Wang Lucy, Micsinszki Samantha K, Goulet-Barteaux Michelle, Gilman Christina, Phoenix Michelle
McMaster University, Hamilton, Ontario, Canada.
CanChild Centre for Childhood Disability Research, Hamilton, Ontario, Canada.
Child Care Health Dev. 2023 Jan;49(1):20-35. doi: 10.1111/cch.13022. Epub 2022 Jun 30.
Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses.
在过去十年中，利益相关者参与研究在儿童残疾研究中越来越普遍；然而，关于神经残疾青年及其家庭参与证据综合的文献却很匮乏。让患者作为研究伙伴有可能提高研究的适用性和相关性，并使患者伙伴受益（例如增强自尊、增加研究知识和技能）；然而，让神经残疾青年及其家庭参与证据综合的方法、挑战、结果和建议尚不清楚。在本次综述过程中，两名有复杂残疾需求青年的家长作为伙伴参与其中。遵循阿克西和奥马利（2005年）概述的方法，本范围综述的主要研究问题有两个方面：（i）神经残疾青年及其家庭作为证据综合的一部分参与了哪些活动，以及（ii）这种参与的结果是什么？在对369篇文章进行全文审查后，纳入了9篇文章。青年和家庭在证据综合之前以及项目的每个阶段都参与其中，最常见的是在数据分析阶段，他们对研究结果进行背景化处理。青年和家庭的参与没有进行正式评估；然而，家长和研究人员报告了积极的结果。报告了一些挑战，如时间增加、维持参与度以及家长对其参与程度的不满。建议集中在为伙伴提供信息、通过社交媒体建立关系以及就角色、反馈和后勤等问题进行公开沟通。儿童残疾研究人员应意识到如何在证据综合的各个阶段增加参与机会，以及如何提高神经残疾青年及其家庭的可及性。需要进一步研究来巩固一个关于青年和家庭参与证据综合的实施和报告的统一框架。
