Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease
Open Access
- 15 April 2020
- journal article
- research article
- Published by Springer Science and Business Media LLC in BMC Nephrology
- Vol. 21 (1), 1-8
- https://doi.org/10.1186/s12882-020-01776-y
Abstract
Chronic kidney disease is an increasingly common health problem for Aboriginal and Torres Strait Islander people. It is associated with multiple concurrent psychosocial stressors frequently resulting in negative impacts on emotional and social wellbeing. There is need for well-designed intervention studies to provide evidence of effective treatment for comorbid depression or other mental illness in this setting. Attention to early phase piloting and development work is recommended when testing complex interventions. This paper documents feasibility testing and adaptation of an existing culturally responsive brief wellbeing intervention, the Stay Strong App, and three commonly used wellbeing outcome measures, in preparation for a clinical trial testing effectiveness of the intervention. The Stay Strong App, which has not been used in the setting of Chronic Kidney Disease before, is reviewed and adapted for people with comorbid wellbeing concerns through expert consensus between research team and an Expert Panel. The outcome measures (Kessler 10, Patient Health Questionnaire 9, and EuroQoL) are valid, reliable, and commonly used tools to assess various aspects of wellbeing, which have also not been used in this context before. Feasibility and acceptability are examined and developed through 3 stages: Pilot testing in a purposive sample of five haemodialysis patients and carers; translation of outcome measures through collaboration between the Aboriginal Interpreter Service, Aboriginal and Torres Strait Islander research officers and the research team; and conversion of translated outcome measures to electronic format. Research team and expert panel consensus led to adaptation of the Stay Strong App for renal patients through selective revision of words and images. Pilot testing identified challenges in delivery of the wellbeing measures leading to word changes and additional prompts, integration of audio translations in 11 local Indigenous languages within an interactive Outcome Measures App, and related research protocol changes. Modelling the complex intervention prior to full-scale testing provided important information about the design of both the outcome measures and the intervention. These changes are likely to better support success in conduct of the clinical trial and future implementation of the intervention in clinical settings.Keywords
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Funding Information
- National Medical Health and Research Councli (GNT# 1098311)
- National Health and Medical Research Council (NHMRC Fellowship GNT# 1092576)
This publication has 20 references indexed in Scilit:
- Incident haemodialysis and outcomes in the Top End of AustraliaAustralian Health Review, 2020
- Gathering Perspectives ‐ Finding Solutions for Chronic and End Stage Kidney DiseaseNephrology, 2018
- “Like Drawing Into Sand”: Acceptability, Feasibility, and Appropriateness of a New e‐Mental Health Resource for Service Providers Working With Aboriginal and Torres Strait Islander PeopleAustralian Psychologist, 2015
- Prevalence of depression in chronic kidney disease: systematic review and meta-analysis of observational studiesKidney International, 2013
- “Looking back to my family”: Indigenous Australian patients’ experience of hemodialysisBMC Nephrology, 2012
- Approach to treatment of mental illness and substance dependence in remote Indigenous communities: Results of a mixed methods studyAustralian Journal of Rural Health, 2009
- An Approach to Treating Depressive and Psychotic Illness in Indigenous CommunitiesAustralian Journal of Primary Health, 2008
- Depression in Patients with End-Stage Renal Disease Treated with DialysisClinical Journal of the American Society of Nephrology, 2006
- PSYCHOSOCIAL FACTORS IN PATIENTS WITH CHRONIC KIDNEY DISEASE: The Impact of Social Support on End‐Stage Renal DiseaseSeminars in Dialysis, 2005
- 'They don't last long': Aboriginal patient experience of end-stage renal disease in Central AustraliaNephrology, 1998