Development and acceptability of a support intervention for families after sudden cardiac death in the young.

Abstract

Sudden cardiac death (SCD) in the young (<35 years) 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 organization. Website and online session content were developed. 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. Interviews from both arms of the study were analyzed using a deductive framework analysis. 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 it is implemented into clinical practice. The COPE-SCD intervention provides a new resource for genetic counselors and other healthcare professionals supporting families after SCD.