Using co-design to develop an online intervention for families after a sudden cardiac death in the young

Abstract

Sudden cardiac death (SCD) is a devastating complication of many genetic heart diseases. The psychological impact on surviving family members is significant and lifelong. Previous needs analysis found medical and psychological needs are of high importance but remain unmet in some cases. Co-design is an increasingly popular research method for the development of interventions and services that include users as members of the research team. Previous research has shown co-design leads to innovative ideas that better address user needs. Aim: To use co-design to develop an online support intervention for families after SCD. Methods: Semi-structured moderated online focus groups were held with key stakeholders, i.e. family members who had experienced young SCD, healthcare professionals and researchers. Guided discussions were used to co-design an online support intervention. Thematic analysis of discussions and iterative feedback on draft materials guided content development. Results: Four focus groups were held (average 11 participants per group). Stakeholder involvement facilitated development of highlevel ideas and priority issues. Key benefits included creative content and materials developed based on user preference for stories, narratives and information reflecting everyday experience of families navigating the legal and medical processes surrounding SCD, normalizing and supporting grief responses in the context of family relationships, and fostering hope. Conclusion: Co-design supported creative presentation, tailoring of information and development of psychosocial interventions to meet the needs of SCD families. Further work is needed to pilot and trial the intervention, prior to it becoming a key resource in the genetic counseling of these families.