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.     

The experiences of working carers of older people regarding access to a web‐based family care support network offered by a municipality

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web‐based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web‐based family care support network ‘A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web‐based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer‐based support were barriers to utilising web‐based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web‐based support to working carers' preferences and situations, web‐based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.     

Managing as carers of stroke survivors: strategies from the field

Family members are required to provide increasingly complex care to relatives in the home. Stroke is a major cause of disability and there is increasing pressure being placed on carers to provide on-going support to stroke survivors living in the community. This study involved interviewing carers to determine their perspectives on the support and educational needs they require and the coping strategies they used. Data analysis revealed that carers experienced considerable uncertainty about their role as carers and their future and that they used a number of coping strategies to manage in their caring role. The coping strategies adopted by the carers included remaining positive, adapting to change, comparing their situation with others who were worse off, changing their employment status, humour, switching off and using family support. It is important for health care professionals to understand the complex role of the carers and to advise them on strategies they can use to assist managing this role.     

The experience of caring for someone over 75 years of age: results from a Scottish General Practice population

Aims and objectives. To understand the unpaid carers’ experiences of looking after someone aged over 75 at all stages of their caring career. Background. The role of, and support for, unpaid carers have become central in the debates surrounding community care in the UK. This paper presents the findings of a study to elicit the complexities of the caring role and inform the Primary Health Care Team to help support carers more effectively. Designs and methods. A quantitative research design was employed. Carers of people over 75 years of age in a General Practice, who had been previously identified from a screening questionnaire, were sent the Carers Assessment of Difficulties Index, the Carers Assessment of Satisfactions Index and Carers Assessment of Managing Index questionnaires which examine the experience of caring. Results. From a sample of 247 carers, a 70% response rate (n = 172) was achieved. Satisfactions lay in the quality of care provided; difficulties reflected the potential and actual family tensions generated; coping strategies included reframing difficulties, using humour and practical problem solving. The data show that caregivers’ reactions, such as feeling angry about the situation, or the consequences of their involvement, such as tensions within the family, cause them more difficulties than the actual care‐giving tasks they perform. Conclusion. This study adds to the understanding of carers’ roles by including carers across a range of situations, including those at an early stage of their caring career. Service providers are better able to support carers if they understand the complex interplay of difficulties, rewards and personal coping strategies associated with the caring role. Relevance to practice. The study helps illuminate the less obvious, but important, emotional aspects of carers’ difficulties and suggests strategies which service providers may find helpful in assessing carers’ needs and determining the appropriate interventions.     

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

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

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.     

User-friendly technology to help family carers cope

BACKGROUND: Increases in the older adult population are occurring simultaneously with a growth in new technology. Modern technology presents an opportunity to enhance the quality of life and independence of older people and their family carers through communication and access to health care information. AIM: To evaluate the usability of a multimedia software application designed to provide family carers of the elderly or disabled with information, advice and psychological support to increase their coping capacity. INTERVENTION: The interactive application consisted of an information-based package that provided carers with advice on the promotion of psychological health, including relaxation and other coping strategies. The software application also included a carer self-assessment instrument, designed to provide both family and professional carers with information to assess how family carers were coping with their care-giving role. DESIGN: Usability evaluation was carried out in two stages. In the first stage (verification), user trials and an evaluation questionnaire were used to refine and develop the content and usability of the multimedia software application. In the second (demonstration), stage evaluation questionnaires were used to appraise the usability of the modified software application. FINDINGS: The findings evidenced that the majority of users found the software to be usable and informative. Some areas were highlighted for improvement in the navigation of the software. CONCLUSIONS: The authors conclude that with further refinement, the software application has the potential to offer information and support to those who are caring for the elderly and disabled at home.     

People with intellectual disabilities who are affected by a relative or friend with cancer: A qualitative study exploring experiences and support needs

PurposeTo explore the experiences of people with intellectual disabilities (ID) who have a relative or friend with cancer, and to identify their support needs.Methods and sampleParticipants were 21 adults with ID who had a relative/friend with cancer, now or in the past. Data were collected using focus groups and face-to-face interviews. Focus groups met four times, using a range of data collection techniques. Sessions were audio recorded and transcribed verbatim. Data were analysed using thematic content analysis. Data were collected between March 2010 and March 2011.ResultsFour themes emerged: (1) Protection and inclusion: participants who had not been told about their loved one's illness felt excluded; (2) Coping with cancer: participants had vivid memories of events and feelings. They worried about their families. Many had become carers themselves; (3) Understanding cancer: participants lacked knowledge about cancer and wanted to know more. (4) Someone to talk to: participants would have liked to share their feelings and questions with family, friends or professionals, but had not voiced their questions or concerns. ‘Someone to talk to about my feelings and worries’ and ‘Someone to support the rest of my family’ were voted the most helpful support strategies.ConclusionsCancer nurses should ensure that people with ID in their patients' social circle are included in the family unit and receive adequate emotional support. They should be proactive in giving them information that is easy to understand. Using fictional stories can be particularly helpful in eliciting questions and concerns.     

