is based on 19 in-depth qualitative family case studies, which are linked to a wider set of quantitative survey data. Care arrangements and bargaining processes are revealed to be highly gendered, and largely conform to prevailing cultural norms. Rather than neutral and objective, the self-identified role as main carer is found to be subjective and potentially ambiguous. The few men who self-identify as main carers are more likely to play an indirect, organisational role than engage directly in daily care. As such, bargaining mainly relates to which woman performs the main care role, and large family networks mean that there is usually more than one candidate carer. Bargaining can occur inter-generationally and conjugally, but bargaining between siblings is of particular importance. Bargaining is framed by the uncertain trajectory of older people's care needs, and arrangements are sometimes reconfigured in response to changing care needs or family circumstances. Taking the narratives at face value, the influence of life course effects on bargaining and care arrangements is more obvious than material exchange. There are, however, indications that economic considerations, particularly inheritance, still play an important behind the scenes role. [ABSTRACT FROM AUTHOR]

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Intergenerational transfers and informal care for disabled elderly persons in China: evidence from CHARLS

Aiming at 'ageing healthier and ageing better', a certain amount of highquality informal care should be available for elderly persons with physical disability as formal care is barely accessible in China. The demographic transition and family structural changes have dramatically weakened traditional norms of filial piety and the structure of intergenerational transfers. This article employed nationwide representative data from the first wave (2011) of Chinese Health and Retirement Longitudinal Study (CHARLS) in order to identify the duration of informal care provision at home for frail elders (1122 in rural areas and 577 in urban areas, total 1699), measured in monthly hours, before estimating the associations between intergenerational transfers and the received time of informal care with Tobit Model analysis. Results showed that financial support from the younger generation was unexpectedly negatively associated with the monthly hours of care, implying a reduction of caring support along with increasing financial transfers towards older parents. The lack of informal care could not be compensated by having more children, co-residing with children, or increasing the parent-to-child/grandchild transfers. Spouses were shown to replace children as the major caregivers. In addition, the communitybased long-term care system needs to be promoted to sustain and develop informal care, as the latter will become increasingly important with changing family dynamics. Finally, the received time of informal care, rather than the severity of physical disability measured by difficulty with ADLs or IADLs, was introduced to identify the actual demand for care by elders. The paper argues that it is important to reconceptualise and re-investigate the duration of care provision in the Chinese context in order to develop standards of payment as part of long-term care policies. 

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Discussion Paper 7: Romancing the Carer - Intimate Relationships and Family Caring

This is the seventh paper in the Care Alliance Ireland Discussion Paper Series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion  within the wider community of academics, not-for-profit organisations and other interested parties. 

The relative unavailability of studies specifically addressing the issue of the impact on intimate relationships of Family Carers is worth noting. The majority of studies that have been undertaken often focus exclusively on the impacts of the disability on the relationship, rather than the impact of caring on the partner/spouse providing care, or on the partner/spouse of a Family Carer. Consequently, this paper is exploratory in nature, and is based on discussions with professionals and Family Carers. Where reference material is available, it has been included; however, material was not available for all topics under discussion in this paper.

The inspiration for the paper has been drawn from conversations with some of our member organisations and a number of Family Carers. These Family Carers have indicated that while this topic may not be of relevance to all Family Carers, it is a topic which those supporting carers must be aware of, and not be afraid to address if necessary.

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Communication between nurses and family caregivers of hospitalised older persons: a literature review

Aims and Objectives: To review the literature concerning the feelings, thoughts and behaviours of nurses and family caregivers of hospitalised older persons when they communicate with one another.; Background: Communication between nurses and family caregivers of hospitalised older persons is not always optimal. Improving the frequency and quality of this communication might be a way to make the most of available human capital in order to better care for hospitalised older people.; Design: A literature review was carried out of qualitative, quantitative and mixed-design studies relating to communication between nurses and family caregivers. Findings were analysed thematically.; Results: Family caregiver thoughts, feelings and behaviours relative to nurse control and authority, nurse recognition of their contribution, information received from and shared with nurses and care satisfaction could influence communication with nurses. Nurse thoughts regarding usefulness of family caregivers as care partners and their lack of availability to meet family caregiver demands could influence communication with family caregivers.; Conclusions: The thoughts, feelings and behaviours of family caregivers and nurses that might create positive or negative circular patterns of communication are evidenced. Further research is required to gain a more comprehensive understanding of the phenomenon.; Relevance To Clinical Practice: Nurses must be trained in how to communicate with family caregivers in order to form a partnership geared to preventing complications in hospitalised older persons. Results could be used to inform policy regarding the care of hospitalised older persons.

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Carer-related research and knowledge: Findings from a scoping review

The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers’ profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross-sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost-effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer-related research is its location in one of two, largely separate, paradigmatic frameworks: the “Gatherers and Evaluators” and the “Conceptualisers and Theorisers.” The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring.

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A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers

Purpose: Unpaid care is an important source of support of people with long-term conditions. Interdependence of carers’ and care recipients’ quality of life would be expected due to the relational nature of caregiving. This study aims to explore interdependence of quality of life in carer/care-recipient dyads, especially in relation to mutual interdependence due to social feedback in the caregiving relationship and also the partner effects of one partner’s experience of long-term care support on the other’s outcomes. 

Methods: Using data collected in an interview survey of 264 adults with care support needs and their unpaid carers in England, we employed regression analysis to explore whether there is mutual interdependence of care-related quality of life within carer/care-recipient dyads for three quality of life attributes: Control over daily life, Social participation and Occupation. The influence of factors, including satisfaction with long-term care, were also considered on individuals’ and dyad partners’ care-related quality of life. 

Results: We found mutual interdependence of quality of life at the dyad-level for Control over daily life, but not Occupation or Social participation. A partner effect of care recipients’ satisfaction with long-term care on carers’ Control over daily life was also observed. Higher care recipient satisfaction with care services was associated with higher Control over daily life. By contrast, for Social participation and Occupation, there were only significant effects of care recipients’ satisfaction with long-term care and their own quality of life.

Conclusions:These findings highlight the importance of considering the wider impact beyond the individual of long-term care on quality of life in the evaluation of long-term care policy and practice.

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Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study

This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.

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The Experience of Caring For or Living with an Individual with an Eating Disorder: A Meta-Synthesis of Qualitative Studies

Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.

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Inform with care: ethics and information in care for people with dementia

Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care. It combines critiques of the ‘informatisation’ of care with insights from the epistemological dimension of care ethics to argue that information is better understood as ‘situated knowledge’ and that the relational practices of care involve the mobilisation and negotiation of different types of knowledge that are specific to caring relationships and contexts. The argument is illustrated through the three cases of caring relationships taken from a qualitative evaluation of an information and support course for carers of people with dementia. These cases highlight the specificity of caring relationships and the very different consequences of introducing new forms of knowledge into each relationship and provide evidence for the need for a paradigm shift where the idea of informing to care is replaced by a process of informing with care. In the former, information is understood as separate and outside of care, while nevertheless acting upon it to produce care; in the latter, information is understood as inextricably linked to care (with care) but not in any predetermined or uni-directional sense. The paper identifies key interlinked components of the ‘inform with care’ approach derived from the cases discussed.

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Sleep-wake disturbances in patients with cancer and their informal caregivers: A matter of dyads

Background: Changes in habitual sleep are among the most remarkable and important concerns of both patients with cancer and their informal carers. A dyadic approach in the assessment and management of sleep problems in patients and carers is a promising method of exploring concurrent sleep disturbances and establishing associations between sleep and sleep-impairing factors that may co-vary in the members of the dyad. The purpose of the present mini-review article was to discuss the current evidence, as well as highlight areas where future research is warranted. Patients & Methods: An electronic search for original peer-reviewed articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using a wide range of keywords and free-text terms. Cancer care-related evidence was complemented by additional data derived from studies conducted with married couples or in the context of other chronic illnesses. Results: Concurrent and comparable nocturnal sleep disruptions might be evident, where poor sleep quality, decreased sleep duration, and multiple awakenings may correlate with each other within the dyad. Care recipients’ and caregivers’ night and day rest patterns can be synchronised, as caregivers organise their sleep around the patient. Conclusion: More systematic, dyadic research is warranted to enhance development of intervention protocols for the comprehensive management of sleep disorders in this population throughout the illness experience. These interventions will ensure that sleep patterns are assessed in depth and are managed in a concurrent manner to achieve a concurrent increased level of well-being of patient-caregiver dyads.

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The impact of location on satisfaction with dementia services amongst people with dementia and their informal carers: a comparative evaluation of a community-based and a clinic-based memory service

Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.

Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.

Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.

Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.

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Carers' experiences of assertive outreach services: an exploratory study

Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.

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Talking about care: two sides to the story

Despite its familiarity, the realities of care are both complex and contested. This book offers a unique approach to scrutinising the co-existence of both care and abuse in relationships. It demonstrates ways of increasing critical reflexivity when working with people involved in difficult care relationships. The book emphasises that when talking about care, we need to care about talk. Discourse analysis is introduced as a method of investigating relationships, policy and literature in informal care. Analytic tools are considered alongside case studies to illustrate how both carer and caree construct their relationship and account for difficulties with each other. The book addresses key questions, including: What can we learn by muddying the false polarities between `care/abuse' and `carer/caree'? How do carers and carees use life histories to explain troubled relationships? What can discourse analysis add to how we make sense of individual carer/caree accounts? How can health and social care practitioners [...]

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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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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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No effects of a combination of caregivers support group and memory training/music therapy in dementia patients from a memory clinic population

Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.

Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.

Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.

Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.

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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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Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.

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How involuntary commitment impacts on the burden of care of the family

Little research has examined how, or if, involuntary commitment has impacted on the burden experienced by the family. This paper reports a qualitative study which explored how involuntary commitment under the Mental Health Act (MHA) 2000 in Queensland, Australia impacted on families of people with mental illness. Family members of a person with a mental illness, under involuntary commitment at the time or in the previous 12 months, participated in focus groups. Thematic analysis was used to determine the themes. It was apparent from the views of the family that the use of the involuntary commitment was influenced greatly by the pressures experienced by the mental health services (MHS). The MHA did little to assist the family in gaining access to MHS. It was not until after the family made repeated attempts that they were taken seriously. Often the family had few options other than to use deceit and threats to obtain the necessary treatment required. In view of this, the inherit nature of what involuntary commitment implies for persons under it, such as refusing treatment and management difficulties, indicates the family with such an individual experience more hardship in trying to obtain assistance for that person. Thus, the MHA in Queensland has not met its goals of increasing access to MHS. Family members perceive that they were not being listened to and their concerns were not acted upon. The current culture of the MHS appears to serve, to a large degree, to estrange the family from the consumer making relationships difficult and time-consuming to repair. The mental health profession is urged to consider the culture within their workplace and move towards constructive involvement of the family.

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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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Well-being among employed and non-employed caregiving women in Taiwan

This study addressed various groups of non-employed/employed and non-caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well-being, as measured by self-rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well-being of carers of young children (n= 1,697) were also analysed. The results showed that non-employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non-employed, ought to be supported by policies. To improve carers' well-being, care–work reconciliation among working-age women needs to be included in the future care scheme in Taiwan.

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Participation: (re)interpretation of a core value in the Czech social care of the frail elderly

A variety of non-fiscal input could be brought into discussion regarding the redesign and/or reform of the social care system for the frail elderly in the Czech Republic. It should be based on a deeper understanding of different stakeholders' interpretations of "Participation" one of the core values of the European social model. The study was based on secondary data collected through semi-structured interviews with "informal carers" (family members, non-professionals), secondary data collected through international focus-groups; participants were recruited from master-degree students of "social and health care management" using qualitative content analysis and data collected through document content analysis. With an aging European population, the intergenerational participation appears disputable (not axiomatic) with two generations of frail seniors in one family. Redesigned and/or new kinds of "prevention" services should be in place, possibly refocusing its effort to different target groups to support the perspective of “qualified customer behaviour”. It offers possible direction of further research.

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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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Prepared to care? Exploring the impact of caring on people's lives

The Carers Week partnership wanted to find out from the UK’s carers how prepared as a society we are and what could make a difference to carers’ lives and the people they care for. Prepared to Care? explored the impact that caring has on people’s lives. In particular it focused on carers’ relationships, career, finances and health and well-being. The following are the findings of the survey of over 2,100 carers and their experiences. It concludes with recommendations from carers. 

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Alexander technique

Reports on how Durham's Carer development manager was able to improve the authorities relationships with carers groups.

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Facilitating change and adaptation : The experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease

Background: Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient.

Objective: This study seeks to understand the experiences and needs of family carers of people with severe COPD.

Design: Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically.

Results: The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services.

Conclusion: The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

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Gender differences in intergenerational care in European welfare states

Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.

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A practical guide for disabled people or carers: where to find information, services and equipment

Guide giving information about services for disabled people available from government departments and agencies, the NHS, local government, and voluntary organisations. Covers every need, including housing, money, opportunities for holidays and leisure, and many more. Includes phone numbers, publications and a list of organisations.

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Towards a more inclusive vision of dementia care practice and research

Drawing on recent literature this article explores the development of research with family carers and people with dementia and identifies a number of themes that have emerged over time. It raises fundamental questions about the nature and purpose of research and the balance of power between researchers, family carers and people with dementia. Existing notions of expertise and knowledge are called into question and the article concludes with a call for a more empowering and inclusive model of research and practice based upon a relationship-centred approach to care.

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Commissioning care services for older people in England : the view from care managers, users and carers

One of the key objectives of the community care reforms of 1990 in the United Kingdom was the development of a flourishing independent sector alongside good quality public services. The aims of the reforms were to increase the available range of options, widen consumer choice and promote independence. The purpose of the study reported here was to examine – from the perspective of older service users, their carers and care managers – experiences at the operational level of arranging, delivering and receiving care services. The findings are based on data gathered in seven local authorities including reviews of case files, policy documents and face-to-face, in-depth interviews with 55 users, 37 carers and 28 care managers. There is evidence of a pronounced emphasis on procedure-based systems of care management. Potentially this has two significant consequences. First, the fostering of personal relationships may be subordinated to the organisation of short-term tasks and thereby may threaten patterns of trust and accountability. Second, the associated fragmentation of the assessment and care management process which in turn can lead to discontinuities of care for users and their carers. The paper concludes that there is still some way to go before care managers as micro-commissioners have sufficient and reliable information or available service capacity to match providers' capabilities with users' and carers' needs.

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An exploratory qualitative study on relationships between older people and home care workers in South Korea: the view from family carers and service providers

Although the proportion of older people using home care services has significantly increased in East Asian countries, the issue of the relationships between older people and home care workers in the East Asian context has received scant attention from scholars. This exploratory qualitative study aims to explore these relationships under the new Korean long-term care insurance system. Semi-structured in-depth interviews were conducted with 22 family carers and private-sector home care service providers (home care workers and provider managers). The findings show that while the majority of family carers interviewed reported that their relationships were good, the majority of service providers' responses were more negative. Service providers stated that they experienced a number of difficulties that affected their relationships with older clients, including excessive demands or sexual harassment by the older people in their care, exposure to unsafe working environments, and poor treatment in terms of pay and conditions. The findings suggest that stable and good relationships between home care workers and their clients have not been secured in Korea's long-term care system.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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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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Caring Relationships Over Time

Following a competitive bid, the Social Policy Research Unit (SPRU) was commissioned by the Department of Health to carry out research on Caring relationships over time: predicting outcomes for carers. This was one of 13 linked studies which formed part of a research initiative on OUTCOMES OF SOCIAL CARE FOR ADULTS (OSCA). The project commenced in September 1997 with a proposed duration of 22 months. In the event additional funding was obtained for a further six months to explore issues identified in the main stage; the project formally closed in July 2000. The principal investigators were Sandra Hutton (50 per cent full-time), Michael Hirst (50 per cent) and Dot Lawton (20 per cent). Julie Williams assisted with the data analysis.

The aim of the study was to relate outcomes for carers to the timing and duration of care-giving episodes within individuals' life course and for different generations by: examining carers' circumstances before and after starting and finishing care; relating care-giving episodes to the carers' and their families' life course; identifying what allows carers to continue caring, what determines the end of caring and how far services are a factor; estimating the changing likelihood of becoming a carer for younger and older cohorts; charting longer-term trends in care-giving activity and the population of carers. The research focused on the health, employment, financial and family outcomes for carers in three nationally representative data sets, the British Household Panel Survey, the General Household Survey, and the Family and Working Lives Survey, comparing groups of carers and carers with non-carers. 

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Interactions between care-giving and paid work hours among European midlife women, 1994 to 1996

This paper uses data from the European Community Household Panel surveys Of 1994 and 1996 to study the association between changes in care-giving and changes in weekly work hours. Our sample comprises women aged 45-59 years who participated in the labour force in at least one of the two years studied. Controlling for country variation, we find significant relationships between starting or increasing informal care-giving and changes in weekly work hours. No such association is found however among women terminating a care-giving commitment or reducing their care hours. Starting care-giving significantly reduces work hours for women in northern European countries (except Ireland). By contrast, women in southern Europe and Ireland respond to an increase in care-giving hours by a smaller increase or a higher decrease in work hours than non care-givers. In summary, our results show that the impact of care-giving on adjustments of weekly work hours is asymmetrical and that it differs in southern and northern Europe.

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Transitions to informal care in Great Britain during the 1990s

Objectives: To estimate annual changes and trends in the population of informal carers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement.

Design: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales.

Subjects: Over 9000 adults over 16 years interviewed personally in successive waves of the survey, including around 1300 informal carers each year.

Results: One third of co-resident carers and 40% of extra-resident carers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that carers increase their involvement in caring activities over the first three years of a caring episode.

Conclusions: The population of carers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be most effective in supporting carers through changing circumstances. Recognition and support for carers who are heavily involved in caring activities from the outset should be a priority.

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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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Experience of burden in carers of people with dementia on the margins of long-term care

Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.

Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.

Methods: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support.

Results: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult–child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden.

Conclusion: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support. Copyright © 2015 John Wiley & Sons, Ltd.

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Association between informal caregiving and cellular aging in the Survey of the Health of Wisconsin: The role of caregiving characteristics, stress, and strain

The pathophysiological consequences of caregiving have not been fully elucidated. We evaluated how caregiving, stress, and caregiver strain were associated with shorter relative telomere length (RTL), a marker of cellular aging. Caregivers (n = 240) and some noncaregivers (n = 98) in the 2008–2010 Survey of the Health of Wisconsin, comprising a representative sample of Wisconsin adults aged 21–74 years, reported their sociodemographic, health, and psychological characteristics. RTL was assayed from blood or saliva samples. Median T and S values were used to determine the telomere-to-single copy gene ratio (T/S) for each sample, and log(T/S) was used as the dependent variable in analyses. Multivariable generalized additive models showed that RTL did not differ between caregivers and noncaregivers (difference in log(T/S) = −0.03; P > 0.05), but moderate-to-high levels of stress versus low stress were associated with longer RTL (difference = 0.15; P = 0.04). Among caregivers, more hours per week of care, caring for a young person, and greater strain were associated with shorter RTL (P < 0.05). Caregivers with discordant levels of stress and strain (i.e., low perceived stress/high strain) compared with low stress/low strain had the shortest RTL (difference = −0.24; P = 0.02, Pinteraction = 0.13), corresponding to approximately 10–15 additional years of aging. Caregivers with these characteristics may be at increased risk for accelerated aging. Future work is necessary to better elucidate these relationships and develop interventions to improve the long-term health and well-being of caregivers.

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What predicts whether caregivers of people with dementia find meaning in their role?

Background: Informal dementia caregiving has traditionally been perceived as an extremely stressful process; however, more recent research has started to focus on the positive aspects of providing care. Studies indicate that caregivers who derive something positive out of caregiving have better well-being. However, there has been little exploration of the factors linked to caregivers identifying positive aspects of providing care. The aim of the current study was to explore the predictors of finding meaning in caregiving.

Methods: This was a cross-sectional questionnaire study in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The questionnaire contained measures of meaning, relationship quality, caregivers' motivations to provide care, role captivity and caregiving competence.

Results: Correlational analyses showed that higher meaning was associated with being a spousal caregiver, providing greater hours of care, higher religiosity, a better pre-caregiving and current relationship quality, higher competence, lower role captivity, higher intrinsic motivations and higher extrinsic motivations. Hierarchical regression analyses indicated that variance in finding meaning was significantly predicted by high religiosity, high competence, high intrinsic motivations and low role captivity.

Conclusion: From these findings, it is recommended that interventions should help caregivers focus on positive aspects of providing care and enhance their feelings of competence. Copyright © 2012 John Wiley & Sons, Ltd.

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Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England.

Methods: Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses.

Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance.

Conclusion: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.

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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 controlled-trials.com, 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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Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.

STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.

DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.

FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.

CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.

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Components of coordinated care: a new instrument to assess caregivers' and care recipients' experiences with networks of dementia care

This article reports on the development of an instrument to measure dementia patients' and their families' experiences with care provision. Using the responses of 267 care recipient/caregiver dyads, exploratory factor analysis was used to extract an underlying structure of the dyads' assessments of their experiences with dementia networks of care. The results suggested that from the perspective of the care recipient and caregiver, it is the individuals who they interact with in their care journey that define and shape the evaluation of their experiences. In the early stages of dementia, the family physician plays a central role in helping dyads understand the disease and the networks of care that are available to them; in later stages of the disease, it is the activities of the health care worker who is central to the dyad's lived experiences of the care they are receiving. The third important construct linked to the period when a care recipient and caregiver dyad was increasingly aware that dementia services may be needed and the process of assessment and placement was underway. Having information about what resources are available and how they can be accessed, and being able to complete assessments and placements in a timely fashion, was central to their assessment of care networks.

