ArticleHealth expectations : an international journal of public participation in health care and health policy2010
Exciting but exhausting: experiences with participatory research with chronically ill adolescents.
Article in Health expectations : an international journal of public participation in health care and health policy, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 1 of them a synthesis that pooled it.
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
31 citing papers in PubMed, 1 synthesis or guideline pooled it, 83 citations in OpenAlex.
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- Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey.BMC medical education · 2024Article
- Co-production of health and social science research with vulnerable children and young people: A rapid review.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- The INSCHOOL project: showcasing participatory qualitative methods derived from patient and public involvement and engagement (PPIE) work with young people with long-term health conditions.Research involvement and engagement · 2023Article
- Pediatric patient engagement in clinical care, research and intervention development: a scoping review.Journal of patient-reported outcomes · 2023Article
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- A Blueprint for Involvement: Reflections of lived experience co-researchers and academic researchers on working collaboratively.Research involvement and engagement · 2022Article
- Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom.Research involvement and engagement · 2022Article
- A self-portrait: Design opportunities for a tool that supports children's involvement in brain-related health care.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Including the voice of paediatric patients: Cocreation of an engagement game.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Adolescent and young adult patients as co-researchers: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
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- Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program.Research involvement and engagement · 2020Article
- Co-Designing an Intervention to Increase HIV Testing Uptake with Women from Indonesia At-Risk of HIV: Protocol for a Participatory Action Research Study.Methods and protocols · 2019Article
- Engaging children and families in pediatric Health Research: a scoping review.Research involvement and engagement · 2019Article
- Patient involvement in qualitative data analysis in a trial of a patient-centred intervention: Reconciling lay knowledge and scientific method.Health expectations : an international journal of public participation in health care and health policy · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAdolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research.
objectiveTo evaluate the feasibility, benefits and limitations of a participatory research (PR) project involving chronically ill adolescents as co-researchers. DESIGN SETTING AND
participantsNine adolescents, aged 15-17 years, acted as co-researchers in a hospital-based PR project. They co-developed an interview protocol and during a disco party held for this purpose interviewed each other and 25 fellow patients (12-19 years). They provided advice on the draft report and participated in the dissemination of the results, but were not involved in the design of the project or analysis of results.
resultsInvolving adolescents in participatory health research was feasible and appreciated by researchers and youth alike, but had its drawbacks too. The peer-research attracted few participants, the interviews lacked depth and did not yield substantial new insights. Maintaining a high level of participation of the chronically ill co-researchers also proved difficult.
conclusionsAdolescents with chronic conditions like to have a say in the design and evaluation of hospital services. But their participation as co-researchers demands ample resources from all parties involved without automatically improving research quality. PR does not seem the most effective and efficient way to make services more responsive. We therefore recommend further exploration of other creative and sustainable ways for involving youth in health-care service development and innovation.
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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.