ArticlePediatric pulmonology2021
Adolescents' experiences with patient engagement in respiratory medicine.
Article in Pediatric pulmonology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed, 13 citations in OpenAlex.
- Nurse leaders' perceptions of organisational policies, guidelines, and practices that enact children and young people's involvement in hospitals.Journal of child health care : for professionals working with children in the hospital and community · 2026Article
- How do we best engage young people in decision-making about their health? A scoping review of deliberative priority setting methods.International journal for equity in health · 2023Article
- Ethics framework for citizen science and public and patient participation in research.BMC medical ethics · 2022Article
- What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again.International journal of environmental research and public health · 2022Article
- How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Expert meeting report: towards a joint European roadmap to address the unmet needs and priorities of paediatric asthma patients on biologic therapy.ERJ open research · 2021Article
- Adolescents' experiences with patient engagement in respiratory medicine.Pediatric pulmonology · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAdolescent 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.
methodsA 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.
resultsThree 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.
conclusionsCouncil 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.