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Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study

OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost‐effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mil...

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Autores principales: Webster, Lucy, Amador, Sarah, Rapaport, Penny, Mukadam, Naaheed, Sommerlad, Andrew, James, Tiffeny, Javed, Sabrina, Roche, Moïse, Lord, Kathryn, Bharadia, Trishna, Rahman‐Amin, Malayka, Lang, Iain, Livingston, Gill
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10107806/
https://www.ncbi.nlm.nih.gov/pubmed/36642866
http://dx.doi.org/10.1002/gps.5868
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author Webster, Lucy
Amador, Sarah
Rapaport, Penny
Mukadam, Naaheed
Sommerlad, Andrew
James, Tiffeny
Javed, Sabrina
Roche, Moïse
Lord, Kathryn
Bharadia, Trishna
Rahman‐Amin, Malayka
Lang, Iain
Livingston, Gill
author_facet Webster, Lucy
Amador, Sarah
Rapaport, Penny
Mukadam, Naaheed
Sommerlad, Andrew
James, Tiffeny
Javed, Sabrina
Roche, Moïse
Lord, Kathryn
Bharadia, Trishna
Rahman‐Amin, Malayka
Lang, Iain
Livingston, Gill
author_sort Webster, Lucy
collection PubMed
description OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost‐effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post‐intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK‐based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.
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spelling pubmed-101078062023-04-18 Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study Webster, Lucy Amador, Sarah Rapaport, Penny Mukadam, Naaheed Sommerlad, Andrew James, Tiffeny Javed, Sabrina Roche, Moïse Lord, Kathryn Bharadia, Trishna Rahman‐Amin, Malayka Lang, Iain Livingston, Gill Int J Geriatr Psychiatry Research Article OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost‐effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post‐intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK‐based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity. John Wiley and Sons Inc. 2023-01-15 2023-01 /pmc/articles/PMC10107806/ /pubmed/36642866 http://dx.doi.org/10.1002/gps.5868 Text en © 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Webster, Lucy
Amador, Sarah
Rapaport, Penny
Mukadam, Naaheed
Sommerlad, Andrew
James, Tiffeny
Javed, Sabrina
Roche, Moïse
Lord, Kathryn
Bharadia, Trishna
Rahman‐Amin, Malayka
Lang, Iain
Livingston, Gill
Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title_full Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title_fullStr Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title_full_unstemmed Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title_short Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study
title_sort tailoring strategies for relatives for black and south asian dementia family carers in the united kingdom: a mixed methods study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10107806/
https://www.ncbi.nlm.nih.gov/pubmed/36642866
http://dx.doi.org/10.1002/gps.5868
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