Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with Chronic Kidney Disease
Abstract Background There is an acute need to develop wellbeing measures and interventions that are appropriate for Aboriginal and Torres Strait Islander people, including residents of remote communities who have chronic physical conditions. The Kessler 10, Patient Health Questionnaire 9, and EuroQoL are valid, reliable, and commonly used tools to assess various aspects of wellbeing but have not yet been translated to Aboriginal and Torres Strait Islander languages. Similarly, the Stay Strong App is a brief, culturally responsive, e-mental health intervention, but has not been used with Aboriginal and Torres Strait Islander people with Chronic Kidney Disease. Methods We aimed to pilot test the above tools with Aboriginal and Torres Strait Islander Australians with Chronic Kidney Disease Stage 5 (CKD-5) and develop revised versions suitable for use in a clinical trial using a four-stage multi-method approach. Stage 1: Pilot testing of outcome measures and Stay Strong App intervention in a purposive sample of five haemodialysis patients and carers to examine acceptability. Stage 2: Translation of outcome measures through collaboration between the Aboriginal Interpreter Service, Aboriginal and Torres Strait Islander research officers and research team. Stage 3: Conversion of revised outcome measures to electronic format. Stage 4: Collaboration of research team and an Expert Panel in an iterative approach to adapt the Stay Strong App. Results Stage 1: Pilot testing of outcome measures identified three areas of difficulty: explanation of time frames and frequency responses, translation of the terms ‘worthless’ and ‘hopeless’, and fatigue and boredom related to the assessment process. Stage 2: Translation of most items was uncontroversial. Discrepancies between team member views and local interpretations of specific terms were addressed. Final drafts were forwarded to the Aboriginal Interpreter Service for translation. Stage 3: Audio translations in 11 languages were integrated into an interactive Outcome Measures App. Stage 4: A new renal version of the Stay Strong App was developed through research team and expert panel consensus. Conclusion The four-stage approach allowed adaptation of the tools for use within a future trial of wellbeing interventions for Aboriginal and Torres Strait Islander people receiving haemodialysis. Trial registration: ACTRN12617000249358 Registered 17 February 2017.