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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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Nurses' Perceptions of Their Relationships with Informal Carers in Institutional Respite Care for Older People

The purpose of this study was to describe nurses' experiences of their collaboration and relationships with family members in institutional respite care for the elderly. The family has a particularly important role in respite care, which is an extension of care provided at home. However no published studies were found on this subject. The data were collected through qualitative interviews (N=22). Content analysis of the nurses’ descriptions of their collaboration with family members yielded four main categories as follows: (1) conscious ignoring, (2) attempting to understand the family’s situation, (3) hinting at private family matters, and (4) being a friend. The results lend support to earlier findings which emphasize the complexity of relationships between nurses and family carers. A novel finding here is that these relationships may also develop into friendships. Greater emphasis must be placed on primary nursing so that the nurse and informal carer can build up a genuine relationship of trust. If periods of respite care are to help older people and their families to manage independently, it is imperative that nurses have the opportunity to visit their patients at home.

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Aging together: sibling carers of adults with intellectual and developmental disabilities

Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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What are the factors that facilitate or hinder resilience in older spousal dementia carers? a qualitative study

Objectives: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework .

Method:Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England.

Results: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care.

Conclusion: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

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Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.

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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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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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Perceptions of Giving Support and Depressive Symptoms in Late Life

Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.

Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.

Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.

Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.

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Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.

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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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A life like any other? Human rights of adults with learning disabilities: seventh report of session 2007-08: volume 2: oral and written evidence (HL 40-ii; HC 73-ii)

The evidence to the Joint Select Committee on Human Rights paints an often harrowing picture of neglect, abuse and the denial of fundamental human rights to adults living with learning disabilities in the UK. Evidence received by the Committee reveals that people with learning disabilities are more vulnerable to abuse and are less likely to understand their fundamental human rights, including to be treated with dignity and respect by public authorities. Adults with learning disabilities and their advocates and carers told the Committee about how people were denied the opportunity to conduct their own lives as any adult would take for granted including the ability to form and conduct relationships.

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Essence of care 2010: benchmarks for communication

The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document outlines the benchmarks for communication, in order to support people and their carers to experience effective communication. It starts by listing the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to communication, together with their supporting indicators. The factors are: interpersonal skills; opportunity for communication; assessment of communication needs; information sharing; resources to aid communication and understanding; identification and assessment of principle carer; empowerment to perform role; co-ordination of care; Empowerment to communicate needs; Valuing people’s and carers’ expertise and contribution; People’s and/or carers’ education needs.

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Between elderly parents and adult children : a new look at the intergenerational care provided by the 'sandwich generation'

The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.

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Giving voice to informal caregivers of older adults

This study focused on the experiences of informal caregivers of older adults and explored whether employment, use of home-care services, or other factors influence the health of caregivers and their ability to manage their caregiving and other responsibilities. Focus groups conducted with 26 caregivers and personal interviews with 4 caregivers identified 12 themes under 5 conceptual areas: caregiver health, relationships, independence, employment, and use of home-care services. The findings reveal that caregiving coupled with other responsibilities can have serious health effects. Participants spoke of the tenuous balance of decision-making control between caregiver and care recipient. Many caregivers expressed a desire to be included as part of the formal health-care team. Implications for nursing are discussed.

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Social participation: how does it vary with illness, caring and ethnic group?

It has long been accepted that lack of social participation in wider society is one aspect or one definition of poverty. Current concerns with the extent and distribution of social capital as both a measure of a good society and as means to upward mobility also emphasise the importance of social contacts and networks to the well-being of individuals and communities. While research has often focused on ‘civic participation’ and the measurement of trust, more informal social bonds are also a crucial part of individuals’ social capital. Moreover, informal social capital or social participation might be particularly important for those whose circumstances make them already more vulnerable to marginalisation, exclusion or poverty. For example, social interaction has been argued to be conducive to better outcomes for those with health problems; and there is an extensive literature which aims to chart and explain the role of ‘ethnic capital’ in the life chances of minority ethnic groups. I use the British Home Office Citizenship Survey 2001 for England and Wales to explore the impact on four aspects of lack of social engagement of long-term illness, caring for someone with such an illness, and ethnicity. Controlling for a range of characteristics and examining the relationships separately for men and women there is evidence that between them, the four measures reveal an underlying propensity for reduced social contact. Other things being equal, illness has little association with reduced social participation, but caring does seem to affect opportunities for sociability. Members of some ethnic groups are less likely to engage in neighbourly social visiting than others, and these differences are little affected by income level. By contrast differences in ‘going out’ across groups can largely be explained by differences in income. Overall, social engagement among male Bangladeshis and to a lesser extent Pakistanis is high, whereas Black Africans and Black Caribbeans, especially women, are notable for their lack of opportunities for social engagement compared with their otherwise similar peers. They would appear to be particularly at risk of social isolation, with consequences for their current and future welfare. 

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Awareness of carer distress in people with dementia

Objectives: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.

Method: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.

Results: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.

Conclusion: The clinical implications of awareness of carer distress in people with dementia should be considered. Copyright © 2009 John Wiley & Sons, Ltd.

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Elasticity of care networks and the gendered division of care

The gender gap in family care-giving is an established research finding: men dedicate less time to care-giving and provide specific gendered types of help. This article argues that in order to grasp men's contribution to care arrangements one should recognise the multifaceted nature of care and examine care networks beyond the ‘care receiver–primary care-giver’ dyad with a dynamic perspective. A qualitative analysis of the care networks of three large Dutch families with an older parent in need of care confirms the greater involvement of women in care-giving and men's tendency to provide specific types of care. However, men also contribute to the elasticity and stability of the care arrangement by filling temporary gaps and supporting the female care-givers. This article puts forward the idea that men's contribution is in turn a factor in the perpetuation of the gendered structure of care-giving.

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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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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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Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

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Enhanced dementia practice for social workers

This online resource is primarily for Newly Qualified Social Workers, and existing social workers, who work in adult care and community care settings in Scotland. The main sections cover: understanding dementia; personal outcomes: valued relationships and community connections; working with carers; health and wellbeing; rights, support and protection; and supportive environments. Each section includes a mixture of personal stories, filmed drama, quotations, key facts, resource material and activities. The resource includes the personal testimonies of members of Scottish Dementia Working Group (SDWG) and National Dementia Carers Action Network (NDCAN). The resource is one a range of resources emerging from 'Promoting Excellence: a framework for all health and social services staff working with people with dementia, their families and carers' in Scotland.

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Coffee, cakes and mutual support

Norwich: a ‘coffee morning’ initiative aimed to give people with dementia and carers the ordinary social opportunities they were missing. It has succeeded and also brought many further benefits, as Judith Farmer explains

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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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Expressed emotion at first-episode psychosis: investigating a carer appraisal model

Background Even at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.

Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.

Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).

Results High EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers’ distress levels were not associated with EE.

Conclusions Even at the first episode, carers’ psychological appraisal, not patient illness factors, is influential in determining high EE. Carers’ appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.

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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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Caregiving patterns in rural Andean Colombia

Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.

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Social support in the case of illness: intergenerational solidarity

Background: Social support received through different forms of help from members of one's social network is an important element of coping with illness. In the case of illness, family members are the main providers of support, both within the same generation, but also, and increasingly so, between generations. This informal social support is related to socio-economic conditions of individuals: it is more common in lower economic and educational groups. Members of the middle generation, who help both the young and the old, are the main support providers. Also, female gender is the most significant predictor of the care burden. Withdrawing role of the welfare state in the postmodern society means shifting more responsibilities for care from the formal to informal sector. The aim of our study was to look into the characteristics of intergenerational support in illness in Slovenia. Methods: A cross-sectional study on personal support networks of the residents of Slovenia, sample size 5013, data collection by computerassisted telephone interviews, respondents above 18 years of age. Multiple Classification Analysis (MCA) was used for data analysis to find out how much the dependent variable deviated from the mean as a result of a given respondent characteristic while controlling for the effects of all others. Results: The analysis showed the proportion of respondents’ social network that would provide support in the case of illness and could be defined as intergenerational network. Intergenerational ties represent about 35 % of the whole support netork in illness. The most frequent receivers are the youngest group of respondents (18–29), followed by the 60+ age group. Women receive more help than men, especially those who are widows, living alone or living in multigenerational households. Intergenerational support is more frequent among the less educated respondents. Discussion: Our results comply with the findings in the literature, and are indicating that the actual trends in the changing structure and composition of the family, combined with less support from institutional health- and social care, is increasing the care burden of the informal carers within families. Conclussions: Health and social care policy and practice need awarness of the contextual factors of health care outcomes, taking into consideration social support networks’ functions.

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Providing care for an elderly parent: Interactions among siblings?

This article is focused on children providing and financing long-term care for their elderly parent. The aim of this work is to highlight the interactions that may take place among siblings when deciding whether or not to become a caregiver. We look at families with two children using data from the Survey of Health, Ageing and Retirement in Europe; our sample contains 314 dependent elderly and their 628 adult children. In order to identify the interactions between siblings, we have specified a two-person discrete game model. To estimate this model, without invoking the ‘coherency’ condition, we have added an endogenous selection rule to solve the incompleteness problem arising from multiplicity or absence of equilibrium. Our empirical results suggest that the three classical effects identified by Manski could potentially explain the observed correlation between the siblings' caregiving behaviour. Correlated effects alone appear to be weak. Contextual interactions and endogenous interactions reveal cross-effects. The asymmetric character of the endogenous interactions is our most striking result. The younger child's involvement appears to increase the net benefit of caregiving for the elder one, whereas the elder child's involvement decreases the net benefit of caregiving for the younger child. Copyright © 2009 John Wiley & Sons, Ltd.

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Gender differentials on the health consequences of care-giving to people with AIDS-related illness among older informal carers in two slums in Nairobi, Kenya

Informal caregivers, most often older people, provide valuable care and support for people ill due to AIDS, especially in poor-resource settings with inadequate health care systems and limited access to antiretroviral therapy. The negative health consequences associated with care-giving may vary depending on various factors that act to mediate the extent of the effects on the caregiver. This paper investigates the association between care-giving and poor health among older carers to people living with AIDS, and examines potential within-gender differences in reporting poor health. Data from 1429 men and women aged 50 years or older living in two slum areas of Nairobi are used to compare AIDS-caregivers with other caregivers and non-caregivers based on self-reported health using the World Health Organization disability assessment (WHODAS) score and the presence of a severe health problem. Women AIDS-caregivers reported higher disability scores for mobility and the lowest scores in self-care and life activities domains while men AIDS-caregivers reported higher scores in all domains (except interpersonal interaction) compared with other caregivers and non-caregivers. Multiple regression analysis is used to examine the association of providing care with health outcomes while controlling for other confounders. Consistently across all the health measures, no significant differences were observed between female AIDS-caregivers and female non-caregivers. Male AIDS-caregivers were however significantly more likely to report disability and having a severe health problem compared with male non-caregivers. This finding highlights a gendered variation in outcome and is possibly an indication of the differences in care-giving gender-role expectations and coping strategies. This study highlights the relatively neglected role of older men as caregivers and recommends comprehensive interventions to mitigate the impact of HIV and AIDS on caregivers that embrace men as well as women.

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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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The inter-relationship between formal and informal care: a study in France and Israel

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

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Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.

Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.

Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.

Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.

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Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals

As community care has become embedded in the UK as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers.

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Effect of stroke on family carers and family relationships

The effects of stroke on families are considerable. Family members may struggle to adapt to a care-giving role, and relationships between stroke survivors and those closest to them are often altered by the illness. This article provides an overview of the effects of stroke on family dynamics and identifies interventions to support stroke survivors and their families during this difficult time.

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The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status. © 2007 Wiley Periodicals, Inc. 

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Do older patients and their family caregivers agree about the quality of chronic illness care?

Objective: Family caregivers often accompany patients to medical visits; however, it is unclear whether caregivers rate the quality of patients' care similarly to patients. This study aimed to (1) quantify the level of agreement between patients' and caregivers' reports on the quality of patients' care and (2) determine how the level of agreement varies by caregiver and patient characteristics.

Design: Cross-sectional analysis. Participants: Multimorbid older (aged 65 and above) adults and their family caregivers (n = 247).

Methods: Quality of care was rated separately by patients and their caregivers using the Patient Assessment of Chronic Illness Care (PACIC) instrument. The level of agreement was examined using a weighted kappa statistic (Kw).

Results: Agreement of caregivers' and patients' PACIC scores was low (Kw = 0.15). Patients taking ten or more medications per day showed less agreement with their caregivers about the quality of care than patients taking five or fewer medications (Kw = 0.03 and 0.34, respectively, P < 0.05). Caregivers who reported greater difficulty assisting patients with health care tasks had less agreement with patients about the quality of care being provided when compared with caregivers who reported no difficulty (Kw = −0.05 and 0.31, respectively, P < .05). Patient–caregiver dyads had greater agreement on objective questions than on subjective questions (Kw = 0.25 and 0.15, respectively, P > 0.05).

Conclusion: Patient–caregiver dyads following a more complex treatment plan (i.e. taking many medications) or having more difficulty following a treatment plan (i.e. having difficulty with health care tasks) had less agreement. Future qualitative research is needed to elucidate the underlying reasons patients and caregivers rate the quality of care differently.

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Nightmare or needed strategy?

The authors draw on their experience as a counsellor and counselling service manager working for the Dementia Care Trust, an organisation that specialises in providing counselling for carers in their home space. They look at the perceived strengths and weaknesses of counselling in the home, including client commitment, client and counsellor safety and boundaries. They also highlight the benefits of working within the clients context and environment.

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The expressed emotion of case managers of the seriously mentally ill: the influence of expressed emotion on clinical outcomes

Background. Expressed emotion (EE) measured from relatives and informal carers has been consistently demonstrated to be associated with clinical outcome in schizophrenic patients. There have also been published studies that have investigated EE in professional carers that have suggested that the quality of the relationship between staff and patient may also be associated with patient outcomes. A large controlled trial of the effectiveness of different intensities of case management provided the opportunity to assess the association between the EE of case managers, including the quality of the relationship they had with patients under their care, and later clinical outcomes.

Method. This was a prospective naturalistic study of EE present in a case manager–patient dyad and subsequent patient outcomes. EE was assessed from the Five Minute Speech Sample (FMSS) at least 3 months after the case manager became responsible for the patient's care and a range of clinical outcomes were assessed 6 to 9 months later. Assessment of clinical outcomes was made independent and blind of the EE ratings.

Results. High EE ratings were significantly associated with individual case managers and not to symptom or illness factors. High EE was not associated with later clinical outcome, however, the positive relationship between case manager and patient was. The absence of a positive relationship was significantly associated with poorer outcomes.

Conclusions. In spite of very low face-to-face contact between case managers and patients, compared with the amount of contact patients have with their informal carers and family, aspects of staff attitudes and behaviour did influence clinical outcome. There are potential implications of these results for staff training and clinical practice.

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Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness

Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose ‘biographical we’ as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.

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The effect on caregiver burden of a problem-based home visiting programme for frail older people

Objective: caregiver effects of geriatric care models focusing primarily at the patient have not been consistently studied. We studied caregiver effects of a nurse-led comprehensive geriatric evaluation and management (GEM) programme for community-dwelling frail older people that showed—in a randomised comparison with usual care-–health-related quality of life benefits for the care receivers.

Methods: this randomised trial included 110 caregiver/patient dyads who were followed up for 6 months. Primary analyses were intention-to-treat analyses of caregiver burden assessed with Zarit Burden Interview (ZBI; 0–88; higher means more burden). Preplanned subgroup analyses were conducted for cognition, living arrangement and patient/caregiver co-residence.

Results: overall, perceived caregiver burden showed no significant differences between study groups in changes over time. However, perceived burden was at baseline more than eight points higher in caregivers sharing a household with patients ( n = 23) compared to caregivers living separately ( n = 87). The intervention performed better in caregivers living together with the patient than in caregivers living separately ( P for interaction = 0.04). Co-resident caregivers experienced six-Zarit point improvement compared with four-point deterioration in the non-co-resident caregivers.

Conclusions: GEM at home benefited patients, but maybe not caregivers. Caregiver effects are related to whether caregivers live with the patient or not.

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The 'Good Carer': Moral Practices in Late Modernity

Informal carers in the context of late modernity must negotiate two potentially conflicting discourses. One is associated with a post-traditional and increasingly individualized society characterized by ‘pure’ relationships with an emphasis on authenticity and choice. The other is a more traditional discourse found particularly in current health and social policy which relies explicitly on significant input by family carers. This ar ticle analyses the tensions arising from this paradox, specifically for older carers engaged in long-term care relationships. The first, theoretical, section provides an overview of the ‘subjective turn’ associated with modernity together with the heterogeneous ethics of governmentality associated with liberal rule. The second, empirical, section discusses ‘moral narratives’ drawn from carers’ accounts of caregiving. The conclusion highlights the social contexts in which carers make moral choices and identifies the links between policy normativities on the one hand and inequality and resistance on the other.

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Living with dementia: a systematic review of the influence of relationship factors

Introduction: Many people with dementia are enabled to live at home by the support of a close family member, who takes on the role of a carer. Considerable research has investigated the impact of caring for a person who has dementia. In early research, there was a tendency to overlook the experiences of the person with dementia and, in particular, the relationship between the two persons. This has now been corrected by a growing body of research on the relationships between people with dementia and the family members who care for them.

Method: Peer-reviewed publications on the influence of relationship factors in dementia caregiving were reviewed.

Results: The impact of dementia on the quality of relationships is examined, together with the impact of relationship quality on the experience of living with dementia. The different forms that relationships can take in the context of dementia are considered, and an integrative theoretical framework is proposed.

Discussion: A neglect of direct evidence from the person with dementia is identified, and possible ways of combating this are considered. Clinical implications are drawn with regard to supporting the carer, the person with dementia, and their relationship.

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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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Adult children and parental care-giving: making sense of participation patterns among siblings

The aim of this article is to analyse 20 Finnish working carers' perceptions of their sibling relations and the sharing of the responsibility for parental care. The main focus is on the interviewees' rationales for the participation or non-participation of their siblings in the parents' care. Almost all the interviewed carers stated that the division of care responsibilities is unequal and that they are the primary carers, but the majority did not convey any clear intention to try to persuade their siblings to increase their participation in parental care. In many cases, the siblings were described either as entirely absent or as providing occasional backup, but some interviewees reported that caring for the parent(s) was shared with their other siblings. Consequently, three participation patterns were identified: ‘absence’, ‘backup’ and ‘togetherness’. All the interviewees offered rationales for the unequal division of care tasks and responsibilities among the siblings. The discussion focuses on these rationales and their variations by participation patterns, and considers the similarity of the findings to those from previous American and British studies. The study concludes that social-care services should take the primary carer's siblings into consideration, although not always as a ‘resource’. It should not be taken for granted or assumed that the primary care-giver receives help from her or his siblings, even if their relationship is otherwise close and unproblematic.

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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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Poetry, philosophy and dementia

Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers.

Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory.

Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships.

Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial.

Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young.

Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.

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Family care-giving and decisions about entry to care : a rural perspective

The aim of this qualitative study was to explore rural family carers' experiences of the nursing home placement of an older relative. The study was undertaken in a large Health and Social Care Trust in Northern Ireland using a grounded theory approach. Purposive sampling was used to initiate data collection and thereafter theoretical sampling was employed. Semi-structured interviews were conducted with 29 relatives of nursing home residents and the resultant data were recorded, transcribed and analysed using constant comparisons. The software package, QSR NVivo, was used to facilitate data management and retrieval. Older people had deep attachments to their homes and entry to care was a last resort. Rural family carers had close relationships with health- and social-care practitioners and felt supported in the decision-making process. The choice of home was a foregone conclusion for carers who had a strong sense of familiarity with the nursing homes in their area. This familiarity was influenced by the relatively rural communities in which respondents resided and by an efficient ‘grapevine’, which seemed to thrive in these small communities. This familiarity, in turn, influenced the choice of nursing home, timing of the placement and responses of family carers. The findings indicate that issues such as rurality and familiarity warrant a more detailed exploration in future research on entry to care.

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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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Dyadic relationship scale: A measure of the impact of the provision and receipt of family care

Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient α =.84; caregiver α =.89) and positive dyadic interaction (patient α =.86; caregiver α =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.

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Continuing to care

Reports on a collaborative study of carers from across North Wales, whose relatives have moved to live in a care home. Interviews were conducted with 78 family carers whos relative had been recently admitted into a care home. Follow-up interviews were conducted 10-12 months later with a sub-sample of 29 carers. Discusses the the carers experiences and the implications for staff working in care homes. The research was conducted by the Centre for Social Policy Research and Development, University of Wales and the Princess Royal Trust for Carers.

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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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Abuse of female caregiver by care recipients: another form of elder abuse

This article focuses on the abuse of ageing caregiving women (55 years or older) by the spouses or parents for whom they provide care. Data presented were derived from a study of the dynamics of family caregiving focusing on Mexican American and Anglo caregiving dyads. Analysis focused on identifying correlates of abuse from a group of variables that represented the structure and context of caregiving. Data suggests the problem is not trivial and the interactional context of caregiving is the most promising aspect for explanation, intervention, and prevention.

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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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myShoes - the future of experiential dementia training?

Purpose – The purpose of this paper is to discuss the use of virtual reality (VR) for experiential learning in dementia training. People have different perceptions and understanding of what it is like to live with dementia, particularly those that are new to dementia care, whether in a professional capacity, or as a friend or family member. Arguably the most powerful way in which to enhance understanding is to give people a glimpse of what living with dementia might be like.

Design/methodology/approach – The myShoes project aimed to create a resource that would augment a virtual environment and expose the user to an experience that gives them a sense of what living with dementia might be like. The resource was created using the latest VR and game development software. A sample group of students from a mixed range of health professions tested the resource providing in depth feedback on its immediate impact and ideas for further development.

Findings – Notwithstanding the limited sample on which the simulation has been tested, carefully designing the activities and constructing a learning space that allows for reflection on being placed temporarily in another person’s shoes, appears to have enabled students to think beyond ‘treatment, to considering how the person might feel and altering their approach accordingly.

Research limitations/implications – This is a pilot study. More research using VR as a training resource is planned.

Practical implications – The study will support educational training, particularly that which uses virtual reality for clinicians and carers.

Social implications – The adoption of a VR approach to training formal and informal carers has potential to enhance empathy and improve holistic care of people with dementia.

Originality/value – The myShoes project adopts a novel approach to simulating the effects of dementia for training purposes.

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Does blaming the patient with lung cancer affect the helping behavior of primary caregivers?

