Carer‐related research and knowledge: Findings from a scoping review

Abstract

The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers' profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross-sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost-effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer-related research is its location in one of two, largely separate, paradigmatic frameworks: the "Gatherers and Evaluators" and the "Conceptualisers and Theorisers." The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring.

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

“…The uncertainties expressed by participants as to the feasibility and impact of interventions to improve carers support indicate the need for pilots and experiments to develop the evidence base. Such studies would need to be sensitive to issues of language and identity as to evidence of impact of interventions on carers’ well‐being (Larkin, Henwood, & Milne, ), as well as sensitive to issues of the workload and culture of primary care, and other health and care services. Given the crucial importance of carers, such studies should be a high priority.…”

Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

“…The scoping review format allows for identification of research gaps in the reviewed material, and thus enables a derivation of recommendations for future research 10. Furthermore, the scoping review provides a narrative account of research available on the interaction and psychosocial needs of adult children and parents at the end of life 10 11. Foci and key concepts as well as gaps of existing research can be identified 10–12.…”

On the Suitability and Potential of Nursing Care Discussion Forums as a Health Promotion Measure for Long-Distance Caregiving Relatives: Evidence from Upper Austria

“…Spatially spoken, caregiving relatives can be split into two groups: local caregivers and distance caregivers. The latter mostly belong to the second generation of carers (daughters, sons) [14,35] and among them, there is a subgroup called long-distance caregivers (LDCs), who have a time expose of at least one hour in order to overcome a geographical distance of at least 50 miles (80 kilometers) between their place of residence and those of their cared-for parent(s) [38,39].…”

“…This is because caregiving relatives are an essential pillar of domestic care for older family members [5,6] and help to fulfill the central wish of older people-namely, staying at home as long as possible [7]. Providing (informal) domestic care is linked with physical strains as well as psychological strains and affects both the caregiver's well-being and-in the long run-health [8][9][10][11][12][13][14]. The impacts on health and well-being vary individually, because caregiving related overloads and burdens are linked to personality such as the degree of emotional involvement and ability to distance oneself from expectations of others, coping strategies and health literacy, the life-cycle position related Healthcare 2019, 7, 139 2 of 20 to employment and child-care, as well as the amount of accompanying support related to domestic care for the elder family member(s).…”

“…Thus far, the efficiency of professionally-led support groups or NCDFs and their added value for psychological well-being and health of caregivers of cared-for elder persons of different clinical pictures is discussed controversially [16][17][18][19][20][21][22], while the issue of demand and location planning as well as the design of health promotion and public health measures-in comparison to local caregiving relatives [14,[23][24][25][26][27][28]-are disregarded. It is precisely the latter aspect that needs attention regarding a considerable proportion of informal caregivers whose amount will increase in the future [25,29], namely long-distance caregivers.…”