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Cultural factors

The following resources examine cultural and social factors that affect caring situations and relationships.

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).
 

Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

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A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

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Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services. 

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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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Associations of knowledge of Alzheimer’s disease and memory loss and employment status with burden in African American and Caucasian family caregivers

Caring for an individual living with Alzheimer’s disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer’s disease and memory loss and caregiver burden. To fill this gap, a cross sectional, correlational design was employed to collect data from a convenience sample (N = 104) of African American and Caucasian dementia family caregivers. For this study, caregivers ranged from 25 to 89 years of age with African American caregivers possessing significantly lower levels of knowledge about Alzheimer’s disease and other dementias compared to Caucasian caregivers, p <.001. There were 44 caregivers who scored 41 or greater on the Caregiver Burden Inventory corresponding to moderate to severe and higher levels of burden. Results of hierarchical multiple regression models indicated that higher levels Alzheimer’s disease knowledge was significantly associated with lower caregiver burden for all caregivers, B = −0.294, p <.01. Additionally, employment status was significantly associated with caregiver burden. This study highlights the benefits of including disease specific knowledge within educational components of dementia related interventions and programs involving families.

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Caregivers’ causal attributions of their relatives’ mental illness and the association with stigma

Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings. 

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Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea

Background: Although familial involvement during inpatient care is not uncommon in western countries, the types of caring activities that family members in Asian countries provide are significantly different. These activities may place the family member at risk from a health care-associated infection. This study aimed to examine whether the role of patients' families has been accounted for in the infection prevention and control (IPC) guidelines and policy, using examples from Bangladesh (low-income country), Indonesia (middle-income country), and South Korea (high-income country). Methods: The World Health Organization website and Institutional Repository for Information Sharing, Centers for Disease Control and Prevention website, Australian Government Web Archive, Open Grey, Grey Matters, World Bank, and advanced Google search, as well as the Health Department/Ministry of Health websites for each target country and 4 western countries (Australia, Canada, England, and the United States) were searched. Other databases, such as Embase, Medline, CINAHL, Global Health, ProQuest databases, Google scholar, Web of Science, and Scopus were also searched. This was to review the reflection of the cultural influence in IPC policies/guidelines by reviewing those from the global organizations, which are often used as a blueprint for policy development, as well as those from western countries, which hold different cultures in care arrangement. Search was conducted with attention to the key areas: definition and role of carer in the acute health care facility, involvement of patients/family members in IPC activities, patient and family member hand hygiene, and IPC education. Results: Ninety-two articles were identified based on the criteria for the study. Only 6 acknowledged that care is provided to hospitalized patients by their family members, and only 1 recommended that family members receive the same level of training as health care workers on IPC precautions. Other guides recommended the provision of information on IPC measures as means of patient involvement in the IPC program. Recognition of family caregivers or inclusion of them in the IPC strategies was not included in the target countries' guidelines. Conclusions: Although health care workers are the primary actors when it comes to providing care in acute health care settings, it is important to expand the IPC guides by considering the role of other caregivers. Policies and guidelines should reflect the cultural influence over healthcare. This is especially true when cultural values strongly influence over healthcare arrangements and the healthcare accommodates these cultural influences in the practice. Further work needs to be undertaken on the level of training/education provided to family members in Bangladesh, Indonesia, and South Korea. 

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Palliative Caregivers’ Spirituality, Views About Spiritual Care, and Associations With Spiritual Well-Being: A Mixed Methods Study

Background: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being. Aim: To examine caregivers’ spirituality, religiosity, spiritual well-being, and views on spiritual/religious support. Design: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality’s role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). Results: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P <.001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P =.005) and meditated (P =.006) more following patients’ diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P <.001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care. Conclusions: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met. 

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Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

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Dementia caregiver intervention development and adaptation in the Vietnamese American community: A qualitative study

Objectives: The purpose of this study was to obtain input and feedback on a proposed intervention to reduce stress and enhance the health of Vietnamese dementia caregivers. Methods: Sixteen semi-structured, in-depth interviews and two focus groups were conducted with a total of 21 key stakeholders (i.e., family caregivers, professionals, and community leaders). Results: Several themes emerged from the data, and these themes fell into two major domains: the first domain was recruitment and engagement into the intervention: (1) importance of faith-based institutions, (2) inclusion of multiple family members in the intervention, (3) community empowerment/ownership, and (4) importance of credibility and trust. The second domain included themes on intervention content: (1) education about Alzheimer’s disease and dementias and (2) tailoring the intervention to caregivers’ needs. Conclusions: Findings indicate that the proposed intervention could be very beneficial to caregivers, but slight modifications needed to be made. 

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

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

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Psychological well-being of Chinese Immigrant adult-child caregivers: how do filial expectation, self-rated filial performance, and filial discrepancy matter?

Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.

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Caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer in Ghana

Introduction Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context. Aim To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer. Methods In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data. Results Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring. Conclusion Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.

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Internalized stigma and its correlates among family caregivers of patients diagnosed with schizophrenia in Changsha, Hunan, China

Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support. 

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Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

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Caregiving centenarians: Cross-national comparison in Caregiver-Burden between the United States and Japan

Background and Objectives: The personal distress associated with caring for a family member has been well documented; however, questions about the burden of caregiving for centenarians and cross-national differences in the caregiving context, remain unanswered. Research Design and Methods: This study includes reports by caregivers of 538 near-centenarians and centenarians in the U.S. and Japan: 234 from the Georgia Centenarian Study and 304 from the Tokyo Centenarian Study. Basic descriptive and multivariate regression analyses were conducted. Mean levels of caregiver burden and near-centenarian and centenarians’ characteristics (as predictors) for caregiver burden were compared between the U.S. and Japan. The near-centenarian and centenarians’ functional capacity and personality were assessed as predictors. Results: Differential predictive patterns in caregiver burden were found in the two groups. In the U.S., near-centenarian and centenarians’ agreeableness and conscientiousness were negatively associated with caregiver burden; whereas the near-centenarian and centenarians’ neuroticism and number of diseases were positively associated with caregiver burden. In Japan, the near-centenarian and centenarians’ activities of daily living, openness, and agreeableness were negatively associated with caregiving burden. Interaction effects between functional capacity and personality, on caregiver burden were observed only in the U.S. In the U.S., higher levels of agreeableness and openness significantly changed the level of caregiver burden associated with vision problems and a greater number of diseases. Discussion and Implications: Cross-national comparative predictors of caregiving burden between the two countries emphasized that caring for centenarians should be understood in the caregiving context, as well as the social context.

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Experiences of Living in the Community for Older Aboriginal Persons With Dementia Symptoms in Taiwan

Background and Objectives Improving quality of life for community-dwelling older persons with dementia symptoms (PWDS) and family caregivers requires promoting dementia-friendly communities (DFC). However, little is known regarding older Taiwanese Aboriginal PWDS' experiences of living in the community. We explored these experiences for older Atayal PWDS and their families in Taiwan. Research Design and Methods This grounded theory research used in-depth interviews to explore the perspectives of older PWDS (n = 4), their family members (n = 3), and key persons (n = 10) in an Atayal community in northern Taiwan. Data were analyzed using constant comparative analysis. Participants were interviewed between January and May 2015. Results Participants' experiences were captured by the overarching concept of "low dementia awareness, high family-like ambience in the community." Despite the low/absent community awareness of dementia, older Atayal PWDS functioned as freely in the community as at home due to a family-like supportive environment. Aboriginal PWDS and their families also faced environmental challenges, e.g., environmental constraints and barriers to transportation access. Discussion and Implications Our results suggest that this Aboriginal community and culture offer important DFC components, and these strengths could be further studied to enhance DFC models elsewhere. Despite these strengths in supporting PWDS, environmental challenges to transportation access still cause difficulties for PWDS and their families and need improvement. The Atayal community's low dementia awareness suggests that services introduced must be culturally appropriate and nondisruptive to existing supportive helping systems. Our study can be a model for future studies to understand and identify PWDS' needs in Indigenous communities.

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Complexity of care: Stressors and strengths among low-income mother-daughter dyads

Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population. 

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Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care

Background and Objectives By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. Findings Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. Implications Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.

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Cultures of volunteer care? A comparative study of Australia and Denmark

This article seeks to understand two puzzling findings from a comparative study of volunteer care work: that volunteers in Denmark are perceived to be cost-adding, while volunteers in Australia are perceived to be cost-saving; and that volunteers in Australia are perceived to be better than paid workers, while volunteers in Denmark are considered second-best to paid workers. Using a 'cultures of care' framework, this article explores whether these articulations reflect on culturally determined care ideals. The findings suggest that different cultures of care exist. Differences are explained by the development of the two welfare states.

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Their Last Breath: Death and Dying in a Hmong American Community

Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.

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Stigma phenomenon to dementia in Iranian population: A phenomenological study

Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method. In order to analyze the data, the Colaizzi's descriptive phenomenological method was used. The target population consisted of all patients with dementia and their family members in neurological clinics of Tehran. We interviewed with patients and one of the main family members until data saturation. Participants included the main family members (spouse and children) of people with dementia (nine women and six men) who were selected by a nonrandom purposeful sampling method. Results: Two main themes emerged from data analysis: dysfunctional beliefs and negative social attitudes. Each main theme integrates the classes and clusters which are constituted by formulated meanings. Conclusion: Dimensions of stigma, such as dysfunctional beliefs and negative social attitudes, in addition to undesirable effects on patients and caregivers lives, is considered as a serious obstacle to effective caring and providing a good quality of life. It can be concluded that, higher levels of awareness, management, and coping with this powerful phenomenon are capable of preventing, rehabilitation, and improving the psychosocial health in elderly population.

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Raising the curtain on stigma associated with dementia: fostering a new cultural imaginary for a more inclusive society

Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.

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Prevalence and predictors of family accommodation in obsessive–compulsive disorder in an Indian setting

Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.

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The "Last Child": Lone Family Caregivers in St. Croix, US Virgin Islands

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the "lone family caregiver." Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice "care across distance," as it offers an alternative example of how families manage care in the context of migration. 

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Innovating Long-Term Care Provision in Mediterranean Welfare States: A Comparison Between Italy and Israel

Social innovations in long-term care (LTC) may be useful in more effective responses to the challenges of population aging for Western societies. One of the most investigated aspects in this regard is the role of family/informal care and strategies to improve its integration into the formal care system, yielding a more holistic care approach that may enhance opportunities for aging in place. This article reports the findings of a comparative research focusing on the Italian and Israeli LTC systems as representative of the Mediterranean "family-based" care model. To analyze the innovative solutions that have been adopted or are needed to improve LTC provision in these two contexts, focus groups and expert interviews have been carried out in both countries to identify the most relevant challenges and responses to them and to highlight promising policies and strategies to be adopted or up-scaled in the future. These include multidisciplinary case and care management, a stronger connection between prevention and LTC provision, and more systematic recognition of the role and limits of informal caregivers' contributions.

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The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers

The study evaluated how changes in the status of women in the Israeli Arab sector are perceived in light of the role of women as main caregivers of older adults. Interviews with 25 older adults and 27 family members were conducted. Qualitative analysis consisted of constant comparisons and contrasts of relevant themes. Two main themes emerged from the interviews. The first theme was the expected and actual role of women. The immediate response of most interviewees was the expectation that women are responsible for housework in their own home and in that of their aging parents. The second theme was the changes in the woman’s status in the Arab society. Most respondents noted that women today are very busy, and they sometimes work outside the home. In other words, the themes reflect the conflict between tradition and the rules that were followed in the past, and the changes that have appeared in recent years.

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The Arabic and Hebrew versions of the caregiving ambivalence scale (CAS): examining its reliability, validity, and correlates among Israeli caregivers of individuals with Alzheimer's disease

Objectives: Providing care for family members with Alzheimer's disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers' ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings. Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28). Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique - although modest - contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers. Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.

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Interrelatedness of Distress Among Chinese-Speaking Patients and Family Caregivers

Background: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery. Objective: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada. Methods: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis. Results: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being. Conclusion: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care. Implications for Practice: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient–family-caregiver dyad needs to be considered as the unit of care.

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The influence of individualistic and collectivistic morality on dementia care choices

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

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"In the Bengali Vocabulary, There Is No Such Word as Care Home": Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

Background and Objectives: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.; Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed.; Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks.; Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

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Impact of HIV and AIDS on rural elderly caregivers in Chiang Mai Province, Thailand

The UN General Special Assembly on HIV/AIDS reported that Thailand's elderly are living on the edge of poverty. Those who become caregivers for the children who have been orphaned by AIDS incur even greater challenges. The 2007 Survey of Older Persons of Thailand (SOPT) concluded that there is a range of financial and social safety nets provided by the government, nongovernmental (NGO), and faith-based organizations (FBOs) to help the elderly caregivers and their families. The research offered limited studies on Thailand's elderly caring for these children. The purpose of this phenomenological study was to explore the social, religious and familial experiences of this population. In-depth interviews were conducted with 14 elderly caregivers participating in the Grandma Cares Program (GCP) located in the province of Chiang Mai. They were asked about their caregiving experiences, cultural and Buddhist beliefs, and programs that help them. Data were verified through member checking with a translator. The details of the caregivers' experiences and environments were transcribed and analyzed with Creswell's 6-step process to identify textural and structural themes and patterns. Results of this study indicated that caregivers gained comfort and strength from Buddha's teachings and cultural beliefs, but they would like more support. 

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An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

Objectives: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.; Methods: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.; Results: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.; Significance Of Results: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

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Chinese American Family Caregivers' Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers' perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers' perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers. 

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Caregiving Across Diverse Populations: New Evidence From the National Study of Caregiving and Hispanic EPESE

Background and Objectives: The current study employs population-based data to determine the extent to which stress and coping factors are related to self-rated health and distress for informal caregivers (CGs) from the 3 largest racial/ethnic groups in the United States (non-Latino White, African American, and Mexican American).; Research Design and Methods: Data on primary, informal CGs are obtained from the 2015 National Study of Caregiving (NSOC) (n = 667) and the 2016 Hispanic Established Populations for the Epidemiologic Studies of the Elderly (H-EPESE) CG supplement (n = 287). Logistic regression models of health are presented for all CGs and specifically for dementia CGs.; Results: Caregiving intensity is related to health for non-Latino White CGs and African American dementia CGs. Support from family and friends is related to better self-rated health, but only for African American dementia CGs. While better relationship quality is related to better health for African American CGs and White dementia CGs, formal support utilization is related to worse CG health for Mexican American dementia CGs.; Discussion and Implications: Findings emphasize the importance of earlier detection and intervention with CGs at the beginning in the caregiving career, the interplay of formal and informal support, and appropriate ways to intervene with dementia CGs. Culturally tailored home- and community-based care options are needed to supplement the low levels of CG support, especially for the Mexican American population.

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Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review

Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions. 

