Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

BACKGROUND: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this paper is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. METHODS: A systematic literature review was undertaken of published and unpublished literature databases including: EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool. RESULTS: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals, role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider-society to the caregiver/care recipient dyad. CONCLUSIONS: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted

"We Really Help, Taking Care of Each Other": Older Homeless Adults as Caregivers.

Objectives:Many older homeless adults maintain contact with family. We conducted a qualitative study examining the role of family caregiving for older homeless adults. Method:We conducted semi-structured qualitative interviews with a sample of 46 homeless participants who reported spending at least one night with a housed family member in the prior 6 months. Results:A total of 13 of 46 older adult participants provided caregiving. Themes included (a) the death of the care recipient led to the participant's homelessness; (b) feeling a duty to act as caregivers; (c) providing care in exchange for housing; (d) caregivers' ability to stay was tenuous; (e) providing care conflicted with the caregiver's needs; and (f) resentment when family was ungrateful. Discussion:In a sample of older homeless adults in contact with family, many provided caregiving for housed family. For some, caregiving precipitated homelessness; for others, caregiving provided temporary respite from homelessness, and for others, caregiving continued during homelessness

Well-Being Throughout the Senior Years: An Issues Paper on Key Events and Transitions in Later Life

Social Development Canada’s mission is “to strengthen Canada’s social foundations by supporting the well-being of individuals, families and communities and their participation through citizen focused policies, programs and services” (Social Development Canada 2005a). Well-being is a concept that goes beyond good health to encompass physical and mental fitness as well as social fitness (being able to perform one’s social roles and the demands of everyday living adequately). As people age, they experience a number of transitions in their lives. They may retire, change residence, loose a spouse, become a caregiver, and/or develop a health problem or disability. These transitions, especially when they occur around the same time, may impact on their well-being and independence and prevent them from being contributing members of society. This paper summarizes the research on what we currently know about the key events and transitions experienced by seniors, their impacts, and the resources seniors have or need to successfully cope with these events throughout the senior years. It will also review what we know about opportunities, gaps or barriers in accessing social support programs and service delivery designed to assist seniors in coping successfully with adverse events and life transitions. Issues to be considered include availability, access and costs of community support and home health care services. Finally, the paper will attempt to provide potential policy research directions to address current knowledge gaps. This is an extensive literature, and we have limited the scope by focusing on the last 10 years of Canadian research published in Journals and by Statistics Canada. We have favored research based on national studies in this review, though there are many excellent case studies and qualitative studies that add texture to our knowledge. Recognizing that the senior population is a very heterogeneous group, this review will examine (where the research permits) differences by senior life-course stages, and other target groups such as women, the disabled, visible minority, immigrants, Aboriginal peoples, sub-regions, low income, and persons living alone. This review of the literature has shown that while we have basic information about many of the transitions in seniors’ lives, there is very little information about the various life course stages or about various sub groups of society.health and well-being, retirement, marital transitions, care-giving, homecare

Well-Being Throughout the Senior Years: An Issues Paper on Key Events and Transitions in Later Life

Social Development Canada’s mission is “to strengthen Canada’s social foundations by supporting the well-being of individuals, families and communities and their participation through citizen focused policies, programs and services” (Social Development Canada 2005a). Well-being is a concept that goes beyond good health to encompass physical and mental fitness as well as social fitness (being able to perform one’s social roles and the demands of everyday living adequately). As people age, they experience a number of transitions in their lives. They may retire, change residence, loose a spouse, become a caregiver, and/or develop a health problem or disability. These transitions, especially when they occur around the same time, may impact on their well-being and independence and prevent them from being contributing members of society. This paper summarizes the research on what we currently know about the key events and transitions experienced by seniors, their impacts, and the resources seniors have or need to successfully cope with these events throughout the senior years. It will also review what we know about opportunities, gaps or barriers in accessing social support programs and service delivery designed to assist seniors in coping successfully with adverse events and life transitions. Issues to be considered include availability, access and costs of community support and home health care services. Finally, the paper will attempt to provide potential policy research directions to address current knowledge gaps. This is an extensive literature, and we have limited the scope by focusing on the last 10 years of Canadian research published in Journals and by Statistics Canada. We have favored research based on national studies in this review, though there are many excellent case studies and qualitative studies that add texture to our knowledge. Recognizing that the senior population is a very heterogeneous group, this review will examine (where the research permits) differences by senior life-course stages, and other target groups such as women, the disabled, visible minority, immigrants, Aboriginal peoples, sub-regions, low income, and persons living alone. This review of the literature has shown that while we have basic information about many of the transitions in seniors’ lives, there is very little information about the various life course stages or about various sub groups of society.health and well-being, retirement, marital transitions, care-giving, homecare

Hip fracture. Preliminary results supporting significative correlations between the psychological wellbeing of patients and their relative caregivers

Background and aim. Hip fracture is one of the major causes of loss of self-sufficiency in older patients. The associated caregiving rehabilitation task often falls to the lot of a member of the patient’s family. Our study aims at assessing the relationship between the psychological well-being of patients with hip fracture and their caregivers. Methods. The study was carried-out on 53 elderly patients with hip fracture and their primary caregivers. The Mini Mental State Examination (patient), Activities of Daily Living (patient), Instrumental Activities of Daily Living (patient), Geriatric Depression Scale (patient), Psychological General Well-Being Index (patient/caregiver) and the Caregiver Burden Inventory (caregiver) were administered to each participant. Results. The results revealed significant correlations between stress levels and the psychological well-being of hip-fracture patients and relative caregivers. In particular, the Caregiver Burden Inventory’s total score was negatively related to the patient’s Psychological General Well-Being Index score (p < 0.05) and with Anxiety (p < 0.05), Depressed Mood (p < 0.01), Positive Well-being (p < 0.05) and General Health (p < 0.05) subscale scores, as well as with the patient’s Activities of Daily Living (p < 0.05) score. Patients’ Psychological General Well-Being Index scores were related to the caregivers’ General Health subscale (p < 0.01), and negatively related to Caregiver Burden Inventory Time Dependence (p < 0.05) and Social Burden (p < 0.05) subscales, as well as with the Geriatric Depression Scale score (p < 0.05). Conclusion. A mutual relationship seems to exist between a patient’s psychological well-being and his/her caregiver’s burden. These findings highlight the importance of a bio-psychosocial approach to both patients and caregivers

Chapter 15: Family Caregiving

The United States’ aging population has led to a greater need for caregivers. This responsibility often falls to family members. Social workers can support family caregivers, but mindfulness about group and individual differences is crucial. Understanding diverse needs of family caregivers and recipients will help social workers effectively implement interventions

Dementia Caregiving in the Context of Late‐Life Remarriage: Support Networks, Relationship Quality, and Well‐being

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/100144/1/jomf12059.pd

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Developing New Strategies to Support Future Caregivers of the Aged in Canada: Projections of Need and their Policy Implications

Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated.population aging, caregiving, disability, informal and formal support