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- W4285292326 abstract "Sudden cardiac death (SCD) is a devastating complication of genetic heart diseases. The psychological impact on surviving family members is significant and lifelong. Previous needs analyses found medical and psychological needs are of high importance but remain unmet in some cases. We used co-design focus groups with stakeholders (healthcare professionals and family members) to develop a support intervention: COPESCD - an online community supporting families after SCD in the young. The intervention contains two parts: (1) a website and (2) a series of four, online support sessions (covering: general information, uncertainty, grief and loss, and family coping). The aim of this pilot study is to assess the feasibility, useability and acceptability of COPESCD. The website component of this intervention will be assessed using a ‘think aloud’ analysis. This qualitative research method allows evaluation of the website including content, layout, navigation, and general likeability. Useability will be assessed using the system useability scale (10 items). Demographic information will be collected including baseline psychological scales measuring depression, anxiety, stress, coping, and impact of events. The online sessions will be assessed using a mixed methods approach. Participants will complete a baseline questionnaire with short questionnaires following each online session. A further questionnaire will be completed at the end of the four sessions. A proportion of participants will be purposively selected for a qualitative interview. Questionnaires and interview schedules have been mapped to seven constructs of acceptability. Through this pilot we hope to further develop COPESCD and improve the care of families after SCD." @default.
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- W4285292326 date "2022-01-01" @default.
- W4285292326 modified "2023-10-14" @default.
- W4285292326 title "COPESCD — An Online Community Supporting Families After Sudden Cardiac Death in the Young: A Protocol for a Pilot Study" @default.
- W4285292326 doi "https://doi.org/10.1016/j.hlc.2022.04.044" @default.
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