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What is the meaning of filial piety for people with dementia and their family caregivers in China under the current social transitions? An interpretative phenomenological analysis

The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes social transitions. The study aims to understand the meaning of filial piety for people with dementia and family caregivers. Semi-structured interviews with people with dementia (n = 10) and family caregivers (n = 14) were conducted. Data were analysed using interpretative phenomenological analysis. Three themes emerged: (a) ‘Being filial is a cultural continuity and my future investment’. (b) ‘The changed perception and ways of being filial’. (c) ‘Filial responsibility is a social and cultural convention, but not my personal choice’. This study highlights the importance of cultural values in family care decision making and in shaping filial responsibilities. It indicates that filial obligation can be maintained through social support, even though the nature of filial piety has been changed by social transitions.

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Service use and perceptions of service effectiveness by parents of individuals with intellectual disabilities: comparing Jewish and Arab Israeli parental caregivers

Background: The relationship between ethnicity, service use and perceptions of service effectiveness is inconclusive. This study examined differences in service use and perceptions of service effectiveness between Israeli Jewish (Jewish) and Israeli Arab (Arab) parental caregivers of individuals with intellectual disabilities and dual diagnosis of psychopathology. Methods: Parental caregivers (n = 186) of individuals with intellectual disabilities or dual diagnosis, aged 10 to 30 years, completed a self-report questionnaire. Results: Arab parental caregivers perceived health services to be more accessible than did Jewish caregivers, but there was no difference between the two groups in the use of the services. Overall, greater enabling factors and accessibility were associated with higher use of education and social services. No differences were found between the groups in their perceptions of service effectiveness. Conclusion: Arab family caregivers use education and social services less than do their Jewish peers, possibly because they have fewer enabling resources. The finding that both groups reported similar use of health services may be explained by a shared perception that informal help may not be suitable for dealing with situations of psychopathology. The similar perceptions of service effectiveness may be explained by extensive services available in Israel, to the satisfaction of both groups, or by the fact that participants perceived these services as their only alternative, and therefore fear losing them.

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A Comparison of Rural and Urban Hospice Family Caregivers' Cancer Pain Knowledge and Experience

Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated. Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain. Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience. Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups. Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences.

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Explanatory models of mental illness among family caregivers of persons in psychiatric rehabilitation services: A pilot study

Background: Understanding the explanatory models of family caregivers is particularly important in interdependent contexts like India, where they often play a significant role in the help-seeking behaviours, treatment decision-making and long-term care of those diagnosed with mental illness. Aims: This study was planned to explore the diversity of explanatory models among family caregivers at a centre for recovery-oriented rehabilitation services in South India. Methods: The sample for this study included 60 family caregivers of patients referred to Psychiatric Rehabilitation Services within a tertiary-care hospital for mental health and neurosciences. Bart’s Explanatory Model Inventory, including a semi-structured interview and a checklist, assessed the family caregivers’ explanatory model of distress on five domains: identity, cause, timeline, consequences and control/cure/treatment. Results: The results indicated the coexistence of multiple causal explanatory models including psychosocial, supernatural, situational and behavioural contributors. While 36.7% of the caregivers displayed two explanatory models, 33.3% of the caregivers held three explanatory models and 16.6% of the caregivers endorsed four explanatory models. Caregivers shared their concerns about varied consequences of mental illness but less than half of them were aware of the name of the psychiatric disorder. While they accessed various forms of treatments and adjunctive supports such as prayer, medication was the most frequently used treatment method. Conclusions: The findings have implications for collaborative goal setting in recovery-oriented services for persons with mental illness and their families. 

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The support needs of family caregivers of persons with dementia in India: Implications for health services

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India. 

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Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Introduction: Mexican Americans (MAs) are the largest, fastest growing Latino subgroup in the United States, yet their use of hospice is limited. To better understand this disparity, the authors conducted an integrative review focused on MA caregiving families’ end-of-life (EOL) care decisions. Method: In this literature review, the authors content analyzed results and discussions of 22 research studies focused on EOL decisions, which sampled MA adults at least 50 years old and/or families. The authors used Whittemore and Knafl’s integrative review process, employing constructs from the Ethno-Cultural Gerontological Nursing Model. Results: Topics included attitudes toward hospice, life-sustaining treatment, advance care planning, EOL decision making, perceptions of a good death, and life-limiting illnesses. EOL research for MA caregiving families is meager, largely atheoretical, and rarely validated by subsequent studies. Discussion: Nursing research is needed to extend theory and policy in order to skillfully match EOL care with MA caregiving families’ needs.

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Utilizing evidence-based assessment instruments to detect well-being and distress in English- and Spanish-speaking caregivers of individuals affected by dementia

Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable. 

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Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers

Aims: To identify dementia-friendly communities' indicators and their current conditions in Taiwan from the perspectives of people with dementia and dementia-family caregivers.; Design: This qualitative study explored the opinions and experiences of people with dementia and dementia-family caregivers regarding dementia-friendly communities.; Methods: Participants (16 people with dementia and 20 family caregivers) were recruited from neurological clinics, day care centers for people with dementia and support groups for family caregivers in the Taipei community from July - October, 2016. Data were collected in face-to-face interviews, which were tape recorded and transcribed verbatim. Transcripts were analyzed by Miles and Huberman's (1994) guidelines.; Results: Similar indicators for dementia-friendly communities were identified in Taiwan as in other countries, including dementia-friendly care services, dementia-friendly hospitals, dementia-friendly community environment, dementia-friendly transportation, dementia-friendly stores and shops, dementia friendly people, integrated dementia-related information and community contribution- and -involvement opportunities for people with dementia. However, Taiwanese people with dementia and family caregivers described no emphasis on the potential of people with dementia to contribute to developing dementia-friendly communities and more top-down expectations for the government's role.; Conclusion: These indicators can be a guide for developing and evaluating dementia-friendly communities in Taiwan. Differences between Taiwan and Western developed countries in indicators for dementia-friendly communities can be further explored. Community nursing assessment, interventions and evaluation based on these dementia-friendly communities indicators can be further developed.; Impact: This study developed indicators for dementia-friendly communities in an Asian country. These indicators can be used as a guide for developing and evaluating dementia-friendly communities.

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Caregiving for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home

Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.

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Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed. Carers from culturally and linguistically diverse communities experience considerably poorer culturally oriented practices in mental health services. Cultural responsiveness is a relevant framework for social work practice with carers and their relatives with mental illness who are from culturally and linguistically diverse communities.

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Experiences of caregivers of family member with schizophrenia in China: A qualitative study

Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.

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Caregiving, ethnicity and gender in Māori and non-Māori New Zealanders of advanced age: Findings from LiLACS NZ Kaiāwhina (Love and Support) study

Objective: This study investigates sex and ethnicity in relationships of care using data from Wave 4 of LiLACS NZ, a longitudinal study of Māori and non‐Māori New Zealanders of advanced age. Methods: Informal primary carers for LiLACS NZ participants were interviewed about aspects of caregiving. Data were analysed by gender and ethnic group of the LiLACS NZ participant. Results: Carers were mostly adult children or partners, and three‐quarters of them were women. Māori and men received more hours of care with a higher estimated dollar value of care. Māori men received the most personal care and household assistance. Carer employment, self‐rated health, quality of life and impact of caring did not significantly relate to the gender and ethnicity of care recipients. Conclusions: Gender and ethnicity are interwoven in caregiving and care receiving. Demographic differences and cultural expectations in both areas must be considered in policies for carer support. 

Policy Impact: Female predominance in caregiving is a robust finding in ageing studies. That men, particularly Māori men, received more informal care suggests that more research is needed to tease out influential demographic and cultural factors, to underpin equitable carer support services.

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Rural Dementia Caregivers in Southwest Texas: An Exploratory Study of Advance Directives and End-of-Life Proxy Decision Making

For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.

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Understanding Prevention and Management of Coronary Heart Disease Among Chinese Immigrants and Their Family Carers: A Socioecological Approach

Introduction: Health disparities among immigrants exist across socioecological domains. While Chinese immigrants face increased risk for coronary heart disease (CHD) after migration, the reasons are not well understood. Method: This descriptive qualitative study collected 18 semistructured interviews with Chinese immigrants with CHD and family carers from two Australian hospitals. Analysis was guided by the social-ecological model. Results: Poor knowledge and limited English proficiency increased CHD risk and difficulty navigating health care systems/resources. Interpersonal and family factors positively influenced health-seeking behaviors, acceptance of cardiac procedures, adoption of secondary preventive behaviors and information acquisition through social networks. A lack of culturally specific health information and programs in Chinese languages was described. Ethnic concordance between Chinese doctors and patients improved health literacy and engendered trust. Discussion: Culturally specific interventions could include health promotion materials in Chinese, inclusion of family in educational programs, and Chinese-focused public health campaigns about warning signs of heart attack.

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Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.

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Issues and challenges in comparing carers' quality of life in England and Japan: lessons from developing the Japanese version of the ASCOT-Carer

Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This article discusses the issues and challenges in conceptualising and comparing carers’ quality of life in England and Japan, based on developing a Japanese version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting carers in employment is a key concern in both countries, we particularly focus on this group of carers.

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Claiming rights: the future for carers and the need for a radical imagining

Extract: 

In this article, we explore the socio-political chasm that divides recognition and rights. Our focus is the Australian policy context, but many of the social and cultural issues that we identify have transnational relevance. Our own experience leads us to focus on carers of people with a disability, particularly those who provide intensive and long-term care: these carers are typically women whose caring role has occupied them for 70 or more hours per week for at least 15 years, and who face the poorest health and well-being outcomes (Carers NSW, 2014). We argue that those groups that have successfully embraced a rights agenda, such as women and people with a disability, have done so by combining grass-roots activism with a groundswell of theory building by scholars from within these groups with lived experience. We argue that carer advocacy and academic discourse around caregiving must likewise forge a space for carers to narrate their own lived experiences of discrimination and social oppression if the lives of the next generation of carers are to be characterised by the full rights of citizenship and participation, as well as recognition.

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Meaning in Stroke Family Caregiving in China: A Phenomenological Study

Meaning in caregiving plays an influential role in stroke family caregiver's perception and adaptation to caregiving. Although the role meaning plays in stroke family caregiving has been recognized, knowledge about this subject among the Chinese population is fragmented and sparse. Therefore, a hermeneutic phenomenological study was conducted as a first step in a program of research focused on Chinese caregivers utilizing a purposive sample of five stroke family caregivers living in China to explore the meaning of the lived caregiving experience. Data were collected through in-depth interviews and analyzed by a phenomenological hermeneutic interpretation. Meaning in stroke family caregiving was interpreted as suffering, an obligation, a personal choice, a meaningful opportunity, and a natural part of living. These meanings were dynamic and interconnected and were affected deeply by the Chinese culture in how caregivers experience, interpret, and cope with caregiving. Findings highlight the need to understand the culture-shaped meanings in caregiving to better support family caregivers and develop culturally tailored interventions.

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Ageism in informal care network members of older women

Objectives: Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women.; Design: Multivariate hierarchical linear regression modelSetting:Lower-income neighborhoods in an urban setting in the Midwestern USAParticipants:144 care network members of White and African American women aged ≥ 65 years Measurements: Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness.; Results: In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional.; Conclusions: Findings from the present study are consistent with past research suggesting that 'ageism' may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.

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Realist Review: Understanding Effectiveness of Intervention Programs for Dementia Caregivers

Purpose Caring for patients with dementia is a challenging issue entailing heavy responsibility. Many interventions for caregivers have been developed, but their effectiveness is not clear. This study aimed to examine how, why, and under what circumstances interventions for dementia caregivers affected their burden of caring. Methods Authors used a realist review approach to explore the evidence for how different interventions reduce the burden of dementia caregivers. We completed the literature review about the burden of dementia caregivers and extracted the theoretical concepts to explain context-mechanism-outcome configuration why an intervention may be effective in some situations and not others. Six databases were searched for experimental or quasi-experimental studies conducted from 2008 to 2017. Of 1,225 screened studies, 10 studies were eligible for inclusion. Results None of the studies included all the derived contexts while explaining in detail the mechanism of the intervention effectiveness. Among contexts, the variable of other family members requiring care was not included in all studies. Among the analyzed studies, no studies have applied repeated intervention. Most studies included only some variables of context and mechanism, and these variables did not directly explain the effectiveness of intervention. The effect of outcome variables was significant for each study, and the effects of research intervention and national services could not be separately described. Conclusion Authors conclude that Korean culture's emphasis on relationships with others increases the burden of care. In context, Confucian norms and traditional femininity of Korea were reflected in the core. It is necessary to check the homogeneity of participants and the design of intervention to verify the effectiveness of the outcome variable of psychological burden.

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Are the Elderly Perceived as a Burden to Society? The Perspective of Family Caregivers in Belgium and Kenya: A Comparative Study

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs).; Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya.; Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes.; Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being.; Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.

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The Role and Influence of Prostate Cancer Caregivers Across the Care Continuum

Background: Black men endure a disproportionate burden of morbidity and mortality related to prostate cancer (CaP). Increasingly family members are assuming the role of providing care and support to family members with chronic disease. Understanding the role and influence of the caregiver is a necessary part of developing resources to assist individuals learning to provide care.; Aim: The analysis aimed to explore CaP survivors' perceptions of the role and influence of family caregivers to better understand existing opportunities for improving experiences and outcomes for both the caregiver and the care receiver.; Design: Secondary analysis of qualitative interview transcripts. Data were analyzed to explore new inquiries related to CaP survivors' perceptions of family caregivers' role and influence at each stage of care. Content analysis was used to group data into established categories.; Data Source: Data included qualitative interview transcripts with 32 CaP survivors from the Florida Prostate Cancer Care and Survivorship Project.; Results: The role of the family caregiver is complex. Caregivers in this community seem to have a significant influence on behavior modification and cues to action for Black men with prostate cancer. According to the men in this group, caregivers functioned as normalizing agents, coordinating care and creating a new normal, throughout the various stages of care and survivorship.; Conclusions: Findings inform areas for future research to develop culturally tailored health promotion programs designed to improve outcomes and address the needs of both the family caregiver and the care receiver across the care continuum.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.

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Measuring familism in dementia family caregivers: the revised familism scale

Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).; Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.; Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".; Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.

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The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it.; Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.; Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.; Setting/participants:: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.; Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.; Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

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Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

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Exploring caregiving-related experiences among Chinese American and European American family caregivers of persons with mental illness

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

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The Perceived Caregiver Burden Among Turkish Family Caregivers Providing Care for Frail Older Adults

Purpose: The older population has reached to 8.5%, and the prevalence of frailty is reported as 39.2% in Turkey. The purpose of the study was to assess caregiver burden in families who care for frail older adults in Turkish culture.; Method: This descriptive study was conducted in Turkey between June and October 2017. Frail older adults who had no severe cognitive impairment were included. Data were measured using the Older Adult Information Form, Edmonton Frailty Scale, Caregiver Information Form, and Zarit Burden Interview.; Results: In total, 131 older person/caregiver dyads were analyzed; the Zarit Burden Interview mean score was 37.59 ± 18.20. Caregivers with less education and providing care more than 8 hours experienced a higher burden ( p < .05). The severity of frailty significantly correlated with the caregiver scores ( R = .36, p < .01).; Conclusion: The caregiver burden in Turkish family caregivers was found mild to moderate and correlated with the degree of frailty. Policymakers should focus on culture-specific formal caregiver services.

