Background Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members’ psychosocial support needs are often unmet. Purpose This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs. Methods The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members (N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis. Results Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning. Conclusions YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.

中文翻译：

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对受年轻人心源性猝死影响的家庭的心理社会需求和支持影响进行定性分析：社区和同伴支持的作用


背景 青少年心源性猝死 (YSCD) 经常发生在以前健康的个体中，是一种悲剧事件，对受影响的家庭产生毁灭性影响，这些家庭遭受创伤后应激和长期悲伤的风险较高，而且本身也可能面临 YSCD 的风险。先前的研究表明，幸存家庭成员的社会心理支持需求常常得不到满足。目的 本研究旨在确定受 YSCD 影响的家庭如何根据其心理社会支持需求体验专门的社区和同伴支持。方法 该研究采用定性设计，对焦点小组和访谈数据进行主题分析。对受影响的家庭成员进行了三个焦点小组和五次个人访谈（N = 19）。该样本取自英国慈善机构“年轻人心脏风险”。焦点小组和访谈的录音被转录并进行主题分析。结果 确定了三个首要主题：1. YSCD 社区支持提供安全场所，2. YSCD 社区支持促进意义建构，3. YSCD 社区支持促进寻找新意义。结论 受 YSCD 影响的家庭可以从专门的社区和同伴支持中​​受益，这些支持提供安全的环境、提供归属感、理解和正常化，并促进意义建构和自我意识的重建。专门的社区支持可以通过帮助预防 YSCD 以及通过纪念和遗产建设来与死者保持持续的联系，从而促进有意义的重新参与生活。临床医生需要意识到需要将现有的社区和同伴支持纳入患者治疗路径。