Purpose/Objectives: To examine whether primary caregivers' helping behaviors are predicted by their illness attribution reactions as proposed in Weiner's model.

Design: Latent-variable structural equation modeling. Setting: Five oncology outpatient settings in central Canada. Sample: 100 dyads consisting of patients with lung cancer and their primary caregivers. Methods: Self-report questionnaires, abstracted medical record data, confirmatory factor analysis, and structural equation modeling. Main Research Variables: Smoking history, judgments of responsibility for controlling the disease, anger, pride, and helping behaviors.

Findings: An interrelation was seen between judgments of responsibility toward patients to control aspects of the disease, affective reactions of anger and pride, and helping behavior. Anger and pride had a stronger influence on helping behavior than smoking history did.

Conclusions: Judgments of responsibility for controlling lung cancer and anger toward patients put caregivers at risk for dysfunctional helping behavior, particularly if patients had a history of tobacco use.

Implications for Nursing: Primary caregivers' affective states directly affect their helping behavior toward patients with lung cancer. Clinicians should be aware that caregivers who perceive the patient to be largely responsible for managing the disease also may be angry toward that patient. Angry caregivers are at risk of providing suboptimal helping behavior.

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Debates in the House of Commons

The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.

Support to family carers of patients with frontotemporal dementia

OBJECTIVES: To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support. METHOD: Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers. RESULTS: Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing homes (p = 0.04). Carers of patients with frontotemporal dementia were significantly less satisfied with the provision of information about the disease compared with carers of early onset Alzheimer's disease patients (p = 0.05) and were significantly less satisfied with counseling and follow-up advice (p = 0.05). CONCLUSION: Changes of personality in patients with frontotemporal dementia may be the major reason why they were offered more stays in institutions. These family carers tend to be less satisfied with the provision of support they received from the specialist health service compared to carers of Alzheimer's disease patients, and are in need of more, and other forms of support.

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Partners in care: sharing

INTRODUCTORY NOTE

My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.

The article was originally written along with two or three others as a result of a commission from Suffolk Carers for their magazine. This was some time before Pauline’s death. In ‘Sharing’, I tried to encapsulate the story of our marriage and the effect that Alzheimer’s disease had had on that relationship. However, the writing took over from the concept and it became too much of a personal statement about us for me to be happy about it being read by others while Pauline was still alive but unable to contribute, so I didn’t offer it for publication but filed it away. I think the writing was, in any case, a sort of much-needed therapy for me at that time.

Philip Ingram July 2003

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Brief psychotherapy in Alzheimer's disease: randomised controlled trial

Although there is good evidence that interventions for carers of people with Alzheimer's disease can reduce stress, no systematic studies have investigated psychotherapeutic intervention for patients themselves. This may be important in the earlier stages of Alzheimer's disease, where insight is often preserved.

The aim was to assess, in a randomised controlled trial, whether psychotherapeutic intervention could benefit cognitive function, affective symptoms and global well-being.

Individuals were randomised to receive six sessions of psychodynamic interpersonal therapy or treatment as usual; cognitive function, activities of daily living, a global measure of change, and carer stress and coping were assessed prior to and after the intervention.

No improvement was found on the majority of outcome measures. There was a suggestion that therapy had improved the carers' reactions to some of the symptoms.

There is no evidence to support the widespread introduction of brief psychotherapeutic approaches for those with Alzheimer's disease. However, the technique was acceptable and helpful individually.

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Who will care for the oldest people in our ageing society?

The number of informal carers for frail elderly people is set to fall steeply. Jean-Marie Robine and colleagues propose a new way to assess the trend that should help policy makers plan for the deficit

The authors suggest that the demographic indicators used for studies of population aging based on a three age group population model (young people, working age people and elderly people) should be changed to reflect the effect of the change in population age structure on intergenerational relationships. A four age group population model of young people, working age people, younger retired people and the oldest people will reflect this. Younger retired people increasingly help care for very elderly people through informal care. The number of informal carers for the frail elderly is set to drop and this assessment will reflect that trend for policymakers.

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Informal caregivers' participation when older adults in Norway are discharged from the hospital

This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community.

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In our own words

Looks at what user consultation and empowerment mean to service users and carers themselves.

Family voices: life for family carers of people with intellectual disabilities in Ireland

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.

Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.

Results: Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.

Conclusions: Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions.

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Enhancing partnerships with relatives in care settings

Aim The aims of this project were to implement guidance that sought to involve carers of older people in decision-making processes, and to promote practice development through work-based learning.

Method Data were collected and analysed to examine how carer involvement was being managed on the wards. The data were then fed back to staff in each area and meetings were held to discuss which aspects of carer involvement were priorities for them. These were then matched with the four markers of satisfactory involvement identified in a previous study (Walker et al 1999).

Results Several strategies were implemented to enhance carer involvement, including life story work, written communication books and a newsletter. Early feedback from the project highlighted benefits for staff and relatives, which included greater confidence in negotiating care and closer relationships between relatives and staff.

Conclusion If carer involvement in care is to become a reality, staff need support and encouragement to develop meaningful relationships with relatives and to value their expert opinions.

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Caring for a relative with delusional beliefs: a qualitative exploration

Background: In recent years, there has been a gradual shift towards the study of individual symptom presentations in psychosis, this is particularly found in studies of delusional beliefs. However, the literature remains sparse on informal caregiver experiences of individual symptoms.

Aim: The study sought to investigate carer experiences of supporting a relative with delusional beliefs, which involve family members.

Methods: Semi-structured interviews were undertaken with five caregivers and subject to interpretative phenomenological analysis.

Results: Interviews yielded six superordinate themes highlighting issues concerning a carer's exposure to symptoms of illness; lack of understanding about their relatives' delusional beliefs; concerns over coming to harm from their relative: efforts made by the carer to conceal their relative's delusional beliefs and their consequences; fractured relationships, and a long process of learning how to best cope.

Conclusion: Caring for a relative with psychosis who experiences delusional beliefs about the carer and family members can be challenging. The results underscore the importance of providing a programme of support to meet the varied needs of informal carers with an explicit aim of assisting carers in their day-to-day problem solving. It should also help to address issues carers may have about causality, including beliefs about self-blame, and identifying effective coping strategies.

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The needs of older people with mental health problems according to the user, the carer, and the staff

Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.

Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.

Method: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs.

Results: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need.

Conclusions: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services. Copyright © 2003 John Wiley & Sons, Ltd.

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Characteristics and contributions of non-kin carers of older people: a closer look at friends and neighbours

Research on informal care-giving has largely neglected the contributions of non-kin carers. This paper investigated the characteristics and contributions of non-kin who care for older adults with a long-term health problem, and investigated friends and neighbours as distinct categories of care providers. Using data from 324 non-kin carers in the 1996 General Social Survey of Canada, this study compared individual and relationship characteristics, care tasks and amount of care provided for the two groups. Interpersonal and socio-demographic characteristics were investigated as mediators of potential differences between friends and neighbours in patterns of care. Results demonstrate that friend and neighbour carers differed on age, marital status, geographical proximity and relationship closeness. Friends were more likely than neighbours to assist with personal care, bills and banking, and transportation. Neighbours were more likely to assist with home maintenance. Friends provided assistance with a greater number of tasks and provided more hours of care per week, suggesting a more prominent role in the care of non-kin than neighbours. Age, income, a minor child in the household, proximity and relationship closeness significantly predicted amount of care provided, and relationship closeness largely explained differences between friends and neighbours. Future research on informal care-giving can build on the findings that distinguish friend and neighbour carers to further discriminate the dynamics of non-kin care.

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The decline of intensive intergenerational care of older people in Great Britain, 1985-1995

There are increasing concerns about the future availability of informal care for older people, particularly care by their children. This article explores past trends in the provision of informal care by children/children-in-law between 1985 and 1995 in Great Britain, using successive General Household Survey data. The article suggests that, during this period, there was a decline in co-resident intergenerational care and that this was associated with a decline in highly intensive intergenerational care. The article explores possible factors underlying these trends, in particular, demographic changes and changes in patterns of formal care for older people. 

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Participation in socially-productive activities, reciprocity and wellbeing in later life : baseline results in England

This paper examines whether participation in social activities is associated with higher levels of wellbeing among post-retirement age people in England, and, if so, whether these relationships are explained by the reciprocal nature of these activities. Cross-sectional analysis of relationships between social activities (including paid work, caring and volunteering) and wellbeing (quality of life, life satisfaction and depression) was conducted among participants of one wave of the English Longitudinal Study of Ageing (ELSA) who were of state pension age or older. Participants in paid or voluntary work generally had more favourable wellbeing than those who did not participate in these activities. Caring was not associated with wellbeing, although female carers were less likely to be depressed than non-carers. Carers, volunteers and those in paid work who felt adequately rewarded for their activities had better wellbeing than those who were not participating in those activities, while those who did not feel rewarded did not differ from non-participants. These results point to the need to increase the rewards that older people receive from their productive activities, particularly in relation to caring work.

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Care coordination assisted by technology for multiethnic caregivers of persons with dementia : a pilot clinical demonstration project on caregiver burden and depression

We evaluated a care-coordination project assisted by a screen-phone to support and educate caregivers. A total of 113 caregivers of home-dwelling veterans with dementia were recruited to the study: 72 were white, 32 were African American and nine were Hispanic. Caregivers were assessed for burden, depression, coping, quality of life, knowledge and satisfaction. None of the outcome measures changed significantly after twelve months. Forty care-recipient and caregiver dyads responded to the twelve-month telephone satisfaction survey. The respondents were more satisfied with the care-coordination (90 per cent) aspect of the programme than the education (77 per cent) or the monitoring (50 per cent). The pilot project suggests that care coordination aided by screen-phones may be a useful model for caregiver support in a managed-care setting. A systematic study is now required. 1 fig. 2 tables 20 refs. 

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Older carers of adults with a learning disability confront the future: Issues and preferences in planning

The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.

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Relationships between patients, informal caregivers and health professionals in care homes

Commentary on: Lindahl B, Lidén E, Lindblad BM. A meta-synthesis describing the relationships between patients, informal caregivers and health professionals in home-care settings. J Clin Nurs2011;20:454–63.

Implications for nursing practice

  • Care delivery in the home creates a unique and potentially challenging set of relational issues for the nurse, client and informal carer.

  • The communication skills, values, attitudes and behaviours of the nurse are influential in determining the dynamic of the nurse-client-informal carer relationship in the home.

Implications for nursing research

  • Further research is needed to examine the views of stakeholders on the factors that influence nurse-client-informal carer relationships in the home-care setting.

  • Further research is needed to examine the success of interventions to promote positive relationships among stakeholders in the home-care setting.

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Caring about carers: only half the picture

This article examines the government's strategy for carers and considers its significance for people in informal caring relationships. It argues that although it contains important and innovative measures, the strategy does not address adequately the complex nature of caring relationships nor does it take account of the perspectives of people who receive care. There is a danger, therefore, that the strategy will be divisive. However, the recognition that caring is a widespread activity is welcomed.

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When Harry met Barry, and other stories: a partner's influence on relationships in back pain care

This study forms part of a longitudinal investigation of pain, disability and health care use in primary care low back pain consulters. Sixteen purposively sampled patients and their health care professionals were interviewed about experiences with back pain and their therapeutic relationships. This case study draws on the accounts of one patient, his wife, and three health care professionals and explores the role of the informal carer in back pain care. The interview with the patient and his wife highlights the dynamics of a co-constructed narrative of back pain. The joint narrative is fundamentally supportive of the patient's condition, yet his wife's preference for a proactive approach to health care is undermined by the patient's unquestioning respect for health professionals. In addition, the patient's limited expression—of his suffering and his feelings regarding care received—results in less beneficial care where opportunities remain unfulfilled and problems unresolved. His wife's role as narrator of his pain provokes different reactions from health professionals and these are discussed. Analysis reveals a positive and mediating role for informal carers within the provision of health care. However, the construction of the patient's limited expression in opposition to his wife as an ‘expert carer’ raises issues around these roles in the therapeutic encounter that require further exploration. To use supportive relationships effectively there is a need to better understand the interplay between the patient and carer roles, how these roles are negotiated in the health care consultation, and the possible contradictions that this poses.

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The experience of shame in older psychiatric patients: a preliminary enquiry

Shame is a complex set of attitudes, feelings and behaviours that tend to motivate hiding and, if provoked, can lead to conflict with others. It is also related to the exercise of power within the relationship of care and therefore may be a relevant factor if older adults are forced to accept increased dependency. There are no systematic enquiries into shame processes and older psychiatric patients. The experience of trait and situational shame and psychopathology was explored with 50 older psychiatric patients, using a range of questionnaire measures. As predicted, trait shame correlated significantly with anxiety and depression scores. There was preliminary evidence to suggest that being in need of others may be shame-provoking for some patients and may have a bearing on why some patients fear dependency, conceal symptoms and have conflicted relationships with carers.

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A life like any other? Human rights of adults with learning disabilities: seventh report of session 2007-08: volume 1: report and formal minutes (HL 40-I; HC 73-i)

The report by the Joint Select Committee on Human Rights paints an often harrowing picture of neglect, abuse and the denial of fundamental human rights to adults living with learning disabilities in the UK. Evidence received by the Committee reveals that people with learning disabilities are more vulnerable to abuse and are less likely to understand their fundamental human rights, including to be treated with dignity and respect by public authorities. Adults with learning disabilities and their advocates and carers told the Committee about how people were denied the opportunity to conduct their own lives as any adult would take for granted including the ability to form and conduct relationships.

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Self and carer perspectives of quality of life in dementia using the QoL-AD

OBJECTIVE: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings.

METHODS: We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer's Disease scale, demographics, data on self-rated health, and clinical characteristics.

RESULTS: Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher.

CONCLUSIONS: The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright © 2014 John Wiley & Sons, Ltd.

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A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.

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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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Knowledge generation about care-giving in the UK: a critical review of research paradigms

While discourse about care and caring is well developed in the UK, the nature of knowledge generation about care and the research paradigms that underpin it have been subjected to limited critical reflection and analysis. An overarching synthesis of evidence – intended to promote debate and facilitate new understandings – identifies two largely separate bodies of carer-related research. The first body of work – referred to as Gathering and Evaluating – provides evidence of the extent of care-giving, who provides care to whom and with what impact; it also focuses on evaluating policy and service efficacy. This type of research tends to dominate public perception about caring, influences the type and extent of policy and support for carers and attracts funding from policy and health-related sources. However, it also tends to be conceptually and theoretically narrow, has limited engagement with carers' perspectives and adopts an atomistic purview on the care-giving landscape. The second body of work – Conceptualising and Theorising – explores the conceptual and experiential nature of care and aims to extend thinking and theory about caring. It is concerned with promoting understanding of care as an integral part of human relationships, embedded in the life course, and a product of interdependence and reciprocity. This work conceptualises care as both an activity and a disposition and foregrounds the development of an ‘ethic of care’, thereby providing a perspective within which to recognise both the challenges care-giving may present and the significance of care as a normative activity. It tends to be funded from social science sources and, while strong in capturing carers' experiences, has limited policy and service-related purchase. Much could be gained for citizens, carers and families, and the generation of knowledge advanced, if the two bodies of research were integrated to a greater degree.

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Employment and caregiving: exploration of African American caregivers

To more completely understand the challenges African American families face when combining employment commitments and informal caregiving responsibilities, the authors used data from a community sample of 119 African American elder-caregiver dyads. This article examines the nature of caregiving relationships and extent to which caregivers' employment statuses affect the hours of care provided. The authors concluded that employed caregivers do not provide significantly less care than do unemployed caregivers, elderly people with employed caregivers are no more likely than those with unemployed caregivers to use formal services, and unemployed caregivers may remain unemployed partly because of caregiving responsibilities.

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Children in exclusion zone

The author argues that funding for young carers' support should be ring-fenced to avoid that possibility that British councils may use the budget to fend off the next budgetary crisis. He describes young carers as children who take on responsibility for their families, acting as main carers for their disabled or chronically ill parents and siblings. The government has funded initiatives to support young carers. However, he notes that government aims to transfer this funding to local authorities.

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Futures planning for people with learning disabilities living with older family carers

People with learning disabilities are increasingly outliving their parents. To avoid traumatic and inappropriate transitions from the family home in later life, services need to improve their relationships with families. Practical examples are given of how families are being supported to face the future. 

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Employers' knowledge and attitudes regarding organizational policy toward workers caring for aging family members

The study examined employers' knowledge of and attitudes toward working carers who care for aging family members. The study was based on the ecological model. One hundred employers were interviewed using structured questionnaires and 13 employers by additional in-depth interviews. Both research instruments included areas of disruption to the organization, existing policies, and feasibility as to developing appropriate policies to support working carers. Results show that caregiving caused a disruption in workers' functioning mainly by being absent, leaving work early, and coming to work late. Usually, there was “no policy,” and half of the employers did not support introducing such a policy. Women managers in public organizations, who had less seniority and less previous experience with working-carers, tended to be more positive about supportive policies. Recommendations are included.

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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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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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Use of Alzheimer family support group by community-residing caregivers

This paper describes the author’s experience as a new co-facilitator for an Alzheimer’s Disease Family Support Group and reviews the preliminary phase of group practice and the dynamics of the beginning phase of co-facilitating the Alzheimer’s Family Support Group. The paper reviews the needs that Alzheimer Support Group would meet, purpose of the group, agency and sponsorship support for Alzheimer Support Group, recruitment, group composition, group timing and structure, leadership of group, orientation of group members, content of group meetings, group sessions, and anticipated obstacles, and concludes with the importance of empowerment-oriented social workers who share the message that change is possible with others who are struggling, while working side-by-side with them to achieve changes and provide a new beginning – a new path for caregivers – a path of self discovery. As Alzheimer’s disease progresses caregivers and loved ones of people with the disease are often challenged on a daily basis – emotionally, mentally, and physically. Being with other people in similar situations encourages group members to share information, exchange coping skills, give and receive mutual support, vent their frustrations and share their success stories. Caregiving for a person with cognitive impairments can be a very diffi cult task, but knowing that you are ‘all in the same boat’ provides the life preserver to the caregiver – giving nourishment to the soul.

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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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‘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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The relative importance of factors affecting the choice of bathing devices

There is only a small evidence base to draw upon when choosing assistive devices. Evaluations such as those funded by the Medicines and Healthcare products Regulatory Agency,* Department of Health, United Kingdom, generate data from which evidence-based guidelines can be compiled, but it is often difficult to determine the relative importance of the various factors involved.

To explore the relative importance of the factors related to the choice of bathing devices, the Delphi technique was employed. Thirty respondents were recruited following a formal evaluation of bath cushions and agreed to participate in the study (5 users, 10 informal carers and 15 professional care assistants), with 14 completing the process.

Three rounds were conducted, in which the respondents were asked to review a list of factors to consider when choosing bathing devices, to indicate the most important, to rank them and to comment on the results.

The safety of the user was reported to be the primary concern. The factors that eased the care assistant's task were regarded as less important, but several respondents remarked on the interrelationships between the factors. The ranking of the factors may jeopardise a comprehensive consideration of all the needs assessed, especially with people who have complex requirements. The limitations of the Delphi technique in such situations are discussed.

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What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers

Background: The evaluation of multi-dimensional outcomes such as health-related quality of life (HRQL) is particularly relevant in dementia where the disease can compromise all areas of functioning. The nature of dementia can make self-report difficult, yet the subjective nature of HRQL makes the value of proxy reports limited. Previous work suggests that there are domains of HRQL that are unique to dementia. We aimed to develop a conceptual framework of HRQL in dementia from the perspective of people with dementia and their carers and to examine differences in the reports of the HRQL of these two groups.

Methods: We combined existing literature and new qualitative data to develop the conceptual framework and analysed qualitative data using content analysis.

Results: We identified five domains: daily activities and looking after yourself, health and well-being, cognitive functioning, social relationships and self-concept, and each was defined by specific descriptive components. There were differences between people with dementia and carers in the way they described these domains.

Conclusions: We have developed a conceptual framework of HRQL in dementia that incorporates the views of people with dementia and their carers. This provides the basis for the development of a new measure of HRQL in dementia (DEMQOL). Copyright © 2005 John Wiley & Sons, Ltd.

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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 immediate needs of relatives during hospitalisation of acutely ill older relatives

The main aim of this study was to explore the immediate needs of the relatives of acutely ill older people during hospitalisation. The research question posed was: ‘What are the immediate needs of the relatives of acutely ill older people in the hospital setting?’

A descriptive qualitative approach was utilized, with ethnographic data collection methods and thematic data analysis. Unstructured interviews were conducted with relatives of older people who were admitted for acute care. The setting for the study included two large tertiary referral hospitals located in two area health services in New South Wales, Australia.

Analysis of data revealed two themes: being informed and being there. Being informed describes the nature of the information that relatives need and why this is so important to them. Being there illustrates how relatives perceive their roles and responsibility during hospitalisation. It highlights the importance of this and the impact it has on individuals

The findings highlight the importance of appreciating the family’s experiences in relation to the care of their older family member. They point to the need for education of stakeholders to focus on relatives as well as the older patient, improved assessment incorporating a whole of family approach on admission to hospital, and finally, facilitating positive relationships between ward staff and families.

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Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers’ and recipients’ relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers’ knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and ‘family’ in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.

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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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Supporting carers during assessment and treatment unit admissions

Purpose – Currently there is no research that explores professionals’ perspectives in supporting carers of a person with an intellectual disability during their relatives admission to a specialist in-patient setting. The purpose of this paper is to report the findings from the second stage of a study that explored the experiences of family carers whose relative was admitted to a specialist National Health Service assessment and treatment unit (ATU) in Wales, UK (James, 2016).

Design/methodology/approach – Aim: to obtain the views of professionals in relation to what they consider are the barriers and facilitators to addressing some of the experiences discussed by carers. Methods: nine professionals working in intellectual disability-specific services participated in four semi-structured interviews and one focus group (n=5) and the data were analysed using a descriptive thematic analysis process.

Findings – Three major themes were developed to represent what professionals identified as a number of individual, organisational and practical facilitators and barriers to the provision of support to carers at this time. Professionals recognised the important role they have in developing relationships with carers during the admission. Key to this relationship is effective communication, collaboration, involvement and the need to be consistently open and honest.

