Co-designing interventions to ‘live well’: experiences and perceptions of the Genetic, Undiagnosed and Rare Disease (GUaRD) community

In this study, we aimed to identify and prioritise practical interventions the Genetic, Undiagnosed and Rare Disease comm unity 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 gr oups 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...
Source: Journal of Community Genetics - Category: Genetics & Stem Cells Source Type: research