Alugo T, Malone H, Sheehan A, Coyne I, Lawlor A, McNicholas F
Addictions & Mental Health Services, Department of Psychiatry, Saint John Regional Hospital, Saint John, NB, Canada.
School of Nursing & Midwifery, Trinity College, Dublin 2, Ireland.
Child Care Health Dev. 2017 Jul;43(4):527-535. doi: 10.1111/cch.12457. Epub 2017 Mar 30.
22q11.2 deletion syndrome (22q11DS) is a multisystem genetic condition with a broad phenotype. It is associated with a high prevalence of depression and anxiety during childhood and increased risk of schizophrenia in adulthood. Despite this, studies report that families may receive inadequate information of mental health (MH) risks at diagnosis. Therefore, this study investigated parents' experiences of caring for a child with 22q11DS, investigated their knowledge regarding the risk of MH problems and assessed the need for a psycho-educational programme.
A qualitative design and purposeful sampling was utilized. Parents registered with the '22q11 Ireland' support group, and parents listed on the cleft palate database in a children's hospital in Ireland were invited to participate. Focus groups were held with 22 parents. Data were thematically analysed using Burnard's method of analysis.
Most parents had some knowledge of the relationship between 22q11DS and an increased risk of MH issues. Parents reported that MH information relating to 22q11DS was mainly obtained from 22q11DS conferences, the '22q11 Ireland' support group and the Internet. Parents expressed a need for information to prevent or cope with their child's MH issues. Parents suggested that the following topics would be quite useful in a psycho-educational programme. These included information on the early warning signs of MH issues and guidance on when and how to tell the child about the condition and how to manage the child or young person's anxiety, obsessive behaviour or hearing voices.
The findings indicated parental support for a psycho-educational programme that would provide relevant, accurate and timely information on how to effectively care for a child with 22q11DS MH needs.
22q11.2 缺失综合征（22q11DS）是一种具有广泛表型的多系统遗传疾病。它与儿童期抑郁症和焦虑症的高患病率以及成年期精神分裂症风险增加有关。尽管如此，研究报告称，家庭在诊断时可能获得的心理健康（MH）风险信息不足。因此，本研究调查了父母照顾 22q11DS 患儿的经历，调查了他们对 MH 问题风险的了解情况，并评估了开展心理教育项目的必要性。
采用定性设计和目的抽样法。邀请在“爱尔兰 22q11”支持小组注册的父母以及爱尔兰一家儿童医院腭裂数据库中列出的父母参与。与 22 位父母进行了焦点小组访谈。使用伯纳尔德分析法对数据进行了主题分析。
大多数父母对 22q11DS 与 MH 问题风险增加之间的关系有一定了解。父母报告称，与 22q11DS 相关的 MH 信息主要来自 22q11DS 会议、“爱尔兰 22q11”支持小组和互联网。父母表示需要获取预防或应对孩子 MH 问题的信息。父母建议，以下主题在心理教育项目中会非常有用。这些主题包括 MH 问题的早期预警信号信息，以及关于何时、如何告知孩子病情以及如何处理孩子或年轻人的焦虑、强迫行为或幻听的指导。
研究结果表明，父母支持开展一个心理教育项目，该项目将提供有关如何有效照顾有 22q11DS 心理健康需求患儿的相关、准确和及时的信息。
