Development of a website support intervention for families after sudden cardiac death

Sudden cardiac death (SCD) in the young (<35years) can be due to an inherited cardiovascular condition. The impact of SCD on the surviving family is significant, with high rates of symptoms of posttraumatic stress and prolonged grief. Using stakeholder codesign we developed COPE-SCD: an online community supporting families after SCD. The intervention includes a website and four online support sessions (general information on SCD, navigating uncertainty, coping with grief and loss both individually and as a family). Here we aim to develop content and assess the acceptability of the COPE-SCD intervention. Participants were recruited from the Genetic Heart Disease Clinic, Royal Prince Alfred Hospital, Sydney, Australia and EndUCD.org, a patient organisation. Demographic and psychological measures were collected at baseline. Think aloud interviews were conducted to assess the website. Online sessions were assessed with post session questionnaires and qualitative interviews. Both interview schedules and questionnaires were mapped to seven constructs of the Theoretical Framework of Acceptability. Website and online session content were developed. Six think aloud interviews were conducted to assess the website, including feedback on content and layout. Twelve participants, in two groups, completed the four online sessions. Overall, participants liked both parts of the COPE-SCD intervention, particularly the opportunity for peer support. They found the intervention acceptable when considering the seven constructs of the theoretical framework of acceptability. Further work is needed to assess the effectiveness of the intervention as its implemented into clinical practice. What is known about this topicSudden cardiac death due to an inherited cardiovascular condition has a devastating impact on the surviving family, with high rates of psychological distress. Previous research has shown more psychosocial support for family members is needed. What this paper adds to the topicWe describe the development and acceptability of a support intervention for families after sudden cardiac death in the young. The intervention combined information and peer support and was found acceptable to individuals with a family history of sudden cardiac death.