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Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.; Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.; Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.; Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

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Informal and formal care preferences and expected willingness of providing elderly care in Germany: protocol for a mixed-methods study

Introduction: In Germany, the number of elderly people in need of care is expected to increase from 2.4 million in 2015 to 3.2 million in 2030. The subsequent rise in demand for long-term care facilities is unlikely to be met by the current care structures and available staff. Additionally, many Germans still prefer to be cared for at home for as long as possible. In light of recent changes, such as increasing employment rates of women and growing geographical distances of family members, informal caregiving becomes more challenging in the future. The aim of this study is to explore preferences for informal and formal care services in the German general population, as well as the expected willingness of providing elderly care.; Methods and Analysis: A mixed-methods approach will be used to explore care preferences and expected willingness of providing elderly care in the German general population. A systematic literature review will be performed to provide an overview of the current academic literature on the topic. Qualitative interviews will be conducted with informal caregivers, care consultants and people with no prior caregiving experiences. A labelled discrete choice experiment will be designed and conducted to quantitatively measure the preferences for informal and formal care in the German general population. People between 18 and 65 years of age will be recruited in cooperation with a (regional) statutory health insurance (AOK Lower Saxony). A mixed multinomial logit regression model and a latent class finite mixture model will be used to analyse the data and test for subgroup differences in care preferences.; Ethics and Dissemination: The study has been approved by the Committee for Clinical Ethics of the Medical School in Hannover. Data will be treated confidential to ensure the participants' anonymity. The results will be discussed and disseminated to relevant stakeholders in the field.; Trial Registration Number: DRKS00012266.

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Development of the Family Stigma Stress Scale (FSSS) for Detecting Stigma Stress in Caregivers of People With Mental Illness

People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.

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Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia. Interviews were audio-recorded and data analysed using Colaizzi's technique. Analysis revealed the essential structure of a caregiver's journey with three major transitions, namely: (1) Crossing the threshold from ordinary world into caregiving world, (2) Trudging on the road of trials and obstacles, and (3) Settling into a new normalcy. Understanding the lived experience of Asian caregivers can help clinicians in targeting relevant support and information, and prepare new caregivers for the demands of their role.

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Influences on the access to and use of formal community care by people with dementia and their informal caregivers: a scoping review

Background: The literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia. Methods: We conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies. Results: A total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics. Conclusions: The access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.

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Turkish Adult Children as Caregivers of Parents with Alzheimer's Disease: Perceptions and Caregiving Experiences

There is substantial evidence suggesting that Western and non-Western caregivers of patients with Alzheimer's disease have different caregiving experiences depending on the cultural values they adopt. Although family-centered constructs such as familism and filial piety have taken some attention, there is still a paucity of research on how cultural values and norms shape caregiving appraisals, coping strategies, and formal service use specifically in Eastern-oriented contexts. The aim of this study was to investigate Turkish adult children caregivers' perceptions of Alzheimer's disease and caregiving experience. Researchers conducted in-depth interviews with 20 primary caregivers and analyzed data with interpretative phenomenological analysis. First, most caregivers viewed family disharmony as the main cause of the disease. Second, although burden is evident in their accounts, caregivers reported positive changes during their caregiving experiences, as well. Third, caregivers employ religious/fatalistic coping and they benefit from social support during their caregiving experiences. Forth, most caregivers opposed to nursing home placement because they view it as a morally improper act; they are afraid of neighborhood pressure; they perceive caregiving as a child's responsibility; they do not want their children to do so; and they do not trust conditions of care facilities in Turkey. Findings indicated that Eastern norms and values might have differential impacts on Alzheimer's disease caregiving outcomes. Hence, we invite mental health professionals to integrate culturally sensitive aspects into the possible intervention programs targeting Alzheimer's disease caregivers from non-Western contexts.

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Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

Objective: Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region. Method: This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims. Results: About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication. Significance of Results: EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

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Vietnamese-American family caregivers of persons with mental illness: Exploring caregiving experience in cultural context

While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.

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Enabling Social Change with Immigrant and Refugee Caregivers: Beyond Dualistic Difference to Intersectionality

A personal narrative is presented which explores the author's experience of participating in a case study of his work for an immigrant and refugee women's health organization in Australia, to deliver multilingual health education and peer support to informal family caregivers in Melbourne, Victoria.

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Women's perspectives on home‐based care for family members with chronic illness: An Interpretive phenomenology study

The number of people with chronic illness who need home‐based care is increasing globally. Home‐based care is socially constructed to be work carried out by women. However, little attention has been paid to the opinions of middle‐aged women caring for family members with chronic illness at home. In this study, Thai women's perspectives on home‐based care for family members with chronic illness using interpretive phenomenology were identified. Fifteen middle‐aged women were interviewed twice, and the data were analyzed using thematic analysis. Four major themes emerged: (i) role obligation; (ii) social life change; (iii) doing good things; and (iv) lack of support. Important findings were that care was considered a woman's duty owing to cultural beliefs. Most participants sacrificed their own needs to care for others, as doing good things is considered an important Buddhist belief. Caring for others decreased women's social networks, but they cared more for their own health. Support with finances, information, workplaces, and care recipients should be provided to women with care responsibilities. These results can help nurses to better understand women's caring roles and the consequences of home‐based care that influence woman's health.

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Applying the convoy model to support in care situations

This article considers the future of informal care situations, with a special focus on how social networks can support caring. Noting demographic changes and the endemic need for informal support, we outline the convoy model of social relations for proactive planning and contemporaneous caring. The article is grounded in empirical evidence, including comparative findings from four countries and about caring among two uniquely vulnerable populations: latelife remarried couples and lesbian and gay adults. Finally, we propose that caring be considered no longer an individual responsibility, but rather a family, community and societal responsibility basic to shared values and societal cohesion.

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The intersection of formal and informal care for older people in a multicultural society: the case of two adult day-care centres in Northern Israel

Despite being a relatively young society, Israel, like many other countries, has not escaped the global ageing phenomenon. About 11% of its population are aged 65 years or older; this compares with an average of 18% in many European countries. About 75% of Israel’s population are Jewish and about 21% are Arabs (CBS, 2017).[...] Despite the fact that more older people – from both communities – are now accepting a mix of support from their families alongside services, families are still the main source of care for older people in Israel (Katz et al, 2015).

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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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'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.

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Engaging men as fathers and caregivers: an entry point to advancing women's empowerment and rights

Engaging men and boys to do unpaid care work is key to achieving gender justice. This article argues that caregiving programmes with men can be effective and serve as an entry point to engage men as allies for feminist agendas. There is a need to increase the uptake and scale-up of such initiatives, while ensuring quality, local contextualisation and ownership, and full accountability to women and girls. Furthermore, such programmes must be connected with efforts to advance women's economic empowerment and rights, challenge social norms around caregiving, transform institutions, and be combined with progressive national policies to recognise, reduce and redistribute unpaid care work.

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Interrogating theories of care in the Indian context

Nussbaum's capabilities approach highlights the need for integrating vulnerability, dependency and care work with liberal principles of individuality and rationality. However, capabilities offer a statist, juridical and formal model of objectified care, whose adoption would lead to greater paternalism, especially in the context of public welfare institutions in India. This article argues that one needs to move beyond liberal theory, while engaging with vulnerability and care work in institutional contexts. It defends informal care as a multilayered practice in public sector institutions in India, to which deliberation is central. It acknowledges the inevitability of flexibility, interdependence, plurality and particularity in informal caregiving practice.

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A caring welfare state in South Korea: challenges and prospects

The purpose of this article is to examine the implications of care ethics in a Korean welfare state. It shows how Confucianism, developmentalism and neoliberalism can both promote and restrict the establishment of a Korean caring welfare state. Despite the fact that these Korean contexts can either support or undercut the development of a caring welfare state, it is clear that none of these contexts places particular importance on the value of care and care relationships. In the Confucian and neoliberal contexts, care is a family or private issue, while developmentalism fails to appreciate care due to its prioritisation of economic development.

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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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Women, work and care in the Asia Pacific Edited by M. Baird, M. Ford and E. Hill

Gender equality is at the centre of government policy agendas around the world. Boosting women’s labour force participation is seen as the key to economic growth and human development in developing economies, and as an important way of managing ageing population crises in advanced welfare states. Yet, there is scant recognition, especially in developing countries, of the significance of care responsibilities in shaping women’s participation in the labour market. Scholars have analysed the connections between gender, work and care in the rich countries of the Global North, but little research addresses the Asia-Pacific – a region that is home to more than half the world’s population and over 40% of domestic workers. In this compelling collection, the editors – Marian Baird, Michelle Ford and Elizabeth Hill – put the spotlight on this diverse and complex region.

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Defining and profiling family carers: reflections from Ireland

The word ‘carer’, meaning family carer, is now widely used, especially in Western cultures. However, it is open to interpretation, is employed differently depending on circumstance, sector and setting, is at times resisted as a label by carers themselves, and is evolving as a term and role. This contribution reviews the term ‘carer’ and how it is understood, with particular reference to Ireland. It begins with a brief overview of evidence about the profile of carers in Ireland, including who they support, and then discusses data from a survey of family carers conducted by Care Alliance Ireland – the survey specifically explored the term ‘carer’ and how it is deployed – and some of the implications of these findings for the provision of support to carers in Ireland.

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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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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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The Spiritual Challenges Faced by Family Caregivers of Patients With Cancer: A Qualitative Study

This qualitative study was conducted to investigate the spiritual challenges faced by Iranian family caregivers of patients with cancer. The findings showed, 2 main themes, including "spiritual crisis" and "spiritual coherence", and 6 classes, including "spiritual distress", "disappointment," "faith and trust in God," "praying," "inner peace," and "transcendence."

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Living under a cloud of threat: the experience of Iranian female caregivers with a first-degree relative with breast cancer

Backgrounds Breast cancer is a global threat to all women, especially those having close relatives with breast cancer. Women who were caregivers to relatives with breast cancer are more vulnerable to stress caused by the perception of heightened risk of cancer. Because health measures and breast health are affected by cultural beliefs and social status, information about breast cancer should consider the cultural beliefs and values of the society. Objectives This study explored the experiences of Iranian women who were caregivers to relatives with breast cancer. Methods In this qualitative content analysis study, 21 female caregivers of breast cancer patients were chosen by purposive sampling. Data were collected through interviews and analyzed using content analysis. Results Data analysis developed 3 categories: perception of the concept of risk, changing views about femininity, and management of perceived threat. Perception of the risk of breast cancer increased in caregivers, and they tried to manage the perceived threat. They considered the breast to be an important part of women's lives, and breast cancer in relatives changed their view of femininity. Conclusion Understanding the experiences of breast cancer family caregivers in different cultures can help in planning, counseling, and effective intervention.

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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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Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience

Dementia in Australia’s Aboriginal and Torres Strait Islander population is an area of significant health and community concern. In this article, we use a hermeneutic mode of interpretation to deepen understanding of experience and meaning in dementia for family carers of older Aboriginal people in urban Australia. Specifically, we draw from the hermeneutic concept of “world disclosure” to illuminate the dementia experience in three ways: through an artwork of the brain and dementia; through concrete description of the lived relation of caregiving; and through an epochal perspective on the significance of contemporary caregiving in dementia. Using narrative and visual knowledge, this three-fold approach brings to the forefront the importance of ontological and existential meanings which resonate for Aboriginal families in the dementia caregiving experience. 

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Struggles for recognition and redistribution: family carers and domestic workers in Spanish eldercare

Theories of social justice have identified the revaluation of caregiving work as a global challenge. Still, struggles for recognition are shaped by the specific cultural and institutional contexts in which they emerge. This article explores struggles for the recognition of caregiving work in Spanish eldercare, focusing on advocacy for family carers and for domestic workers. Drawing on interviews, findings reveal that domestic workers' needs are politicised to a greater extent than family carers' needs; empowerment and claims for workers' rights contrast with notions of self-care and mutual support. While the struggles are differentiated, the undervaluation of eldercare is a common theme.

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Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)

Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives.

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Responsibility for child and elderly care: who should cover the costs? A comparison of Baltic and Nordic countries

Using data from the International Social Survey Programme (2012), this study compares public attitudes towards who should cover the costs of caring for children and older people in five Nordic countries (Finland, Sweden, Norway, Iceland and Denmark) and two Baltic ones (Latvia and Lithuania). The study found interesting differences between both groups of nations: citizens from Baltic countries consider the role of the family more important than their counterparts in Nordic countries. Results show Latvians holding the most familistic views in terms of covering costs, and Swedish people the least. Individual socio-demographic variables are less important than national contexts in explaining these attitudes. The article finds important variations among the social-democratic countries and, surprisingly, in the case of childcare, Sweden shows higher differences to Denmark than to Latvia and Lithuania. This finding suggests that the social-democratic bloc in this respect is more heterogeneous than what is generally thought.

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Predictors of quality of life and depression among Korean‐American cancer patients and their family caregivers

Objective This study examined social, cultural, and appraisal factors associated with Korean‐American cancer patients' and their family caregivers' quality of life (QOL) and depression. Methods Data were from Korean‐American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. Results For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. Conclusions Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.

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Dementia and Migration: Family Care Patterns Merging With Public Care Services

This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties. Consequently, health personnel should be wary of stereotyping and generalizing groups through "othering" ideologies and rather try to explore, understand, and adjust to the present and often fluctuating set of needs, as well as be aware of how and by whom these needs are articulated.

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Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond

...this paper explores:

  • Insights into the role and experience of carers in different national contexts
  • Good practice examples of services, organisations and approaches which have sought to improve support to the carers of people with dementia
  • Policy and practice recommendations for key stakeholders such as policy makers, welfare services and employers

Given the traditional focus of Walgreens Boots in the US and the UK (and given very different policy contexts and welfare mixes), the review focuses on these two countries, with additional insights from other countries prominent in the literature and representing different welfare regimes. After searching the literature and following dialogue with UK and US respondents, this includes:

  • Norway (as an example of developments in a Scandinavian system with a comprehensive welfare state, an emphasis on maximising labour market participation and a commitment to gender equality)
  • Australia (as an example of an Australasian country with strong links to the UK)
  • South Africa (as an example of an African country with a younger population but a growing recognition of future needs as the population ages, as well as challenges with HIV-associated dementia)

Throughout the paper, there is an overarching question about the extent to which different countries are ready for the implications of the demographic changes they face, and there are regular textboxes which pose questions to government, to employers, to health and social care, and to broader society to help them reflect on key themes.

