Department of Ethics, Law, and Humanities, Amsterdam Public Health Institute, Amsterdam UMC, VU University, Amsterdam, The Netherlands.
Department of Respiratory Medicine, Amsterdam Public Health Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Pediatr Pulmonol. 2021 Jan;56(1):211-216. doi: 10.1002/ppul.25150. Epub 2020 Nov 9.
Adolescent engagement in decision-making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respiratory disease.
A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a tertiary hospital in the Netherlands. Data collection consisted of observations of council meetings, in-depth interviews with youth council members, and moderated group discussions. Data were analyzed using thematic analysis to explore the experiences of the council members (n = 9, aged 12-18 years, all with a chronic respiratory disease). Two-hour council meetings took place in the hospital to provide solicited and unsolicited advice to improve research and care.
Three themes were identified as motives for adolescents to engage in an advisory council: (1) experience of fun and becoming empowered by their illness; (2) the value of peer support and contact; and (3) being able to contribute to care and research. The council's output consisted of solicited advice on information leaflets for patients, study procedures, and dietary menu options for hospitalized children. The council struggled to have their unsolicited advice heard within the hospital.
Council members experienced engagement as beneficial at the individual, group, and organizational levels. However, meaningful youth engagement requires connectedness with, and official support from, officials at all levels within an organization.
青少年参与医疗保健和慢性呼吸系统疾病领域研究的决策过程很少见，但越来越被认为是重要的。本研究旨在反思青少年在建立慢性呼吸系统疾病青少年咨询委员会过程中的动机和经验。
开展了一项定性评估研究，以评估荷兰一家三级医院设立咨询青年委员会的过程。数据收集包括对委员会会议的观察、对青年委员会成员的深入访谈以及有主持人的小组讨论。使用主题分析对委员会成员的经验（n=9，年龄 12-18 岁，均患有慢性呼吸系统疾病）进行分析，以探索理事会成员的经验。在医院举行了两个小时的理事会会议，为改善研究和护理提供征求和未征求的建议。
确定了青少年参与咨询委员会的三个动机：（1）从疾病中获得乐趣和赋权的体验；（2）同伴支持和联系的价值；（3）能够为护理和研究做出贡献。委员会的成果包括为患者信息传单、研究程序和住院儿童饮食菜单选项提供征求意见。委员会努力使他们的非征求意见在医院内得到听取。
委员会成员在个人、团体和组织层面都体验到了参与的好处。然而，有意义的青年参与需要与组织内各级官员建立联系，并获得他们的正式支持。
