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

Objective To develop content for the website component of COPE-SCD: an online community supporting families after sudden cardiac death (SCD) and assess its acceptability. Methods Based 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. Results Fourteen 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. Conclusion Participants found the website a helpful resource, and acceptable when considering the theoretical framework of acceptability. Practice implications This website fills a current gap in the care of families after SCD; more work is needed to assess effectiveness. HIGHLIGHTS Sudden 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. ### Competing Interest Statement JI receives research grant support from Bristol Myers Squibb unrelated to this work. All remaining authors have nothing to disclose. ### Funding Statement LY is the recipient of a co-funded National Heart Foundation of Australia/ National Health and Medical Research Council (NHMRC) PhD Scholarship (#102568/#191351). CS is the recipient of a NHMRC Investigator Grant (#2016822) and a New South Wales Health Cardiovascular Disease Clinician Scientist Grant. JI is the recipient of a National Heart Foundation of Australia Future Leader Fellowship (#106732). BG is the recipient of a National Health and Medical Research Council (NHMRC) Early Career Fellowship (#1122330). ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Sydney Local Health District, RPA Zone gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Anonymized data can be made available upon reasonable request and with appropriate agreements and human research ethics committee approval.