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

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

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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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Young-onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance

Objectives: Although dementia typically occurs in older people, it can also emerge in people aged younger than 65 years in the form of young‐onset dementia, the most common type of which is Alzheimer's disease (AD). However, few studies have examined the needs of persons with young‐onset AD (YO‐AD) and their families, and cross‐cultural research on the topic is even scarcer. In response, we investigated the situations, experiences and needs for assistance of carers of persons with YO‐AD in Brazil and Norway. Methods: As part of our qualitative study, we formed a convenience sample of Brazilian (n = 9; 7 women) and Norwegian carers (n = 11; 6 women) in 2014 and 2015, respectively, and analysed data in light of a modified version of grounded theory. Results: Carers' narratives from both countries revealed five common themes in terms of how YO‐AD affected carers' psychological and emotional well‐being, physical well‐being, professional and financial well‐being, social lives and need for support services. Conclusions: The infrequent differences between carers of persons with YO‐AD in Brazil and Norway indicate that carers' problems are highly similar regardless of cultural differences and public services provided. 

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Exploring experiences of informal carers of mental health: Developing community intervention in social work in Jordan

The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.

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Meaning in stroke family caregiving: A literature review

Meaning plays an important role in stroke family caregiving. Understanding meaning facilitates the development of effective interventions that support stroke family caregivers. However, knowledge about this subject is fragmented and sparse. This review fills this knowledge gap by examining existing findings regarding meanings in stroke family caregiving. Specifically, a search of seven databases and a manual search produced a total of five articles for review. Embedded in the lived experience of caregivers, meanings in stroke family caregiving were interpreted as a physical, psychological, and social suffering: an obligation resulting from moral ethics, religion doctrines, others' expectations, and social norms and a subjective choice based on love, hope, and a sense of reciprocity. However, the detailed process of how and when caregivers identify meaning in caregiving needs further exploration. To gain a full picture of meaning in caregiving, more studies should be conducted among stroke family caregivers from different cultural, economic, and social backgrounds.

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Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews ([i]n[/i] = 25), observations of agency home care visits ([i]n[/i] = 9) and analyses of policy and home care agency documents ([i]n[/i] = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. 

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Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

Implications for Rehabilitation

  • Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress. 
  • More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.
  • Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.
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Young adults with severe intellectual disability: Culture, parent, and sibling impact

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.

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The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: a qualitative study

Knowledge about family caregivers in rural areas remains sparse. No studies to date have addressed the sociocultural aspects in caregiving, thus neglecting potentially significant data. This study aimed to explore and better understand family caregivers' experiences in rural and urban areas and the sociocultural spheres that these two areas represent. How do family caregivers approach their caregiving situation? A hermeneutical approach was chosen to uncover the underlying meanings of experiences. Open-ended in-depth interviews were conducted. The ontological and epistemological roots are based on hermeneutic philosophy, where a human being's existence is viewed as socially constructed. The study followed a purposeful sampling. Semi-structured in-depth interviews were conducted with 12 rural and 11 urban family caregivers to persons with dementia. These were then analyzed in accordance with the hermeneutical process. The findings provide insight into the variations of family caregiver approaches to caregiving in rural and urban areas of Sweden. There seemed to be a prevalence of a more accepting and maintaining approach in the rural areas as compared to the urban areas, where caregiving was more often viewed as an obligation and something that limited one's space. Differences in the construction of family identity seemed to influence the participants approach to family caregiving. Therefore, community-based caregiving for the elderly needs to become aware of how living within a family differs and how this affects their views on being a caregiver. Thus, support systems must be individually adjusted to each family's lifestyles so that this is more in tune with their everyday lives.

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A systematic review on the factors associated with positive experiences in carers of someone with cancer

The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty‐two articles were included in this review. Analysis identified four overarching attributes: “gender,” “personal resources,” “finding meaning” and “social context.” Despite the challenges associated with caring, this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.

Systematic review registration number: CRD42014014129.

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‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life

Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care. Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. Design: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience. Setting/participants: A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand. Results: Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. Conclusion: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers. 

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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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Implementation of the REACH model of dementia caregiver support in American Indian and Alaska Native communities

The Resources for Enhancing Alzheimer's Caregivers Health in the VA (REACH VA) dementia caregiving intervention has been implemented in the VA, in community agencies, and internationally. As identified in the 2013 and 2015 National Plan to Address Alzheimer's Disease, REACH is being made available to American Indian and Alaska Native communities. Implementation activities are carried out by local Public Health Nursing programs operated by Indian Health Service and Tribal Health programs, and Administration for Community Living/Administration on Aging funded Tribal Aging program staff already working in each community. The implementation is described using the Fixsen and Blasé implementation process model. Cultural, community, health system, and tribe-specific adaptations occur during the six implementation stages of exploration and adoption, program installation, initial implementation, full operation, innovation, and sustainability. Adaptations are made by local staff delivering the program. Implementation challenges in serving AI/AN dementia caregivers include the need to adapt the program to fit the unique communities and the cultural perceptions of dementia and caregiving. Lessons learned highlight the importance of using a clinically successful intervention, the need for support and buy-in from leadership and staff, the fit of the intervention into ongoing routines and practices, the critical role of modifications based on caregiver, staff, and organization needs and feedback, the need for a simple and easily learned intervention, and the critical importance of community receptivity to the services offered.

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Caring for dependent parents: Altruism, exchange or family norm?

The purpose of this paper is to test alternative models of long-term caring motives. We consider three main motives: pure altruism, exchange and family norm. Our database is the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) which allows linking almost perfectly and with complete information children and their parents’ characteristics. Comparing the empirical results to the theoretical models developed, it appears that, depending on the regions analyzed, long-term caring is driven by moderate altruism or by family norm, while Alessie et al. (De Economist 162(2):193–213, 2014), also using SHARE data, stress the importance of exchange motive in intergenerational transfers.

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Gender differences in the long-term care of older parents: evidence from India

This paper examines gender differences in the long-term care of older parents in India by studying the expected provision of care by married sons and daughters. Gender differences in long-term care are important, as the sociocultural environment of India shapes the role of married children. While married sons are expected to provide long-term care for their biological parents, married daughters have limited scope to do so, a tendency that was revealed through our data from Osaka University’s ‘Preference Parameters in India, 2011.’ Other family members are also expected to play a significant role in parental care, while neither gender expects their parents to rely on professional long-term care. This paper contributes to the scarce empirical evidence on long-term care for older parents by married children, as opposed to previous research that has focused on the division of caregiving activities between sons and daughters in general.

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The cost of dementia in an unequal country: The case of Chile

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver’s burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463. Direct medical costs account for 20 per cent, direct social costs for 5 per cent and indirect costs for 75 per cent of the total cost. The mean monthly cost is found to be inversely related to SES, a pattern largely driven by indirect costs. The monthly cost for high SES is US$ 1,083 and US$ 1,588 for low SES. A multivariate regression analysis suggests that severity of dementia and caregiver’s burden account for between 49 and 70 per cent of the difference in the indirect cost across SES. However, between one-third and one-half of the variation across SES is not due to gradient in severity of dementia. Direct medical costs increase in higher SES, reflecting differences in purchasing power, while indirect costs are inversely related to SES and more than compensate differences in medical costs. Moreover, in lower SES groups, female caregivers, typically family members who are inactive in the labor market, mostly provide informal care. The average annual cost of dementia in Chile (US$ 17,559) is lower in comparison to high-income countries (US$ 39,595) and the proportion of cost related to informal cost is higher (74 per cent compared to 40 per cent). SES is a key determinant in the cost of dementia. In the absence of universal access to treatment, part of the social cost of dementia potentially preserves or increases income and gender inequality.

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Informal care for people with chronic psychotic symptoms: four case studies in a San community in South Africa

Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.

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The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

Objective: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori. Method: Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts. Results: We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner. Significance of results: These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

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An intersectional analysis of male caregiving in South African palliative care

Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.

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

Background: Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure) on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives.

Methods: Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200) was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression.

Results: Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. 

Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure) and an internal obligation (beliefs of obligation); (b) our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c) our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

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Social Contract on Elderly Caregiving in Contemporary Chile

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

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Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

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Caregiving for the Elderly Person: Discourses Embedded in the Brazilian Practical Guide for the Caregiver

It is estimated that in 2025, Brazil will have the sixth largest elderly population in the world. Beyond the economic consequences of this projection, this changing demographic portends significant changes in the social realm. The aim of this study was to review and consider a range of government documents, developed during the past thirty years and directed toward elderly Brazilian citizens, to explore the ways that caregivers of older persons are positioned in daily care practices through the discourses such documents deploy. The analysis draws on Foucault’s genealogical approach, and begins with a review of the historicity of policies, regulations, and legislation related to older people, followed by an analysis of the discourses embedded in the Practical Guide for the Caregiver, a document created by the Brazilian Ministry of Health to provide guidance to informal caregivers in the actual provision of care to elders. The analysis shows that throughout the Guide, caregivers are portrayed as multifaceted subjects yet at the same time, three primary positionings for the caregiver and her or his work are emphasized: the almost-angel, the almost-healthcare professional, and the almost-household professional.

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Gender and socio‐economic inequalities in health and living conditions among co‐resident informal caregivers: a nationwide survey in Spain

AIMS: To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers.

BACKGROUND: The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care.

DESIGN: Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain.

METHODS: Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men.

RESULTS: The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems.

CONCLUSIONS: The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers.

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Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.

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Caregiver-proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study

Objectives: This study was designed to determine the caregiver-proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM).; Methods: This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann-Whitney U test, Kruskal-Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05.; Results: The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors' and primary informal caregivers' rated CR scores were all adequate and acceptable (ICC = 0.602-0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers' educational attainment (k = 13.15; p < 0.01).; Conclusion: The I-MSCRIM has acceptable caregiver-proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress.; Design: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.; Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.; Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.

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Socioeconomic and Demographic Disparities in Caregiving Intensity and Quality of Life in Informal Caregivers: A First Look at the National Study of Caregiving

Informal caregiving is an integral component of the health care system, saving the national economy more than $522 billion annually. The current study examined how the association between caregiving intensity and caregiver quality of life varies by sociodemographic factors through a secondary analysis of the National Study of Caregiving. Generalized linear models assessed the associations among four aspects of caregiving intensity, three aspects of caregiver quality of life, and key sociodemographic factors. Compared to White individuals, Black individuals had higher levels of overall caregiving intensity (β = 0.293, 95% confidence interval [CI] [0.140, 0.447]), number of instrumental activities of daily living performed (β = 0.060, 95% CI [0.030, 0.090]), and hours spent caregiving per month (β = 0.025, 95% CI [0.002, 0.049]), yet experienced significantly fewer negative impacts on quality of life. Understanding how informal caregiving affects caregiver quality of life is critical to inform public health policies and programs designed to support caregivers and protect this critical component of the U.S. health care system. 

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Characterizing Caregiving Intensity Among Mexican-origin Women Caregivers

Purpose of the Study: Objective (physical) caregiving burden has not often been associated with subjective (emotional) burden among Mexican-origin women caregivers. Yet, many studies show that Latina caregivers suffer from negative psychological outcomes related to caregiving at a higher rate than non-Latino Whites. This study considered whether self-rated intensity of ADL/IADL support explained the relationship between number of care recipient illnesses and caregiver emotional drain among Mexican American women caregivers.; Design and Methods: Participants included Mexican-origin women caregivers (n = 132) in East Los Angeles, CA who completed a survey that asked culturally appropriate questions about their experiences caring for elderly relatives.; Results: Logistic regression models indicated that ADL/IADL supports ranked as difficult were also chosen as causing emotional drain. Mediation models revealed a significant indirect effect of number of care recipient illnesses on caregiver emotional drain for English-speaking caregivers but not for Spanish-speaking caregivers. These results indicate that Mexican-origin women caregivers do experience subjective burden associated with specific objective ADL/IADL supports and suggest that culturally relevant survey design can assist in better understanding the emotional drain among this population.; Implications: Cultural values should be considered when discussing aspects of care provision with Mexican-origin women caregivers in order to elicit an accurate description of their informal caregiving experiences that may contribute to caregiver burden.

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How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms

Aims: Motivated by ageing populations, healthcare policies increasingly emphasize the role of informal care. This study examines how prevalence rates of informal caregivers and intensive caregivers (i.e. those who provide informal care for at least 11 hours a week) vary between European countries, and to what extent informal caregiving and intensive caregiving relate to countries’ formal long-term care provisions and family care norms. Methods: Multilevel logistic regression analyses on data from the European Social Survey Round 7 (n = 32,894 respondents in n = 19 countries) were used to test (a) contradicting hypotheses regarding the role of formal long-term care provisions based on crowding-out, crowding-in and specialization arguments and (b) the hypothesis that strong family care norms are positively related to (intensive) informal caregiving. Results: Prevalence rates of informal caregiving varied between European countries, from 20% to 44%. Intensive caregiving ranged from 4% to 11%. Opposite patterns regarding the role of formal long-term care provisions were revealed: generous long-term care provisions in a country were related to a higher likelihood of providing informal care, but a lower likelihood of providing intensive care. Moreover, intensive caregiving was more likely when family care norms in a country were strong. Conclusions: This study provided support for the specialization argument by showing that generous formal long-term care provisions crowded-out intensive caregiving, but also encouraged more people to provide (some) informal care. Because especially intensive caregiving is burdensome, low levels of formal long-term care provisions might bring risks to caregivers’ well-being and healthcare systems’ sustainability. 

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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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Perspectives and Insights from Vietnamese American Mental Health Professionals on How to Culturally Tailor a Vietnamese Dementia Caregiving Program

Objective: Little is known about dementia and caregiving among the rapidly growing Vietnamese American population. This qualitative study elicited insights on culturally tailoring an intervention to address mental health needs in Vietnamese American dementia caregivers from Vietnamese American mental health professionals. Methods: Eight Vietnamese American mental health professionals were interviewed to explore: experiences working with and needs of the community; Vietnamese attitudes toward treatment; and acculturation in Vietnamese caregiving. Participants provided recommendations on tailoring a program for Vietnamese dementia caregivers. Content analysis of their responses was conducted. Results: Themes included: a) caregivers’ unique needs and experiences; b) different waves of immigration and acculturation levels affect views on mental health, treatment, and caregiving; c); traditions and beliefs on caregiving; d) mental health, help-seeking and health services; e) how to culturally tailor a program for Vietnamese dementia caregivers; and f) cultural acceptance of the program. Conclusions: An intervention to reduce stress and depression among Vietnamese American dementia caregivers should recognize the special risks of the experiences of war and immigration of the caregivers as well as the pressure of the expectations of the Vietnamese culture on family care. For the program to be acceptable and effective, it needs to consider all aspects of caregivers’ health, and incorporate Vietnamese cultural values/beliefs. Clinical Implications: A successful Vietnamese dementia caregiver intervention should include traditional Vietnamese values/beliefs, holistic experiences, spirituality, and background/immigration experiences. Evidence-based programs may be used with this population if they are culturally tailored. 

