‘It’s Too nice’: Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia

Abstract

ABSTRACT OBJECTIVES Resources to support dementia carers from ethnically diverse families are limited. We explored carers’ and service providers’ views on adapting the World Health Organization’s iSupport Lite messages to meet their needs. METHODS Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound “too easy”. They wanted messages to dispel notions of carers as “superheroes”, demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.