Pizza and fun! - Evaluation of establishing a youth council on chronic respiratory diseases in a pediatric academic hospital
Paediatric lung disease: from mechanisms to therapy (English)Introduction: Participation of children with a chronic disease in treatment, service improvement and biomedical research is increasingly recognized as important. However, youth participation is not yet mainstream, nor is it always experienced as meaningful and ‘child-friendly’.Last year, a council of adolescents with a chronic respiratory disease has been established at the Emma Children’s Hospital (AUMC) in an attempt to increase child-participation in respiratory management and research.
Aim: To evaluate the initiation of the youth council on chronic respiratory diseases and identify lessons learned on child-participation in an academic medical setting.
Methods: The respiratory youth council currently consists of 10 adolescents with a mild to severe chronic respiratory disease (11-18 years, 5 girls / 5 boys), including a youth chair. The council assembles every two months after school hours in the Emma Children’s Hospital (so-called ‘pizza evenings’). The majority of the council members (n=8) was recruited by respiratory physicians. Two adult facilitators assist the group with organizing the meetings. During the preparation phase and the first 4 meetings of the council, observational and reflective notes were gathered, as well as creative products created during the council meetings. An independent expert in participation conducted interviews with members of the youth council and the facilitators. Thematic and/or critical and creative hermeneutic analysis (CCHA) was applied to analyze interview transcripts, observational and reflective notes and creative products. An ethical framework (Tronto, 2013) and framework of ‘emotion work’ (Hochschild, 1979) was applied to interpret the complexity of interdependent relationships and the emotional needs of children in the context of chronical illness.
Results: The youth council members express that they participate primarily to emotionally connect and care for each other. They consider the youth council as a safe and fun environment, but stress the importance of being treated as a serious conversation partner by adults. The preparation phase of the council was considered time- and effort-consuming by the facilitators, partly due to enforced medical regulations in the academic medical center. Facilitators underline the value of the council, but express that they sometimes struggle with their role to prevent dominance from the adult perspective. During the first meetings the council mainly focused on topics suggested by researchers and pediatric pulmonologists; improving readability of informed consent forms, attractiveness of a social media account of a randomized controlled trial, and assessing the burden of research measurements. In later meetings topics brought up by the council members were discussed; e.g. how to improve hospital rooms for adolescent patients, and to study what motivates pediatric patients to participate in research. The advice provided by the youth council were implemented new research proposals and ongoing research activities, but not yet in hospital practice.
Conclusion:A youth council of adolescents with a chronic respiratory disease can be a valuable tool for child participation in a respiratory setting, from the adolescent as well as from the adult perspective. Continuous evaluation and reflection is needed to prevent pseudo-participation and encourage the implementation of the council’s advice in daily practice.
Members of the youth council during the first meeting