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

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

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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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Effects of filial piety in the experiences of informal caregivers

Informal caregivers are the family members and friends who provide help and support daily to individuals who are temporarily or permanently unable to function independently. They have to engage in a range of activities. They have a long term commitment to the persons they are helping and are usually not paid for their efforts. In certain Asian cultures, there is a peculiar concept that seems to be playing a great role in aiding people to adhere to their responsibility and derive satisfaction from their role of caregiving. This is known as filial piety. It consists of multiple behavioural norms associated with care and support for parents, maintaining family continuity, harmonising family relations, serving community elders and worshipping the ancestors. This belief of filial obligation is often translated into practice to mean that children should ensure that their parents are well cared for in old age. This includes attending to them when they are ill, paying attention to parents' wishes, obeying their preferences, behaving in a way that makes them happy and also bring them honour and respect in the community. Against this background the purpose of the present study is to review the literature on the role of filial piety in informal caregiving. Literature suggests that the role of filial piety in caregiving is both positive and negative, as some caregivers derive satisfaction and high self esteem from caregiving because of high filial piety while some caregivers experience burden if this obligation is fulfilledjust for the sake of face saving. Thus the present review paper aims to throw light on how filial piety effects not only the caregiving arrangements but also the caregiving experiences of informal caregivers in terms of various psychological variables. 

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Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training

Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia.; Methods: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant.; Results: The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031).; Conclusions: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.;

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‘It’s Like Chicken Talking to Ducks’ and Other Challenges to Families of Chinese Immigrant Older Adults in Long-Term Residential Care

Immigrant older adults are increasingly moving into long term residential care (LTRC) homes; however, most were designed and continue to be run in accordance with Anglocentric norms and values. Participation and interest in Family Councils—through which they might collectively voice concerns—was low within our purposive sample of nine Chinese-origin residents living in LTRC homes and 11 family carers. Our study, conducted in two LTRC homes in British Columbia, Canada between January and March 2016, further explored participants’ perceptions of quality of care by staff and quality of life of residents. Our findings negate participants’ rationale that they do not attend because they have no issues to raise. Solutions must recognize that carers’ time is precious and care-work is gendered; language incongruity and failure to address it marginalizes residents and their family members. A culturally informed reticence to speak out is reinforced when attempts to do so are silenced. 

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The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life. 

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Changing moralities: Rethinking elderly care in Spain

Demographic and social changes in Europe and OECD countries have increased the number of dependents in recent decades, challenging the organisation of health systems and raising calls for re‐definition of long‐term care services. In Spain the crisis of care has challenged a care regime based strongly on the family. Recent social policies have attempted to address this challenge. This article analyses the ideal of family care expressed by women who have traditionally played the role of caregivers. Reflecting a disruption of previously held moral attitudes throughout society, elderly women manifest new expectations in relation to their own care, redefining the scope of filial obligation and linking it to a renewed notion of independency and autonomy. However, in the current context of financial crisis, family care appears not as a choice, but an undesirable consequence of the lack of public policies. The study applies a theoretical approach based on the anthropology of moralities. 

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Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia

Background: Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness.; Aims: This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL).; Methods: The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers.; Results: High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL.; Conclusions: Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.;

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Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.; Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.; Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.; Data Sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.; Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'.; Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

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The time has come to eliminate the gaps in the under-recognized burden of elder mistreatment: A community-based, cross-sectional study from rural eastern Nepal

Background: Elder mistreatment is a well-recognized public health issue with complex underlying factors. The current study hypothesized that there is no effect of any of the following factors on any type of elder mistreatment: ethnicity, age group, education status, gender, living arrangement, concentration problems, medication for any disease, income level of caregiver, use of alcohol and tobacco products, and dependence on family or caregivers for daily activities. Materials and methods: We conducted a cross-sectional study of 339 elders adults aged 60 or above residing in a rural part of eastern Nepal between August and November 2016. Multi-stage cluster sampling was adopted to select the study subjects. Information was collected using semi-structured questionnaires administered to elderly people by a designated interviewer. Factors associated with elder mistreatment were analyzed using logistic regression. Results: Our findings revealed that 61.7% of 60+-year-olds experienced some form of mistreatment (physical 2.4%, psychological 22.4%, caregiver neglect 57.5%, financial 12.1% and stranger-inflicted 8.3%). Elder mistreatment was associated with the following characteristics of elders: dependent on family for daily living activities, illiterate, experiencing concentration problems, residing in a living arrangement with their son(s)/daughter(s)-in-law, taking regular medications, belonging to the Dalit community according to the Hindu traditional caste system, and residing with a caregiver having a monthly family income of less than NRs. 20,000 (193USD). Conclusions: Our data show that elder mistreatment is prevalent in a rural community of Nepal. Addressing the lower socio-economic or socio-cultural classes of caregivers and elders via community-focused development programs might have significant implications for improving the well-being of elders. 

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The role of pain behaviour and family caregiver responses in the link between pain catastrophising and pain intensity: A moderated mediation model

Objectives: This study investigated the mediating role of pain behaviours in the association between pain catastrophising and pain intensity and explored the moderating role of family caregivers' responses to pain in the link between pain behaviours and pain intensity.; Methods: The sample consisted of 154 chronic pain patients and their family caregivers. Patients completed questionnaires regarding pain intensity, pain catastrophising, pain behaviours and their caregivers' responses to their pain. Family caregivers reported their responses to the patients' pain.; Results: Pain catastrophising was associated with pain intensity (r = 0.37) and pain behaviours partly mediated this association. The positive association between pain behaviours and pain intensity was significant only if patients reported that their family caregivers showed high levels of solicitous (effect = .49) and distracting responses (effect = .58), and if caregivers reported to show high levels of solicitous responses (effect = .51). No support was found for negative responses as a moderator neither based on patients' perception of negative responses nor based on caregivers' perception of negative responses.; Conclusions: The findings are in line with the idea that family caregivers' solicitous and distracting responses convey to patients that their condition is serious, which may reinforce patients' pain and pain behaviours, especially in those who catastrophise.

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A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru

Purpose of the study: Populations in Latin America, Asia and sub-Saharan Africa are rapidly ageing. The extent to which traditional systems of family support and security can manage the care of increased numbers of older people with chronic health problems is unclear. Our aim was to explore the social and economic effects of caring for an older dependent person, including insight into pathways to economic vulnerability. Design & methods: We carried out a series of household case studies across urban and rural sites in Peru, Mexico, China and Nigeria (n = 24), as part of a cross-sectional study, nested within the 10/66 Dementia Research Group cohort. Case studies consisted of in-depth narrative style interviews (n = 60) with multiple family members, including the older dependent person. Results: Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a ‘journey without maps’. Women were de facto caregivers but the traditional role of female relative as caregiver was beginning to be contested. Household composition was flexible and responsive to changing needs of multiple generations but family finances were stretched. Implications: Governments are lagging behind sociodemographic and social change. There is an urgent need for policy frameworks to support and supplement inputs from families. These should include community-based and residential care services, disability benefits and carers allowances. Further enhancement of health insurance schemes and scale-up of social pensions are an important component of bolstering the security of dependent older people and supporting their continued social and economic participation. 

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Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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Family caregiver recruitment via social media: challenges, opportunities and lessons

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media.; Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers.; Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community.; Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

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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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NSW Carers Strategy 2014-19: What's new?

FACS development of the NSW Carers Strategy (the Strategy), with assistance from the Ministry for Health and Carers NSW.

Information about the implementation of the Strategy will be published on this page regularly, so please come back to find out what FACS and our partners have been doing for carers. Links to our latest news

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The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study

Aims and Objectives: To explore and describe the caregiving experiences of Chinese stroke caregivers.; Background: Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture.;Design: A qualitative descriptive design was used.; Methods: In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed.; Findings: Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health.; Conclusion: Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways.; Relevance To Clinical Practice: Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds.; © 2017 John Wiley & Sons Ltd.

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Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia

Background: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL.; Methods: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms.; Results: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13).; Conclusion: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.;

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Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London.

Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group).

Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6).

Analysis Data subject to content analysis.

Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying.

Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

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Older people from white-British and Asian-Indian backgrounds and their expectations for support from their children

The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required. Most existing British research on the family support of older people has concentrated on those from the white‐British majority with little cross‐group comparisons. This article reports on in‐depth qualitative research with 17 and 21 older people from white‐British and Asian‐Indian backgrounds respectively. It demonstrates how gender, ethnicity, migration history and a range of other factors interweave in complex manners to affect individuals' expectations for support from their adult children. The findings reveal commonalities and differences within and between groups and demonstrate that the association between expectations of support and resultant sense of well‐being is complicated and is often conditional. Stereotypes within and across groups need to be examined given the observation that while familial norms may be played out differently in different cultural contexts, individuals make sense of and rationalise their expectations for support to take into account the dynamics of changing structures and attitudes.

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Exploring differences in depression, role captivity, and self-acceptance in Hispanic and non-Hispanic adult children caregivers

A variation of the stress, appraisal, and coping model was used to examine the negative and positive consequences of providing care to a person diagnosed with Alzheimer's disease (AD). Data were collected from a sample of 113 Hispanic and non-Hispanic adult children who were providing care to impaired parents. Results showed that the Hispanic caregivers were more likely to be experiencing less depression, lower levels of role captivity, and higher amounts of self-acceptance than the non-Hispanic (White) caregivers. While significant differences between Hispanic and non-Hispanic caregivers were present, results from multiple regression analysis demonstrated that feelings of role captivity were stronger predictors of both negative and positive caregiving outcomes than was the caregivers' ethnic status. The findings of this study indicate a continued need for future research with more diverse groups of AD caregivers in order to develop more culturally appropriate interventions.

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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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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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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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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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'Habitus and Bureaucratic Routines', cultural and structural factors in the experience of informal care - A qualitative study of Bangladeshi women living in London

This article draws on Bourdieu's notion of habitus to address the interaction between cultural and structural factors in influencing the experience of informal care among Bangladeshi women in London. The authors present a secondary analysis of a qualitative study focusing on the accounts of informal care. The data were drawn from a two-year study with Bangladeshi women aged 35—55. Thirty-two out of the 100 women in the original study were providing care, mostly in isolated circumstances and with little or no formal support. The authors analysed the accounts of these 32 women and in the context of high levels of suffering and distress, three key themes emerged: amplification of suffering, dispositions of duty and religion and entitlements and fields of struggle. The gaps in access to formal support faced by these women suggest that strong cultural and structural forces determined their experience of informal care and the meanings they attached to their role as informal carers. Drawing on the work of Bourdieu and others, the authors suggest that where there is a lack of agency and resistance to support services, the explanation needs to move beyond poor information and language issues to a more rounded understanding of relationship between habitus and conflicts over local fields of welfare.

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Standardization of the Maristán Scale of Informal Care in people with schizophrenia and other psychoses

OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.

METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.

RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).

CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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Nothing on the Move or Just Going Private? Understanding the Freeze on Child- and Eldercare Policies and the Development of Care Markets in Italy

Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.

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Working with carers in the Bangladeshi community

Focuses on the study conducted by the University of Wales which identifies the social care needs of informal carers for dependent adult relatives from a Bangladeshi community in Wales. Health risk assessment of the community; Assessment of the health care services in the community; Necessity for community nurses to be culturally proficient through the provision of accurate education.

Quality of life measures for carers for people with dementia: measurement issues, gaps in research and promising paths

Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.

Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.

Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.

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Self-directed support

This audit report examines councils’ progress in implementing the self-directed support strategy in Scotland and their readiness for the Social Care (Self-directed Support) (Scotland) Act 2013. It focuses on councils because they have the lead role, working in partnership with users, carers, third and private sector providers, NHS boards and other organisations. The audit work was carried out between December 2013 and February 2014. It involved a review of a range of published information, case studies in four councils, and interviews with staff and representatives from range of public, private and third sector organisations. The report highlights that councils still have a substantial amount of work to do to fully implement self-directed support. Some have made slower progress than others and they will have to implement the cultural and practical changes more quickly over the next few years. Councils need effective leadership from senior managers and councillors and continued support from the Scottish Government.

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Occupational changes in caregivers for spouses with stroke and aphasia

Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation.

Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview.

Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity.

Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.

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

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

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

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

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

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

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

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

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Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture.

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Working family carers in Portugal: between the duty and the burden of caring for old vulnerable people

This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.

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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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Linkages between migration and the care of frail older people: observations from Greece, Ghana and the Netherlands

There are at least four ways in which old age and migration cross each other’s paths. First of all, there are people who migrated for economic reasons, usually at a relatively young age, and who have grown old in a foreign country. Secondly, there are older people who migrate when (or because) they are old: in Europe, they are mostly from the affluent northern countries and travel southward. Thirdly, there is increasing employment of, and demand for, immigrant workers in old-age institutions in the northern countries. Finally, there is the out-migration of young people, mainly from rural areas, that results in older people being left behind without children to look after them. In all these cases, migration has a profound effect on the wellbeing and care of older people. The authors of this article explore a fifth linkage between migration and old age, by focusing on the (mainly illegal) immigrants who take on roles as private carers and, in effect, replace the children who have emigrated. Two cases, from Greece and Ghana, are presented and viewed in the two countries’ political, cultural and economic contexts, and are then compared to conditions in The Netherlands. In both cases, involving a ‘ stranger’ in the care of an older parent is regarded as a good and respectable solution to the problem of absent children and grandchildren: it follows rules of reciprocity and normally provides a good quality of care. Ironically, hiring full-time private care for older people is feasible in low-income countries but a rare luxury in high-income societies.

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Culture change

The number of people from minority ethnic groups who are living with dementia is rising steeply, yet awareness levels and diagnosis rates are worryingly low. An Alzheimer's Society project , The Information Programme for South Asian Families (IPSAF), which provides culturally tailored information information sessions aims to help solve this problem. The service comprises a series of face-to-face sessions which helps carers to build their understanding, knowledge and skills of dementia. An educational DVD is also provided for carers to take home and share with family members. The programme was developed after consultation with 120 people with dementia, carers and professionals.

The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori.

Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts.

We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner.

These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

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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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Service barriers of Chinese family caregivers in Canada

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.

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Intention and use of long-term care facilities and home support services by Chinese-Canadian family caregivers

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.

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Using the social care framework to analyse research on young carers

Bettina Cass, with Deborah Brennan, Ilan Katz, Catherine Thomson and Deborah Mitchell, and 10 Partner organisations in NSW and South Australia, are undertaking a three-year ARC Linkage Grant project on 'Young Carers: Social Policy impacts of the caring responsibilities of children and young people'. Located at the Social Policy Research Centre (UNSW), the investigators are exploring the interplay between the socio-economic and socio-cultural circumstances in which young people take up caring responsibilities; the policy settings that affect the level and types of care which they provide; and the impacts of care-giving on their participation in education, employment and friendship/social networks. The project will map the gaps in service provision which young carers, their care recipients and service providers identify.

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

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

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

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

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

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

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

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

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

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Working together - learning through sharing

Purpose – This paper aims to examine the barriers and enablers to working together in social care, focusing on the experiences of carers and practitioners.

Design/methodology/approach – The project employed a change project method which brings research and practice together to identify a problem, seek ways to resolve it, and develop resources to implement the learning in practice.

