Department of Psychology/Neuroscience, Dalhousie University, Halifax, Nova Scotia, Canada.
Maritime Medical Genetics Service, IWK Health Centre, Halifax, Nova Scotia, Canada.
J Intellect Disabil Res. 2023 Sep;67(9):860-868. doi: 10.1111/jir.13061. Epub 2023 Jul 14.
Most individuals with 22q11.2 deletion syndrome (22q11DS) have multi-system and lifelong needs requiring substantial support. Their primary caregivers are usually family members who dedicate lifelong time and effort to their role. The pressures of their roles can negatively impact caregivers' psychosocial well-being, suggesting a need for additional support for this community who currently have no specialised interventions available.
This online study surveyed 103 caregivers of family members with 22q11DS to determine the barriers to accessing support that they faced, the kind of support they would value and whether an online intervention could meet their needs.
The caregivers indicated that a brief online intervention focused on teaching practical skills and connecting them with a peer network of support would be most valuable.
Future studies are planned that will build on these results by designing and testing online interventions tailored to this community.
大多数患有 22q11.2 缺失综合征（22q11DS）的个体都有多种系统的终身需求，需要大量支持。他们的主要照顾者通常是家庭成员，他们将毕生的时间和精力都投入到这个角色中。他们角色的压力会对照顾者的社会心理幸福感产生负面影响，这表明这个群体需要额外的支持，而他们目前还没有专门的干预措施。
本在线研究调查了 103 名照顾有 22q11DS 家庭成员的照顾者，以确定他们在获得支持方面面临的障碍、他们重视的支持类型，以及在线干预是否能够满足他们的需求。
照顾者表示，一个专注于教授实用技能并将他们与支持的同行网络联系起来的简短在线干预将是最有价值的。
未来的研究将在此基础上进行，设计并测试针对该群体的在线干预措施。