Research limitations/implications – The small sample size could be said to be a weakness and unrepresentative and practice of other professionals. However, what professionals reported had similarities to the findings from other related research. Importantly, the findings have a practical significance in that they can be used to raise awareness and be used to inform the development of future research and practice. The sample could also be criticised for not having representation from a wider range of professionals from across the multi-disciplinary team. However, a strength of the sample is that it did have representation from three different professional disciplines with different roles and responsibilities.

Practical implications – Currently there is very limited research exploring the experiences of professionals in respect of supporting carers during the admission of a relative to a specialist in-patient setting. Professionals demonstrated an understanding of the impact that the additional needs and admission of their relative to an ATU could have on carers. Accordingly, they were able to recognise the important role that they, and other professionals, play in developing relationships as part of providing support to them during this time. Key to these relationships was effective communication and in particular the need to be consistently open and honest.

Social implications – The findings from this study illustrate a gap between the rhetoric of policy, legislation and carer strategies, and practice of valuing and respecting the role that carers. Of particular concern is that some of the relationships that carers have had with professionals have threatened rather than positively endorsed and augmented their role and identity. These engagements with professionals therefore have had a profound effect on the way in which they have understood their value as a carer and their own sense of self. Significantly, the actions and behaviours of professionals play a key role in shaping carers views of themselves and their identity.

Originality/value – Currently there is no research that has explored the views of professionals in respect of support and relationships with carers at this time. The synthesis of findings from stage one of this study with professionals’ perspectives of resulted in the identification of similarities and differences in experiences as well as facilitators and barriers to support provision. In so doing, it has given clear application of the studies findings to practice. This study therefore provides an original contribution to the understanding of this area of carer experience, from the perspectives of professionals and adds to the wider literature exploring the family carer experience.

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Partners in care: being equally different: lesbian and gay carers

The images of other people we see on a daily basis in the media invite us all to compare ourselves with, identify with, or aspire to be like whoever is shown. Mostly this activity is of little significance and hardly touches our lives, but the further we know ourselves to be different from the norm then the more challenging those differences become to us.

This article describes the Lesbian and Gay Carers’ Network. The author argues that there remains a deep need within the health and social service sector, and indeed in the residential home sector, to learn more about us as ‘gay’ people, to learn how to empathise so that they feel safe to talk about their relationships and needs, and to encourage them to request help without feeling threatened. When society achieves that then the need for ‘gay’ people to act  as a network will decrease, but society is  long way from that goal at present.

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An experimental study on the effectiveness of a mutual support group for family caregivers of a relative with dementia in mainland China

When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.

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Understanding the use of respite services among informal carers

Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.

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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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Networks of informal caring: a mixed-methods approach

Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.

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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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Working across the interface of formal and informal care of older people

This chapter explores working partnerships with carers of older people and particularly carers in full or part-time employment who may have many stresses and conflicting demands in their lives. The legal and social context of caring is traced from The NHS and Community Care Act (DH, 1990) and subsequent care in the community initiatives. Another milestone was The National Strategy for Carers (DH, 1999a), though there has only recently been a government commitment to partnership with carers against very patchy previous provision. Six reasons are advanced for the relative powerlessness of carers compared to service providers. There are 5.2m carers in England and Wales and 1m of these providing over 50 hours of care weekly. There is a brief outline of the caring experience and three individual case studies. The National Strategy for Carers identified four rights for carers in maintaining their own health and lifestyles and how partnerships with service providers might operate, in addition to support services. [...]

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A survey exploring the provision of carers' support in medium and high secure services in England and Wales

Although the focus on carers has increased in general psychiatry, the same cannot be said for forensic psychiatry. This is despite the fact that carers of mentally disordered offenders may experience additional pressures including in some cases, being the victim of the patients' crime. A survey of medium and high secure units in England and Wales was conducted to investigate support provided to carers of mentally disordered offenders. Most units provided some form of support, but there was variation in the types and amount of support provided. Services identified benefits of providing carer support that included improving relationships and communication between staff and carers and improving patient and carer well-being. Difficulties providing support included logistical problems such as a lack of resources and stakeholder issues such as carers' previous negative experiences with mental health services. Recommendations are offered for units hoping to improve the service they provide to carers of mentally disordered offenders.

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Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: a longitudinal feasibility study

Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups

Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.

Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.

Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.

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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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'Your friends don't understand': invisibility and unmet need in the lives of 'young carers'

This paper is based on a study of the experiences of people identified as 'young carers', commissioned by the National Assembly for Wales as part of a wider review of carers' needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible. It then goes on to explore some of the wider implications of this and other research for the identification and support of 'young carers' and their families, and for the understanding of the needs and wishes of children and young people so defined. The paper concludes with an alternative definition of a 'young carer' and with some recommendations for professional practice, suggesting that the role of social work is crucial in this area of service.

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Perceived caring needs in patient-partner dyads affected by heart failure: A qualitative study.

Aims and objectives To explore the perceived caring needs in patient-partner dyads affected by heart failure to develop an understanding of potential areas of support. Background Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused. Design A qualitative study design was used. Methods Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55-89 years and partners' ages ranged from 48-87 years. Data were analysed using qualitative content analyses. Results The dyads perceived that caring needs could be summarised in two themes ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ and ‘Dyads perceive a need to share burden and support with each other and others’. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others. Conclusions There is a need to improve education and support for patient–partner dyads affected by heart failure. Relevance to clinical practice The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.

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Understanding the caring capacity of informal networks of frail seniors: a case for care networks

Population ageing and constraints on public sector spending for older people with long-term health problems have led policy makers to turn to the social networks of older people, or the ‘informal sector’, as a source of long-term care. An important question arising from this policy shift is whether these social networks have the resources to sustain the high levels of care that can be required by older people with chronic health problems. In the face of both dire warnings about the imminent demise of the informal sector, and concurrent expectations that it will be the pillar of community long-term care, it is timely to undertake a critical analysis of the caring capacity of older people's social networks. In this paper we argue that the best way to understand the caring capacity of informal networks of frail older people is to establish their membership and caring capacity. It is useful to make conceptual distinctions between ‘social’, ‘support’, and ‘care-giving’ networks. We argue that transitions of networks from social through support to care roles are likely to show systematic patterns, and that at each transition the networks tend to contract as the more narrowly defined functions prevail. A focus on ‘care networks’, rather than the more usual ‘care dyads’, will move forward our understanding of the caring capacity of the informal sector, and also our ability to forge sound social and health policies to support those who provide care.

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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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Communication skills: forming and maintaining relationships with service users, carers, professionals and others

This resource looks at the benefits that are gained from the relationships that are built within social work. Using the voices of service users, carers and workers you will hear accounts of how the relationships that were created helped them to deal with the difficulties they faced.

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Caregiver Experience During Advanced Chronic Illness and Last Year of Life

Objectives To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses-advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers. Participants Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n = 62) or end-of-life (EOL; n = 62) care recipient-caregiver dyads. Measurements Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances. Results During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.

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A long-term support group for people with dementia

This article reports the evaluation of a 24-week support group for people with recently diagnosed dementia.  The group was evaluated in four ways: transcript analysis of group sessions, interviews with participants and carers about the group at 8 and 20 weeks from the start of the group, rating of the importance of eight therapeutic factors by participants, carers and group leaders, mood scales completed by participants and their carers before the group and at 8 and 20 weeks after it started.  The evaluation suggests that as the group progressed, participants became more positive about using strategies for coping, group cohesion increased, they started to help each other solve problems, and they talked more about their social relationships and concern about the effect of their illness on their families.

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A support group for caregivers of patients with frontotemporal dementia

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

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Call us carers: limitations and risks in campaigning for recognition and exclusivity

This article comments on the current campaign by carers’ organizations for the title of carer to be used exclusively in connection with unpaid caring. This campaign is analysed in the context of recent developments in policies on unpaid caring and broader debates concerning recognition campaigns, identity and solidarity with others. It is argued that success for carers in terms of securing better benefits and services has been partial and limited and that there are problems in linking demands for recognition with demands for improved material conditions. It is also argued that this particular campaign is likely to prove counterproductive, not only for carers but also for others in caring relationships, including paid carers and people in need of support.

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Transitions at the end of life for older adults: patient, carer and professional perspectives : a mixed-methods study

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting: England.

Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

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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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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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His helping hands - adult daughter's perceptions' of fathers with caregiving responsibility

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers “masculine authenticity”, all of them appear to cherish “his helping hands” as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional ‘male activities’ and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

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The Experiences of Children Living with and Caring for Parents with Mental Illness

This research provides a three-way perspective on the experiences & needs of children who are living with & caring for parents with severe & enduring mental illness. The views of children, parents & key workers were sought in order to provide deeper insight into the needs of families & the nature of interfamilial relationships, as well as the relationships between service users & providers. Child protection & medical research has long proposed a link between parental mental illness & the risk to children of abuse, neglect & developmental delay. The inevitability of risk associations is challenged by the research described here & outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent-child relationships. References. [Copyright 2006 John Wiley and Sons, Ltd.]

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Illness careers and continuity of care in mental health services: a qualitative study of service users and carers

Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.

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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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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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'Ageing-in-place': Frontline experiences of intergenerational family carers of people with dementia

The success of 'ageing-in-place' aged care policy in Australia relies heavily on the unpaid work of informal carers. While there is a wealth of research regarding informal carers more generally, we know relatively little about the experiences of the 'sandwich generation': Adult children (mainly daughters) who provide care for a parent while often juggling paid work and the care of their own children or grandchildren. In this paper I undertake a critical analysis of 'ageing-in-place' policy through the lens of 'sandwich generation' carers of people with dementia. Drawing from a composite case study, I argue that these carers are located at the interstices of powerful discourses such as 'individualisation' and 'care' and explore how the everyday practice of care is negotiated within these spaces. Inhabiting these spaces can be costly for carers and we need to consider how policies can better support intergenerational carers if 'ageing-in-place' is to be sustainable.

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Carers included

The Triangle of Care: Best Practice Guide on Acute Mental Health Care, which promotes the essential three-way relationship between professionals, service users, their carers and families is briefly discussed. The approach was developed by carers and staff who wanted to improve carer engagement in acute inpatient and home treatment services. It emphasises the need for better local strategic involvement of carers and families in the care, planning, and treatment of people experiencing mental ill health and calls for better partnership working between service users, their carers and organisations in order to achieve the best possible outcomes. Adopting the Triangle of Care will ensure the views of carers are heard. The guide offers key principles, resources and examples of best practice to influence services and other people working with carers to be more effective in involving them within acute care and recognises that this will greatly benefit staff, service users and carers themselves.

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A dimensional analysis of caregiver burden among spouses and adult children

Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. Design and Methods: This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. Results: Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. Implications: We discuss the research and practice implications of the differing needs of spouses and adult children.

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Compulsive hoarding: a qualitative investigation of partner and carer perspectives

Objective: This study explores the experiences of family members caring for a person who compulsively hoards.

Design: Ten participants, all ‘key carers’ for a hoarding family member, were interviewed using a semi-structured interview schedule designed for the purpose of the study.

Methods: Transcribed interviews were analysed using interpretive phenomenological analysis.

Results: Five superordinate, discrete but interconnecting themes were identified: ‘loss of normal family life’; ‘the need for understanding’; ‘coping with the situation’; ‘impact on relationships’; and ‘marginalization’. Carers' accommodation of hoarding behaviours and role isolation were examined in drawing connections between themes. Outlying themes suggesting factors protective of relationships and facilitating coping were also identified.

Conclusion: Carers struggled to cope with both the environmental and interpersonal impacts of the hoarding. Lacking both formal and informal networks of support, carers are in need of information and treatment options for themselves and their families. Possible avenues for future clinical and theoretical research are suggested.

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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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The pressures felt by informal carers of people with dementia

Caring for people with dementia is complex and demanding, and informal carers carry out much of the care. In this article, Madeline Armstrong outlines the different types of dementia and discusses the psychological approaches to care. Informal carers experience many stressors when caring for people with dementia and Admiral nurses play an important role in supporting carers.

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Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008)

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.

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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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Working together-apart: Exploring the relationships between formal and informal care networks for people dying at home

Introduction: Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together.

Methods: Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants.

Findings: Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice.

Conclusion: Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

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Distressed fathers and their children: A review of the literature

Background: Many men diagnosed with mental health problems are also fathers. This literature review addresses issues relating to both the fathering role taken on by men who have mental health problems as well as the impact of their mental health on their children. Material: An integrative review of the literature was conducted from studies originating in four countries, resulting in an analysis of 31 journal articles. Discussion and conclusions: Most of the quantitative literature focuses on the many risks and negative outcomes for children. However, qualitative studies suggest positive outcomes such as strong parent-child relationships, which demand further attention both in research and in practice. [Reprinted by permission of Sage Publications Ltd., copyright holder.]

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Focus group study of service user and carer experience of an integrated care pathway

Integrated care pathways (ICPs) are prearranged processes of care that are being increasingly used to deliver mental health services. The literature to date reveals relatively little about service user and carer experience in relation to their use. This study was completed as part of case study research and focused on the experiences of service users and carers gathered using focus groups, as a unit of analysis. The findings revealed a number of contrasts including the perspective that people did not feel that their care was individualized to them, although among them they had different perceptions of the care process. Conclusions suggest that mental health ICPs need to reflect the relationships between stakeholders, variability of illness and individual ways of living if they are to provide a framework for managing care which is responsive to the needs of people using mental health services.

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Carer assessment : continuing tensions and dilemmas for social care practice

Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.

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Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other?

Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.

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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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A lifetime of caring: Dimensions and dynamics in late-life close relationships

This review of research on close relationships in old age is informed by principles of life span developmental psychology and life course theory in sociology. It begins with an elaboration of life span and life course concepts as applied to relationships and an analysis of the multiple forms that caring can take. The discussion continues with presentation of research on the effects of sociohistorical contexts on relationships in old age and studies of the effects of personal development and life events on relationships as well. A section examining problems in late-life close relationships is followed by examples of new directions for research on the intersections of personal development and close relationships.

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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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Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

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The impact of caring for adults with intellectual disability on the quality of life of parents

Background Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full-time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions  Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.

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'Sustaining Place' - a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds

Aims and objectives: This paper presents a theory explaining the processes used by informal carers of people with dementia to mange alterations to their, and people with dementias' relationships with and places within their social worlds.

Background: Informal carers provide the majority of care to people with dementia. A great deal of international informal dementia care research is available, much of which elucidates the content, impacts and consequences of the informal caring role and the coping mechanisms that carers use. However, the socially situated experiences and processes integral to informal caring in dementia have not yet been robustly accounted for.

Design: A classic grounded theory approach was used as it is designed for research enquiries that aim to generate theory illustrating social patterns of action used to address an identified problem.

Methods: Thirty interviews were conducted with 31 participants between 2006–2008. The theory was conceptualised from the data using the concurrent methods of theoretical sampling, constant comparative analysis, memo writing and theoretical sensitivity.

Results: Informal carers' main concern was identified as ‘Living on the fringes’, which was stimulated by dementia-related stigma and living a different life. The theory of ‘Sustaining Place’ explains the social pattern of actions employed by informal carers to manage this problem on behalf of themselves and the person with dementia.

Conclusions: The theory of ‘Sustaining Place’ identifies an imperative for nurses, other formal carers and society to engage in actions to support and enable social connectedness, social inclusion and citizenship for informal carers and people with dementia.

Relevance to clinical practice: ‘Sustaining Place’ facilitates enhanced understanding of the complex and socially situated nature of informal dementia care through its portrayal of informal carers as social agents and can be used to guide nurses to better support those who live with dementia.

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Supporting Families: Helping Build Resilient Children

The article focuses on the Powerhouse Project (PHP) of the Young Carers Initiative. It is aimed at promoting the well-being of young carers and their families across the Niagara and Haldimand-Norfolk regions in Ontario. Young carers, through PHP, can meet other children in caregiving roles and establish peer relationships. Information on the three goals of PHP is provided. Special PHP events for young carers include horseback riding, hikes and rock climbing.

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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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The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study

Context. Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives. To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods. Participants were 225 adult carers of patients from six U. K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results. The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion. The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice.

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Two sides of the same coin: caring for a person with bipolar disorder

The aim of this paper was to gain an in-depth understanding of the way the lives of individuals supporting someone diagnosed with bipolar disorder. Bipolar disorder is a severe, recurrent and chronic mental disorder that has a significant impact on the lives of those who experience it and the people supporting them. It is often the subsyndromal symptoms that cause major impairment in functioning and can have financial, social, interpersonal and health impacts for carers. A qualitative thematic analysis was chosen to enable an in-depth exploration of participants' experiences. Twelve participants were interviewed using a semi-structured interview and the data were analysed to identify the themes that represented the participants' experiences. The predominant theme that emerged, two sides of the same coin, described the positive and negative aspects of being an informal carer for a person with bipolar disorder. This theme is constituted by two sub-themes: (1) ‘I am a much more compassionate person’; and (2) ‘It's tough and it's a sacrifice’. Mental health nurses could support informal caregivers more by providing care that demonstrates an understanding of the complexities associated with bipolar disorder and utilizes a collaborative approach to care that actively involves informal caregivers.

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Is use of formal community services by older women related to changes in their informal care arrangements?

This paper examines how the relationships between the factors (predisposing, enabling and illness) of the 1973 Andersen framework and service use are influenced by changes in the caring role in older women of the 1921–26 cohort of the Australian Longitudinal Study on Women's Health. Outcome variables were the use of three formal community support services: (a) nursing or community health services, (b) home-making services and (c) home maintenance services. Predictor variables were survey wave and the following carer characteristics: level of education, country of birth, age, area of residence, ability to manage on income, need for care, sleep difficulty and changes in caring role. Carer changes were a significant predictor of formal service use. Their inclusion did not attenuate the relationship between the Andersen framework factors and service use, but instead provided a more complete representation of carers' situations. Women were more likely to have used support services if they had changed into or out of co-resident caring or continued to provide co-resident care for a frail, ill or disabled person, needed care themselves, and reported sleep difficulties compared with women who did not provide care. These findings are important because they indicate that support services are particularly relevant to women who are changing their caring role and who are themselves in need of care.

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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.

Working with carers in educational settings: developing innovations in practice

Purpose – It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend in hospital or residential settings. The purpose of this paper is to develop a conceptual approach to involving carers in higher education by acknowledging their contribution to improving practice and identify the impact upon student learning in mental health and social care professions. 

Design/methodology/approach – A brief review of the policy and literature on involving carers in mental health services and education explored the historical and current influences upon practice. This was then applied to the experience of the authors when teaching nursing and social work students in a higher educational setting and evaluated as developing outcomes in carer involvement practice.

Findings – Relationships between carers and students in health and social care may be created in higher education settings that can develop supportive, informative and recovery‐focused care in practice. Creating such relationships in the higher educational setting helps students to prepare for developing relationships with carers in practice. 

Originality/value – Involving carers in education may improve outcomes in recovery for the client and carer experience and the development of professional and self awareness skills in students. Developing involvement practices in higher education begins the process early in the experience of health and social care students, providing a safe environment in which to master such skills.

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The important things in life

Decisions made on behalf of people with a learning disability and their families are often made without any input from the people they affect the most. Mencap's 'Listen and Learn' consultation programme was developed to find what is important to people with learning disabilities. The consultation used surveys, focus groups and interviews with people with learning disabilities, their family members or carers, Mencap members of staff and leaders of local Mencap groups. The results of the consultation are briefly discussed under the following themes: early years and childhood; making decisions about where to live, jobs and money; support for the whole family; healthcare; participation; staying safe; and relationships. Mencap intend to use the results to inform its work and planning over the next five years.

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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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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Working lives: the role of day centres in supporting people with learning disabilities into employment

Summarises a research project jointly commissioned by the Department for Work and Pensions and the Department of Health, which explored how day centres are addressing employment, the relationships between day centres and employment related organisations, and the views and experiences of those who attend day centres and their carers. The research was undertaken to understand current provision and how employment opportunities for people with learning disabilities can be extended. The research used qualitative interviews with managers of day centres, organisations that help people into employment, people with learning disabilities in day centres and family and professional carers conducted in 9 local authorities across England.

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Consulting service users: the Stroke Association Home Therapy Project

In 1999, the Stroke Association set up a project to promote home-based occupational therapy for patients who had had a stroke and been discharged home from hospital. As part of the service evaluation, focus groups for service users and carers were set up in two of the sites to consult users about the changes in their quality of life during the period of the home therapy. A total of 11 service users and 9 carers attended the groups, representing 30% of the service users and 27% of the carers involved in the project. The group discussion was taped and transcribed and then analysed using a framework approach.

The group members described their personal experiences of recovery from and limitations after the stroke and reported improvements in life issues during the period of their home therapy. The content and organisation of the service and the relationships with project staff were felt to influence the effectiveness of the occupational therapy. Other issues that affected the perceived outcome for the service users included individual choice, age, stroke consequences, other rehabilitation and community services and social limitations. This consultation process allowed the service users to describe the strengths and weaknesses of the service and provided valuable feedback that could be used to design the content and application of future home therapy services.

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The impact of lung cancer on patients and carers

This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.

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Is There a Trade-Off Between Caring for Children and Caring for Parents?

Adult's decision to care for aging family members has an aggregate effect on public income support programs as well on as health care services and costs. Families have continuously been the primary source of support and care of elderly members. It is estimated that adult children constitute 41.3% of all informal caregivers (Wolff & Kasper, 2006). However, recent demographic trends have changed the landscape of parental caregiving by placing unprecedented levels of competing demands for care, potentially limiting the availability of adult children to provide parental care. This examination explores parental care behavior in four European countries (Norway, England, Spain, and Germany) and Israel, emphasizing a potential trade-off between care for offspring and care for aging parents.

