Giving voice to informal caregivers of older adults.

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

The relationship between caregiving and employment. A study of stress in employed and unemployed caregivers of elderly persons

The need for persons to provide care on an informal basis to frail and dependent elderly persons has generated a "caregiving crisis" in this country. Middle age women, the traditional caregivers for most generations, are no longer readily available to provide informal care. Instead, they are likely to be struggling to cope with the dual demands of paid employment and family responsibilities. Significant differences exist between employed and unemployed caregivers in relation to age, marital status, gender, personal health status, and caregiver-care recipient relationships. However, no differences exist in relation to the amount of stress experienced as a consequence of caregiving responsibilities. Occupational health nurses have an ideal opportunity to help employed caregivers cope with their caregiving responsibilities both at the worksite and in their personal lives.     

The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives. The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers. Background. Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons. Design and methods. Cross‐sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age‐stratified sample in a postal survey among older people in the southern part of Sweden. Results. Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem‐solving strategies. Conclusions. The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem‐focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving. Relevance to clinical practice. Reinforcing the health‐promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.     

Caregiver Reactions to Dementia Symptoms: Effects on Coping Repertoire and Mental Health

ABSTRACT

Currently, 15 million informal caregivers, most of whom are women, provide care for older adults with dementia (Alzheimer's Disease Association, 2016). Caregiving for these individuals often creates distress and may adversely affect female caregivers' psychosocial and spiritual well-being. Approximately 35% of dementia caregivers complain of health deterioration after initiating caregiving responsibilities as compared to 19% of caregivers of older adults who do not have dementia (Alzheimer's Disease Association, 2016). Persons with dementia exhibit symptoms and behaviors that often are challenging for their caregivers. The way that caregivers react to these symptoms and behaviors may affect their coping repertoire and their mental health. Adequate evaluation of caregiver reactions to symptoms of dementia will provide information useful for developing targeted interventions to promote optimal health of female dementia caregivers and to potentially postpone the need for nursing home or long-term placement of the care recipient.     

Elderly male spouses as caregivers--toward an understanding of their experience

Male caregivers have difficulty assuming personal and household responsibilities; they seem to cope by focusing on the caregiving tasks and projects, establishing daily routines, and carving out their own territory in the home. To facilitate effective interventions, nurses should ascertain the elderly male spouse's meaning of caregiving. This would enable practitioners to foster the caregiver's strengths and provide support in those areas where burden or difficulties are experienced. Husbands as caregivers were more likely than wives to seek the help of formal providers and receive more informal support. Male caregivers tend to not participate in support groups. Before making a referal, nurses should ensure the group is geared to the special needs of the man.     

香港脑损伤患者的出院后服务

目的:建立针对脑损伤患者及其看护者的可负担、易获取的出院后电话跟进服务,并为发展区域内有成本效益的连续监护体制提供实证基础。方法:本研究从香港大学玛丽医院脑外科招募35名成年脑损伤患者和26名看护者。参与者在出院后第4周和第12周各接受一次结构化的电话访谈。有调整能力不足风险的患者与看护者将被送交进一步的医疗咨询或心理干预。患者的生理和认知功能,以及患者与看护者的情感功能、知觉到的社会支持和对当前所提供的服务的满意程度都被列入调查。结果:大部分患者报告他们的生理状况有明显改善。相当多的患者在出院后经历过认知困难并报告所接受到的社会心理支持不足。大多数看护者报告在看护期间健康、情感功能和社会生活受损。患者与看护者都对服务表示满意,看护者的满意程度更高。结论:脑损伤患者及其看护者都受益于出院后电话跟进服务。两者都同意该项服务有助于识别有调整能力不足风险的个体,并提供及时的建议和情感支持。看护工作会明显损害看护者的生理、情感功能和社会生活,提示需要为他们提供关于看护技巧、生活调整和压力管理的意见与建议。     

Predictors of elders' and family caregivers' use of formal home services

The purposes of this study were to examine the characteristics of care recipients, caregivers, and their relationship to predict the use of formal services in the home by functionally impaired elders, and to explore the effect of informal care on formal service use in the home. A secondary analysis of data from the informal caregiver questionnaire and the community survey of the 1989 National Long-Term Care Survey was performed using logistic regression analysis. Results showed that the utilization of formal services was less frequent as the hours of informal care increased. Care recipient characteristics that emerged as important predictors included residence in elder housing, recent hospitalization, gender, limitations in activities of daily living, recipient of Medicaid, age, quantity of informal care, and number of household members. Important caregiver characteristics included difficulty getting around outside, rearrangement of work hours, and bowel and bladder care performed by female caregivers. The findings from this study support the consideration of both care recipient and caregiver characteristics when predicting the utilization of formal service use in the home. Data also support the development of interventions to promote the caregiving process. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21:533–543, 1998     

Informal health care in Belgium

Research on the provision of care is mostly based on household sample surveys, which cannot measure the prevalence of caregiving in the general population. In order to appraise the individuals' involvement in the provision of informal care, specific questions on the care provided were included in Belgium's 2001 Census. Using data from the census we aim at analyzing how the provision and the amount of informal care, varies with respect to the individual's socio-economic characteristics. We found that 1 out 10 Belgians provide informal care. As expected, most caregivers can be found among middle-aged women. Yet, the percentage of men and women providing informal care at home is quite similar. The education level has an unexpected influence on the provision of care: more educated individuals are more likely to be caregivers while lesser educated individuals are more likely to provide more hours of care. Given that informal care is a valuable resource for meeting the care needs of today's societies, more attention should be given to the consequences of providing it. Indeed, not considering the negative aspects of providing informal care, such as the deterioration in the health status of caregivers or the competing demands between working and caring, can lead to a reduction of the amount of informal care provided.     

Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)

The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N = 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CG groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups.     

Caregiving stress among community caregivers for the elderly: does institutionalization make a difference?

Nurses in community settings are frequently exposed to elderly persons who receive a significant amount of physical and/or psychosocial support from one or more informal caregivers. Although numerous investigations exist examining stress and coping in persons who provide such care for elderly persons, little is known about the caregiver's status once full-time caregiving ceases. This study describes emotional and physical components of caregiving stress in a convenience sample of 124 caregivers. Of these, 31 had placed their charge in a nursing home, while 93 had not. A multivariate analysis of variance (MANOVA) between placed-nonplaced groups revealed no significant differences in the total score or Role and Personal Strain subscales of the Burden Interview (J. Zarit & S. Zarit, 1983). Implications for community health nursing practice involve providing ongoing counseling and support of the caregiver and his or her charge, preparing both for the placement experience should it be indicated, and continued follow-up care post-placement. Greater collaboration between community-based and institutionally based nurses can facilitate implementation of these strategies.     

The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.     

Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Scand J Caring Sci; 2011; 25; 706–715 Negotiations about helpfulness – the relationship between formal and informal care in home care arrangements Background: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. Aims: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. Method: Eighty‐eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. Findings: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses’ work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. Conclusions: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.     

Impact of caregiving: listening to the voice of informal caregivers

Long-term care of the elderly and the disabled rests on a vast network of informal caregivers. This qualitative study examined the effects of caregiving on the health and wellbeing of a small, non-representative sample of urban women caregivers. These 11 informants participated in two interviews. Health was conceptualized in a holistic manner, consistent with the view of the World Health Organization and Health Canada. The caregiving experience, as described in this study, was life changing and consuming. Analysis revealed that the domain of caregiving could be captured by three dominant themes: loss and grieving; adapting and coping; and the short- and long-term impact. The consistency in the findings and policy recommendations of studies of informal caregiving begs the question: when will caregivers finally be heard?     

Is there a difference between family caregiving of institutionalized elders with or without dementia?

Based on the stress and coping model of Lazarus and Folkman, the aim of this comparative study was to determine whether the caregiving experience of the caregivers of an institutionalized demented relative is different from the one of the caregivers whose relative does not suffer from dementia. Five dimensions of the caregiving experience were considered: stressors, cognitive appraisal of the stressors, social support, coping strategies and well-being. The sample consisted of primary caregivers of a demented and a nondemented relative. Results revealed that the caregivers of a demented relative were exposed to more stressors than the caregivers of a nondemented relative. Functional impairment as well as depressive behaviors were appraised as more disturbing. According to MANCOVA analysis, formal and informal social support seems to play a protective role in the psychological distress of the caregivers of a demented relative. There was no difference between the two groups with regard to their coping strategies. Overall, the caregivers of a demented relative seemed to experience some dimensions of caregiving in a different way compared with their counterparts, and the nature of dementia in itself helps to explain this difference.     

Older caregivers' coping strategies and sense of coherence in relation to quality of life

AIM: This paper reports a study to investigate coping strategies and sense of coherence in relation to gender, the extent of care, caregiving activities and health-related quality of life in a population-based sample of caregivers aged 75 and over. BACKGROUND: Caring for another person can be stressful both emotionally, and caregiver burden may affect quality of life in a negative way for the carer. Caregivers' experience of burden may depend on for example, the behaviour of the person cared for, their own health and their sense of coherence. Older people take a great part of caregiving responsibility and thus understanding of their strain and coping is required. METHODS: A postal survey was carried out in 2001 with 171 informal caregivers, aged 75 or older. The response rate was 47%. The questionnaire included the Short-Form 12, Carer's Assessment of Managing Index, and Sense of Coherence instrument. RESULTS: Almost 70% of caregivers provided help every day. Higher health-related quality of life was predicted by using self-sustaining coping strategies and by high sense of coherence. Poor economic situation and demanding social and practical support predicted low scores. CONCLUSION: These findings could help identify those at risk of low quality of life due to caregiving, dysfunctional coping or lack of information about care. Early intervention, including education about alternative coping strategies and practical information, might allow caregivers better possibilities to continue caring with less negative effects on their lives.     

Working with ambivalence: informal caregivers of patients at the end of life

Informal caregivers of patients at the end of life perform a crucial role in maintaining and supporting patients at home. They provide a high level of demanding care, and as a consequence have been shown to have high-level information and support needs themselves. However, they are less often identified as recipients of services than as providers, and little research has addressed how services should be developed to meet their needs. This study aimed to address obstacles in the access to and provision of targeted, appropriate interventions. Eighteen informal carers participated in this qualitative study, which used a grounded approach to the analysis and generation of concepts. The data showed that while recognising their stress, anxiety and need for a caregivers' service, caregivers were highly ambivalent with regard to their own needs. The design and delivery of an intervention aimed at caregivers should take account of their high level of ambivalence by addressing their lack of identification with their role, enhancing existing coping strategies, and ensuring that interventions are accessible and acceptable.     

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services.