Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia

Introduction People living at home with dementia are often cared for by family members, especially those from minority ethnic groups. Many people living with dementia from minority ethnic communities face barriers to accessing formal care. However, there is a paucity of dementia research, which fore...

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Main Authors: Louise Robinson, Katie Brittain, Kate Gibson, Manpreet Bains, Kritika Samsi, Ana-Maria Cîrstea
Format: Article
Language:English
Published: BMJ Publishing Group 2024-12-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/14/12/e092946.full
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author Louise Robinson
Katie Brittain
Kate Gibson
Manpreet Bains
Kritika Samsi
Ana-Maria Cîrstea
author_facet Louise Robinson
Katie Brittain
Kate Gibson
Manpreet Bains
Kritika Samsi
Ana-Maria Cîrstea
author_sort Louise Robinson
collection DOAJ
description Introduction People living at home with dementia are often cared for by family members, especially those from minority ethnic groups. Many people living with dementia from minority ethnic communities face barriers to accessing formal care. However, there is a paucity of dementia research, which foregrounds diversity within minority ethnic populations. This study, conducted between July 2024 and August 2026, will explore the diverse care experiences of South Asian people living with dementia. Conducted across four sites (Newcastle, Nottingham, Birmingham and London), it aims to understand how inequalities related to ethnicity intersect with other factors (eg, gender, age and class) to shape the dementia care experiences of people living in South Asian communities and apply this learning to explore how public policy and care systems could be improved to reduce health and social inequalities.Methods and analysis In Newcastle, ethnographic research will be undertaken with up to 20 people living with dementia (or with memory concerns) in South Asian communities for a period of 12 months. The lengthy research period will enable a deep understanding about how experiences change as dementia progresses over time. In Nottingham and Birmingham, semi-structured interviews and/or focus groups will be conducted with up to 30 people living with dementia (or with memory concerns) in South Asian communities. This will enhance the data generated via the ethnographic research. Analysis will follow the principles of reflexive thematic analysis and will involve identifying themes and synthesising and theorising the data. Following this, findings will be reflected upon in 4–6 task groups convened in London, Nottingham and Newcastle with practitioners from health and social care, voluntary organisations or faith groups involved in dementia care. Task groups will focus on developing practical goals based on the research findings.Ethics and dissemination Ethical approval for this study has been granted by Newcastle University Faculty of Medical Sciences Ethics Committee (Reference: 2773/43721). Findings will be disseminated to academics, practitioners, policymakers and members of the public via a range of channels including conferences, peer-reviewed publications, lay reports, leaflets and non-written formats such as animated videos.
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spelling doaj-art-f2634c1461a949a5809fed64db99fb6f2024-12-17T11:25:10ZengBMJ Publishing GroupBMJ Open2044-60552024-12-01141210.1136/bmjopen-2024-092946Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementiaLouise Robinson0Katie Brittain1Kate Gibson2Manpreet Bains3Kritika Samsi4Ana-Maria Cîrstea51 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK2 Centre for Academic Primary Care, University of Nottingham, Nottingham, UK3 The Policy Institute, King`s College London, London, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UKIntroduction People living at home with dementia are often cared for by family members, especially those from minority ethnic groups. Many people living with dementia from minority ethnic communities face barriers to accessing formal care. However, there is a paucity of dementia research, which foregrounds diversity within minority ethnic populations. This study, conducted between July 2024 and August 2026, will explore the diverse care experiences of South Asian people living with dementia. Conducted across four sites (Newcastle, Nottingham, Birmingham and London), it aims to understand how inequalities related to ethnicity intersect with other factors (eg, gender, age and class) to shape the dementia care experiences of people living in South Asian communities and apply this learning to explore how public policy and care systems could be improved to reduce health and social inequalities.Methods and analysis In Newcastle, ethnographic research will be undertaken with up to 20 people living with dementia (or with memory concerns) in South Asian communities for a period of 12 months. The lengthy research period will enable a deep understanding about how experiences change as dementia progresses over time. In Nottingham and Birmingham, semi-structured interviews and/or focus groups will be conducted with up to 30 people living with dementia (or with memory concerns) in South Asian communities. This will enhance the data generated via the ethnographic research. Analysis will follow the principles of reflexive thematic analysis and will involve identifying themes and synthesising and theorising the data. Following this, findings will be reflected upon in 4–6 task groups convened in London, Nottingham and Newcastle with practitioners from health and social care, voluntary organisations or faith groups involved in dementia care. Task groups will focus on developing practical goals based on the research findings.Ethics and dissemination Ethical approval for this study has been granted by Newcastle University Faculty of Medical Sciences Ethics Committee (Reference: 2773/43721). Findings will be disseminated to academics, practitioners, policymakers and members of the public via a range of channels including conferences, peer-reviewed publications, lay reports, leaflets and non-written formats such as animated videos.https://bmjopen.bmj.com/content/14/12/e092946.full
spellingShingle Louise Robinson
Katie Brittain
Kate Gibson
Manpreet Bains
Kritika Samsi
Ana-Maria Cîrstea
Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
BMJ Open
title Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
title_full Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
title_fullStr Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
title_full_unstemmed Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
title_short Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia
title_sort intersecting social relations of care a protocol for an ethnographic and interview study with south asian people ageing in place with dementia
url https://bmjopen.bmj.com/content/14/12/e092946.full
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