Background
With an expected increase of seven to eight-fold in the UK in the number of people from a Black Asian Minority Ethnic (BAME) heritage living with dementia, there will be a similar increase in the number of family carers. Whilst policy and research have discussed issues pertaining to awareness and access issues for minoritised ethnic communities, there remains an under-representation of these communities in services. A lack of understanding on the part of service providers as to how services could meet the needs of these carers, together with a mistrust of services, leads to bias and misconceptions about dementia care amongst South Asian families. Added to this, migrant communities are now well established in the UK, yet little is understood about the factors impacting on care and coping in the face of discrimination and prejudice. This adds to the complexities of caring for older relatives living with dementia.
Aims
The aim of this doctorate was to develop an understanding of how South Asian families cope with caring transitions connected with the care needs of advancing dementia. Emotional and physical coping strategies require some elements of individual capability but also some external elements, such as information, support and access to services.
This research set out to identify what, and how, it influenced South Asian family carers’ ability to cope, especially in the light of a lack of culturally appropriate services. I set out to explore these influences, as they are especially salient in the cultural context. The research explored how South Asian carers coped with transitions in dementia care whilst taking into consideration factors such family dynamics, cultural perspectives, values (including faith) and service provision.
Design and methods
I undertook two studies, both using a phenomenological methodology, underpinned by a social constructivist approach. The first study gathered retrospective accounts from former carers to identify key transitions in their experience of providing dementia care, and to identify factors to explore in a subsequent longitudinal study. It included in-depth semi-structured interviews with former carers from 5 families. The interviews were transcribed and then analysed using thematic analysis to identify key themes. These themes influenced the second study, where I interviewed carers from 7 South Asian families, who were actively caring for a relative living with advanced dementia. Four interviews took place bi-monthly with each family over a period of six months.
Results
Analysis identified a number of themes, which influence South Asian family carers’ ability to cope with the care needs of a relative living with advanced dementia. Study one identified five key themes, which were: stigma from family and community, access to information, appropriateness of services, expectations regarding caregiving, and attitudes arising from faith and religion regarding care provision. Family carers identified the transitioning aspects of South Asian communities themselves and how these influenced the adapting nature of culture, values and social norms in society. These include the changing nature and constructs associated with care and caregiving as care needs increase or become complicated, in relation to what is acceptable as care needs increase or become complicated. Study two incorporated findings of study one. Themes from the analysis identified some general factors, such as changing attitudes to cultural influences, faith-based impacts, carers’ own ability to cope with caring, coping as a family, gender-based influences, services and stigma as factors that impacted their coping experiences.
Conclusion
This PhD raised some interesting aspects relating to coping with care that included the value of nuanced approaches to understanding the needs of the family carers and their frustrations with barriers to accessing services that were associated with faith, gender and cultural expectations or obligations. There was a clear difference between the views of older South Asian family carers, who held more traditional values to providing care, and younger British-born carers, who saw their faith and values as not opposing their ability and desire to seek external sources of support, community or statutory services. The research therefore moves forward the previous discourse mainly restricted to awareness and attitudes. It moves it towards practical recommendations that can help support services to be more open-minded and tackle their own biases. Encouraging this, whilst taking into consideration aspects such as family-centred approaches or faith-based influences in supporting carers to better cope with the demands of caring for a relative with advancing dementia. / Alzheimer’s Society
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/19908 |
| Date | January 2023 |
| Creators | Rauf, Mohammed A. |
| Contributors | Oyebode, Jan, Parveen, Sahdia |
| Publisher | University of Bradford, Centre for Applied Dementia Studies. Faculty of Health Studies |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Thesis, doctoral, PhD |
| Rights | <a rel="license" href="http://creativecommons.org/licenses/by-nc-nd/3.0/"><img alt="Creative Commons License" style="border-width:0" src="http://i.creativecommons.org/l/by-nc-nd/3.0/88x31.png" /></a><br />The University of Bradford theses are licenced under a <a rel="license" href="http://creativecommons.org/licenses/by-nc-nd/3.0/">Creative Commons Licence</a>. |
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