Clinical notes for informal carers in palliative care: recommendations from a random patient file audit

Although palliative care aims to support family members and informal carers, current evidence suggests that high levels of unmet need persist, and that this population is challenging to work with. This study aimed to 1) measure the proportion of patients that have an informal carer, 2) describe the clinical notes data on existing needs and coping, 3) measure the completeness of assessment data recording, 4) appraise the utility of existing informal carers' sections in the patient files, and 5) make recommendations for improvement. An audit was conducted reviewing 145 closed patient files. Of these, 100 had identifiable informal carers (69.9%). Although patient data was complete, data was severely lacking on their informal carer. Diverse coping strategies were described, and the primary need was for finance and advice about state welfare payments (n=64). The findings suggest a need for files to identify and record informal carers as potentially distinct from family members, promote assessment data completion for informal carers on a par with that of patients, and to develop systematic approaches to systems that maximize utility and incorporate multiprofessional input into the development of clinical notes.     

Problem-solving experiences among elders living alone in eastern Taiwan

Aim. To explore problem‐solving experiences among older people living alone in eastern Taiwan. Background. Elders living alone in Taiwan have a low participation rate in government social support programmes. Providing sufficient care for this population of elders requires knowing not only their problems, but also how and when they seek help solve their problems. Design. Qualitative research was used to gain a deeper understanding of the problem‐solving experiences of older people living alone. Methods. Elders living alone (n = 9) were recruited from a remote area of Taiwan. Data were gathered in audiotaped, semi‐structured interviews and analysed by content analysis. Results. Participants used both internal and external resources to solve problems through an appraisal process. Their internal resources included self‐perception of health status, preventive coping strategies, flexible coping ability and being resigned to one's situation. Their external resources included both human and environmental resources. Based on their lived experience, participants appraised the usefulness of both internal and external resources before deciding whether to seek help from external resources. Conclusion. In Chinese society, maintaining a balance between internal and external resources is an important mechanism for elders in solving problems. Relevance to clinical practice. Our findings may enhance policy makers’ and healthcare providers’ understanding of the problem‐solving experiences of elders who live alone in Taiwan. In practical terms, these findings can be used to improve the elderly people's use of support systems in their community.     

Self-care needs and practices for the older adult caregiver: An integrative review

Older adult caregivers experience health risks due to the demands of the role, higher prevalence of chronic illness, the aging process, and insufficient time for self-care. Using Whittermore and Knafl's methodology, an integrative review was conducted to explore the self-care needs and practices of older adult caregivers. The terms self-care, caregiver, informal caregiver, carer, family carer, and older adult were used to search the CINAHL, PsychINFO and SocIndex databases and obtain studies published in English between 2010 and 2020. Non-research articles, reviews, mean age of subjects < 50 years, studies focused on formal caregivers were excluded. Fifteen articles met inclusion criteria. Physical activity, stress management, social support, and support resources were identified as self-care needs. Self-care practices included self-advocacy, coping strategies, prioritizing of self, legacy building, and activism. Further exploration is required on how to best support older adult caregivers in fulfilling their caregiving role while promoting their own health.     

Nursing home placement: an exploration of the experiences of family carers

This study examines some of the factors leading family carers to place their older relatives in a nursing home. It also explores their thoughts and feelings about their relatives' admission to a nursing home. Analysis of in-depth interviews with relatives (n=10) found that the decision to place an older relative in a nursing home was a difficult one for families. The interviewed carers stated that admission to a nursing home was held off as long as possible but the deteriorating health of the older relative and in some cases their own health meant that there was no other option. Admission to institutional care usually followed a period of prolonged home care and occurred at a time of crisis. Family carers complained that they were given inadequate support from health care professionals and often had no choice in the decision-making process. This was particularly evident in the case of carers whose relative was transferred directly from hospital to a nursing home setting. The majority of carers in this study experienced ambiguous feelings about placing their elderly relative in a nursing home. Feelings of relief that the burden of care had been lifted, contrasted sharply with feelings of guilt that they could not continue with their 'duty of care'. Families also felt a need to justify their decision by emphasizing how friends and other family members agreed that they could not continue with home care in the interests of both their own and the older relative's health. The findings suggest that while many carers are relieved of the physical exhaustion surrounding home care, the emotional turmoil continues long after admission to a nursing home.     

