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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Diabetes Research Matters: A Three-Round Priority-Setting Survey Consultation with Adults Living with Diabetes and
Christel Hendrieckx1,2,3, Sienna Russell-Green1,2, Timothy Skinner2,4
1School of Psychology, Deakin University, 1-11 Gheringhap Street, Geelong, VIC, 3220, Australia.
Objective:
We aimed to identify the health and quality-of-life research priorities of Australians with diabetes or family members.
Methods:
Through an iterative, three-step, online survey process we (1) qualitatively generated research topics (long list) in response to one question "What research is needed to support people with diabetes to live a better life?"; (2) determined the most important research questions (short list); and (3) ranked research questions in order of importance (priorities). We aimed to recruit N = 800 participants, with approximate equal representation of diabetes type and family members.
Results:
Participants (N = 661) were adults (aged 18+ years) in Australia with a self-reporting diagnosis of diabetes (type 1, n = 302; type 2, n = 204; prior/current gestational, n = 58; less common types, n = 22, or a family member, n = 75). Retention rates for Surveys 2 and 3 were 47% (n = 295) and 50% (n = 316), respectively. From 1549 open-text responses, 25 topics and 125 research questions were identified thematically. Research priorities differed by cohort, resulting in specific lists developed and ranked by each cohort. The top-ranked research question for the type 1 diabetes cohort was "How can diabetes technology be improved …?" and for the type 2 diabetes cohort: "How can insulin resistance be reversed …?". One question was common to the final lists of all cohorts: "What are the causes or triggers of diabetes?" Within cohorts, the top priorities were perceived as being of similar importance.
Conclusions:
The research priorities differ substantially by diabetes type and for family members. These findings should inform funding bodies and researchers, to align future research and its communication with community needs.
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