School of Allied Health, Australian Catholic University, Sydney, Australia.
School of Allied Health, Australian Catholic University, Fitzroy, Australia.
Disabil Rehabil. 2022 Aug;44(16):4293-4302. doi: 10.1080/09638288.2021.1900927. Epub 2021 Mar 28.
Children and adolescents with cerebral palsy have diverse needs and often engage with healthcare services, including paediatric rehabilitation. Partnering with these children and adolescents on research projects to inform practice has the potential to ensure services continue to remain relevant and appropriate. This study aimed to identify what children and adolescents with cerebral palsy suggest are effective ways for researchers to involve them as partners in research.
This qualitative study was guided by interpretive description. Children and adolescents with cerebral palsy between 8 and 18 years participated in semi-structured, activity-based focus groups or interviews. Verbatim transcripts were coded and analysed using thematic analysis. One member of the research team was a young woman with cerebral palsy.
Seventeen children and adolescents with cerebral palsy from NSW and Victoria (Australia) were involved. Participants were between 8 and 18 years (mean = 12 years), male ( = 11) and female ( = 6). Analysis identified four nested themes: , ", and .
This study identified perspectives of children and adolescents on their involvement as research partners, and considerations for researchers to facilitate involvement of children and adolescents with cerebral palsy as partners in research.IMPLICATIONS FOR REHABILITATIONThe commitment in healthcare to client-centred practice requires that consumers, including children and young people with cerebral palsy, have opportunities to influence the direction of research which impacts them.Children and young people with cerebral palsy are interested in research partnerships and motivated to be involved in various areas of research.Effective research partnerships with younger populations can be facilitated by researchers acknowledging a child or young person's expertise, and employing strategies relating to open communication, flexibility and support.
脑瘫儿童和青少年有不同的需求，他们经常接触医疗保健服务，包括儿科康复。与这些儿童和青少年合作开展研究项目以提供实践信息，有可能确保服务继续保持相关性和适当性。本研究旨在确定脑瘫儿童和青少年认为研究人员有效地让他们作为研究伙伴参与的方式。
这项定性研究以解释性描述为指导。8 至 18 岁的脑瘫儿童和青少年参加了半结构式、基于活动的焦点小组或访谈。使用主题分析对逐字记录进行编码和分析。研究团队的一名成员是一名患有脑瘫的年轻女性。
来自新南威尔士州和维多利亚州（澳大利亚）的 17 名脑瘫儿童和青少年参与了研究。参与者年龄在 8 至 18 岁之间（平均年龄为 12 岁），男性（11 人）和女性（6 人）。分析确定了四个嵌套主题： ， ， ， 。
本研究确定了脑瘫儿童和青少年对其作为研究伙伴参与的看法，以及研究人员在促进脑瘫儿童和青少年作为研究伙伴参与研究方面的考虑因素。
医疗保健中以客户为中心的实践需要让消费者，包括脑瘫儿童和年轻人，有机会影响影响他们的研究方向。
脑瘫儿童和青少年对研究伙伴关系感兴趣，并愿意参与研究的各个领域。
通过研究人员承认儿童或年轻人的专业知识，并采用开放沟通、灵活性和支持相关的策略，可以促进与年轻人群的有效研究伙伴关系。
