Nguyen Linda, Bootsma Jael, Ketelaar Marjolijn, Di Rezze Briano, Jack Susan M, Gorter Jan Willem
School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, ON Canada.
CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON Canada.
Curr Dev Disord Rep. 2023;10(1):47-79. doi: 10.1007/s40474-023-00272-w. Epub 2023 Feb 21.
To identify and map the characteristics and outcomes of programs designed to prepare siblings for their future roles with their sibling with a neurodevelopmental disability.
Existing programs to support siblings of individuals with a neurodevelopmental disability often focus on providing information about neurodevelopmental disabilities, creating a community for siblings to connect with each other, and connecting siblings to resources and services to support them in their roles. Some programs are offered to the whole family with specific sessions for siblings. While these program descriptions are provided in the literature, there is limited understanding about the impacts and outcomes of these programs on siblings of an individual with a neurodevelopmental disability.
Fifty-eight articles (published between 1975 and 2020, with > 50% published since 2010) met the inclusion criteria, representing 54 sibling programs from 11 countries. Extracted data represented 1033 (553 females) sibling participants, between 4 and 67 years old. Twenty-seven programs focused on the outcome of knowledge acquisition for the siblings and thirty-one programs focused on the outcome of empowerment for the siblings to teach skills to their sibling with a neurodevelopmental disability. While there is an increasing number of programs for siblings of individuals with a neurodevelopmental disability in the past decade, there is a lack of siblings as co-developers or facilitators. Future research should consider the various roles that siblings can have in programs to address their needs.
The online version contains supplementary material available at 10.1007/s40474-023-00272-w.
识别并梳理旨在让兄弟姐妹为未来与患有神经发育障碍的同胞相处做好准备的项目的特点及成果。
现有的支持神经发育障碍患者兄弟姐妹的项目通常侧重于提供有关神经发育障碍的信息，为兄弟姐妹创建一个相互联系的社区，以及为兄弟姐妹提供资源和服务，以支持他们履行各自的角色。有些项目是面向整个家庭开展的，同时为兄弟姐妹安排特定的课程。虽然文献中提供了这些项目的描述，但对于这些项目对神经发育障碍患者兄弟姐妹的影响和成果，人们的了解有限。
58篇文章（发表于1975年至2020年之间，其中超过50%发表于2010年之后）符合纳入标准，代表了来自11个国家的54个兄弟姐妹项目。提取的数据涵盖了1033名（553名女性）年龄在4岁至67岁之间的兄弟姐妹参与者。27个项目侧重于兄弟姐妹知识获取的成果，31个项目侧重于增强兄弟姐妹的能力，使其能够向患有神经发育障碍的同胞传授技能。尽管在过去十年中，针对神经发育障碍患者兄弟姐妹的项目数量不断增加，但缺乏让兄弟姐妹作为共同开发者或促进者的情况。未来的研究应考虑兄弟姐妹在项目中可以发挥的各种作用，以满足他们的需求。
在线版本包含可在10.1007/s40474-023-00272-w获取的补充材料。