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The birds and the bees

Sexuality and people with learning disabilities is a controversial subject. Research suggests that, although paid carers are starting to acknowledge the importance of relationships, attitudes may be more conservative among family carers and the general public. This quantitative study looked at the attitudes of each of these groups. The researchers also considered whether knowing someone with a learning disability has an impact on the views of the general public and if there were difference in attitudes towards homosexuality among the three groups. The views of 144 people from a range of religions and backgrounds were collected using the Sexuality Attitudes Questionnaire for people with Intellectual Disability (SAQ-ID). The majority of respondents were between 18 and 39 years and 68.8% were female; they were mainly recruited from care facilities and a carers’ group. A limitation of the study was the small number of family carers who chose to take part and suggestions were made for improvements to the [...]

Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature

Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.

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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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A multi-method evaluation of an independent dementia care service and its approach

Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach. The findings demonstrated that, within its approach, there was high quality of care offered by SPECAL to people with dementia and their carers. The evaluation also highlighted some of the difficulties facing SPECAL in its relationships with existing professional providers of mental health care for older people that have implications for other service providers. Recommendations from the evaluation were adopted as an agenda for future developmental work. This study has provoked broader questions for multi-disciplinary and multi-agency teams about quality of services for older people with dementia, and about relationships between the voluntary and statutory sectors.

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Patients' and carers' views on dementia workforce skills

Purpose – Through consultation with people living with dementia and carers, this paper aims to identify skills that patients and carers feel need to be developed in the workforce. This work is part of a project to develop competencies for the West Midlands dementia workforce.

Design/methodology/approach – People living with a dementia and carers were contacted through cafés, a carers' group and memory group, and two people contributed interviews to the analysis. All materials were analysed qualitatively using thematic analysis.

Findings – Feedback was received from 69 individuals. In total, six major themes were identified: knowledge about dementia, person centred care, communication, relationships, support and helping people engage in activities.

Originality/value – It is argued that people living with dementia and carers bring unique and valuable perspectives to an analysis of the skills of the dementia workforce, which grounds the required skills in the relationship between the worker and the person and family they are working with. This different emphasis needs to be considered and addressed throughout dementia training and education.

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Community relations and child-led microfinance: a case study of caregiving children in Kenya

Rampant levels of AIDS and poverty have made many children in sub-Saharan Africa the primary caregivers of their ageing or ailing guardians. This paper reports on a social action fund initiative that brought caregiving children together to set-up and run income generating activities as a group with the aim of strengthening their coping capabilities. To further our understanding of child-led microfinance activities, this paper explores how intra-community relations can both facilitate and undermine child-led activities, and how these activities in turn can further strengthen some intra-community relations. Twenty-one children (aged 12–17) and six guardians participated in this study. Data included draw-and-write compositions (n=21), essays (n=16), workshop notes and proposals (n=8) and in-depth interviews (n=16). A thematic analysis revealed that the children actively drew on the expertise and involvement of some guardians in the project as well as on each other, developing supportive peer relations that helped strengthen their coping capabilities. However, the children's disenfranchised position in the community meant that some adults took advantage of the child-led activities for their own personal gain. Some children also showed a lack of commitment to collective work, undermining the morale of their more active peers. Nevertheless, both guardians and the children themselves began to look at caregiving children differently as their engagement in the project began to earn them respect from the community – changing guardian/child relations. The paper concludes that microfinance interventions targeting children and young people must consider children's relationships with each other and with adults as key determinants of Project success.

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Categories and their consequences: Understanding and supporting the caring relationships of older lesbian, gay and bisexual people

This article advocates incorporating biographical narratives into social work practice involving older lesbian, gay and bisexual service users. Offering a critique of ‘sexuality-blind’ conditions in current policy and practice, the discussion draws on qualitative data to illustrate the potential benefits of narrative approaches for both practitioners and service users.

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Baby-boomers and the ‘denaturalisation’ of care-giving in Quebec

The North American post-war generation, known as the baby-boomers, has challenged traditional family relations and the sexual division of labour. How do these challenges play out in the face of frail, ill or disabled family members? A study undertaken in Montreal, Quebec, with baby-boomer care-givers aimed to raise understanding of the realities of this group. We met with 40 care-givers for a one and a half-hour qualitative interview to discuss their identification with their social generation, their relationship to care-giving, their values regarding care-giving, and the reality of the care-giving they offer. The findings indicate that women, in particular, no longer identify themselves mainly in terms of family. For most, care-giving is not their only or even their dominant identity. They are actively trying to maintain multiple identities: worker, wife, mother, friend and social activist, alongside that of care-giver. They are also participating in the very North American process of individualisation, leading to what we call the ‘denaturalisation’ of care-giving. Notably, the women we met with call themselves ‘care-givers’ and not simply wives, daughters or mothers, denoting that the work of care-giving no longer falls within the realm of ‘normal’ family responsibilities. These care-givers thus set limits to their caring commitments and have high expectations as to services and public support, while still adhering to norms of family responsibility for care-giving.

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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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Trajectories of quality of life in early-stage dementia: individual variations and predictors of change

Background: Little evidence is available about how quality of life (QoL) changes as dementia progresses.

Objectives: We explored QoL trajectories over a 20-month period and examined what predicted change in QoL.

Method: Fifty-one individuals with a diagnosis of Alzheimer's, vascular or mixed dementia (people with dementia (PwD)) participating in the Memory Impairment and Dementia Awareness Study rated their QoL using the QoL-Alzheimer's Disease Scale at baseline and at 20-month follow-up. PwD also rated their mood and quality of relationship with the carer. In each case, the carer rated his or her level of stress and perceived quality of relationship with the PwD.

Results: There was no change in mean QoL score. Nearly one-third of PwD rated QoL more positively at 20-month follow-up and nearly one-third rated QoL more negatively. These changes could be regarded as reliable in one-quarter of the sample. Participants taking acetylcholinesterase-inhibiting medication at baseline were more likely to show a decline in QoL score. There were no other significant differences between those whose scores increased, decreased or stayed the same on any demographic or disease-related variables, or in mood or perceived quality of relationship with the carer. Whereas baseline QoL score was the strongest predictor of QoL at 20 months, the quality of relationship with the carer as perceived by the PwD was also independently a significant predictor.

Conclusions: There is a degree of individual variation in QoL trajectories. Use of acetylcholinesterase-inhibiting medication appears linked to decline in QoL score, whereas positive relationships with carers play an important role in maintaining QoL in early-stage dementia. Copyright © 2013 John Wiley & Sons, Ltd.

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Strain and its correlates among carers of people with dementia in low-income and middle-income countries; a 10/66 Dementia Research Group population-based survey

Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.

Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.

Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.

Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.

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Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?

Background  Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.

Methods  Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.

Results  Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services.

Conclusions  More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.

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Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client–caregiver–provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs–ignoring own needs, (2) feeling connected–feeling isolated, and (3) juggling to manage–struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.

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Social factors and depression in carers of people with dementia

Research has highlighted the influence of psychosocial factors on the wellbeing of carers of people with dementia. This study aimed to investigate the interrelationships between life events, depression and social support in carers of people with dementia. Participants were 72 carers of people with dementia. They were interviewed using the Bedford College Life Events and Difficulties Schedule and the Geriatric Depression Scale. The results showed that 31 (43%) of carers were depressed. Factors associated with depression in carers were a lack of confiding relationship, depression in the person with dementia, and living with the person with dementia. Carers of people with dementia appear more vulnerable to depression in the context of the caring experience rather than threatening life events.

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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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Care at home for people with dementia: as in a total institution?

This article examines three kinds of social relationship likely to be present when people with dementia are cared for at home by relatives or friends: custodial care, an intimate relationship, and home-life. Using Goffman's three defining aspects of custodial care – routinisation, surveillance and mortification of the self – the paper examines whether these characterised the care of people with dementia at home and, if so, whether they conflicted with the intimate relationship and with home-life. The study involved sustained observations and interviews with 20 people with dementia and their carers in and around London, and qualitative analysis of the data. It was found that all three aspects of custodial care were present although not fully realised, and that they led to difficulties, many of which were associated with the concurrent pursuit of an intimate relationship and home-life. In all cases, daily life was routinised partly to help accomplish care tasks but was found monotonous, while surveillance was usual but restrictive, and prevented both the carers and those with dementia from doing things that they wished to do. Those with dementia were distressed by the denial of their former identities, such as car-driver or home-maker, and by being treated like children. Both the carers and the people with dementia had various ways of balancing custodial care, their intimate relationships and home-life, such as combining routines with other activities, evading surveillance or carrying it out by indirect means, and there were many attempts to maintain some semblance of former identities.

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Going home from hospital: the carer/patient dyad

Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.

Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay.

Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge.

Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings.

Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.

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Poverty, disability and the role of older carers

Due to the high incidence of disability amongst their contemporaries, older people are likely to be involved in informal caring relationships. Due to the limited nature of post-retirement incomes, such carers are also likely to be relatively poor. In spite of this, little attention has been given to the role of older carers of disabled people or to the influence of poverty upon this role. In an attempt to redress this neglect, this paper will explore the way in which the ageing process serves to exacerbate the demands upon such carers, not only due to the increased incidence of disability experienced by older people, but also due to their decreased access to material resources, which would help to alleviate these demands. 

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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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Involving families and carers in drug services: are families 'part of the problem'?

Despite encouragement from policy and research for drug services to involve family members in drug users' treatment and support families and carers in their own right, family members' involvement with services remains limited. Research to date offers limited insights into why barriers and tensions are perceived the way they are and reveals little about values and perspectives that underpin relationships between family members and drug services. This qualitative study aimed to generate a fuller understanding of the relationships that carers have with adult drug services and how this might affect involvement. The findings suggest that by reinforcing stereotypes, perpetuating stigma and fuelling self-fulfilling prophecies, the dominant narrative of 'family as part of the problem' frames and constrains family members' involvement with drug services. Recommendations for policy and practice need to focus on strengthening the narrative that family members' involvement with drug services is achievable, necessary and worthwhile.

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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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Negative/positive home-based caregiving appraisals by informal carers of the elderly in Japan

This study aimed to determine factors associated with negative/positive home-based caregiving appraisals by informal carers of older people in Japan to consider which family carers’ community health nurses should focus on.

Because of the increasing older population in Japan, those needing a high level of care have become more dependent on informal carers. Carers’ health is an important aspect of caregiving. Community health nurses play an important role in assessing carers’ health, and carer appraisals, that is, how carers perceive their caregiving work, may help them better understand the health state of carers.

This quantitative study examined 192 primary carers of the elderly (care level >3) who used home-visiting nursing services in both rural and urban Japanese communities. The Japanese version of the Zarit scale (22 items) was used for negative appraisal and a positive caregiving appraisal scale (14 items) for positive appraisal. Participants with above-median scores (care burden, 30.0; positive caregiving appraisal, 39.0) were categorized as having a high care burden and high positive appraisal. To determine factors associated with appraisals, multinomial regression analysis was performed. Negative/positive appraisals were separately set as a dependent variable, and 17 items relating to carer characteristics, care-recipient characteristics, and external variables were set as independent variables. This was followed by stepwise regression and backward elimination.

With respect to care burden, positively associated factors were sekentei or social pressure [odds ratio (OR) 4.25, 95% confidence interval (CI) 1.39–13.04], caregiving obligation (OR 3.11, 95% CI 1.43–6.77), spouse carer (OR 2.58, 95% CI 1.05–6.35), daughter-in-law carer (OR 3.68, 95% CI 1.31–10.34), and depression (OR 50.58, 95% CI 13.85–184.67). With respect to positive appraisal, negatively associated factors were caregiving obligation (OR 0.29, 95% CI 0.15–0.53), male carer (OR 0.44, 95% CI 0.21–0.92), and daughter-in-law carer (OR 0.29, 95% CI 0.12–0.74).

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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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Developing the knowledge base about carers and personalisation: contributions made by an exploration of carers' perspectives on personal budgets and the carer-service user relationship

This qualitative study aimed to explore an under-researched issue within the emerging body of research about carers and personalisation - the carer-service user relationship. It was carried out across 11 English local authorities between 2011 and 2012 and focused on the impact of a change in the service user's social care arrangements to a personal budget on this relationship. Using purposive sampling and explicit inclusion criteria, data were gathered through semi-structured in-depth interviews with 23 carers in long-term dyadic relationships with an adult in receipt of social care who had changed to a personal budget. The interviews explored carers' perceptions of the carer-service user relationship before and after the advent of the personal budget and changes that had occurred. The findings were thematically analysed and reflect the fact that in addition to the effects of the move to a personal budget on the carer-service user relationship, the interviewees talked at length about a range of other effects of this move. Just over half of those interviewed felt that the personal budget had enhanced the carer-service user relationship. The other effects were both positive and negative. Three quarters reported positive outcomes, such as feeling happier, healthier and having more control over their lives. Although two thirds experienced negative feelings about having less involvement in the service user's care, these feelings eased over time and if they had confidence in the quality of the care. Over half found administering the personal budget stressful. Further analysis of these findings showed the study contributes not only to existing knowledge about the carer-service user relationship within personalisation but also to knowledge about the effects of personalisation on carers more generally. It therefore simultaneously develops the emergent knowledge base about carers and personalisation. Recommendations based on this analysis are made about future practice and research.

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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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Social participation of relatives post-stroke: the role of rehabilitation and related ethical issues

PURPOSE: (1) Describe the challenges facing relatives of persons with stroke in accomplishing their daily activities and social roles (participation). (2) Reflect on the role of rehabilitation for relatives and ethical issues that may emerge following the adoption of a family-centred approach.

METHOD: Review of the scientific literature in Medline (1996 to July 2009), Embase (1996 to July 2009) databases using keywords: stroke AND participation AND family OR spouse OR caregivers AND ethics AND burden. Selection criteria were as follows: study must examine the participation of relatives post-stroke (or equivalent concept such as burden), rehabilitation interventions for relatives post-stroke or ethical issues related to being a relative of a person with stroke. Articles not written in English or French were excluded.

RESULTS: The sample comprised 17 scientific articles. According to five studies, social participation of relatives is characterised by increased responsibilities and a reduction in interpersonal relationships and leisure. In rehabilitation, there is no consensus regarding what should be done for relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issues likely to emerge for relatives.

CONCLUSIONS: The main impact of stroke is on social roles of relatives such as responsibilities, interpersonal relationships and leisure. The role of rehabilitation and related ethical issues needs further examination.

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Relying on informal care in the new century? Informal care for elderly people in England to 2031

The research reported here is concerned with the future of informal care over the next thirty years and the effect of changes in informal care on demand for formal services. The research draws on a PSSRU computer simulation model which has produced projections to 2031 for long-term care for England. The latest Government Actuary's Department (GAD) 1996-based marital status projections are used here. These projections yield unexpected results in that they indicate that more elderly people are likely to receive informal care than previously projected. The underlying reason is that the GAD figures project a fall in the number of widows and rise in the number of elderly women with partners. What this implies is that ‘spouse carers’ are likely to become increasingly important. This raises issues about the need for support by carers since spouse carers tend to be themselves elderly and are often in poor health. The article explores a number of ‘scenarios’ around informal care, including scenarios in which the supply of informal care is severely restricted and a scenario in which more support is given to carers by developing ‘carer-blind’ services. This last scenario has had particular relevance for the Royal Commission on Long Term Care.

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The impact of being the intermediate caring generation and intergenerational transfers on self-reported health of women in Ireland

Objectives: To investigate the associations with being the “sandwich generation” in older women in Ireland and its impact on self-reported health.

Methods: Analysis of 3,196 women from wave 1 of the Irish Longitudinal Study on Ageing (TILDA) was undertaken. Poisson regression was used to determine whether intergenerational transfers, were associated with self-rated physical health and depression, when controlling for other socio-demographic variables.

Results: Multivariate analysis found that women in the sandwich generation who financially supported their children had better self-rated physical health (poor/fair health relative to excellent; RR 0.84, 95 % CI 0.72–0.97). Conversely, the women who provided other care for their children showed evidence of poorer mental health (case-level depression, RR 1.35, 95 %CI 1.05–1.73). Providing financial support for parents was associated with case-level depression (RR 2.21, 95 %CI 1.26–3.86).

Conclusions: Supporting two generations was associated with both better self-rated health and poorer mental health, depending on the type and direction of the transfers. This generation of women have substantial caring responsibilities. Strategies to address the stresses associated with bi-directional intergenerational transfers are needed.

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Older LGBT people’s care networks and communities of practice: a brief note

This article critically examines literature relating to the care of older lesbian, gay, bisexual and transgender (LGBT) people. It promotes an analysis of the network context of this care and advocates the use of the concept of ‘communities of practice’ to understand the processes of network participation and identity negotiation.

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The roles of friends and neighbours in providing support for older people

Most published research on informal care for older people focuses on the support provided by relatives. The role of non-kin carers can, however, also be significant in supporting older people in their own homes. In this paper, we report the findings from an exploratory study of the support provided by friends and neighbours who are the main carers of frail older people. It draws on interviews with an opportunistic sample of friends, neighbours and older people, which explored their views about the support arrangements, the reasons why help was provided and any difficulties experienced. Several friends and neighbours provided intensive and frequent help, and some played a key role in co-ordinating other services. One of the main forms of direct support related to older people's quality of life, at a broader level than the practical help provided by statutory services. The flexibility of such support, and the friends' and neighbours' concern for older people as individuals, were particularly important to the people they helped. Nevertheless, such help was not provided without costs to the carers. The study highlights the need for policy-makers and practitioners not to take help from friends and neighbours for granted and, in line with the White Paper Modernising Social Services, to provide the support services they need.

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Ambiguity in practice? Carers' roles in personalised social care in England

Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client.

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Planning for the future with adults with a learning disability living with older carers

Planning for the future for those adults with a learning disability who live with older carers is an important aspect of the White Paper Valuing People (DoH, 2001). Indeed, such planning is essential if crisis situations are to be avoided, particularly the double shock to service users of losing their home at a time when they are also bereaved. Most research about future planning has tended to focus on the perspective of the family carer rather than that of the service user. To rectify this situation, this paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for their future housing and support. The findings demonstrate that adults with a learning disability are very aware of the likelihood of an end to family care and that they have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.

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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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Communication and interaction within dementia care triads: developing a theory for relationship-centred care

This article develops an approach towards dementia care that highlights the nature of dementia care triads comprising the person with dementia, their informal carer, and the health and social professional. In particular, the article highlights various social practices that are shown, from our practice, to contribute towards the inclusion or exclusion of particular triad members. The article reviews existing work on triadic interaction, particularly in relationship to dementia care. Various communication processes are identified and illustrated using examples taken from casework. The implications of this approach for theory, practice, education, and research within dementia care are discussed.

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Caregiver burden, time spent caring and health status in the first 12 months following stroke

OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. CONCLUSIONS: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

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Health economics research into supporting carers of people with dementia: a systematic review of outcome measures

Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.

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Social inclusion, social networks and ethnicity: the development of the Social Inclusion Interview Schedule for young people with learning disabilities

The paper reports on the development and piloting of the Social Inclusion Interview Schedule (SIIS). This uses pictures to explore social networks and feelings of social inclusion. The background, conceptual framework and development of the interview schedule are discussed and interim findings are highlighted. The challenge of not just identifying the constituents of a social network but also attributing some measure of intensity to the relationships and activities identified will be considered. The study site is Bradford in the UK and the study population are young people with learning disabilities and their carers. There is a specific focus on people from the South Asian community resident in the city.

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The Parentified Child

Young carers are children under the age of 18 who provide care to a family member. Concern has been raised within the welfare services that these children are involved in levels and types of care that are developmentally inappropriate and that jeopardize their health and development. Despite a vast literature on the psychological impacts of caregiving upon adult carers, there has been little investigation into the impacts upon children. This review focuses on one main area of research that has examined children as caregivers; research on the ‘parentified child’. This literature derives from the traditions of systemic theory and is primarily concerned with establishing how caregiving as a child impacts upon adult functioning. Studies suggest that identity development and personality, interpersonal relationships and relationships with an individual’s own children could be affected. How the literature conceptualizes caring and the psychological theories that underpin the concept of parentification are discussed. The empirical studies are then summarized under four headings; precursors to parentification, impacts upon adult relationships, direct impacts upon the child and circumscribed research. Conceptual and methodological limitations are discussed. These include the lack of a clear definition of parentification, and problems with measurement, sampling and design. Finally, recommendations for improving and developing the parentification literature are presented that draw upon studies of resiliency, adult care giving and attachment.

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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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The changing nature of family relationships in middle and later life: parent-caring and the mid-life developmental opportunity

Demographic trends have created a situation in which relationships between family members endure over long periods of time, sometimes in ways that are as yet undefined by psychological theories. Clinical social workers are called upon to help these families. This paper examines how these relationships are affected in middle-class families when elders become frail and need care, and families become “stuck.” Current literature about adult and later life development as well as clinical examples will be cited to illuminate this discussion. The paper will define the developmental tasks that mid-life adults and elders must traverse to manage the demands care giving poses. Optimally, reciprocity and intergenerational understanding can result from careful clinical management of this life crisis within particular populations that are not burdened by concerns about financial survival.

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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.

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Anatomy of an Illness: Control from a caregiver’s perspective

Caregivers of loved ones with chronic illnesses experience an uncontrollable challenge with potentially negative behavioral and medical consequences. Extensive research has demonstrated immune and endocrine regulation can be significantly disrupted by negative behavioral factors based on both animal models and human studies. However, fewer studies have focused on how psychosocial interventions might reverse the negative consequences of stressors such as caregiving. The distress of caring for individuals with cancer has only recently begun to receive attention. These interventions addressing caregiver distress are rare overall and caregivers of patients receiving hematopoietic stem cell transplants (HSCT) have received even less attention. HSCT caregivers report feelings of loss of control. Animal studies suggest that control over aversive events can mitigate the negative consequences of stressors. Caregivers of allogeneic HSCT patients for blood cancers must be available 24/7 for three months or longer following stem cell infusion to closely monitor the recipients’ health and well-being. Does establishing a greater sense of control have positive impacts on caregivers? A randomized control trial of a cognitive behavioral stress management intervention for allogeneic HSCT caregivers is briefly described. A model of caregiver mental health which may potentially impact the patient’s quality of life is proposed. These relationships exist in a complex system that includes genetic influences, sex, social environment, and prior experience. This system fits well within recent formulations of a “complexity science” approach to health and well-being.

