Abstract
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
| Original language | English |
|---|---|
| Pages (from-to) | 211-216 |
| Number of pages | 6 |
| Journal | Pediatric pulmonology |
| Volume | 56 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - Jan 2021 |
Bibliographical note
Funding Information:The authors would like to acknowledge the youth council members; Ahmet, Alysia, Elham, Emmanuel, Helianne, Jonathan, Lennart, and Veere for their valuable contribution. In addition, the authors would like to acknowledge Ivo van den Bongaardt, Maud Butter, Erin Smeijsters, and Nienke Sikkens for their help with the organization of the council meetings, and the pediatric pulmonologists and health psychologists from the Emma Children's Hospital, as well as Sandra de Graaf (Lung Foundation Netherlands) for their help with recruitment of the council members.
Publisher Copyright:
© 2020 The Authors. Pediatric Pulmonology published by Wiley Periodicals LLC
Funding
The authors would like to acknowledge the youth council members; Ahmet, Alysia, Elham, Emmanuel, Helianne, Jonathan, Lennart, and Veere for their valuable contribution. In addition, the authors would like to acknowledge Ivo van den Bongaardt, Maud Butter, Erin Smeijsters, and Nienke Sikkens for their help with the organization of the council meetings, and the pediatric pulmonologists and health psychologists from the Emma Children's Hospital, as well as Sandra de Graaf (Lung Foundation Netherlands) for their help with recruitment of the council members.
| Funders | Funder number |
|---|---|
| Emma Children's Hospital |
Keywords
- Adolescent
- Advisory Committees
- Asthma
- Child
- Cystic Fibrosis
- Female
- Humans
- Male
- Motivation
- Netherlands
- Patient Education as Topic
- Patient Participation
- Pulmonary Medicine
- Qualitative Research
- Tertiary Care Centers
