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

Abstract

ABSTRACTObjectiveTo develop content for the website component of COPE-SCD: an online community supporting families after sudden cardiac death (SCD) and assess its acceptability.MethodsBased on topics from codesign focus groups, website content was drafted, and readability of language assessed. SCD family members were recruited from the Genetic Heart Disease Clinic, Royal Prince Alfred Hospital, Sydney. Demographic and psychological measures were collected at baseline. ‘Think aloud’ interviews were conducted to assess the website with questions mapped to theoretical framework of acceptability.ResultsFourteen webpages were created under six menu options. Topics range from information on SCD, genetic testing, grief and loss and family stories. Average Flesch-Kincaid school grade reading score was 8.75. Six individuals participated in a ‘think aloud’ analysis and interview. Fifty percent were female, and all university educated. Median time since death was three years (range 1-5 years). Participants provided feedback about aesthetics, technical issues, and content. Interview responses were mapped to the theoretical framework of acceptability.ConclusionParticipants found the website a helpful resource, and acceptable when considering the theoretical framework of acceptability.Practice implicationsThis website fills a current gap in the care of families after SCD; more work is needed to assess effectiveness.HIGHLIGHTSSudden cardiac death is a devastating complication of many genetic heart diseases.COPE-SCD is an intervention developed to support families after sudden cardiac death.COPE-SCD includes a website covering a range of topics to help families after sudden cardiac death.Website acceptability was assessed using a theoretical framework of acceptability.