Adaptation of an evidence‐based intervention for family carers of people living with dementia for delivery to UK‐based South Asian carers: Widening access to START (Strategies for Relatives)

Abstract

AbstractBackgroundFamily members caring for a relative with dementia often become anxious or depressed. We developed START (STrAtegies for RelaTives) for family carers of relatives with dementia to promote helpful coping strategies. START is the first clinically‐ and cost‐effective intervention of its kind, and is currently delivered within UK National Health Service. However, barriers to delivery of START to South Asian carers include delayed presentation to health services, stigma, and language. In this study, we therefore aimed to widen access to START by adapting it for delivery to UK‐based South Asian family carers.MethodsIn Phase 1, we used the Cultural Treatment Adaptation Framework (CTAF) to guide data collection, through a semi‐structured interview guide. We interviewed 15 UK‐based South Asian carers about START and factors affecting its implementation to inform modifications. We transcribed interviews and researchers double‐coded them independently, using the CTAF to organise the findings.In Phase 2, we trained and supervised facilitators to deliver the adapted START intervention to South Asian family carers. In Phase 3, after START delivery, we used the i‐PARIHS framework to evaluate the implementation, through qualitative and quantitative interviews with all carers and qualitative interviews with facilitators.ResultsWe interviewed 15 South Asian carers in London and Bradford, UK. There were no changes to START’s core components. We incorporated cultural values and beliefs into the START intervention manual by modifying and adding in new examples and testimonials, and adding prompts. We also translated the manual into Urdu, a common South Asian language in the UK, and produced an audio version of the manual in Urdu. The project group met to agree on the modifications. The intervention was delivered to 13 family carers between January 2019 and January 2020 including 4 in Urdu and conducted interviews afterwards assessing satisfaction with the intervention and its effect on depression and quality of life.ConclusionsWe used multiple methodologies to identify barriers and facilitators to effective delivery of a psychosocial intervention for South Asian family carers based in the UK. We found that adaptations to the content and delivery of an intervention may improve its acceptability and efficacy.