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Title: Co-designing interventions to 'live well': experiences and perceptions of the Genetic, Undiagnosed and Rare Disease (GUaRD) community.
Austin Authors: Beadell, Inez;Byun, Malia;Feller, Hollie;Ferrie, Monica;Best, Stephanie
Affiliation: Medicine (University of Melbourne)
California Lutheran University, Thousand Oaks, CA, USA.
Genetic Support Network Victoria, Melbourne, VIC, Australia.
Department of Health Services Research, Peter MacCallum Cancer Centre, Parkville, Melbourne, Australia.
Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Australia.
Australian Genomics, Murdoch Children's Research Institute, Melbourne, Australia.
Victorian Comprehensive Cancer Centre Alliance, Parkville, Melbourne, Australia.
Issue Date: 31-Mar-2023
Date: 2023
Publication information: Journal of Community Genetics 2023
Abstract: The Genetic, Undiagnosed and Rare Disease community faces a range of hurdles to live their 'best life' including physical, social and psychological barriers. They are also resilient and experiential experts with insight into what works and what could work for them. In this study, we aimed to identify and prioritise practical interventions the Genetic, Undiagnosed and Rare Disease community report could help them to 'live well'. Using a three-stage approach, we first analysed data from a year-long Genetic, Undiagnosed and Rare Disease journal study to record all the practical interventions reported, either trialled or proposed. Second, after grouping the interventions (n = 19) into four themes (support for individuals with GUaRD; support for carers of people with GUaRD; education/employment; transition), we presented the interventions to members of the GUaRD community (people with GUaRD, their carers and peer support group members) across three focus groups (n = 13). Focus group transcripts were analysed for refinements to the interventions, barriers and/or enablers to enacting them and for any additional interventions suggested. From this analysis, the interventions were grouped to identify specific actionable activities (n = 8). Finally, these eight interventions were discussed in a workshop with the GUaRD Community Advisory Group and prioritised using the APEASE framework. Prioritised interventions targeted a range of stakeholders and included creating a lived experience video library, supporting peer support groups with grant applications, and educating clinicians about referring to peer support groups. Further research is now required to test these findings before trialling and evaluating an intervention to measure the impact on the GUaRD community.
DOI: 10.1007/s12687-023-00643-1
ORCID: 0000-0002-1107-8976
Journal: Journal of Community Genetics
Start page: 1
End page: 11
PubMed URL: 37000401
Type: Journal Article
Subjects: APEASE
Genetic, Undiagnosed and Rare Disease
‘Live well’
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