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

Aims. To describe informal carers’ coping strategies and their experiences of the support provided by respite care. Background. The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. Design. Survey. Methods. The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index ( Nolan et al. 1995 ) and an index developed by the researchers. Results. Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. Conclusions. The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. Relevance to clinical practice. Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well‐being of the entire family.     

Coping strategies of family carers for older relatives in Finland

Background. As the population continues to age, it is important that older people and their family carers get all the help and support they need with coping. This requires knowledge and understanding of the factors that foster and promote coping strategies, and on the other hand that complicate coping. Aims and objectives. Conducted as part of a major international research project on carers’ work and coping in four countries, the purpose of this study was to explore the coping strategies of family carers looking after older relatives in their own home and to identify related factors. Design. A survey involving 290 family carers from three towns in Finland. Methods. The data were collected with a questionnaire including the Carers’ Assessment of Managing Index developed by Nolan et al. (1995) . Results. The most helpful coping strategy was to establish one's priorities and concentrate on them. Other strategies that over 80% of the respondents regarded as helpful were believing in oneself and one's ability to handle the situation, taking life 1 day at a time, looking for positive things in each situation and relying on one's own expertise and experience. The 10 most helpful coping methods included five problem‐solving strategies, four emotional‐cognitive strategies and one managing stress strategy. The age and gender of the family carers were found to correlate with the results. Conclusions. Our findings lend further support to earlier results according to which there are both similarities and differences in the coping strategies of family carers in different countries. Relevance to clinical practice. Nurses who meet family carers of ageing individuals in their work will be able to use these results in assessing how these carers are coping and whether they need support, as well as in developing services for family carers.     

Admission to care: facilitating role transition amongst family carers

• ? Admission to care after a period of family care-giving has been the focus of much recent research.
• ? Rather than being seen as an end in itself, admission is part of a process.
• ? This article concentrates on ‘reaching the end’ of family care-giving and the ‘new beginning’ of entering residential care.
• ? A cross-national study conducted in the USA and the UK is discussed, and similarities and differences in the two cultures are highlighted.
• ? Decisions to enter a nursing home were often taken hurriedly and with lack of information in both countries.
• ? Issues of quality of care and emotional responses by former carers were also important in both settings.

     

Designing a Resource Guide to help promote health in caregiving

Aim.  To describe development of a Resource Guide, one component of a theory-based intervention. The Guide contains information and ideas to illuminate caregivers' self-care knowledge as a basis for organizing and reinforcing self-care activities.
Background.  Inherent in the complexity of caregiving roles is the emergence of caregiving as a responsibility, often overshadowing caregiver's personal care needs. Health care professionals can partner with caregivers to promote caregiver health. Self-Care TALK is a multimodal intervention to support this partnership.
Methods.  Two theoretical perspectives guided Resource Guide content; adult learning theory and the schema model of cognitive behavioural theory. Materials to stimulate conversations about caregivers' personal concerns about self-care were adapted from extant literature. Sources of information were chosen based on caregivers' learning needs and images of health. Areas of development focused on content, reading level/readability, graphic design, and self-evaluation.
Results.  The Resource Guide standardizes Self-Care TALK protocol while personalizing caregivers' self-care. The Resource Guide provides structure for conversations about what self-care is and ways to promote health.
Conclusion.  The Resource Guide promotes a learning environment that complements interests and experiences of older caregivers. Use of the Guide supports and extends caregivers' self-care vocabularies, and helps clarify self-care schemas and health promotion.     

Exploring the emotional support needs and coping strategies of family carers

This paper explores the emotional support needs and coping strategies of family carers derived from two focus group interviews, each group comprising seven family carers. The interviews were carried out in Northern Ireland as part of phase one of the ACTION (Assisting Carers using Telematics Interventions to meet Older persons Needs) project. The purpose of the interviews was to investigate family carers' needs and experiences, but this paper focuses specifically on the emotional support needs and coping strategies identified by group members. The issues discussed included information and social support needs, the emotional impact of caring, and coping with and adaptation to the caring role. The findings reveal that for the majority of family carers their experience was one of constant searching for support and information. The anxiety and frustration associated with inconsistent and irregular support and lack of information was a major source of concern for the carers in the study. However, the carers employed a number of positive and negative coping strategies to deal with the stress associated with their caregiving role. The study concluded with the recommendation for nurses and other health care professionals to become more proactive in assessing and meeting carers' emotional support needs.     

