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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, and others. (2023) Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study. International Journal of Geriatric Psychiatry, 38 (1). Article Number e5868. ISSN 0885-6230. (doi:10.1002/gps.5868) (KAR id:99754)


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. 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. 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. 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.

Item Type: Article
DOI/Identification number: 10.1002/gps.5868
Uncontrolled keywords: family carers, dementia, cultural adaption, mental health, ethnicity, psychological intervention
Subjects: H Social Sciences
H Social Sciences > HV Social pathology. Social and public welfare
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: Alzheimer's Society (
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 24 Feb 2023 16:22 UTC
Last Modified: 04 Mar 2024 16:46 UTC
Resource URI: (The current URI for this page, for reference purposes)

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