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.
Aims and objectives: To explore how healthcare professionals in community-based dementia teams perceive their role in reaching and supporting family caregivers from minority ethnic backgrounds when caring for a family member suffering from dementia or cognitive impairment.Background: Despite increased focus on barriers to accessing the dementia healthcare service for family caregivers from minority ethnic backgrounds, the lack of knowledge on how to address these barriers in order to reach and support this group is evident. Design:The study has a qualitative, explorative design. The principles of consolidated criteria for reporting qualitative research (COREQ) were applied for reporting methods and findings.Methods: Based on data from semi-structured interviews (n = 9) conducted in two large Norwegian municipalities, a thematic analysis influenced by Braun and Clarke was used. The analytical findings draw on Pierre Bourdieu's theoretical concepts of field, habitus and capital.Findings: 'The desire for a harmonious interaction' was identified as an overarching theme. However, while desirable, the analysis shows that healthcare professionals in community-based dementia teams do not always succeed in reaching and supporting family caregivers from minority ethnic backgrounds. The study reveals that the dementia healthcare service is a complex, normative and sometimes rigid system that requires a number of distinct attributes to navigate. Conclusions:The different social structures within the dementia healthcare service can both create and retain barriers that prevent family caregivers from minority ethnic backgrounds from receiving support on their own terms.
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Western dementia care policies emphasise that family caregivers from minority ethnic backgrounds must become more engaged in healthcare services. However, research exploring experiences of receiving services such as home-based care, and thus adjustment to the service, among family caregivers from minority ethnic backgrounds who have relatives with dementia is still scarce. Therefore, inspired by Pierre Bourdieu’s theoretical concepts of field, habitus and capital, we explored how family caregivers from different minority ethnic backgrounds justified decisions about whether to receive home-based care and their social adjustment to the service. Using empirical data from semi-structured interviews with nine family caregivers from different minority ethnic backgrounds, we demonstrated that different mindsets and available social resources gave rise to various actions. Although some family caregivers were optimistic about receiving home-based care, our findings point to tensions between the ideals of care practices and the organisational structures surrounding home-based care as a service. Among those who had experiences with home-based care, we found that organisational limitations, particularly in terms of efficiency demands and time constraints, influenced their behaviours and thus their social adjustments to the service. For some, these limitations eventually resulted in cancellation of the service. However, not all had the same opportunities to make these decisions, indicating that, although family caregivers from minority ethnic backgrounds receive home-based care, this does not necessarily entail a deficiency-free service. Furthermore, we argue that public discourses on this subject can be challenged by encouraging one to look beyond ethnic and cultural labels towards other factors, such as organisational structures, that might largely influence the use of home-based care among these family caregivers.
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