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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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Extending the social exclusion debate: an exploration of the family lives of young carers and young people with ME

In this article the authors explore the day-to-day lives of two groups of young people. Both were the subject of research activities carried out between 1997 and 2000. The outcomes of that work into the lives of young carers and young people with ME (myalgic encephalomyelitis) have been extensively documented elsewhere; here we draw out some of the common factors that serve to socially isolate and exclude young people who are heavily reliant on, or are drawn into supporting, home-based caring relationships. We argue that the current social exclusion debate's primary focus on the public sphere (with an emphasis on such matters as homelessness and school exclusion) neglects the ways in which young people can experience similar forms of disadvantage in the private sphere. A more critical analysis of the impact of social exclusion on young people requires a wider perspective, which examines and clarifies the interconnectedness of the public and private domains of young people's lives. The research presented in this article highlights the ‘common experience’ of young people’s exclusion in the private and public sphere and raises further issues regarding young people’s invisibility and professional practice and unease when faced with the complexity of young people’s lives.

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Carers' perceptions of pain in people with dementia: a grounded theory approach

The purpose of this Grounded Theory based study was to add to the limited understanding about the perception and observation of pain by the formal and informal carers of people with dementia. Thirty-one carers talked about how they know when their person with dementia has pain. Findings showed there is no one set of signs or behaviours that indicate pain in all people with dementia. However, a common pain assessment process amongst carers involved being able to detect deviation from normal behaviours based upon their intimate knowledge of what is normal for their person. A central hypothesis was thus generated from the data that considered that effective pain assessment for people with dementia is dependent on carers having an intimate knowledge of the individual's normal state of being with dementia. Implications for nursing practice are discussed.

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Substitution between formal and informal care: a ‘natural experiment’ in social policy in Britain between 1985 and 2000

This paper is concerned with the issue of substitution between formal and informal care in Britain between 1985 and 2000. This period provides the conditions for a ‘natural experiment’ in social policy. During the late 1980s/early 1990s, there was an increase in long-stay residential care for older people, which came to an end around the mid-1990s. The paper examines whether this increase in formal services led to a decline in informal care, and whether this was subsequently reversed. The focus is on provision of intense informal care by adult children to their older parents, trends in which are identified using General Household Survey data. The paper shows that there was a decline in provision of intense and very intense co-resident care for older parents between 1985 and 1995, which came to an end in the mid-1990s. These trends in intergenerational care were negatively related to changes in long-stay residential care. In particular, controlling for age and disability, there was evidence of substitution between nursing home/hospital care and very intense co-resident care for older parents. A key policy implication is that an expansion of very intense formal services for older people could bring about a decline in very intense intergenerational care. The paper relates these findings to the current debate on reform of the long-term care system in England.

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Ecomapping: an innovative research tool for nurses

AIM: This paper explores the use of ecomaps as a research tool for capturing data, using the example of the dynamic nature of social networks from which informal carers of people living with motor neurone disease draw their support. BACKGROUND: The need for social support in relation to health maintenance and disease management has been identified in the literature but little has been published about ways to investigate support networks. Existing discussion in the literature about the use of ecomaps as a clinical tool in social work creates a valuable framework for data collection which can be readily adapted by nurse researchers. METHOD: We used ecomaps as part of a repertoire of research tools to gather data about the social networks of carers of people living with motor neurone disease. Primary carers participated in three interviews and collaborated in ecomap construction over a period of 10 months during 2003. Analytical correlations were made between ecomaps and interview data. 

Findings.  Ecomaps provided a visual means of facilitating discussions around the structure and strength of networks. Being able to represent the social networks visually through ecomapping enabled people to identify each member of the network, examine the strength of each relationship and ascertain the sources of nurture and tension over time. Limitations to this type of data collection arise when participants try to quantify relationships that have been visually produced.

Conclusion.  Ecomapping is a valuable research tool because it provides visual representation of supportive care networks, capturing strategic data through symbols expressing relationships that may be inadequately portrayed in words. The ecomap incorporates the use of consistent symbols that standardize recipient responses, enabling data comparisons to be made.

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Do patients diagnosed with Alzheimer's disease benefit from a psycho-educational programme for family caregivers? A randomised controlled study

Objective: The Aide dans la Maladie d'Alzheimer (AIDMA) study was conducted to determine whether a psycho-educational programme (PEP) for primary caregivers in addition to standard anti-dementia drugs for patients improves caregivers' psychological condition and patients' activities of daily life.

Method: Multicentre randomised controlled intervention trial. One hundred and sixty-seven dyads ‘patient–caregiver’ were recruited from 15 French memory clinics and randomised in two parallel groups. The intervention group was offered the PEP in 12 group sessions for 3 months. The control group had usual care. Patients in both groups with mild to moderate Alzheimer's disease (AD) were diagnosed and treated with pharmacotherapy. Patients' primary efficacy variable was functional status assessed with the Disability Assessment Scale for Dementia (DAD) scale. Alzheimer Disease Assessment Scale (ADAS-Cog) and Neuropsychiatric Inventory (NPI) were secondary criteria. Caregivers' first outcome measure was depressive symptoms assessed with the Montgomery and Asberg Depression Rating Scale (MADRS) scale. Zarit scale, Sense of Competence Questionnaire (SCQ) and Visual Analogue Scales (VAS) were secondary criteria. Assessment was done at baseline, 3 months (M3, end of intervention) and 6 months (M6).

Results: Patients' stabilisation was observed in both groups. In caregivers, significant improvement in disease understanding at M3 (p = 0.007) and M6 (p = 0.0001) and in ability to cope with care-recipients' disease at M6 (0.02) was evidenced.

Conclusion: The PEP had no additional impact on patients but carers developed more effective disease understanding and ability of coping. Results support the idea that the PEP although improving caregivers' condition is not sufficient to improve patients' activities in daily life which requires additional individually tailored interventions provided by professionals. Copyright © 2010 John Wiley & Sons, Ltd.

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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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Support network transformations in the first stages of the caregiver's career

The purpose of this article is to propose a method to facilitate analysis of the processes involved in the transformation of support networks for caregivers of persons with dementia. The authors are particularly interested in the preliminary phases of the caregiver's career: the initial period ranging from the first manifestations of dementia to the confirmation of a diagnosis. This method combines the social network approach with narratice analysis. The authors discuss two cass to illustrate the concepts of density and clique to explain the maintenance and dissolution of the caregiver's supportive relationships. This method shows significant potential, in that it will help researchers explore social mechanisms related to the development of supportive relationships.

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De Caf: a meeting place and therapeutic resource

Penny Redwood, Diana Robinson and Jane Price describe the development of a dementia cafe in Leeds – a meeting place where people with dementia and their carers can spend an enjoyable time, share problems and obtain information and support

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Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers

Purpose: Anxiety is prevalent, distressing, and understudied among patients with advanced lung cancer and their family caregivers. Preliminary evidence suggests that anxiety is not only present in both patients and caregivers but shared by the dyad. Few studies have examined the nature of shared anxiety and its impact on patient-caregiver dyads.

Methods: This study was developed to identify shared causes and manifestations of anxiety experienced by patients with stage IV non-small cell lung cancer (NSCLC) and their primary caregivers. Data were collected through in-depth semi-structured interviews with ten matched patient-caregiver dyads and one unmatched patient (N = 21) recruited from two comprehensive cancer care centers.

Results: Using grounded theory, eight themes emerged characterizing shared causes and manifestations of anxiety: (1) uncertainty, (2) loss and impending loss, (3) changing roles, (4) conflict outside the dyad, (5) finances, (6) physical symptoms, (7) fears of decline and dying, and (8) life after the patient’s passing. All themes were shared by patients and caregivers.

Conclusions: Implications for future research include the development and evaluation of interventions to reduce anxiety in cancer patient-caregiver dyads.

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Relatives as paid care-givers: how family carers experience payments for care

Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.

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The meaning of cancer: implications for family finances and consequent impact on lifestyle, activities, roles and relationships

Objective: This study explores the impact that cancer-related financial hardship/worries can have on family life.

Methods: Forty patients (19 male and 21 female) and 17 carers participated in a qualitative study, which drew on certain elements of grounded theory methods. Participants were 18 years or older and were accessed through a regional cancer centre, an acute National Health Service trust, a support group and the Macmillan Benefits Helpline. Interviews were transcribed verbatim and analysed thematically with the aid of nvivo 7 (QSR International, Cambridge, MA, USA).

Results: Many participants said that prior to experiencing cancer, they had never thought about its effects on finances. The early part of the cancer journey was characterised by a need to be positive about the future, limited discussion about money within families and a lack of action in relation to finances. Many participants, especially those of working age, described cancer-related financial worries and difficulties that had impacted on family lifestyle, roles and relationships. Consequences included house repossession, bankruptcy, loss of independence and relationship breakdown.

Conclusions: Health and social care professionals have a role in prompting people affected by cancer to take stock of their finances early in the cancer trajectory, in order to avert knock-on effects. An approach that combines hope with proactivity is needed. More work into the long-term effects of financial difficulties/worries and specific financial issues that affect people from Black and minority ethnic backgrounds is needed. Copyright © 2011 John Wiley & Sons, Ltd.

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Carers' representations of affective mental disorders in British Chinese communities

Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.

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Working with families in mental health: some pointers from research

This article looks at one model of how mental health professionals relate to carers and families.  It then goes on to consider some research on aspects of the family environment, and the impact that mental illness has on how clients and families relate to one another.  Finally it offers suggestions as to how this material might be relevant to our approach to social work in mental health.

Longer lives, stronger families? The changing nature of intergenerational support

Too often, our ageing society is observed with the growing costs of health or state pensions in mind. However, the implications for families and for support provided across the generations are less well-explored, though no less radical. Drawing on new public polling as well as long-run data, this study charts how the shape of the extended family has evolved over time. It goes on to explore how the support given across the intergenerational family has changed historically and how it may alter in the future.

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Growing and gaining through caring for a loved one with dementia

Aim: To investigate the gains experienced by family caregivers of persons with dementia. Methods: Twelve respondents were recruited using purposive sampling from three institutions around Singapore. A qualitative design, guided by the grounded theory approach, was adopted and involved semi-structured, in-depth, face-to-face interviews. The interviews were recorded, transcribed and analyzed using open, axial and selective coding. Results: All caregivers interviewed reported having gained from caregiving. The most common gain was that of 'personal growth' which comprised being more patient/understanding, becoming stronger/more resilient, having increased self-awareness and being more knowledgeable. Another theme that emerged was `gains in relationships' whereby caregivers experienced an improvement in their relationship with the care recipient, with others in the family or in their ability to interact with other older persons. The third gain experienced was that of `higher-level gains' which encompassed gains in spirituality, deepened relations with God, and a more enlightened perspective in life. Discussion: This research supports a shift from the conventional focus on burdens to a more holistic approach that considers how caregivers can grow and emerge stronger from the caregiving experience. This has implications in the design and delivery of services as utilizing these gains as a coping resource may enable better support for caregivers. It is pertinent that professionals supporting caregivers internalize the perspective of gains so that it becomes a natural way of seeing their clients and in the process help caregivers find meaning and enrichment in their caregiving journey.

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Informal care as relationship: the case of the Magnificent Seven

Continual and/or repetitive informal caring and the part childhood, developmental and socially constructed identity play roles in adult informal care, form the background to the questions of why individuals gravitate toward such relationships and why they often continue to care in the face of overwhelming obstacles. A synthesis of the literature is presented, leading to personal histories as a method of discovery. The Biographic Narrative Interpretive Method’s minimalist interview technique is put forth as the key data-gathering event. Reflecting teams, underpinned by hermeneutics or interpretive phenomenology, are used for the analyses. Data from in-depth, biographic interviews with two informal carers (a mother and her adult son) from a seven-member, three-generational family are presented. The study reveals that this family defines disability as a status that they share in common: disability demonstrates relationships and keeps the family together, but discourages mobility. It is suggested that often-unmet childhood needs propelled these particular individuals into demonstrating those needs as adults by assuming informal care relationships. The case is made that their biographies impact upon their management of health and enduring illnesses within caring roles. Further biographic research within the caring profession is recommended.

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The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study

Background: Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL). Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL), caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods: Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36), caregiver role (negative and positive aspects), relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale). Results: Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative) significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative) significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions:The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

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Parental mental illness: effects on young carers

Seye Obadina looks at the importance of identifying young carers of parents with mental illness, and to offer them and their family adequate support.

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Preference for place of care and place of death in palliative care: are these different questions?

Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (κ 0.33) and 36% (κ 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.

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Acting up : role ambiguity and the legal recognition of carers

The contribution made by informal carers to the provision of care in the community in the UK is formally acknowledged in the 1995 Carers (Recognition and Services) Act. This legislation has focussed attention, once again, on the relationship between formal services and those providing informal care. The Act has re-created a lack of clarity about the position carers hold in the carer dyad. Findings are presented here from an exploratory study about the experience of dementia. This seeks to examine the realities of caring for a relative with dementia in the context of three particular aspects of the caring activities which relate to role ambiguity: the needs of carers, their relationship with formal services and their position as being experienced and skilled in the care of their relatives. 

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What does phenomenology offer to the study of care-giving?

Care giving to a dementia sufferer is complex (Parsons, 1997) and inherently stressful (Baldwin et al 1989). It is suggested that the predominance of the care-giver stressor-burden research paradigm during the last 30 years has frequently been uni-dimensional, objectively oriented, generally equivocal, and unconvincing in its findings. Dillehay and Sandys (1990), suggest that preoccupation with such typically narrow approaches has delayed the much-needed development of a more accurate understanding of the lived experience (the phenomenology of care-giving). Researching the experience of care giving to a dementing relative requires a research strategy, which acknowledges the intricacies, complexities, subjectivity and humanness of that experience. That is the premise behind this paper. A multi-dimensional phenomenological PhD study is presented. The focus is on understanding care giving from the individual and collective perspectives of 46 spouse caregivers. The methodological implications (including influences of Husserl and Heidegger) are outlined before the phenomenological research findings are presented and discussed. Ethical approval was given by the Bassetlaw Hospital and Community NHS Trust Ethics Committee (now part of the Nottinghamshire Healthcare NHS Trust).

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“I Can’t Go to School and Leave Her in So Much Pain”: Educational Shortfalls Among Adolescent ‘Young Carers’ in the South African AIDS Epidemic

“I go to the hospital with my mother when she is sick. I can’t go to school and leave her in so much pain. I won’t concentrate.” Millions of adolescents live with AIDS-affected parents or primary caregivers. Little is known about educational impacts of living in an AIDS-affected home, or of acting as a “young carer” in the context of AIDS. This study combined qualitative and quantitative methods to determine educational impacts of household AIDS-sickness and other-sickness. Six hundred and fifty-nine adolescents (aged 10-20) were interviewed in high-poverty areas of urban and rural South Africa. Qualitative findings identified three major themes of missing school, being hungry at school, and concentration problems due to worry about the sick person. In quantitative analyses, living in an AIDS-affected home predicted all these three outcomes (p < .001) compared to homes affected by other sickness and to healthy homes, and independent of sociodemographic cofactors. This study demonstrates that familial AIDS-sickness is associated with negative educational impacts for adolescents. It is important that policies are developed to support young people in these circumstances to continue with their education.

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Unmet needs and depression among carers of people newly diagnosed with cancer

Aims: The aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics.

Methods: One hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18 years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D).

Results: Overall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r = 0.30, p < 0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses).

Conclusion: Findings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.

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Rights, relationships and recovery: the national review of mental health nursing in Scotland: annual report of progress prepared by the National Implementation Group for the Chief Nursing Officer

The aim of Rights, Relationships and Recovery is to enhance and develop mental health nursing in Scotland and produce continual improvements in the experiences and outcomes of care of service users, their families and carers. Progress against the Delivery Action Plan is to be measured twice yearly from returns submitted by the various stakeholders. This report is based on the information received from the stakeholders after the first six months of activity. It is the first of a series of annual reports that will summarise the position each year until 2010.

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Changing intergenerational solidarities within families in a Mediterranean welfare state - Elderly care in Italy

Intergenerational solidarity within families is the traditional source of support for dependent elderly people in southern European countries, where care needs have been mainly fulfilled by the unpaid work of women. Recently, the decline of informal care and the persistent lack of supply of formal services have been accompanied by the growth of commercial services mostly provided by migrant women hired by families in the grey market. The article is based on a qualitative study and explores the social processes underlying these changes. It suggests that although intergenerational solidarity is still crucial, it is expressed less through the direct provision of care and more through the supervision of paid services. This shift, which results mainly from a strategy adopted by middle-class women, challenges traditional gender relations and divisions of work. Moreover, it produces employment relations characterized by low pay and underprotection and reflecting conflicts over time and space typically present in informal care relations.

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Influence of carer expressed emotion and affect on relapse in non-affective psychosis

This study aimed to investigate the relationships between carer expressed emotion, patients’ symptoms and carer characteristics during a recent relapse of psychosis. A total of 86 patients and carers were investigated in a cross-sectional design. Patients whose carers showed high expressed emotion had significantly higher levels of anxiety and depression, but not more psychotic symptoms or lower self-esteem. Linear regression showed that carers’ critical comments predicted anxiety in patients. Critical comments were related to low carer self-esteem and avoidant coping strategies. Low carer self-esteem was also related to carer depression, stress and carer ‘burden’, and to low patient self-esteem. The authors concluded that carer criticism was associated with patient anxiety, low carer self-esteem and poor carer coping strategies. Family interventions should focus on improving these after a relapse of symptoms of psychosis.

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Informal carers of older family members: how they manage and what support they receive from respite care

Aims.  To describe informal carers’ coping strategies and their experiences of the support provided by respite care.

Background.  The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution.

Design.  Survey.  Methods.  The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index (Nolan et al. 1995) and an index developed by the researchers.

Results.  Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship.

Conclusions.  The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role.

Relevance to clinical practice.  Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well-being of the entire family.

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Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study

To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.

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REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial

Objectives: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care.

Design: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point).

Setting: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings.

Participants: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study.

Interventions: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group.

Main outcome measures: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties.

Results: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed.

Conclusions: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

Current Controlled Trials ISRCTN42430123.

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Stressors and life goals of caregivers of individuals with disabilities

Caregivers of individuals with disabilities can experience stress as they manage care giving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed. [Journal abstract]

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Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia

Objectives: There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers.

Methods: Qualitative interviews with 27 people with cognitive impairment and 26 carers (20 dyads) using four memory services before and after diagnosis disclosure were conducted. Interview transcripts were subject to constant comparative analysis and interpretations subject to discussion at regular ‘analysis clinics’.

Results: Twelve sub-themes were identified along four points on the assessment journey. Feelings of confusion, uncertainty and anxiety over interminable waiting times dominated. Participants often felt without support to manage their uncertainties, emotions and did not know where to turn for support. Some were highly critical of the systemic process of assessment and diagnosis disclosure but were generally positive of the practice of individual professionals.

Conclusions: Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers. Copyright © 2013 John Wiley & Sons, Ltd.

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The role of carer in chronic disease and end of life care

The 24th chapter of 35 in this book on ageing and disability from research and clinical perspectives viewpoints appears in the sixth part (of 12) on loss and end of life issues. It reviews the role of the carer in chronic disease and end of life care, and how positive or otherwise caring, particularly long term, may be. Following an introduction there are five main sections. International emphasis is on care in the community, and the chapter focuses on two studies discussing how family carers describe their role in providing care for relatives with Parkinson's Disease (PD) and end-stage cancer. With early diagnosis and improved treatment programmes both can often be long term commitments, involving considerable stress and loss of social contact for the caregiver. The PD study took place in 2001. Falls were identified by 14 carers participating in semi-structured interviews as particularly important. The average time span for the PD patient's condition was 16.7 years. Six major themes and sub-themes emerged. 

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Continuity and loss: the carer's journey through dementia

This paper looks at the ambiguous journey travelled by family, mainly spouse, carers in Scotland is based on 37 interviews which formed part of a larger study exploring the subjective experience of 20 individuals with dementia. The majority of the interviews were conducted with the carer alone, others with the relative with dementia (RWD) present and some as joint interviews. The carers are found to be recognizing many manifestations of loss in the loved one and, simultaneously in their carer role, striving to maintain continuity of that person through compensatory actions and the provision of a supportive care environment. These experiences are located along a trajectory of continuity and loss. This article provides further insight into the caregiving relationship in dementia and the complexities of maintaining that relationship in the shifting ground of a progressive illness.

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Service-user and carer perspectives on compliance and compulsory treatment in community mental health services

This paper reports on a qualitative study analyzing service-user (SU) and carer perspectives on medication compliance and their experience of compulsory treatment. Eleven SUs and eight carers were interviewed. The research is set against the background of changes to mental health legislation in England, in the form of Supervised Community Treatment. This signals a change in community mental health practice and urges a reconsideration of concepts such as compliance, concordance and coercion. These concepts are discussed in the context of legislative changes and in relation to the perspectives of service-SUs and carers. Five themes emerged from qualitative interview data, analysed using an adapted form of grounded theory: loss of credible identity, playing the game, medicalization, therapeutic competence and incompetence and increased control. The findings suggest that SUs are initially reluctant to comply with mental health treatment, but do eventually accept the need for treatment; they also stress the significance of respectful relationships with professionals and the importance of communicative competence.

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Supporting young carers and their families using a whole family approach

Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families. 

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Voice, choice and control: how registered nurses, care and support staff in the care sector can support people to achieve these aims

This document provides guidance on how registered nurses, care and support staff can enable relationship-centred care, and how they can work with others to achieve personalised care and support.

Over two years ago a vision and strategy aimed at nursing, midwifery and care staff, called ’Compassion in Practice’, was launched. Within this, the Department of Health has led work on helping people to stay independent, maximising well-being and improving health outcomes. This document sets out how Compassion in Practice relates to nurses and care staff working in any number of different settings. Ensuring that individuals retain voice, choice and control over as many aspects of their lives as they can, for as long as they can, is a key success factor for social care. This can be achieved through a person-centred approach which understands someone’s personal history, current circumstances, future aspirations and what is important to them. This document recognises the challenges faced by the workforce and sets out: • what good quality care and support looks like; • how registered nurses, care and support staff can enable relationship-centred care; and • how registered nurses, care and support staff can work with others to achieve personalised care and support. Linking all this in to the Compassion in Practice strategy, the final section of this document sets out the six core elements for all health and social care practitioners, with registered nurses and managers having particular roles.

