Salmiranta Elin, Areskoug Josefsson Kristina, Ockander Marlene, Augutis Marika, Masterson Daniel
Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Jönköping, Sweden.
Faculty of Health Science, University West, Trollhättan, Sweden.
J Spinal Cord Med. 2024 May;47(3):315-326. doi: 10.1080/10790268.2022.2164455. Epub 2023 Feb 6.
Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice.
To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted.
The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach.
Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers.
The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
脊髓损伤（SCI）儿童和青少年的照料者参与SCI研究可以有多种不同方式。本综述探讨了照料者的参与在多大程度上与所谓的“发言权”相关。
通过整理关于SCI儿童和青少年照料者参与情况的现有研究，并综合研究的开展方式，来探究照料者的发言权。
在CINAHL、ERIC、MEDLINE、PsycInfo和Scopus数据库中检索2008年1月至2022年3月发表的文章。提取描述性和叙述性信息，并采用归纳法确定描述照料者参与方式的因素。
共识别出29篇文章，其中28篇的机构与美国有关联，25篇与施莱宁儿童医院有关联。在大多数文章中，照料者被邀请参与研究以完成或开发测量方法。照料者的信息通常通过封闭式问题获取，并进行定量总结，很少或根本没有探讨照料者的观点。
SCI儿童和青少年照料者在研究中的发言权受到代表性、预先确定的重点、缺乏过程参与以及所报告叙述的限制。通过反思发言权，照料者的经历和观点能够在更大程度上得到重视，从而带来改变，最终改善SCI儿童和青少年的护理与健康状况。