Findings – The main findings substantiate much of the existing evidence in this area: the way people are treated by practitioners and services is as important as the outcomes they seek; there is a need to improve understanding and recognition of carer expertise; and there is a tension, for practitioners, between working within resource‐bound systems and implementing a needs‐led and person‐centred cultural service. It demonstrates that when shared learning is focused on action, i.e. learning through doing, relationship‐building becomes an intrinsic part of the process.

Research limitations/implications – The project involved a limited number of participants, and this article shares interim findings only.

Originality/value – The project has used an action‐research approach.

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Focus on home: what time-use data can tell about caregiving to adults

This study analyses data from Statistics Canada's 1998 social survey of 10,749 people to learn more about the nature and situation of Canadian adults providing care at home to other adults. Data included time-use and respondents' sociodemographic, cultural, work, and leisure characteristics, as well as outcome factors. The analyses found 212 respondents (about 2 percent) providing personal, medical, or other care to other household adults on the day studied. Carers were compared to those not found to provide these services. The article explores time-use trade-offs, feelings of stress, and the ramifications of gender, age, and paid work in this newly reemerging use of household space.

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The importance of listening to family carers

This article describes the themes emerging from the author’s anthology of personal accounts of caring for a family member or friend with dementia, ‘Telling tales about dementia’. It explains the importance of family carers and suggests that the knowledge of family carers should be actively sought by professionals delivering services, discussing the barriers of patient confidentiality, examples of important information from family carers being disregarded, and the role of family carers in monitoring care and challenging professionals when necessary. The author asserts that in practice it is rare for family carers to be respected as expert care partners but that when this happens it provides considerable benefits, and concludes that a cultural change is needed in the medical and social care professions to ensure that the contribution of family carers is welcomed and respected.

Ispeek at home

The collection of 1300 picture symbols in ISPEEK at Home provides an easy-to-use and enjoyable tool for overcoming communication difficulties in children with autistic spectrum disorders. The CD-ROM contains symbols for a wide range of situations typically encountered in the home and beyond, from feelings and facial expressions - common problem areas for people with autism - to health and hygiene and holidays. It also provides useful word templates to inspire parents and carers in putting together daily schedules, as well as PDF samples to assist them in setting up visual aids for children with autism, helping them to interact better with their home environment. These culturally various symbols will be a welcome communication aid for parents, carers and other professionals working with people on the autism spectrum at home.

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Cultural adaptation of mental health measures: improving the quality of clinical practice and research

The need for accurate information about the mental health problems of multicultural communities requires valid measures of mental health for use in a number of languages and cultural contexts. Measures of psychopathological symptoms leading to a diagnosis have been especially criticised for their universal application, without attention to their limitations across cultures. Yet, measures are crucial to assess recovery and the performance of services, and to take account of carer and user views. The authors summarise the main challenges in the cultural adaptation of such measures in our work with adults and adolescents of South Asian, African and Caribbean origin.

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Socio-economic status differences in older people's use of informal and formal help: a comparison of four European countries

This study investigates the variations by older people's socio-economic status (SES) (i.e. educational level and social class) in the use of informal and formal help from outside the household in Great Britain, Italy, Belgium and The Netherlands. In all these countries, it was older people in low SES groups who mostly used such help. Multinomial logistic regression analyses showed that, in each country and for both types of help, there were SES gradients in the utilisation of both formal and informal care, and that differences in age, health and marital status largely accounted for the former but not the latter. Cross-national differences in the use of both informal and formal help remained when variations in sex, age, SES, health, marital status, home ownership and the use of privately-paid help were taken into account. Significant interaction effects were found, which indicated that older people in low SES groups in Great Britain and The Netherlands had higher odds of using informal help from outside the household than their counterparts in Italy, and similarly that those in The Netherlands were more likely to use formal help than their Italian peers. The results are discussed in relation to the cultural differences and variations in the availability of formal services among the countries.

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Experiences and health care needs of older people with End Stage Renal Disease managed without dialysis in Thailand during the last year of life

BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.

OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.

METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.

RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.

CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.

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Supporting South Asian carers and those they care for : the role of the primary health care team

Background: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. Aim: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. Design of study: Qualitative study. Setting: Four South Asian communities in Leicestershire and West Yorkshire. Method: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. Results: Failure to recognise carers’ needs, gaps in service provision, and communication and language issues compromised carers’ ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. Conclusion: South Asian carers’ experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers’ needs are taken seriously and that appropriate services reach them. Keywords: ethnic groups; cultural diversity; carers; primary health care team.

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End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.

Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.

Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.

Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

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Unpaid carers' access to and use of primary care services

General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.

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Attitudes and support needs of Black Caribbean, South Asian and White British carers of people with dementia in the UK

Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the carer experience in these communities is profoundly limited.

To explore the caregiving attitudes, experiences and needs of family carers of people with dementia from the three largest ethnic groups in the UK.

A qualitative study, using a grounded theory approach. In-depth individual interviews were conducted with 32 carers of people with dementia (10 Black Caribbean, 10 south Asian, 12 White British).

Carers were identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfilment, strain, carers' fears and attitudes towards formal services. The majority of the south Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.

The findings suggest that specific cultural attitudes towards the caregiving role have important implications for how carers can best be supported.

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Informal care in farming families in Northern Ireland: some considerations for social work

This paper is the result of a study of the dynamics of care-giving within farming families in Northern Ireland. It is argued that whilst much is known about informal care, existing knowledge is largely urban based and quantitative, and therefore limited. Following in-depth interviews with 'farm wives' it is concluded that for these women care-giving patterns are dependent on a particular set of cultural expectations and norms. Within farming families there is much resistance to becoming involved with formal social services. Outside help with the care of one's elderly relatives is often seen as an admission of failure, as there is a pride in being able to look after one's family members. Users of social services, which still evoke associations with the Poor Law, are highly stigmatized. It is claimed that for these women the concept of 'carer' has no bearing on their lives and is not something to which they can relate. The paper challenges the depiction of caring as a one-sided difficult relationship where the person being cared for is a passive recipient. It is suggested that caring is not necessarily oppressive but may be rewarding and positive. It concludes that if social workers are to support and facilitate informal care they must be aware of and fully understand the diversity of care provision and the different contexts in which care is undertaken. If intervention is to take place then it must be sensitive to the deeply embedded ideas and perceptions that exist within farming families.

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Spatial Perspectives on Voluntarism in Learning Disability Services in Ireland

Voluntarism has moved to the centre of most western neo-liberal governments' focus in terms of welfare delivery. At the same time, very little of the social policy literature has identified specific historical, cultural and political contexts of place in shaping the particular form of voluntarism and the scale at which it takes place in a country. In order to address policy-related issues of the voluntary sector, a geographical perspective focusing on these local contexts can be very useful in unpacking how the sector can exist across regional and local scales. This article explores the rise of voluntarism in adult learning disability services in Ireland. Ireland experienced the ‘community turn’ much earlier than most Western states, in that the state advocated a ‘hands-off’ approach in learning disability services from the outset. It uses data from 40 interviews with local health agencies, voluntary organisations and informal carers. It critically examines the complex geographical factors that have contributed to the particular form of voluntarism that has evolved, thus demonstrating that understanding levels of voluntary activity requires attention to local circumstances.

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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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Do they look after their own? Informal support for South Asian carers

Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers’ accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.

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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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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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How do baby boomers' mobility patterns change with retirement?

Baby boomers will comprise a considerable share of tomorrow's older population. Previous research has indicated higher travel activity and car use amongst baby boomers than amongst older cohorts. However, little evidence exists on the effects of boomers' ageing on the transportation system. To analyse how retirement affects baby boomers' travel and the related future travel demand, we compared three groups, distinguished by employment status as ‘still working’, ‘early retirees’ and ‘recent retirees’, in a longitudinal setting. Data for 864 individuals were collected via standardised telephone interviews in 2009 and 2012. We find a clear tendency towards reducing the car use and mileage over time and as a consequence of retirement. Nevertheless, car use for leisure purposes increased after retirement. Whilst retirement had a bigger impact on men's than on women's car use, those women who continued working had a high car reliance that did not decline over time. This study suggests that retirement is a transition point associated with decreasing car use. Hence, the ageing of the population is likely to have a decreasing effect on transportation demand. However, informal care-giving, prolonged careers and atypical working life, boomer women's changing professional roles, and the emergence of leisure and consumption as major cultural and social frameworks of the third age are likely to make this transition different than observed in previous cohorts.

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Health and Social Care Needs of Somali Refugees With Visual Impairment (VIP) Living in the United Kingdom: A Focused Ethnography With Somali People With VIP, Their Caregivers, Service Providers, and Members of the Horn of Africa Blind Society

Purpose: To explore the health and social care needs of Somali refugees with visual impairment (VIP). Design: We conducted a three-phased focused ethnography in collaboration with the Horn of Africa Blind Society (HABS) through all stages from research design to findings dissemination. Method: Engaging in participatory research, HABS members (n = 26), service providers (n = 10), and two Somali community groups (n = 8 and n = 7) whose members were sighted (Phase 1) took part in four focus group interviews. Phases 2 and 3 consisted of interviews with Somali refugees with VIP (n = 32) and their informal carers (n = 5). We used framework data analysis methodology. Findings: Four major themes emerged: (1) sociocultural perceptions of blindness and visual impairment, (2) access to services, (3) isolation and insecurity, and (4) mobility. Conclusion: Somali people with VIP experience profound unmet social and health care needs related largely to social support, awareness of mobility options, and the stigmatization of visual impairment. Appropriate community outreach may improve access to services and quality of life for Somali people with VIP. Tailored information is needed to increase awareness of mobility and security services. Significant considerations exist when planning discharge from acute care settings to ensure continuity of support.

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Valuing People: family matters ten years on

It is ten years since Valuing People promised a ‘new deal’ for family carers. Valuing People was explicitly concerned to ensure a cultural shift in the way services worked with and conceptualised the role of family carers. It included specific objectives for involving families in local partnership boards, providing better support for them in their caring role and investing in family leadership nationally, regionally and locally. This article considers why there was a need for a more family-focused approach to support. It then discusses the advances over the last decade towards meeting the objectives of Valuing People. It concludes that despite the positive policy developments it would be dangerous to be complacent; there is still a need to continue investing in families and people with learning disabilities to ensure that the gains of the past decade are not lost.

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Expectations of support among White British and Asian-Indian older people in Britain: the interdependence of formal and informal spheres

The discourse surrounding community care characterises informal support being superior to and preferred over formal sources of support, with this distinction buttressed by policy changes. There is a lack of understanding of the interdependence of both spheres of support. This article argues that an individual's experience and expectation of one type of support is often made in relation to his or her understanding, expectation and experience of other sources of support. There is also an urgent need to understand how these associations operate in a cross-cultural context as it is naïve to assume that normative expectations will remain constant when the relationship between family, state and other sources of support are unstable. This article reports on findings emerging from part of a Growing Older study funded by the Economic and Social Research Council of Great Britain to explore the relationship between quality of life and the social networks and support of older people from different ethnic groups. Research involved the use of a questionnaire comprising closed- and open-ended questions. In addition, in-depth qualitative interviews covering the existence and nature of social networks and support, as well as perceptions and expectations of these, were also conducted. This article reports on data relating to a sample comprising seven White British men, 10 White British women, 12 Asian-Indian men, and nine Asian-Indian women aged 55 and over derived from the Family Resources Survey. Findings reveal that the high level of expectation for family support amongst Asian-Indian respondents coexists with a high level of expectation for state support and an acknowledgement that the ideal of family support may not always materialise. Amongst White British respondents, the high level of expectation for state support exists regardless of whether the respondent has satisfactory informal social networks. This expectation is commonly expressed in terms of rights and entitlement by White British respondents but not by Asian-Indians. Associated with this, Asian-Indian respondents display a consistently lower level of awareness and usage of a range of health and social care services. Regardless of the extent of current and past usage of services, however, respondents from both groups overwhelmingly indicate an expectation for the continued provision of such services as they would like to be able to use one or more of these at some stage.

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Family systems and mental health issues: a resilience approach

In many cases the consumers of mental health information and support are the families of mental health sufferers. The aim of the project was to understand resilience in people who live with or support a family member with a diagnosed or undiagnosed mental illness. Participants were 15 carers (one male, 14 female). Semi-structured interviews were transcribed and analysed using content analysis. Eight recurring themes emerged which indicated the challenges the carers faced and provided indications of the positive and negative personal, family and social factors that impacted on their lives. These themes were ‘Getting to CLAN WA’, ‘Accessing help including CLAN WA’, ‘Impact of living with a person who has a mental illness or problematic behaviour’, ‘Family and cultural issues’, ‘Communication within the family’,‘Coping strategies and evidence of resilience’, ‘Social support’ and ‘Notion of sacrifice’. There is still considerable work to do in supporting people who live with or support a family member in these circumstances. The findings demonstrate that individuals living with adversity can do more than just survive the process.

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‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

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Cultural competency: professional action and South Asian carers

Inequality and exclusion are characteristic of the experience of UK South Asian communities. In health care, community needs are often not addressed by health and social welfare services. An increase in cultural competency is now part of identified policy. The aim of this paper is to examine the extent to which there is evidence of cultural competency amongst professionals concerning South Asian parents caring for a person with cerebral palsy. Semi‐structured interviews were conducted with respondents from 19 service organisations. Results are presented on perceptions of service delivery and on the dynamics of service development: evidence is found that inadequate service delivery continues despite professional knowledge that it exists. Conditions necessary for the achievement of cultural competence are discussed. We suggest that service development to meet the needs of South Asian carers must form part of an overall strategy geared to change at different levels within and outside service organisations.

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Five sources of hope for the deeply forgetful: dementia in the twenty-first century

At this point of time, two decades after intense biological research into dementia began, we need to reassess our perspective on hope, and understand the need for some redirection toward the larger questions of care when no cure is in sight. It does seem appropriate to focus more of our hope and possibly resources on care itself, and on the creation of attitudinal shifts toward the affirmation of the deeply forgetful. There is no compound available yet that promised to slow or cure dementia. We can have hope in dietary modifications that may delay onset; compassionate carers who manifest our deepest sense of a shared humanity despite cognitive decline; the increasing evidence for enduring selves beneath the chaos of neurological devastation; and the possibilities of a spiritual–cultural evolution toward acceptance, affirmation, and connection with the deeply forgetful. This paper will discuss and critically assess these sources of hope in the world of the deeply forgetful.

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Youth South Asians with learning disabilities: still socially excluded?

This paper report on a study undertaken in Glasgow of young South Asian people with learning disabilities and their carers, and explores the extent to which they are socially excluded. Although there is an increasing political emphasis on the inclusion of people with learning disabilities, the families concerned continue to experience isolation, both socially and in terms of service provision. Access to service is often problematic, because of linguistic and cultural barriers and families appear to be reluctant to use day centres. Young people with learning disabilities themselves feel stigmatised, while carers are in need of support, and also apprehensive as to the future care of their children. Although government is promoting a range of relevant initiatives, young South Asians with learning disabilities continue to be an excluded group.