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Using the Senses Framework to achieve relationship-centred dementia care services

This article describes the development of a new service for people with dementia and their carers in a large post-industrial city in the north of England, UK. The service arose in response to the perceived inadequacies of existing respite care provision and has proved very successful in meeting the needs of people with dementia and their family carers, and in providing high levels of job satisfaction for staff. The success of the initiative can be understood using the Senses Framework and relationship-centred care as an analytic lens to identify key attributes of the service. The article also discusses implications for the development of support services more generally.

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Nearest and dearest? The neglect of lesbians in caring relationships

The article argues that caring within lesbian relationships has been ignored in social and health care studies and practice. It critiques the dominance of caring debates by relationships between parents and children and partnerships, but with the unspoken presumption that those involved are heterosexual. The paper concludes that social workers should engage with lesbian carers in supporting individuals and networks. It draws out a range of implications for policy, practice and research agendas.

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When dementia is in the house: needs assessment survey for young caregivers

To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.

Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.

Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants' responses, a website was launched providing supportive information and counsel for young carers.

Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.

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An intergroup communication approach to understanding the function of compliance, outgroup typicality, and honest explanations in distant caregiving relationships : validation of a health-care communication scale

This study examines distant caregiving relationships to achieve a better understanding of the function of compliance, outgroup typicality, and honest explanations from an intergroup communication perspective. With more families living at a distance due to our increasingly mobile society, long-distance caregiving (LDC) is a unique and growing caregiving situation that caregivers must face. LDC differs for caregivers and patients in close geographic proximity due to lack of availability, lack of intimate understanding of the caregiving needs at hand, and unknown financial burdens. As family residential distance increases, additional and unknown stressors are placed on individuals who provide distant care to an aging adult; however, little is known about different accommodation types used in situations of close-proximity as compared with distance caregiving situations. A sample of 130 self-identified distant family caregivers completed an online survey about their communication with their care recipient. This study is one of the first known to examine communication in the distant family caregiving context, and it offers possibilities for future research on communication barriers and health issues that impact this growing population.

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Meeting in the middle: improving communication in primary health care consultations with people with an intellectual disability

The increased presence and participation in Australian society of people with an intellectual disability provides challenges for the provision of primary health care. General practitioners (GPs) identify themselves as ill equipped to provide for this heterogeneous population. A major obstacle to the provision of appropriate health care is seen as inadequate communication between the GP and the person with an intellectual disability, who may or may not be accompanied by a carer or advocate. This qualitative study in which five GPs, three people with intellectual disability, seven carers and two advocates (parent and friend) were interviewed was conducted in Brisbane, Australia. The aim was to better understand the factors that have an impact upon the success of communication in a medical consultation. Findings suggested that GPs were concerned with the aspects of communication difficulties which influenced their ability to adequately diagnose, manage and inform patients. Implications for practice management were also identified. People with intellectual disability reported frustration when they felt that they could not communicate adequately with the GP and annoyance when they were not included in the communication exchange. Carers were strong advocates for the person with intellectual disability, but indicated insufficient skill and knowledge to provide the level of assistance required in the consultation. The outcome was a model of cooperation that outlined the responsibilities of all players in the medical encounter, prior to, during and after the event.

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‘Stroppy’ or ‘confident’? Do carers and professionals view the impact of transition support on young people differently?

The study examined the effects of transition employment support to two cohorts of young people who were in their last year in school or college in 2005/2006 and 2006/2007. This paper reports the views of carers, teachers and support workers of the impact this additional support made to the young people. Analysis of the data reveals a difference between the views of carers and those of professionals. The paper argues that these differences may reflect different understandings of the aim and purpose of transition support and which may make it difficult to achieve a smooth transition for all stakeholders when not taken into account. This may have implications for how to structure and deliver transition support, some of which are being outlined in the discussion.

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Whatever it takes: informal caregiving dynamics in blood and marrow transplantation

Purpose/Objectives: To describe the dynamics of commitment, expectations, and negotiation from the perspective of caregivers of patients undergoing blood and marrow transplantation (BMT).

Research Approach: Descriptive, exploratory, qualitative methodology. Setting: Comprehensive cancer center in a major southern U.S. city. Participants: 40 caregivers of patients undergoing BMT.

Methodologic Approach: Story theory guided audiotaped dialogues with caregivers. Main Research Variables: Commitment, expectations, and negotiation.

Findings: Commitment is an enduring responsibility that encourages supportive presence, inspires life changes to make the patient a priority, and leads to a self-affirming, loving connection. Expectations are clarified as expectation management, which is envisioning the future and yearning to return to normal, taking one day at a time, gauging behavior from past experiences, and reconciling treatment twists and turns. Role negotiation is appropriate pushing by a caregiver toward patient independence after getting a handle on complex care and attending to patient voice (patient preferences and wishes).

Conclusions: Commitment, expectation management, and role negotiation sustain informal caregivers in their role.

Interpretation: Acknowledging caregivers' contributions, giving focused information as needed, and providing a safe environment in which to build coherent caregiving stories can assist caregivers. Research is needed to confirm the effectiveness of interventions with caregivers and to understand patients' role in the dynamics of informal caregiving.

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Who cares in England and Wales? The Positive Care Law: cross-sectional study

Background: The inverse care law proposing that medical services are distributed inversely to population health needs, and that this law operates more completely where medical care is most exposed to market forces, was first suggested by Tudor Hart in 1971. This paper considers whether an inverse care law can be observed for the provision of informal care as well as for medical care.

Aim: Using data from the 2001 census we sought to investigate the contemporary relevance of the inverse care law.

Design of study: Cross-sectional study.

Setting: England and Wales.

Method: Data from the 2001 census for the population of England and Wales were analysed at the county, unitary, or former metropolitan authority level. The prevalence of the conjunction of general health status and limiting long-term illness was correlated with the percentage of the local population who were working as qualified healthcare workers (nurses, qualified medical practitioners, dentists, and other health professionals and therapists) and with the percentage of the population providing 50 or more hours of unpaid care per week.

Results: In 2001, 7.6% of people reported that their health was not good and that they had a limiting long-term illness (the need for care). Over one million people reported providing 50 or more hours of unpaid care per week. An inverse care law was found at the ecological level between the need for care and the proportion of the population who were working as qualified medical practitioners, dentists, and other health professionals. Informal care was almost perfectly positively correlated with the need for care (r = 0.97). These relationships were more marked for areas in the north of the country compared with the south. In the north more people provide unpaid care as more people need that care and because there are fewer working qualified medical professionals, other than nurses, providing such care per head.

Conclusions: Medical care is distributed inversely to need, whereas the provision of informal care is positively related to need — where care is most needed, informal care is most likely to be provided. The greater the market forces that are allowed to intervene in the relationships between the need for care and its provision, the more likely the inverse care law is to be found to apply. Where no market forces apply, where people give up their time for free to provide care, an almost perfectly positive care law is found to apply.

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Dementia and ethics: the views of informal carers

There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.

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The dyadic interaction of relationships and disability type on informal carer subjective well-being

Purpose: Care-related factors have frequently been associated with elevated levels of distress and diminished subjective well-being. However, these variables have traditionally been considered independently. The objectives of this study were to explore the subjective well-being of informal carers in Australia and to specifically examine the effect of the dyadic interaction between the caring relationship and type of disability on the subjective well-being of informal carers.

Methods: Informal carers (n = 4,096) completed the Personal Wellbeing Index (PWI) and Depression and Stress Scales. Analysis of covariance was used to compare the subjective well-being of carers to the general population while controlling for socio-demographic factors. To examine the dyadic relationship, a multivariate analysis of covariance was employed.

Results: After socio-demographic variables were controlled, informal carers reported significantly lower PWI scores compared to the general population. The results of the multivariate analysis of covariance revealed a significant interaction between the caring relationship and the type of disability being managed on subjective well-being. No differences were found for symptoms of depression and stress.

Conclusions: The findings of this study imply that the detrimental effect of caring on subjective well-being is magnified for carers who support a child with a mental illness or multiple types of disabilities. These carers displayed the lowest levels of subjective well-being, highlighting the dyadic effects of care-related variables. Consideration of these factors is essential to target effective intervention programs for those most at risk of diminished well-being.

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Correlates of care relationship mutuality among carers of people with Alzheimer's and Parkinson's disease

Aim.  This paper presents findings from secondary analysis of longitudinal data on correlates of care relationship mutuality collected from 91 carers of people with Alzheimer’s disease and Parkinson’s disease in the control group of a randomized trial of home-care skill training.

Background.  Many family members and other informal carers are reported to suffer multiple adverse social, financial, psychological and physical caregiving outcomes. High levels of mutuality, the perception that the quality of the care relationship is positive, reportedly ameliorate these negative outcomes.

Method.  Multilevel models for change were used to explore whether care recipient functional ability, carer gender, depressive symptoms, kin relation to care recipient (spouse, non-spouse) and years of caregiving experience were related to carers’ perceptions of care relationship mutuality over a 12-month period. Data collection took place between 2003 and 2008.

Results.  Carers who reported lower mutuality: (1) were caring for care recipients with lower functional ability, (2) had less caregiving experience and (3) had more depressive symptoms.

Conclusion.  Informal carers who perceive little mutuality in their relationship with the care recipient may be more likely to terminate care early. Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in carer and care recipient outcomes. Home-care skill training may need to include relationship-building skills to offset adverse carer outcomes.

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"Caring for you, caring for me": a ten-year caregiver educational initiative of the Rosalynn Carter Institute for Human Development

This article describes a caregiver education program that includes both family and professional caregiver issues developed by the Rosalynn Carter Institute for Human Development in the United States. In the program there are modules designed too bring professional and family caregivers together for a better appreciation of collaboration and teamwork; discussions of the meaning of caregiving; a module looking at how well carers are looking after themselves; modules focusing on building collaborative relationships with other caregivers; problem solving; and accessing resources.

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Using the Roy Adaptation Model to explore the dynamics of quality of life and the relationship between lung transplant candidates and their caregivers

Using theory to support nursing research may be considered superfluous by some authors, yet a theoretical framework provides structure and consistency to a research study. This article presents the use of the Roy Adaptation Model within the theoretical framework underpinning an investigation of quality of life as perceived by lung transplant candidates and their caregivers. Each step of the research process is identified in this article and the link to the theoretical framework is demonstrated. The use of nursing frameworks to guide research strengthens the theoretical framework itself and also adds another dimension to the body of nursing knowledge.

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Listening to carers' views on stroke services

Anne Marie Tunney and Assumpta Ryan discuss a study that used the experiences of women caring for survivors to assist service redesign

Aim  The aim of this study was to explore how members of a stroke carers’ support group perceived that services for stroke patients and their carers could be improved.

Method A qualitative, experience-based design approach was used to explore the views of ten carers of stroke survivors. Experience questionnaires and a listening lab were used for data collection. Data analysis was carried out using thematic content analysis of the questionnaire and audiotaped transcripts.

Findings Common themes identified included carer loneliness, lack of information, effect of stroke on relationships, carer emotions, loss of privacy and need for ongoing support.

Conclusion There are many advantages to be gained for users and organisations from user involvement in service redesign and delivery

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Navigating health and care: living independently with long term conditions: an ethnographic investigation: interim findings

An evaluation exploring the lives of older people living with multiple long term conditions, assessing how well the health and care system is meeting their needs. The evaluation heard the views of 36 patients, family members and carers in order to gain an insight into their experiences of living with and managing their long term conditions and the care they receive. The key findings of the evaluation include: people greatly value the care and support they receive from the NHS and the wider health and care sector, and in the main feel the care they receive is good; however, they often feel the system is not set up to cope with their multiple and complex needs; people with more than one long term condition struggle to coordinate them all and they can feel there is no support linking all of their conditions and focusing on them personally and holistically; they can feel that they are a burden within their home as well as within the health and care system, which can prevent them seeking the help and support they need; and too often, there is an absence of discussion about care and care needs, within the home and within the health care system. (Edited publisher abstract)

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How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed

Purpose: A trend exists towards moving from the hospital and caring for the patients with cancer at home, which has directed the burden of caring to the family. As a result the numbers of informal caregivers, who assumed the care of their loved ones, has increased rapidly. The aim of the study is to explore the ways that families use to cope with the stressors and hardships of caregiving and expand the knowledge about coping.

Methods: This is a descriptive research design, with the use of a convenience sample of 130 dyads. Consenting patients identified their primary family caregiver who was asked to participate in the study.

Key results: The majority of the caregivers employed emotionally focused ways of coping with the caregiving burden such as: “I was hoping for a miracle” (mean 2.19), “I was hoping that time would change things and simply waited” (mean 2.14) and “I found consolidation in my faith to God” (mean 2.05). Assertive ways of coping such as “I expressed my anger to the patient” (mean 0.78) and “I dared to do something risky” (mean 0.98) were less likely to be used by the caregivers.

Conclusions: Findings are consistent with those of previous research that informal caregivers experience substantial psychological morbidity in the form of depression in addition to caregiver burden when they assume the role of the informal caregiver. Caregivers employ various strategies in order to cope with the strains associated with the complex physical and emotional demands involved in caring.

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A pilot randomized controlled trial of sleep therapy in Parkinson's disease: effect on patients and caregivers

Objective: By means of a controlled trial, to investigate the efficacy, tolerability and feasibility of a multi-component sleep therapy intervention versus basic sleep hygiene education in PD patients with sleep disturbances and their live-in carers.

Methods: Patient-carer dyads were randomised to either of the two interventions. Quantitative measures of sleep, psychiatric and overall functioning were administered at baseline and two weeks after the intervention to patients and carers.

Results: Sleep disturbances in the PD patients improved significantly in both the groups. Between group comparisons in both carers and patients revealed no significant differences on any outcome measures. The intervention was found to be well tolerated, feasible and could easily be translated into the clinical setting.

Conclusions: This pilot study makes the case for further, more rigorous study of pragmatic, non-pharmacological interventions for sleep disturbances in PD. Copyright © 2010 John Wiley & Sons, Ltd.

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The influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient

This paper reports an analysis of the relative influence of work-related, care-related and personal factors on carer outcomes among 204 working female carers. To examine the importance of personal factors, the ‘Motivations in Elder Care Scale’ (MECS) and the ‘Relationships in Elder Care Scale’ (RECS) were developed. In a qualitative pilot study, interviews with working-age carers were drawn on to form the items for inclusion. The MECS included items for external pressures to care, e.g. guilt, the older person's expectation of care, and perceived disapproval of others, and for internal desires to adopt the caring role, e.g. carer's resistance to other forms of care, living up to one's principles and caring nature. Psychometric tests revealed that two subscales had greater reliability, the EXMECS (extrinsic motivations to care) and the INMECS (intrinsic motivations). The RECS included both positive items, e.g. respect, admiration for the older person, and lack of generational differences, and negative relationship items, e.g. struggle for power, and older person's resistance to caring efforts, and had good reliability. Measures of carer stress and carer satisfaction were included as outcome variables. Multiple regression analyses showed that the RECS and the MECS were the most significant predictors of carer outcomes. Greater extrinsic motivations to care and poorer quality of the relationship with the older person were the most significant predictors of carer stress. Better relationship quality and greater intrinsic motivations to care were the most significant predictors of carer satisfaction.

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Gatekeeping and legitimization: how informal carers’ relationship with health care workers is revealed in their everyday interactions

Aim(s) of the study. This study explores the relationship between informal carers of older people, and health care workers within the context of a hospital ward. Through an analysis of their language-based encounters the purpose of the study was to identify the discursive processes involved in face-to-face informal carer-health care worker interactions, during the course of carers’ visits to one elderly care rehabilitation hospital ward.

Design. An ethnomethodological research design, which encompassed the concerns of conversation analysis and the study of institutional interaction, was used. The study involved videotape recording informal carers naturally occurring spontaneous interactions with a range of health care workers on the ward. Data collection was carried out for between 1 and 3 hours, two to three times a week over a period of 3 months. The data comprised: 30 dyadic and group interactions involving 19 different carers and 25 different health care workers, including nurses (qualified and unqualified), physiotherapists, occupational therapists, dieticians, ambulance personnel, housekeepers and nursing auxiliaries. Detailed transcriptions of the data were produced and analysis was undertaken using a modified conversation analysis approach.

Findings. Analysis revealed that a central aspect of the way the relationship between informal carers and health care workers is framed is by the way information and access to information is obtained. This paper examines some of the aspects of informal carer-health care worker discourse, which denote both parties as gatekeepers. In doing so it considers the roles that legitimatization of competence and knowledgeability have in facilitating informal carers interactions with health care workers.

Conclusions. We conclude that the accomplishment of legitimacy is largely a collaborative undertaking on behalf of health care workers and informal carers. The implications of these findings for carers, health care workers, policy and future research are discussed.

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Paying the piper and calling the tune? The relationship between parents and direct payments for people with intellectual disabilities

Background  The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities.

Materials and methods  The paper draws on a UK-wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families.

Results  Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family.

Conclusions  The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.

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User and carer involvement in mental health services: from rhetoric to science

User or carer involvement is often seen as intrinsically worth while; but if such involvement is a good thing in itself, it would not matter whether changes resulted from it. However, most people argue for user or carer involvement because they think some useful change will follow as a consequence. Being involved can benefit users or carers both personally (for example, by empowering them or increasing their social contacts) and practically (for example, by enabling them to earn money or learn new skills). Improvements can be made to services as a result of involvement, leading to better relationships between users or carers and staff, and perhaps increased job satisfaction among those working in the service. Targeting services to users' needs may improve the cost-effectiveness of those services.

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Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial

Objectives: To determine whether a social support intervention (access to an employed befriending facilitator in addition to usual care) is effective compared with usual care alone. Also to document direct and indirect costs, and establish incremental cost-effectiveness.

Design: The Befriending and Costs of Caring (BECCA) trial was a cost-effectiveness randomised controlled trial. Data on well-being and resource use were collected through interviews with participants at baseline and at 6, 15 and 24 months.

Setting: This research was carried out in the English counties of Norfolk and Suffolk, and the London Borough of Havering. It was a community-based study.

Participants were family carers who were cohabiting with, or providing at least 20 hours' care per week for, a community-dwelling relative with a primary progressive dementia.

Interventions: The intervention was 'access to a befriender facilitator' (BF). BFs, based with charitable/voluntary-sector organisations, were responsible for local befriending schemes, including recruitment, screening, training and ongoing support of befriending volunteers, and for matching carers with befrienders. The role of befrienders was to provide emotional support for carers. The target duration for befriending relationships was 6 months or more.

Main outcome measures: Depression was measured by the Hospital Anxiety and Depression Scale (HADS) at 15 months postrandomisation. The health-related quality of life scale EQ-5D (EuroQol 5 Dimensions) was used to derive utilities for the calculation of quality-adjusted life-years (QALYs).

Results: A total of 236 carers were randomised into the trial (116 intervention; 120 control). At final follow-up, 190 carers (93 intervention; 97 control) were still involved in the trial (19% attrition). There was no evidence of effectiveness or cost-effectiveness from the primary analyses on the intention-to-treat population. The mean incremental cost per incremental QALY gained was in excess of 100,000 pounds, with only a 42.2% probability of being below 30,000 pounds per QALY gained. Where care-recipient QALYs were included, mean incremental cost per incremental QALY gained was 26,848 pounds, with a 51.4% probability of being below 30,000 pounds per QALY gained. Only 60 carers (52%) took up the offer of being matched with a trained lay befriender, and of these only 37 (32%) were befriended for 6 months or more. A subgroup analysis of controls versus those befriended for 6 months or more found a reduction in HADS-depression scores that approached statistical significance (95% CI -0.09 to 2.84).

Conclusions: 'Access to a befriender facilitator' is neither an effective nor a cost-effective intervention in the support of carers of people with dementia, although there is a suggestion of cost-effectiveness for the care dyad (carer and care recipient). In common with many services for carers of people with dementia, uptake of befriending services was not high. However, the small number of carers who engaged with befrienders for 6 months or more reported a reduction in scores on HADS depression that approached statistical significance compared with controls (95% CI -0.09 to 2.84). While providing only weak evidence of any beneficial effect, further research into befriending interventions for carers is warranted.

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Committed to caring: carer experiences after a relative goes into nursing or residential care

This article presents the key findings from a collaborative study about the experiences and support needs of carers whose relatives are admitted into a nursing or residential care home. Drawing upon data from carers' qualitative accounts, it considers carers' post‐admission roles, responsibilities and profiles, and the contribution carers make to the continued care of their relative. Carers' post‐admission caring experiences are described in detail and differences between spouse carers and carers involved in looking after a parent are identified. A temporal model depicting the complex and dynamic nature of carers' postadmission experiences is presented. The implications for policy and practice are discussed.

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Tailored resource for carers and care providers on supporting people to live well with dementia

This resource is aimed at both care providers and carers focusing on the key messages from the dementia quality standard and explaining how each quality statement relates to each audience. It provides links to key resources, further information, and practical tools which are relative to carers and care providers as appropriate. Drawing on existing guidance, NICE quality standards describe the high priority areas for quality improvement using a set of specific, concise and measurable statements. They cover: discussing concerns about possible dementia; choice and control in decisions; reviewing needs and preferences; leisure activities of interest and choice; maintaining and developing relationships; physical and mental health and wellbeing; design and adaptation of housing; planning and evaluating services; independent advocacy; and involvement and contribution to the community.

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Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships

Objective: To qualitatively explore daughters’ experiences with and response to holding multiple roles while providing post-stroke care to a parent.

Design: Qualitative study using a descriptive approach. Semi-structured interviewing was used. Interviews were recorded, transcribed and analyzed to develop themes. Setting: General community of a metropolitan city.  Participants: Twenty-three adult daughters caring for a community-dwelling parent who had suffered a stroke.

Interventions: Not applicable. Main outcome measures: Not applicable.

Results: Role overload is a salient issue for daughter caregivers. This overload is best captured by the analogy of “juggling” multiple role demands and responsibilities. Two key themes suggest that role overload resulting from parent care affects daughters’: 1) valued relationships (e.g. challenges develop in their relationship with children and partner); and 2) ability to participate in valued activities (e.g. reduced involvement in leisure activities and restricted employment).

