Study Design and ethical approval: A multi-method approach was used for adaptation of the Stay Strong App intervention to the local context, and for pilot testing and further development of the outcome measures. Ethical approval for the research program was granted by relevant ethics committees (ref HREC 12-1881 and CAHREC 12-100,) including an Aboriginal sub-committee.
Research team and expert panel: The 8-member research team comprised five non-Indigenous members with expertise in mental health and kidney health research in Aboriginal and Torres Strait Islander settings, a Torres Strait Islander renal physician and research fellow, and two Aboriginal and Torres Strait Islander research officers, one of whom spoke five Central Australian Aboriginal languages. A 9-member expert panel was established, consisting of two renal physicians, a renal dietician, four renal health nurses, one of whom is also Chief Executive Officer of Purple House (an Indigenous-owned and operated dialysis service based in Alice Springs), a cultural consultant and Aboriginal Elder from Central Australia, and a renal transplant recipient. The expert panel assisted the research team in adaptation of the Stay Strong App for renal patients. The research team also worked in collaboration with the Northern Territory Government Aboriginal Interpreter Service (AIS), which has offices in Darwin and Alice Springs and employs approximately 30 interpreters. The service provides interpreting and translation for the major languages of the Northern Territory and employs a further 400 casual interpreters covering nearly 100 languages and dialects.
Adaptation of the Stay Strong App
The Stay Strong App has five sections: review of family, strengths, worries, and tips for wellbeing prior to setting life style goals for change. The expert panel reviewed the app and proposed changes. For example, given the specific dietary needs of renal patients some of the dietary suggestions within the app required adaptation. The recommended changes were then presented to the research team (Table 1). Further consultation within the team, the panel and with Aboriginal research team members led to revision of wording and images until consensus was reached.
Table 1. Stay Strong app changes for Aboriginal and Torres Strait Islander people with Chronic Kidney Disease
Original wording or image
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Revised wording or image
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Strengths
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Good tucker
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Healthy food
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Spirituality
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Strong spirit
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Think positive
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Think happy
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Exercise
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Change image representing football to one which shows activities around the house or going for a walk.
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Music or Dance
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Change icon to man and woman with painted bodies
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Missing culture and country
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Change icon to man and woman with painted bodies and picture of landscape
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Having goals
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Music and Dance
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Worries
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Unhealthy lifestyle
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Combine icons to show both unhealthy food and inactivity
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Physical Illness
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Sickness / Being sick
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Anxious and Sadness
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Worried or sad
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Stay strong tips
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Eat Fruit and Vegie
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Understand what healthy diet works for you - talk to dietitian
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Drink Water
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Make new friends and do new things
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Use time wisely
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Additional prompt
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Attend appointments / clinics/ dialysis
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Additional prompt
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Talk to your care team
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Pilot testing of outcome measures
The chosen outcome measures (Kessler 10, Patient Health Questionnaire 9, and EuroQoL) were examined and adapted through 3 stages: pilot testing of feasibility and acceptability 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 into 11 Aboriginal languages (Warlpiri, Arrernte, Luritja, Pitjantjatjara, Alayawara, Tiwi, Kriol, Yolngu Matha, Ngangikurranggurr, Murrinh Patha, Anindiliyakwa), and conversion of paper-based outcome measures to electronic format.
Participants and Setting: The Western Desert Nganampa Walytja Palyantjaku Tjutaku (WDNWPT) Aboriginal Corporation runs Purple House, which has its headquarters in Alice Springs and provides dialysis and support to Aboriginal and Torres Strait Islander people with ESRD. Pilot testing of the paper-based version of outcome measures along with the Stay Strong App was carried out in a purposive sample of haemodialysis patients and carers, who were opportunistically recruited while attending Purple House on the morning that pilot testing commenced. Criteria for inclusion were: identification as Aboriginal and Torres Strait Islander, ability and willingness to participate, self-assessed facility with English language (no funding was allocated for interpreters within the pilot testing), age of 18 years or more, provision of oral informed consent, and ineligibility for the later clinical trial. Those who were eligible for the pilot testing but not the later trial included haemodialysis patients usually living in remote communities who were visiting Alice Springs short term, as well as carers of haemodialysis patients.
Data collection: Verbal informed consent was obtained by the local (non-Indigenous) research officer, using a pictorial, plain English flip chart and a plain English information sheet developed in collaboration with Aboriginal research officers that explained the objectives of the project and the confidential handling of their data. Ethics approval was obtained to gain verbal rather than written consent considering the expected rates of written English literacy in this population. The pilot testing process was divided into three parts: 1) completion of the three paper-based outcome measures 2) completion of the Stay Strong App intervention; 3) completion of a semi-structured interview exploring ease of use, appropriateness and relevance of each tool. Responses during the first two parts of the pilot testing process were entered on the paper-based version of the outcome measures and into the Stay Strong App. The semi-structured interview responses were audio-recorded, and participant comments, suggestions, questions and non-verbal responses were noted, and later summarized and grouped into categories and thematically analysed Participants were asked about each questionnaire: “How was that one? Anything you didn’t like about that one? Any questions you didn’t like or were hard to answer/not relevant to you?”. Participants were then asked about the Stay Strong App: “How did you feel when going through the app? What did you like about it? What didn’t you like about it? Is there anything that we could change to improve the Stay Strong App for people on dialysis?”