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Families as partners in care: perspectives from AMEND

This article is an illustration of Indian families as caregivers who are direct sufferers due to family members affected by mental illness such as schizophrenia, and other psychiatric disorders. The practical aspects involved in the caregiving role of Indian families make them inevitable partners in care besides projecting a unique model to the other family support groups across the world. The discussion on barriers and gateways to the partnerships role of family provides an insight into the cultural dynamics of care in a country like India.

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‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services

Home-care re-ablement is a short-term, intensive service that helps people to (re-) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home-care re-ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi-structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re-ablement services in England. The interviews formed part of a larger, mixed-methods study into the immediate and longer term impacts and cost-effectiveness of home-care re-ablement services. There was clear evidence that interviewees felt that they had benefitted from re-ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re-ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re-ablement at the centre of analysis, this paper concludes that re-ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users' own priorities and concepts of independence.

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Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS

This paper reports on the three initial steps taken to develop the World Health Organization's Quality of Life instrument (WHOQOL) module for assessment of persons living with HIV/AIDS (PLWHA). First, a consultation of international experts was convened to review the suitability of the generic WHOQOL-100 for assessment of PLWHA. The experts proposed additional facets that are specific to the lives of PLWHA. Second, 42 focus groups (N=235) were conducted by six culturally diverse centres--comprising of PLWHA, informal carers and health professionals--to (1) review the adequacy of the WHOQOL for PLWHA, (2) review the additional facets proposed by the experts, and (3) write additional facets and items for a pilot instrument. Third, results of steps 1 and 2 were consolidated, and a total of 115 items, covering 25 new facets and sub-facets for assessment of QoL specific to PLWHA, were prepared for pilot testing. The new facets included symptoms of HIV, body image, sexual activities, work, social inclusion, disclosure, death and dying, and forgiveness. The implications of cross-cultural QoL assessment for PLWHA are discussed.

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Sociocultural context of nutrition in care homes

Susan Philpin and colleagues explore residents’ eating and drinking experiences to help nurses better meet the dietary needs of older people in other settings

Aim To investigate factors that influenced nutritional care provided in two different types of residential care settings.

Methods The study used qualitative methods, including focus group interviews with relevant staff members, individual interviews with managers and residents of the care homes and their informal carers, observation of food preparation and mealtimes throughout the day and analysis of appropriate documents.

Findings Data were analysed thematically, and this article describes one of the four main themes that emerged: the relationship between social context and residents’ eating and drinking experiences.

Conclusion Greater understanding of the sociocultural context of eating and drinking in residential care settings may be used to inform nursing practice in relation to meeting older people’s nutritional needs in other settings.

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Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature.

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A migrant family's experience of palliative care: a qualitative case study

The aim of this study was to explore the lived experience of palliative nursing care for different generations of a migrant family in the New Zealand context. Methodology used was an intrinsic case study. The twin threads of the family's region and their immigration experience influenced their experiences and their ways of coping in the four domains of family relationships, the support they received from their community, their ability to communicate, and their relationship with palliative care services. Palliative care was by a family approach with strong community support and empowered by culturally safe and appropriate nursing practice. This study explored the underpinnings of culturally safe palliative nursing care.

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The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the lite

Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.

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Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents' narratives

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

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Validation and psychometric assessment of a short clinical scale to measure chemotherapy-induced nausea and vomiting: The MASCC antiemesis tool

There is a lack of clinical tools to facilitate communication between clinicians and patients about chemotherapy-induced nausea and vomiting (CINV). The Multinational Association of Supportive Care in Cancer (MASCC) has developed such a tool, which is an eight-item scale for the assessment of acute and delayed nausea and vomiting, and is completed once per cycle of chemotherapy. The aim of the current study was to assess its psychometric properties, specifically reliability and validity, cultural transferability and equivalence, and congruence with proxy assessments, as well as to determine if accuracy of recall of CINV events using the MASCC Antiemesis Tool (MAT) differed over time from chemotherapy. A prospective study was carried out with adult cancer patients and their informal carers from two hospitals, one each in the United Kingdom (UK) and United States of America (U.S.). Patients completed the Rhodes Index for nausea, vomiting and retching (INVR) daily for the first five days after chemotherapy and were then asked to complete the MAT at one week, two weeks, or three weeks after chemotherapy. Carers completed an adapted MAT concurrently with patients. The sample consisted of 87 patients and 22 informal carers. The internal consistency reliability of the scale was high, with Cronbach alphas of 0.77 (patient sample) and 0.82 (carer sample). Responses were similar between the UK and U.S. samples in terms of nausea and vomiting, and both samples found the scale easy to use. Contrasted-groups validity (using age as a grouping variable) and concurrent validity (MAT compared with INVR) suggested that the scale is sensitive to detect the different dimensions of CINV and performed well against a daily assessment of nausea/vomiting (total score correlation r=0.86, P<0.001). Recall of events was high even three weeks after chemotherapy (correlations with INVR of 0.44–0.99, all P<0.01). Factor analysis clearly identified three factors, namely vomiting, acute nausea, and delayed nausea. Proxy assessments by carers were congruent with the patients' responses, especially in relation to vomiting. The MAT is a reliable, valid, clear, and easy-to-use clinical tool that could facilitate discussion between clinicians and patients about their nausea and vomiting experience, thereby potentially aiding treatment decisions. Regular assessment of nausea and vomiting after chemotherapy has the potential to significantly improve CINV management.

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Standardised measures of needs, stigma and informal care in schizophrenia using a bottom-up, cross-cultural approach

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments. Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items). Conclusions These instruments are based on service users' and carers' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.

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The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving

This paper is a report of a study conducted to identify the conditions that favour the relief of the burden of female caregivers of relatives with advanced dementia. Respite services are a response to caregivers' needs for rest. Although they are wanted and needed services, caregivers do not always have access to or use them. The need for a caregiver-centred approach to relieving the burden of care is a conclusion which respite researchers are increasingly reaching. The method was, grounded theory was chosen as the research strategy. Twenty-two female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and May 2008 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. The findings were, while having a rest is legislated as a right in civil and religious laws in family care in Spain, it should meet certain conditions that in the caregiver's eyes legitimate it. In the present study these were: (i) when there is no abandonment, (ii) when others are not harmed, (iii) when having a rest is obligatory and (iv) when having a rest is acknowledged. Conclusion. Many caregivers experience ambivalence over accepting respite. Nurses should assess caregivers’ situations and promote context-specific interventions and a relief of burden free from guilt. Exploration of the conditions that favour the relief of burden within other cultural and caregiver groups is recommended.

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Ethnicity and family support

'They look after their own' is a phrase with which we are all familiar but to what extent do ethnic and minority groups care for and support for their family members? Given the current focus on carers, Rosalind Willis in this article presents the findings of a preliminary study into ethnicity and family support, and highlights that what is generally defined as 'support' may perhaps be interpreted differently within and because of different cultures. 

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'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic-blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.

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A review and commentary of the social factors which influence stroke care: issues of inequality in qualitative literature

Stroke is the third most common cause of death in the UK and a major cause of adult disability. Stroke services have long been criticised for being deficient and there is evidence that some aspects of care provision vary across different population groups. While there is information about the patterns of service provision, questions remain about processes which might underlie these variations. The present paper sought to assess how well the processes which might lead to inequity in the delivery and uptake of stroke services are currently understood by reviewing the qualitative literature in the area. The review was carried out by systematically searching online literature databases, using keyword and bibliographical searches, within a particular time frame. In total, 55 articles were reviewed, including studies related to primary and secondary clinical care, as well as social care. Articles focused on both professionals’ and patients’ perspectives. The review reports the cultural factors and processes which have been identified as possible causes of barriers to professionals’ delivering stroke services, as well as issues which influence patients’ uptake of services. Issues identified in the literature were categorised into four broad thematic areas: conceptualisations of stroke illness and ageing, socio-economic factors, resource allocation and information provision. These themes are then revisited through the hypothesis that the concept of social and personal identity could cast new light on our understanding of how inequity in stroke care provision might arise. It is argued that the ways in which professionals and patients view themselves and each other influences their interaction, and in turn, the delivery and demand for services. Finally, the authors suggest areas where further research is warranted.

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Carers' experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services

Background: Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.

Methods: Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.

Results: Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.

Conclusions: This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.

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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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Support needs of carers of dependent adults from a Bangladeshi community

AIM: This paper reports a study identifying the health and social care needs of informal carers for dependent adult relatives from a Bangladeshi community in South Wales and their views on the acceptability and appropriateness of formal support services provided by statutory, private and voluntary sectors.

BACKGROUND: Within the next 20 years in the United Kingdom the proportion of older people from black and ethnic minority communities will dramatically increase and there will be an increased demand for carers. Asian carers, particularly Bangladeshi carers, are one of the most neglected and invisible groups. As carers are fundamental to the success of community care and their importance is increasingly recognized, caregiving within Asian communities needs further exploration.

METHODS: A qualitative study with individual focused interviews was conducted with 20 Bangladeshi carers, using a combination of purposive and snowball sampling. Maxwell's dimensions of acceptability and appropriateness of quality of care were applied to aid understanding of the findings.

FINDINGS: Families primarily cared for Bangladeshi dependent adults and viewed the experience positively, although they were providing care under challenging circumstances. There was a lack of awareness of the health and social services available to assist carers, and limited involvement of community nursing and social services. A tension was identified in accepting some types of formal support, and ethnocentrism in service provision was evident.

CONCLUSION: Institutional barriers to accessing formal support, such as the inability to meet religious and cultural needs, must be addressed if Bangladeshi carers are to be provided with services which are acceptable to them. Primary care providers, including community nurses and health visitors, need to work in partnership with the Bangladeshi community if services are to be acceptable and appropriate for meeting the needs of these hidden carers.

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The quality of life of female informal caregivers: from Scandinavia to the Mediterranean Sea

We analyse the impact of the provision of care on the health and quality of life (QoL) of adult female informal caregivers using a representative sample drawn from the survey of health, ageing and retirement in Europe (SHARE). We match each informal caregiver with a non-carer using propensity score matching and test whether matched individuals differ on self-assessed health and a functional indicator of QoL and whether this relationship differs across European regions. We find a North–South gradient both for self-assessed health and QoL, and our results show that the provision of caregiving to close relatives in Europe impacts on the caregivers’ QoL and health in a way that depends on their geographical location, the degree of formal care and specific cultural and social factors of the area. We find that informal caregiving is a complex phenomenon which may bring both psychological rewards and distress to providers of care and this complexity, along with the geographical gradient highlight the importance of ensuring that policies match the needs of individual carers in their own geographical areas and cultural contexts.

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The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

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The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed. A combination of descriptive statistics and qualitative analysis of these data revealed that social and cultural factors formed the basis of patients’ and informal carers’perceptions of cardiovascular risks and social information networks provided the main source of informationabout cardiovascular risk. For the staff, known risk factors based on epidemiological evidence (lack of exercise and diet) formed the basis of their perceptions of the patients’ cardiovascular risk factors. However, for all the participant groups (i.e. patients, informal carers and staff) the risk factors – diet and exercise were indicated as being the patients’ intended lifestyle changes., The results illustrate potential interplay between ‘social’ and ‘cultural’ context and perceptions of cardiovascular risk and incongruency between perceptions of risk and perceptions of the patients’ intended lifestyle change. These results may assist nurses in giving effective advice to patients and relatives about lifestyle change following myocardial infarction and inform future policy for cardiac rehabilitation.

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Exploring identity in the 'figured worlds' of cancer care-giving and marriage in Australia

Following changes in the structure and funding of the Australian medical system, patients have become consumers' or clients'. Family and friends have become carers' or caregivers', signifying their increased responsibilities as patients move from hospitals to communities. While policy makers embrace the term carer', some argue that the title is not widely recognised and has disempowering connotations. This paper examines spouses' reflections on the term carer' based on qualitative interviews with 32 Australians caring for a spouse with cancer from a study conducted between 2006 and 2009. Recruitment involved survey and snowball sampling. Following a grounded theory approach, data collection and analysis were performed simultaneously. Using Holland and colleagues' sociocultural identity as practice' theory and a thematic approach to analysis, findings depict identification with the spouse' and carer' label as relationally situated and dependent on meaningful interaction. Although others argue that the term ‘carer’ is a ‘failure’, these findings depict identification with the label as contextual, positional and enacted, not fixed. Furthermore, and of most significance to practitioners and policy makers, the title has value, providing carers with an opportunity to position themselves as entitled to inclusion and support, and providing health professionals with a potential indicator of a spouse's increased burden.

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Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation

Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.

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Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience. Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient. Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified. Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

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Family support for older people in an area of demographic change and policy constraints

This paper introduces the Special Issue of four empirical studies on the provision of family support to older people that have been written members of the Family Support for Older People: Determinants and Consequences (FAMSUP) network. They have in common the use of individual-level data and recognition of the importance of demographic forces, cultural variations and public policy in shaping patterns of elder care. The four papers are also explicitly comparative, and emphasise both between- and within-country differences. The European countries examined by the FAMSUP researchers exhibit several broadly similar demographic trends, but these are superimposed on very different policy regimes. The ‘macro’ focus of much comparative policy-oriented research facilitates the identification and description of population ageing, while illuminating the policy issues raised by demographic change. A macro-focus is also characteristic of much comparative welfare-state analysis. The ‘micro’ orientation of the research presented in this collection typically treats the policy environment as an implicit or residual category. We argue that progress in understanding comparative patterns of elder care, and in developing policy responses to demographic change, will be facilitated through blending the macro and micro perspectives, in which variations in the policy environment are explicitly linked to individual- and family-level behaviour.

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Minding the money: a growing responsibility for informal carers

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although ‘minding the money’ has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that ‘minding the money’ is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

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Research to support the Duty to Review the Implementation of the Mental Health (Wales) Measure 2010... part 2 final report: coordination of and care and treatment planning for secondary mental health users

This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 2 of the Mental Health (Wales) Measure 2010. This part of the Measure requires health boards and local authorities to work in a coordinated way to improve the effectiveness of mental health services. It also requires that care and treatment plans (CTPs) be provided for service users of all ages who have been assessed as requiring care and treatment within secondary mental health services. The report draws upon the focus groups and interviews conducted with service users, their carers and with mental health practitioners. The findings under each of the specific review questions are presented in turn, covering: whether CTPs address the eight areas of life (finance and money, accommodation, personal care and physical well-being, education and training, work and occupation, parenting or caring relationships, social, cultural or spiritual, medical and other forms of treatment including psychological interventions.

Original document (pdf) on the Welsh Government website.

Models of Earning and Caring: Determinants of the Division of Work

This paper examines possible determinants of models of the division of earning and caring activities in Canadian couples. Using the General Social Survey on Time Use, we identify five models of the division of work: complementary-traditional, complementary-gender-reversed, women's double burden, men's double burden, and shared roles. While the complementary-traditional model is declining, it still represents a third of couples. Women's double burden is the second largest category, representing 27 percent of couples in 2005, with men's double burden representing another 11 percent. The shared roles account for about a quarter of couples. Building on these typologies of earning and caring, we analyze the relative importance of life course, as well as structural and cultural factors as determinants of the division of paid and unpaid work within couples. We find that the complementary-traditional and women's double burdens are more likely for older persons, and for persons with young children. Alternative models are more common when women have higher relative resources, for younger persons, and for persons living in Quebec and in urban areas.