Conclusions: Future support efforts should help daughters manage the caregiving role in light of other responsibilities. This can mitigate overload-related strain in valued relationships and decreased participation in valued activities, thereby contributing to better health and well-being for daughter caregivers.

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Understanding the impact of an Assertive Outreach Team on couples caring for adult children with psychosis

Carers play an essential role in the lives of people suffering from mental health problems. Caring is very often a relational activity carried out by family members. Assertive Outreach (AO) services ought to be particularly well placed to support carers, but their impact upon families is not well understood. We set out to understand the intervention of AO services from a family perspective, and in particular to explore its meaning from the perspectives of pairs of carers. Three pairs of carer-parents participated in six individual open-ended interviews. Transcripts were analysed from an interpretative phenomenological perspective. All three families described a series of distressing crisis experiences prior to their relationship with AO. Carers had felt painfully excluded from their parental roles – both by their children and by services. Two further themes illuminated their subsequent relationship with AO: first, carers felt reassured; valued and included; and benefited from improvements in family relationships. Second, there were still concerns about the continuing relationship with professionals, and about the future of their family member – especially in relation to how services might secure these things. It was striking that there were different needs and concerns not only between the three couples but within each pair. Changing roles and relationships within the family were related to what families wanted from services. We note that engagement with systemic ways of working may prove fruitful for the development of AO services.

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Asian carers' perceptions of care assessment and support in the community

Within a study of the use of carer assessment forms, Asian carers were given the opportunity to describe and comment on their perceptions and experiences of community care assessment and support. Although their confidence in community care workers was not exclusively related to ethnicity, they relied a great deal on semi-informal contacts with minority ethnic workers through their own local communities. The concept of ‘friendship’ with professionals was important to many Asian carers. In common with the findings of other carer studies, many Asian carers were uncertain about their experience of formal assessment and unclear about their entitlements and availability of community care support. ‘Outreach’ contact and ‘befriending’ support was greatly appreciated. Day-care and sitting support were seen as a priority for formal services. Apart from contact with general practitioners, there was limited awareness or experience of community health-care support. Most of these Asian carers were involved with carer support groups. They spoke of the benefits in terms of social interaction and mutual support, counteracting feelings of isolation, and access to information and formal support.

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Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers

Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.

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'So that's how I found out I was a young carer and that I actually had been a carer most of my life'. Identifying and supporting hidden young carers

A common theme in the literature on care-giving is the issue of ‘hidden’ carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a ‘normal’ familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain ‘hidden’ and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.

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Informal and formal caregivers' involvement in nursing home care activities: impact of integrated care

Aims.  This paper reports a study to investigate the relationships between informal and formal care, changing relationships over time, impact of integrated care, and theoretical and methodological lessons that can be drawn from research on this topic.

Background.  The ratio of informal to formal care provided in nursing homes varies. In many countries the predominance of traditional, formal care is being challenged by the emergence of integrated care models in which formal and informal caregivers co-operate and co-ordinate their activities to deliver tailor-made care. This move towards integrated care is likely to result in changes in the degree and nature of involvement of formal and informal caregivers in care activities. However, very little research has investigated this. Previous research is restricted to one point in time, as opposed to focussing on the changing relationships between formal and informal caregivers over time.

Methods.  The quasi-experimental design encompassed a traditional care comparison setting and an experimental setting with an integrated care intervention. At three measurement points, one before the intervention in May/June 2000 and two at 6 and 14 months after the intervention, informal and formal caregivers recorded their care activities. Informal care relationships were determined by calculating contribution rates and informal/formal care ratios for 14 activities.

Results.  Integrated care did not bring about the expected major changes. There was a limited amount of substitution of formal care with informal care. There were limited changes in the extent of dual specialization, in which informal and formal caregivers perform separate activities. There was little supplementation of formal care with informal care. Furthermore, relationships changed over time, resulting in a complex pattern of linkages at the level of separate activities.

Conclusions.  Informal caregivers contribute to many activities. The impact of integrated care on the degree and nature of involvement, however, was moderate. A possible explanation is the contextual situation for nursing home care. These findings point to the need for further research into the (changing) relationship between formal and informal carers in residential care activities and the evolution of this relationship over time.

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The national outcomes framework for people who need care and support and carers who need support

This document sets out the social services national outcomes framework for Wales. The framework describes the well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives; sets national direction for services to promote the well-being of people who need care and support, and carers who need support; and provides greater transparency on whether care and support services are improving well-being outcomes for people using consistent and comparable indicators. The well-being outcomes and associated indicators cover a whole range of personal and social dimensions, including: securing rights and entitlements; physical and mental health and emotional well-being; protection from abuse and neglect; education, training and recreation; domestic, family and personal relationships; contribution made to society; social and economic wellbeing; and suitability of living accommodation.

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Forensic Nursing Interventions With Patients With Personality Disorder: A Holistic Approach

Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients’ cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.

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Head and neck cancer and dysphagia; caring for carers

Objectives: A diagnosis of head and neck cancer (HNC) is a profound event for patients and family members who play a crucial role in their care. Eating and drinking difficulties affect patients' quality of life (QOL), but the impact on the carers' QOL has not been explored. This preliminary mixed method study reports on carer QOL over time and investigates the relationship with dysphagia.

Methods: Two hundred and eight HNC patients referred for (chemo)radiotherapy were asked to identify a carer and complete a health-related QOL and a swallowing QOL questionnaire at pre-treatment, 3 and 12 months post-treatment. Carers were given the Caregiver QOL-Cancer (CQOL-C) questionnaire at the same time points. A purposive sample of patient and carer dyads was observed over mealtimes and interviewed.

Results: Seventy per cent of carers returned a questionnaire at least once. There was no change in CQOL-C scores between pre-treatment and 3  months, but a significant improvement was found between 3 and 12 months post-treatment (p = 0.012). Patient-reported outcomes accounted for 52% of variance in carer QOL measurements (R2 = 0.52, p < 0.001). Four themes emerged from the qualitative data food provision, monitoring, motivation and changes to lifestyle.

Conclusions: Findings suggest a relationship between carer and patient QOL. Elsewhere, these two characteristics have been associated such that the greater the patients' physical care needs, the poorer the carers' and patients' QOL. Living with someone with dysphagia not only involves managing the physical swallowing difficulties but is also likely to impact on social activities such as participation in shared meals, leading to permanent lifestyle changes. Copyright © 2012 John Wiley & Sons, Ltd.

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The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study

Background: Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers’ close relatives after the stroke.

Objectives: This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic.

Participants: Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed.

Methods: The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study.

Results: Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives’ process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges.

Conclusion: This study highlights the middle-aged relatives’ realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life.

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Enhancing carers' experiences of mental health services

This article suggests that relational approaches and carer-centred practice in mental health and other services might alleviate some of the burden on the health – both physical and mental – experienced by informal carers. Unhelpful staff attitudes and poor communication are barriers to effective engagement between professionals and carers.

Carer-centred practice requires professionals to identify and develop relationships with carers, appreciate interdependencies and the complexity of need, and involve family members and friends of the service user as expert partners in care.

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The experience of being a middle‐aged close relative of a person who has suffered a stroke – six months after discharge from a rehabilitation clinic

Being a close relative brings with it a large number of consequences, with the life situation changing over time. The aim of this study was to illuminate the experiences of being a middle-aged close relative of a person who has suffered a stroke 6 months after being discharged from a medical rehabilitation clinic. Narrative interviews were conducted with nine middle-aged close relatives and analysed using a content analysis with a latent approach. The analysis revealed that being close to someone who had suffered a stroke 6 months after discharge meant; a struggling for control and a renewal of family life in the shadow of suffering and hope. The middle-aged close relatives began to perceive the changed reality. They were struggling to take on something new, become reconciled and find a balance in their family life. Their ability to work, relief from caring concerns and having support and togetherness with others seemed to be essential for the close relatives in their efforts to manage their life situation and maintain their well-being. Having reached the ‘halfway point’ in their lives and still with half of their life in front of them created worries. They felt dejected about their changed relationships and roles, experience a sense of loss of shared child responsibilities, a negative impact on their marital relationships and sexual satisfaction. They felt trapped in a caring role and they worried about how to endure in the future. The middle-aged close relatives’ experiences were of being alone and neglected, in an arduous and complex life situation filled with loss and grief. The findings highlights that health professionals need to see and listen to the close relatives’ experiences of transition in order to provide appropriate support adjusted to their varying needs during a time of renewal.

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Predicting mental health outcomes in female working carers: a longitudinal analysis

This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers’ mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own.

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The oldest carers: A narrative review and synthesis of the experiences of carers aged over 75 years

As populations age, numbers of older carers are increasing. These carers play a vital role in supporting others, often partners or spouses with dementia.

This narrative review synthesised peer-reviewed evidence published over the last two decades concerning the experiences of carers aged over 75 years, specifically exploring whether their experiences differ from those of younger carers. Four electronic databases were searched and 4102 publications were identified. Eighteen studies involving over one thousand carer participants were included (11 quantitative, 6 qualitative, and 1 mixed-methods study). Most studies came from Europe or North America and almost all were cross-sectional, but few directly compared younger and older carers, making it difficult to determine whether carers’ experiences vary with age. Quantitative studies generally emphasised the challenges of caring and frequently highlighted, for example, relationships between carer characteristics and negative outcomes such as burden. Qualitative studies were often more positive, emphasising carers’ active responses and the rewards of caring. The normality of caring was highlighted, with some suggesting that caring may be less challenging for older than for younger carers.

As with younger carers, being an older carer can be both rewarding and difficult. Our understanding of the experiences of these older carers would be enhanced with more research specifically comparing older and younger carers or comparing older carers and those not in a caring role. Carers are diverse and future research should explore the experiences of carers from different demographic groups. More longitudinal research perhaps focusing on caring dyads and mutual caring is needed.

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'Tinged with bitterness': re-presenting stress in family care

The provision of care within families, and specifically the difficulties within such relationships, has become the focus of much research, legislation and debate in recent years. This paper explores carers' and carees' talk about 'stress', home-based care. Carers' and carees' accounts are presented to theorise the construction of difficulties in the present relationship--focusing in particular on the taking up of or resistance to roles and responsibilities within the family. Family care is re-presented with a focus on language, and a reflection on how such relationships can become tinged with bitterness.

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From 'conductor' to 'second fiddle': older adult care recipients' perspectives on transitions in family caring at hospital admission

Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients’ perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care.

Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults’ perspectives about the impact of hospital admission on established family caring relationships.

Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design.

Setting: Interviews were conducted in older adults’ place of residence in northwest England between June 2009 and July 2010.

Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69–89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions.

Findings: For community-dwelling older adults, family carers are conceptualised as ‘conductors’; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults’ hospital admission, family carers find themselves in the role of ‘second fiddle’, their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients’ behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults’ wellbeing across settings.

Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.

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Listen to the true voices

Drawing on the case of a women who was brain injured following a traffic accident being cared for by her husband, this article highlights why it is important that social workers listen to carers when assessing caring situations. Carers need social workers who can listen to them and can learn from them.

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'Young carers' and disabled parents: time for a change of direction?

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.

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Culture shift: carer empowerment and cooperative inquiry

Government policy has directed local services to address the needs of carers as a way of maintaining care in the community. This study was initiated to enable carers to develop an information pack based upon their identified needs. Cooperative inquiry was the method used to ensure full participation of the carers. Group meetings were already in existence through a charity organization who provides a carers support network. The first author participated in a number of carers group meetings. Cooperative inquiry was used to clarify a number of themes identified and reflective cycles ensured that those themes remained relevant. It was found that carers did want to be involved in their relative's care, not as passive recipients but as collaborative care providers. To do this they need to be fully informed of the processes of care provision. Carers need information that is relevant, easily accessible and obtainable in varying degrees of comprehension. This study suggests that a culture shift within mental health nursing is necessary if professionals are to recognize that a perceived lack of support may lead to a breakdown in relationships between the carer, the person being cared for and the professionals.

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Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia

Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care.

A pre-test–post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates.

After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care.

This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.

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An education programme for social care staff: improving the health of people who have a learning disability and epilepsy

This article will describe and examine course feedback from a local training initiative, which contributes to the improvements in the health status of people with a learning disability, who have epilepsy. The aim is to analyse how an education programme that focused on epilepsy and its management, together with a borough wide epilepsy protocol developed the skills of the local workforce. This education programme provided a framework for social care staff, enabling them to work both safely and effectively in their support of individuals with learning disabilities that have epilepsy. Learning disability nurses led this training initiative, in response to the health needs of people with learning disabilities. Success was achieved through the collaborative working across a number of agencies and through consultation with family carers and people with learning disabilities. For the purpose of this article the term social care staff refers to people employed within the community residential/day services both in statutory and nonstatutory agencies.

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Burden of caring: risks and consequences imposed on caregivers of those living and dying with advanced heart failure

Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.

Recent findings: A systematic search in PubMed over the period 2013?2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.

Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.

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'I realised that I wasn't alone': the views and experiences of young carers from a social capital perspective

The concept of social capital is very much an ‘adult’ concept, created by adults for adults, with children as the passive recipients of, primarily, parental social capital. The concept has been broken down into three particular subcategories – bonding (getting by), bridging (getting on) and linking (getting around). However, these subcategories equally do not relate readily to children and young people nor to different groups of young people. Young carers, for example, are a hidden population and their circumstances are relatively unknown, not least in terms of their social networks and access to social capital within the confines of their caring role. This article draws on a research study of 20 young carers in Scotland to explore the views and experiences of this particular group about their social networks and experiences of relationships with others, such as the family, friends and teachers. It concludes that young carers tend to keep their friends, family, and community networks separate from each other, and coupled with their perceived resilience and desire for self-sufficiency, this separation and protection of their individual social networks may result in reduced access to social capital in terms of getting on rather than getting by.

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Health care professionals' support for older carers

This paper examines four specific themes relating to older carers' experience: care-giving in the context of particular roles and relationships embedded in biographical histories; care in the context of dementia; care involving skilled or complex health care-tasks; and care of an intimate/personal nature. In each case, we look at the nature of support provided by health care professionals. Analysis of the data suggests several conclusions. Older carers are carrying out a range of tasks including complex health care tasks, many of which were once part of a nurse's remit and role. Nurses approach older carers as a unique but not homogeneous group and acknowledge many of their distinct needs as well as their right to choice concerning the extent of their involvement in care-giving. However, this approach conceals several implicit assumptions and expectations about the role of older carers. In particular, professionals' emphasis on older people's individual choice jars with the latter's own experience of reciprocity existing within the context of lifetime relationships. The paper suggests that modifications have to be made in professionals' approach if older people are to be presented with choice and support in the care-giving they perform.

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Attachment representations in people with dementia and their carers: implications for well-being within the dyad

Objectives: The process of developing and living with dementia may activate attachment feelings and behaviours in people with dementia (PwD) and their carers. By obtaining information from both PwD and carer, we aimed to provide information on the nature and concordance of attachment patterns within the dyad and to examine the relative contribution of attachment representations in PwD and carers to the well-being of both parties.

Method: Ninety-seven PwD and their carers completed categorical and dimensional ratings of attachment. PwD also rated their self-concept, mood and quality of life. Carers rated the functional ability of PwD and neuropsychiatric symptoms and measures of subjective well-being.

Results: People with dementia reported more insecure than secure attachment, with the most frequently reported style being dismissive attachment. Attachment security for PwD was related to more positive self-concept and less symptoms of anxiety. Attachment was not related to quality of life in PwD, but mood and self-concept were strong predictors of quality of life. Carer attachment security was related to their psychological health. Distress at symptoms and MMSE score of the PwD were the strongest predictors of stress. There was no association between PwD and carer attachment styles; PwD working models of attachment did not predict carer well-being and vice versa.

Conclusion: Attachment representations may be important for the psychological well-being of PwD and carers, but there was no evidence of the reciprocal nature of attachment within these dyads.

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Place, policy and practitioners: On rehabilitation, independence and the therapeutic landscape in the changing geography of care provision to older people in the UK

A growing body of literature in geography and other social sciences considers the role of place in the provision of healthcare with particular interests emerging around the role of the psychological, social and cultural aspects of place in care provision. As healthcare stretches increasingly beyond the traditional four walls of the hospital, so questions of the role of place in practices of care become ever more pertinent. In this paper, we examine the relationship between place and practice in the care and rehabilitation of older people across a range of settings, using qualitative material obtained from interviews and focus groups with nursing, care and rehabilitation staff working in hospitals, clients’ homes and other sites in England. By analysing their testimony on the characteristics of different settings, the aspects of place which facilitate or inhibit rehabilitation and the ways in which place mediates and is mediated by social interaction, we consider how various dimensions of place relate to the power-inscribed relationships between service users, informal carers and professionals as they negotiate the goals of the rehabilitation process. We seek to demonstrate how the physical, psychological and social meanings of place and the social processes engendered by the rehabilitation encounter interact to produce landscapes that are more or less therapeutic, considering in particular the structuring role of state policy and formal healthcare provision in this dynamic.

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Immigrants and Long-distance Elder Care: An Exploratory Study

In this paper we explored the rationales and the processes among five Ghanaian immigrants residing in two cities in the Mid-Atlantic region of the USA for providing care and support to their older adult relatives in Ghana. Although some of our participants indicated that elder care duties could sometimes be overwhelming, all expressed their willingness and desire to continue to provide care for their older adult relatives. Provision of elder care was viewed as a way to show family solidarity, and a means to demonstrate respect and appreciation to one’s older adult relatives and others who had provided support in the past. Our findings suggest older adults in Ghana can still rely on their family members who have migrated for care and support.

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'He will finish up caring for me' : people with learning disabilities and mutual care

Until recently, the carer's perspective has dominated research on families who include someone with a learning disability and recent legislation has underlined the carer's rights. Previous research has found that some more able people with learning disabilities were very aware of their parents' growing needs, and were taking on responsibilities within the family to help and support their carer/parents. However, recent legislation still dichotomizes family members into carers and cared-for people. The present paper is based on a research study of the impact of the UK Carers Act 1995 on families with someone with a learning disability. It involved canvassing the views of people with learning disabilities about their experience of assessments and their relationships within the family. The present authors found that many people with learning disabilities expressed empathy for their carer's point of view and that several people (including some who had high support needs themselves) were performing care tasks for their elderly parents. However, no one appeared to recognize the situation as one of mutual care, and parents generally carried on defining themselves as carers since they took responsibility and exercised control. The present authors conclude that mutual caring is far more common than is recognized and includes people with severe learning disabilities. A more holistic approach to assessment of needs is required that can take into account the complex web of interdependence within a family. Rather than categorizing people into ‘carers’ and ‘cared-for’, the present authors suggest a model that recognizes mutually supportive partnerships within the family.

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Matter of discourse

Caregiving within families is often complex and can be fraught with relationship difficulties. Paying attention to the way people speak about care, relationships and difficulties can shed light on how practitioners can fruitfully work with caregivers and care-receivers. Looks at how a sound understanding of language through discourse analysis can help social workers in their practice.

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Treatment decision-making in cancer care: the role of the carer

Aims and objectives.  This study explores the role of the carer in treatment decision-making in cancer care.

Background.  Literature about involvement in treatment decision-making tends to focus on patients and clinicians, with the carer rarely included. The absence of carers is problematic because the management of illness is often carried out in the context of complex networks of relationships. Although current policy encourages health care practitioners to work in partnership with family members, implementation is troubled by a lack of understanding of the significance of interpersonal relationships and interactions and the role of the relationship throughout the course of the illness experience. Despite awareness, there is little systematic, coherent analysis of the complexity of these interactional dynamics and, in particular, consideration of the implications for involvement and treatment decision-making.

Design.  Qualitative, longitudinal.

Methods.  Three serial semi-structured interviews with 66 patients and 43 carers within the first year following a diagnosis of cancer. A descriptive and thematic approach to data analysis was adopted.

Results.  Carers are involved in treatment decision-making in cancer care and contribute to the involvement of patients through their actions during, before and after consultations with clinicians. Carers can act as conduits for information from patient to clinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to consider whether to have treatment or not and which treatment.

Conclusions.  Our study has highlighted the deficiency of models that fail to acknowledge the role of the carer in the treatment decision-making process. We propose the adoption of a relational approach by the inclusion of the carer in conceptual frameworks and recommend triadic (patient, carer and professional) models of involvement.

Relevance to clinical practice.  Cancer care clinicians should recognise and actively involve the carer as well as the patient in treatment decision-making.

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Burden of informal carers of mentally infirm eldery in Lancashire

OBJECTIVES: To compare the burden of supporting demented and non-demented mentally infirm elders in an English community; determine the prevalence of emotional distress in carers and to investigate the relationship between carer well being and duration of care giving.

DESIGN: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer socio-demography, carer-dependant interpersonal relationship in relation to care giving and care-recipient dependency needs using a modified version of the CADI; and, the 28-item GHQ.

SETTING: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton- Le-Fylde and Over-Wyre.

RESULTS: Ninety one (72%) carers of the elderly mentally infirm participated in the study. Carers (n = 48) of the demented experienced significantly more burden, including psychological and physical health problems than carers (n = 43) of the non-demented (P = 0.001). The prevalence of emotional distress in all carers was 42% (dementia supporters = 56%, non-dementia supporters = 26%). Emotional distress in supporters was directly related to the degree of difficulties (particularly lack of private time, loss of control in caregiving tasks, patient behavioural problems) experienced in care giving, and, the degree of patient dependency needs. Carer/patient interpersonal relationship tended to worsen as care giving progressed; however, no significant association was established between duration of care and emotional distress in carers. Out of 51 carers receiving respite admission services, six (12%) considered such admissions as additional burden.

CONCLUSIONS: Carer burden, including psychological and physical health concerns, was comparatively greater in carers of the demented than in carers of the non-demented. Respite care services although beneficial to most care givers, may constitute further burden to some. Factors accounting for these observations are explained. To ameliorate carer burden, measures enabling greateravailability of private time, and, improving care giving skills, should be encouraged.

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