‘You do know he’s had a stroke,don’t you?’ Preparation for family care‐giving – the neglected dimension

? Countries throughout the developed world have introduced a policy of community care for older people to reduce costs to the state and maintain quality of life. ? In reality community care is largely family care and recognition of the need to support family carers is being promoted through the notion of partnership with professional carers. ? Such a partnership calls for a more complete understanding of how carers’ needs change over time and how professional support can be most effective. ? Support is particularly important at the start of care‐giving in order that carers can exercise free choice and be adequately prepared for their role. ? This paper provides an overview an ongoing longitudinal study and reports specifically on the findings of data from a preliminary study in which a convenience sample of seven experienced carers of stroke survivors who attended a stroke and carers club were interviewed in their own homes. ? Based on initial data from a longitudinal study of stroke victims, this paper outlines four themes: ‘What’s it all about’, ‘Going it alone’, ‘Up to the job’ and ‘What about me?’ These themes highlight the difficulties carers experience in the immediate aftermath of stroke.     

Living with major depression: experiences from families' perspectives

The aim of this study was to describe the ways of living with major depression in families. Seven families with an adult member who suffered major depression participated, in all 18 participants. Data were collected from seven narrative group interviews, one with each family. A qualitative thematic content analysis was used and the text was coded according to its content and further interpreted into themes. Findings consist of five themes: 'Being forced to relinquish control of everyday life'; during depression the family members lost their energy and could not manage everyday life. 'Uncertainty and instability are affecting life'; everyday life in the families was unstable and emotions influenced the atmosphere. 'Living on the edge of the community': the families periodically lived in seclusion. 'Everyday life becomes hard'; everyday life was demanding for everyone in the family and the responsibility shifted between family members. 'Despite everything a way out can be found'; the families as a unit as well as individually had their own ways of coping and finding some kind of satisfaction within the bounds of possibility. The families' experiences were demanding. Children were aware of their parent's depression and were involved in managing everyday life and emotionally affected by the situation. This legitimates the need for nurses and other healthcare professionals to have a family's perspective on the whole situation and to include partners as well as children and take their experiences seriously when supporting and guiding a family. It is important to develop strategies which in particular include children in the planning, provision and receiving of care as well as unburden them with the responsibility. It is also important to support the family in their own coping strategies with a major depressive episode.     

Family carers for older relatives: sources of satisfaction and related factors in Finland

This study focuses on sources of satisfaction among family carers for older relatives and related factors in Finland. It is part of a major international project concerned with the coping of family carers in four countries. The results reported here are based on questionnaire data collected among 290 family carers from three Finnish towns. The questionnaire included the Carer's Assessment of Satisfaction Index (CASI) developed by Nolan and Grant (1992). The data were processed using SPSS statistical software. The results suggest that carers derived most satisfaction from seeing they could help their relative feel more comfortable, making them feel needed and wanted. Among factors relating to interpersonal dynamics, carers felt that this is one way in which they can show their love for the person they cared for. The family carer's as well as the dependent person's gender, the family carer's age, care burden and general life satisfaction were associated with sources of satisfaction. The results are compared with earlier findings on family carers' sources of satisfaction in Sweden and the UK. Implications for policy and practice are considered.     

The qualitative experience of Chinese parents with children diagnosed of cancer

Aim. The present study aimed to describe the coping experiences of Chinese parents with children diagnosed as having cancer during the treatment stage. Background. Cancer is the second major cause of death among children in Hong Kong, it claims the lives of 60–70 children per year. Childhood cancer has tremendous impact on the family, especially the parents. It is, therefore, important to understand parents’ psychological functioning and coping experience. Methods. A phenomenological approach was used. Data were collected by qualitative interviews and analysed following Colaizzi's phenomenological methodology. A purposive sample of nine parents whose children were diagnosed of having childhood cancer was recruited from a regional hospital in Hong Kong. Results. Four themes emerged describing parents’ coping experiences: shock and denial, establishing the meaning or the situation, confronting the reality and establishing a new perspective. The initial reactions of the parents to the diagnosis were shock, denial and worry. However, they quickly accepted the reality and regarded their child's illness as their ‘fate’ that they had to accept. They were committed to the care of the sick child and seek informational and emotional support to cope with the situation. All of them were able to identify positive aspects from the illness experience and establish hope for the future. Chinese cultural beliefs might help the parents cope positively and avoid negative emotions. Conclusion. This study found some commonalities of coping experience in both Western and Chinese culture. It adds knowledge to the coping experience of Chinese parents at the treatment phase of their children's illness and highlighted the need for emotional and information support for parents. Relevance to clinical practice. Education programme and mutual support group would be helpful to parents. Nurses have to learn how different cultural groups and subcultural groups in the society cope to provide competent cultural care.     

Daily life for young adults who care for a person with mental illness: a qualitative study

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16-25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.     

Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study

The aim of this study was to explore how young (16–25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.