Family caregivers’ experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review

Abstract

Aims and objectives:To review the literature on family caregivers' experiences of providing care for a family member from an ethnic minority group living with dementia within the European context. Background: Due to labour migration during the late 1960s and early 1970s, many European countries are now encountering an increasing number of older people from diverse ethnic minority groups who have been diagnosed with dementia. Although family care is predominantly used as a care pathway among families with immigrant backgrounds, little is known about family caregivers' experiences of providing care for a family member with dementia. Design: A systematic review of qualitative literature. Methods: Eight databases (CINAHL, EMBASE, MEDLINE, PsychINFO, SCOPUS, Social Care Online, SocIndex and Epistemonikos) were searched for original, peerreviewed papers, published in English between 2010 and 2021. The literature review was conducted and reported in accordance with PRISMA 2020 checklist for reporting systematic reviews.Results: After identifying, screening and assessing articles for eligibility, 14 articles were critically appraised using the standardised assessment tool Mixed methods Appraisal Tool (MMAT, version 2018) and included in the review. The data synthesis process identified four themes across the qualitative studies: controversies and challenges; a lack of health literacy; barriers to seeking support from the healthcare or social services; and models of care.Conclusions: Most of the family caregivers highlighted the value of being able to care for a family member living with dementia. However, the findings also reveal that they experience controversies and challenges due to their lack of dementia health literacy and perceived barriers to seeking healthcare support. Relevance to clinical practice:The findings from the current review can inform healthcare and social services in relation to implementing models of care that facilitate and complement family caregivers' role in caring for family members living with dementia from minority ethnic groups.

Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

“…For instance, we found significant concerns about the service, especially among those with home-based care experiences, which guided them towards not wanting the service. Previous research confirmed these actions (Lillekroken et al, 2021;Nielsen et al, 2021;; however, only a few caregivers could rely on their connection to the broader family; several faced concerns about juggling care tasks and other commitments. In this sense, although different mindsets and experiences resulted in various usages of home-based care, our findings point to how actions were linked mainly to the family caregivers' social networks and concerns about financial security.…”

“…Current studies continue to raise concerns about healthcare service use, stating that many family caregivers do not perceive such services as culturally sensitive or sufficiently adapted to their needs (Czapka & Sagbakken, 2020; Kenning et al, 2017; Lillekroken et al, 2021; Nielsen et al, 2021; Parveen et al, 2017; Sagbakken, Spilker, & Ingebretsen, 2018). Subsequently, several studies underline the need to merge unique and diverse forms of relationships between family caregivers from minority ethnic backgrounds and healthcare personnel to enhance service use and further engage family caregivers in the service (Czapka & Sagbakken, 2020; Nielsen et al, 2021; Sagbakken, Spilker, & Ingebretsen, 2018; Van Wezel et al, 2016).…”

Changing dynamics of caregiving: a meta-ethnography study of informal caregivers’ experiences with older immigrant family members in Europe

“…Finding suitable long-term caring arrangements for older immigrants in Europe has been one of healthcare policymakers' concerns in the last decade [8,9]. However, ageing immigrants often have poor access to healthcare due to their lower socioeconomic status [10,11], limited health information on available services [11], limited language skills [12], difficulty in navigating health systems [13], as well as a lack of cultural sensitivity within some health services [14]. In addition, relatively few older people with an immigrant background live in long-term care facilities such as nursing homes [1,15] and many prefer to be cared for by their family members [1,[16][17][18].…”

“…Caregiving to older adults enhances family caregivers' personal growth, self-efficacy, satisfaction, appreciation of life and closer relationship with care receivers [25,26]. Nevertheless, family caregivers of older adults have been found vulnerable to poor health outcomes from physical challenges to chronic stress, anxiety, feelings of guilt, and embarrassment [12,13,16,27,28], as well as social isolation and limited social networks [13] due to overwhelming caregiving burden.…”

“…However, there is still limited research on the issue of informal caregiving among immigrants. Research in the area of caregiving within immigrant families mostly addresses the caregiving of older adults with dementia [12,13,[29][30][31]. There is no review study so far addressing the experiences of immigrant-background family caregivers who are caring for older relatives with no specific diagnosis or diseases other than dementia.…”