Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia.
School of Population Health, Curtin University, Perth, Western Australia, Australia.
Health Expect. 2023 Aug;26(4):1562-1574. doi: 10.1111/hex.13761. Epub 2023 Apr 20.
The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.
We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia.
In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis.
The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area.
This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.
本项目旨在从儿童和青少年患者、其父母和照顾者以及为他们提供服务的专业人员的角度，确定儿童慢性疾病和残疾（CCD）研究的前 10 项重点。
我们采用基于詹姆斯林德联盟优先伙伴关系方法的三阶段研究。它包括澳大利亚的这三个利益相关者群体的两次在线调查（n=200;n=201）和一次共识研讨会（n=21）。
在第一阶段，提交了 456 份回复，这些回复被编码并合并为 40 个总体主题。在第二阶段，有 20 个主题被提名，在第三阶段进一步细化，然后选择前 10 项重点。其中，前三个重点是提高他们生活的各个方面（学校、工作和社会关系）的意识和包容性、改善治疗和支持的获取途径以及改善诊断过程。
确定的前 10 项重点反映了在该领域进行研究时需要关注 CCD 经历的个体、卫生系统和社会方面。
本研究由三个咨询小组指导，包括（1）患有 CCD 的年轻人；（2）患有 CCD 的儿童或青少年的父母和照顾者；（3）与儿童和青少年一起工作的专业人员。这些小组在项目过程中多次开会，为研究目标、材料、方法以及数据解释和报告提供了意见。此外，主要作者和作者小组的七名成员都患有 CCD。