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Cultural differences limit carers

Suggests that language barriers may prevent Bangladeshi informal carers from accessing statutory services in South Wales. Suggestion that informal carers in Bangladeshi communities see their role as an "honor and a privilege," but have limited access to statutory services, often because of language problems; Health and social needs of people caring for dependent adults within a Bangladeshi community.

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Paid employment and unpaid caring work in Spain

The objective of this paper is to investigate the determinants of unpaid time in caring activities, with a special emphasis on the gender dimension. Data from the Household Panel Survey for Spain is used to estimate an ordered probit model for the hours interval in care of children and adult people in need of care. The results show that gender is one of the key determinants of the distribution of time in caring. Being in paid employment is also an important factor in the time devoted to caring. Demographic variables like age, marital status and education are also relevant, particularly in the case of women. Finally, cultural habits and customs are also important.

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Giving voice to older people: dignity in care Welsh language toolkit

The aim of the Welsh language toolkit is to raise awareness and understanding of the implications of the Welsh language in establishing dignity in care for older people living in Wales. It is aimed primarily at carers, managers, educators and trainers and focuses on the importance of language in maintaining dignity in care, particularly in the care of the older person and those with dementia.

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Carers of older adults' satisfaction with public mental health service clinicians: a qualitative study

Aims and objectives: The purpose of our paper was to explore primary caregivers' experience of the way public mental health nurses and other mental health clinicians responded to them as primary carers of older adults with mental illness.

Background: As populations age, the prevalence of mental illness in older adults will increase and the burden of care placed on family carers will intensify. While family carers are essential to the well-being and quality of life of older adults with mental illness, they frequently experience marginalisation from clinicians.

Design: An interpretative phenomenological analysis approach was used to inform data collection and analysis.

Method: Individual, semistructured, audio-recorded qualitative interviews were conducted with a purposive sample of 30 primary carers.

Results: Two themes were abstracted from the data highlighting carers' contrasting satisfaction with, and delivery of culturally competent care by, clinicians. A third theme, strategies for enhancing carers' experience of care, incorporated carers' suggestions about ways to strengthen their experience of caring.

Conclusion: Although some primary carers had favourable experiences with clinicians, most were dissatisfied and this, in turn, clouded their overall experience of caring.

Relevance to clinical practice: Our findings have implications for the provision of education, ongoing support for, and building the cultural competence of, clinicians about working with carers. They also highlight the need for a change in organisational and practice culture to encompass mutual respect and partnership with carers within the context of the providing person-centred care for carers and older adults with mental illness.

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'We didn't know it would get that bad': South Asian experiences of dementia and the service response

The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.

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Stress factors and mental health of carers with relatives suffering from schizophrenia in Hong Kong: implications for culturally sensitive practices

Based on Spaniol and Jung's stress and coping framework (1993), this study examined the difficulties and stresses experienced by carers with relatives suffering from schizophrenia in Hong Kong. The impact of these difficulties and stresses and of mastery as a coping resource on carers' mental health was also explored. Results show that carers experience most difficulties and stresses related to the management of negative symptoms such as refusal to perform household duties and neglect of personal hygiene, and less to handling positive symptoms such as bizarre behaviours and thoughts. It is also revealed that perceptions of stress associated with difficulties in the care of relatives with schizophrenia accounts for poorer mental health among carers. Lastly, carers with a strong sense of mastery have better mental health. Cultural issues such as 'family shame and face saving', 'family obligations and reciprocal expectations', 'external orientation to personal control' and the 'the Confucian work ethics' are put forward as explanations for these findings. Suggestions on culturally sensitive practices are made.

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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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Getting it right: assessments for black and minority ethnic carers and service users

The aim of this multimedia learning resource is to provide a broad introduction to the issues affecting minority ethnic carers and service users with an emphasis on achieving cultural competence within individual practice.

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Clarifying and measuring filial concepts across five cultural groups

Literature on responsibility of adult children for aging parents reflects lack of conceptual clarity. The authors examined filial concepts across five cultural groups: African-, Asian-, Euro-, Latino-, and Native Americans. Data were randomly divided for scale development (n = 285) and cross-validation (n = 284). Exploratory factor analysis on 59 items identified three filial concepts: Responsibility, Respect, and Care. Confirmatory factor analysis on a 12-item final scale showed data fit the three-factor model better than a single factor solution despite substantial correlations between the factors (.82, 082 for Care with Responsibility and Respect, and .74 for Responsibility with Respect). The scale can be used in cross-cultural research to test hypothesis that predict associations among filial values, filial care-giving and caregiver health outcomes. [Journal abstract]

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Caregiver-coping in bipolar disorder and schizophrenia: a re-examination

Background: The caregiving experience has been extensively investigated in some chronic/severe mental illnesses such as schizophrenia. These studies have suggested that illness variables and situational/personal characteristics of caregivers have a significant influence on how caregivers cope with mental illness. However, other similar conditions, e. g. bipolar affective disorder (BPAD), have been relatively neglected in this regard. This study attempted to compare caregiver-coping in BPAD and schizophrenia and to explore the determinants of such coping.

Method: Illness variables and coping, burden, appraisal, perceived support, and neuroticism among caregivers were examined in 50 patients each of BPAD and schizophrenia and their caregivers.

Results: High levels of patient-dysfunction and caregiver-burden, low awareness of illness and low perceived control over patient’s behaviour were characteristic of both BPAD and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often. Caregiver’s gender, patient-dysfunction and caregiver-neuroticism had a significant influence on coping patterns, but explained only a small proportion of the variance in use of different coping strategies.

Conclusions: Coping and other elements of the caregiving experience in BPAD are no different from schizophrenia. The relationship between caregiver-coping and its determinants appears to be a complex one. More methodologically sound and culturally relevant investigations are required to understand this intricate area, with the hope that a better understanding will help the cause of both patients and their caregivers.

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Psychological distress and subjective burden of caregivers of people with mental illness: the role of affiliate stigma and face concern

This study examined the internalization of stigma among carers of people with severe mental health problems experiencing stigma. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers’ experience and alleviate their stigma.

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Access all areas

The Access Initiative is run by the Minority Ethnic Carers of Older People Project in partnership with Edinburgh Council, West Lothian Council, minority ethnic carers, and older people. Its twin aims are to give carers from Edinburgh's south Asian and Chinese communities a break from caring and to provide culturally competent services for older members of the family who need care. [Introduction]

Dementia's cultural challenge

Discusses the finding of research which looks at how carers from ethnic minorities view statutory services for family members with dementia. The research, funded by the School of Health and Social Welfare at the Open University, focused on people from south Asian or African-Caribbean backgrounds.

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Caregiving in the Pacific Rim: a comparison of Asian and non-Asian caregiving experiences

This study compares the results of two surveys of informal caregivers conducted in California and Hawaii (N = 1677) to determine if there is a uniquely Asian model of caregiving. Differences between Asian and non-Asian caregivers were found in the percentage of male caregivers, the impact of caregiving personally and on the family, and on employment. Furthermore, in multivariate analysis, being of Asian origin retained significance in predicting both positive and negative caregiver outcomes. This study suggests that Asian-american caregivers, while still respecting their cultural caregiving tradition, may be experiencing difficulties in adapting to new roles.

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Family care for immigrants with dementia: the perspectives of female family carers living in the Netherlands

BACKGROUND: The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia.

METHODS: Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda.

RESULTS: Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it.

CONCLUSION: Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden.

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Disparate routes through support: Negotiating the sites, stages and support of informal dementia care

Worldwide people with dementia are usually cared for at home by informal carers who may themselves have poor health and/or live in social situations which intensify their needs. The scale of these needs continues to be underappreciated and they are exacerbated by the limited social, cultural and emotional resources that carers can draw upon. This paper looks at the disparities in support, and the complex negotiations made by carers, as they reconcile the everyday realities of informal care in the home. Appreciation of these issues is essential in understanding carers' coping strategies in an ageing population.

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Finding a voice: the experiences of Chinese family members participating in family support groups

Family support groups (FSG) are an important source of intervention for caregivers of an older, frailer, or ill family member. Whether and how FSG works within ethnic minority groups is not well understood, however. Drawing on data from a sub-set of a larger qualitative study focused on exploring the impact of participating in a family support group, this study examined how culture influenced the FSG experience of Chinese family caregivers. In-depth, personal interviews were conducted with six Chinese family caregivers about their experiences participating in a family support group. Analysis suggested that while many of the participants' experiences with the family support groups were not inconsistent with those reported by mainstream participants, the overarching theme that dominated their stories was different and was strongly linked to culture by all of the participants. Specifically, participants framed their experience in the support groups as pivotal for helping them become more assertive in relation to the care needs of their relative and themselves. Through the process of attending the groups, participants began to: (1) challenge the cultural values and beliefs about “speaking out” as negative, (2) reframe and recognize the value of “speaking out” as an important aspect of care provision, and (3) re-envision a new framework for providing care. This enabled family members to reposition themselves in their care-partnering role and find a voice within the broader health care system.

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Informal in-hospital care in a rehabilitation setting in Greece: An estimation of the nursing staff required for substituting this care

Purpose. To explore: (a) the type and frequency of care-giving activities provided by family members in the Rehabilitation Setting (RS), (b) opportunities for family members to receive training in care-giving activities, (c) to what extent caregivers feel free to ask the nursing staff for help and (d) to estimate the number of nursing staff required to substitute this care and thus to estimate the money saved by the RS due to the in-hospital informal care.

Method. A convenience sample of 80 family members was selected. A questionnaire was developed to investigate several aspects of informal in-hospital care. Data was analysed using SPSS for Windows (Release 10.1).

Results. Cultural reasons and nursing staff shortage led 78.8% (n = 63) of the sample to provide informal in-hospital care. Oral and facial care (67.5%), help with getting dressed (62.5%), help with feeding (61.25%, n = 49), making patients' beds (57.5%, n = 46) and assistance with transferring patients from one hospital department to another (56.25%, n=45) was provided on a daily basis by the subjects. 48.75%, (n=39) changed sheets 1-2 times per week, while assistance with transfers from bed to wheel-chair and vice-versa (43.75%, n = 35) was provided 3-4 times per week. The estimated total time spent per week by the subjects on care-giving activities was 34,034 minutes that corresponds to a total of 75.6 working days or 15.12 working weeks. In order to substitute this care, the RS would need to hire 17 more assistant nurses, entailing a cost of from e14,450 to e20,060 per month.

Conclusions. Informal in-hospital care is provided by Greek families in the RS. Nursing care staff shortage combined with cultural factors are the main reasons for this phenomenon. However, it saves the RS and the Greek State money and policy makers should be looking for ways to overcome the nursing shortage.

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Family carers' responses to behavioural and psychological symptoms of dementia

Objectives: To describe the responses of family carers to the behavioural and psychological symptoms associated with dementia.

Methods: Thirty family carers of people with dementia were identified in a survey of mental disorder in general practice. Another 20 were referred by local aged mental health services. Carers were interviewed using the Manchester and Oxford University Scale for the Psychopathological Assessment of Dementia (MOUSEPAD) which rates behavioural and psychological disturbances. Carers' customary responses to current symptoms were recorded verbatim and categorised using a structured typology.

Results: Symptom frequency increased in line with dementia severity. Disturbances were generally well tolerated. Most were ignored where possible, except for wandering from home. Other common responses included avoiding triggers, providing reassurance, reality orientation, diversion, and collusion with false beliefs. Restrictive or punitive responses were uncommon.

Conclusions: Few carers articulated clear strategies to deal with behavioural and psychological symptoms. For most, tolerance proved more effective and less distressing than arguments and reprimands. Carers' responses are likely to be influenced by social and cultural factors and may differ in other settings. Copyright © 2003 John Wiley & Sons, Ltd.

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Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions.

Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa.

Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care.

Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world.

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Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK

This article draws on findings from a three-year project to develop and deliver culturally appropriate support group materials for South Asian and Eastern European family carers of relatives with dementia living in the UK. Analysis of interview and field note data revealed insights into how understandings of dementia in different cultural contexts can become operationalised through stigma processes and in turn influence the ways in which people with dementia and their family carers engage with formal and informal support. 

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Older Irish people with dementia in England

The Irish community is the oldest minority ethnic community in Britain. Despite an older age profile than general or minority ethnic populations, as well as excesses of mental and physical ill-health and socio-economic disadvantage, the age, poor health and social profile of the community is largely ignored by policy makers and providers. Several of these factors predispose the Irish community in England to a higher incidence of dementia. Unlike other minority ethnic groups with growing numbers of people with dementia, the incidence of dementia is already high. Older Irish people are often reluctant to access mainstream services because they fail to recognise their distinct cultural needs and experiences. Irish third sector organisations provide a range of culturally specific services to older people and their carers and increasingly to those with dementia. This article uses data from a mapping exercise which identifies non-governmental services for Irish people with dementia and their carers, explaining what cultural sensitivity means for them. Changes in the UK government and the ‘Big Society’ agenda pose a threat to dementia services. However prioritising the National Dementia Strategy and revising the National Carers Strategy within this agenda could expand the role of the Irish third sector in England and improve the lives of Irish people with dementia and their carers.

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Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers’ access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.

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Help from spouse and from children among older people with functional limitations : comparison of England and Finland

Future increases in need of old-age care warrant research on receipt of informal care among older people in different policy and cultural contexts. Separating informal care into help provided by spouse and by children may shed more light on dynamics of informal help, important in alleviating the demands on the formal sector. Using nationally representative data from England and Finland, we performed logistic regression analyses to study receipt of help from spouse and children among community-dwelling persons aged 70+ years with functional limitations. In both countries, women and those with more functional limitations had higher odds of receiving spousal and filial help. In England – but not in Finland – those receiving formal public help had lower odds of receiving spousal help than those with no formal help. Those with low education received more filial help in England, but no association was found between formal and filial help. In Finland, the effect of education was not significant but those receiving formal help had higher odds of also receiving filial help. The results suggest that in a liberal market-led state, the role of children may be to help their parents living alone and with low financial resources. In the context of a generous welfare state, children may function more as active agents bridging the gap between their parents and formal services.

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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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Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature

As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved.

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Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge.

Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups.

Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK.

Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups.

Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups.

Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face.

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Public interest and private concern: the role of family carers for people suffering mental illness in the twenty first century

Objectives: This paper looks to examine the emerging role of carers as essential components in the management of individuals affected by severe mental illness in the context of modern legal and health policy environments. Conclusions: Cultural and legal concepts of confidentiality within the doctor–patient relationship are complex. Increasingly, evidence is recognizing the essential role of carers in the quality management of individuals affected by severe mental illness and this emphasis is being further supported by innovative health policy and legislation. A public health definition for the role of carers may be a more appropriate way to consider their role in mental health management strategies.

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Including older people with dementia in research: challenges and strategies

This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods be spoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.

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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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