Stress in carers of individuals with dementia and Community Mental Health Teams: an uncontrolled evaluation study

AIM: The aim of this was to evaluate the effectiveness of interventions provided by a Community Mental Health Team (CMHT) in reducing stress in carers of individuals with dementia. BACKGROUND: The CMHT had been created to working specifically with older people with mental health problems and their carers. Following initial multidisciplinary assessment a range of interventions were provided to both clients and carers according to assessed need. There is an established need for mental health services to focus on the need of carers and the study attempts to see if the interventions provided were useful in reducing carer stress. METHOD: The study used a time series design over a 2-year period on all referrals to the CMHT. All carers of individuals with dementia or clearly identified memory problems were invited to participate and a total of 26 carers consented and participated in all stages of data collection. Data were collected on initial assessment, as well as 3 and 6 months following the initial assessment using the Caregiver Strain Index (CSI). A questionnaire was also administered which collected basic demographic information and details of symptoms demonstrated by the carer's relatives. RESULTS: On initial assessment the mean CSI score for the overall sample was 9.23. The mean CSI reading at 3 months (6.63) and 6 months period (4.12) demonstrated statistically highly significant reductions in carer stress (P = 0.000). A linear stepwise regression analysis of the impact of the different interventions on reductions in the CSI scores showed a statistically significant relationship between respite care and reduction in carer stress (B = 1.705, t = 2.586, P = 0.017). CONCLUSION: The results add support to the role of multidisciplinary community based services for individuals with dementia, offering a range of interventions to both clients and their carers, in reducing carer stress. The authors also argue for the routine use of the CSI in such teams as means of monitoring the well-being of carers as well as evaluating the effectiveness of service delivery.     

Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan-European nursing research project

This paper provides a concept analysis of respite care for frail older people and their family carers. The authors re-examine the broader conceptualization of respite care delineated by Nolan & Grant, namely, users' needs for information, education and support about respite care, based on a review of recent literature and on a user focus group study. This work was undertaken by the Sheffield arm of the ACTION Project research team. ACTION is a 36-month project (1997-1999), involving Northern Ireland, The Republic of Ireland, Portugal, Sweden and England and is the largest nurse-led project to have received funding from the European Union TIDE sector (DGXIII Telematics Applications Programme, Disabled and Elderly). The authors discuss the key elements of respite and, more specifically, how they can be successfully used so that the potential of respite may be realized fully by family carers. Recommendations within the context of the ACTION research project are put forward to enable family carers and the persons they care for to make informed choices about respite care.     

Sexuality, health care and the older person: an overview of the literature

Abstract.  This paper reviews recent literature around sexuality, health care and the older person. The construction of sexuality and the importance of sexuality to older people are discussed, as is sexual diversity in old age, and sexuality and health. Also discussed are the myths and stereotypes associated with this topic, and the medical, social, healthcare, and institutional barriers to sexuality and sexual health in later life.     

Shared Care, elder and family member skills used to manage burden

AIM: The aim of this paper is to further develop the construct of Shared Care by comparing and contrasting it to related research, and to show how the construct can be used to guide research and practice. BACKGROUND: While researchers have identified negative outcomes for family caregivers caused by providing care, less is known about positive aspects of family care for both members of a family dyad. Understanding family care relationships is important to nurses because family participation in the care of chronically ill elders is necessary to achieve optimal outcomes from nursing interventions. A previous naturalistic inquiry identified a new construct, Shared Care, which was used to describe a family care interaction that contributed to positive care outcomes. METHODS: A literature review was carried out using the databases Medline, CINAHL, and Psych-info and the keywords home care, care receiver, disability, family, communication, decision-making and reciprocity. The results of the review were integrated to suggest how Shared Care could be used to study care difficulties and guide interventions. RESULTS: The literature confirmed the importance of dyad relationships in family care. Shared Care extended previous conceptualizations of family care by capturing three critical components: communication, decision-making, and reciprocity. Shared Care provides a structure to expand the conceptualization of family care to include both members of a care dyad and account for positive and negative aspects of care. CONCLUSIONS: The extended view provided by the construct of Shared Care offers practitioners and scholars tools to use in the context of our ageing population to improve the effectiveness of family care relationships.     

Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa

Title.  Defying all odds: coping with the challenges of volunteer caregiving for patients with AIDS in South Africa.
Aim.  This paper is a report of a study to explore the challenges experienced by volunteer caregivers of people living with HIV/AIDS and the strategies employed in coping with these challenges.
Background.  Informal caregiving is associated with stresses that often results in poor health outcomes for caregivers. In South Africa, volunteers play a major role in the provision of care for people living with HIV/AIDS and have been shown to experience burdens as a result of caring. However, little is known about stress and coping among volunteer caregivers.
Methods.  An ethnographic study was conducted, using observation and in-depth interviews, to collect data with 20 volunteers and other stakeholders in two semi-rural communities in South Africa over a 19-month period in 2002/2003.
Findings.  'Defying all odds' emerged as the central theme that encompassed the various ways in which volunteer caregivers dealt with the many practical challenges confronting them. These challenges initially posed a threat to volunteering work but were gradually appraised by volunteers as challenges that could be dealt with using various strategies in order to continue providing care. Eight themes highlighting these challenges and the coping strategies employed by volunteers were identified.
Conclusion.  A clear understanding of how volunteers deal with challenges of caring for people living with HIV/AIDS can give insight into their weaknesses and strengths and can inform the design of interventions aimed at providing support. Studies are needed to facilitate better understanding of the processes of appraisal of challenges by volunteers and the effectiveness of coping strategies, and to track coping strategies over time.     

Factors of positive appraisal of care among Japanese family caregivers of older adults

The purpose of this study was to examine factors of positive appraisal of care among Japanese family caregivers of older adults. The Positive Appraisal of Care (PAC) scale used in this study is a multidimensional Japanese measure and has four domains: relationship satisfaction, consequential gain, role confidence, and normative fulfillment. Three hundred and thirty-seven caregivers participated in this survey. Multiple regression analyses revealed that social support and caregiver belief in caregiving had a consistent impact on all domains of the PAC, whereas the impact of caregiver and care recipient characteristics varied among the domains. For example, caregiver age had a significant impact on role confidence and normative fulfillment but not on relationship satisfaction and consequential gain. The differential impact of caregiver and care recipient characteristics on the domains of the PAC underlines the usefulness of a multidimensional measurement.     

Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis

A qualitative exploratory study investigated the experiences and needs of family carers of persons with enduring mental illness in Ireland. The current mixed-methods secondary study used content analysis and statistical procedures to identify and explore the coping strategies emerging from the original interviews. The majority of family carers reported use of active behavioural coping strategies, sometimes combined with active cognitive or avoidance strategies. The percentage of cares reporting use of active cognitive strategies was the lowest among those whose ill relative lived in their home, and the highest among those whose relative lived independently. Participants with identified active cognitive strategies often reported that their relative was employed or in training. Participants who reported use of avoidance strategies were significantly younger than participants who did not report use of such strategies. The lowest percentage of avoidance strategies was among participants whose ill relative lived independently, whereas the highest was among carers whose relative lived in their home. The findings of this study highlight the importance of a contextual approach to studying coping styles and processes. Further research questions and methodological implications are discussed.     

Expectations and experiences of older people and their carers in relation to emergency department arrival and care: A qualitative study in Australia

Although older people frequently present to the emergency department (ED), little is known about their experiences in this setting, despite increasing attendance rates reported in this population internationally. This study explores the experiences of older people and their carers leading to and during ED care in a metropolitan university hospital in Sydney, Australia. The study forms part of a larger prospective exploratory study on this topic. Individual in‐depth interviews were conducted with 10 people over 65 years of age who had a chronic illness and their carers one month after they presented to the ED. Interviews were transcribed verbatim and analyzed using general interpretive methods. The results revealed that the participants presented to the ED as a result of escalating symptoms and on their general practitioner's advice. Participants felt uninformed about ED procedures, therefore, families/carers felt the need to advocate for information and basic services. Participants were grateful for the care received and mindful of the busy environment. To meet the expectations of older people, nurses need to provide timely information and advise carers how they can assist.