School of Psychology, University of East London, London, UK.
Intellect Dev Disabil. 2010 Dec;48(6):403-16. doi: 10.1352/1934-9556-48.6.403.
Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child ("We had to make a decision"); ways couples coped when bereaved ("We weren't really going through it together"); and ripples from the child's life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships.
唐氏综合征患者患先天性心脏病的风险增加，且唐氏综合征合并先天性心脏病患者的死亡率高于无合并症患者（J. C. Vis 等人，2009 年）。因此，唐氏综合征合并先天性心脏病患儿的父母更有可能比孩子长寿。在这项研究中，使用半结构化访谈探讨了 6 对其患有唐氏综合征合并先天性心脏病的孩子已经死亡的夫妇的经历。使用解释现象学分析（IPA）对访谈进行了定性分析，出现了 4 个主题：双重诊断相关的困境；孩子生命和死亡期间的治疗决策（“我们不得不做出决定”）；当丧亲时夫妇应对的方式（“我们没有真正一起经历”）；以及孩子生活的涟漪。夫妇之间的经历非常相似。夫妇之间在应对和相互支持方面存在差异。实际影响包括考虑伴侣、个人和父亲的特定需求的重要性。
