Abstracts
Abstract
Background: Patients can be valuable contributors to medical education, offering nuanced perspective and guidance, based on lived experience. While numerous training programs have integrated adult patients in this manner, very few have engaged adolescent patients. Recognizing adolescent educators may be particularly helpful in teaching pediatric conditions, this study appraises the potential for including those with juvenile arthritis in pediatric rheumatology training.
Methods: Using an exploratory qualitative approach, we conducted semi-structured interviews with adolescents with juvenile arthritis receiving treatment at two tertiary-care pediatric centres in Canada about the motivations, perceptions, facilitators, and barriers that influence their engagement as patient educators. The interview transcripts were analyzed using an iterative qualitative descriptive method.
Results: Participants (n = 19, aged 13-18) identified intrinsic factors, such as learning about their condition and socializing with peers, and extrinsic factors, such as helping students learn and promoting greater disease awareness, as relevant drivers for participating as patient educators. They pointed to balancing school and medical appointments, transportation, and discomfort with sharing personal experiences in large groups as barriers. Parental support, accruing volunteer hours, and engaging health professionals in the teaching sessions were seen as facilitators that could meaningfully enhance the relevance and impact of adolescents’ contributions to medical education.
Conclusion: Adolescents with juvenile arthritis are motivated to participate as patient educators. Understanding the factors that promote their involvement supports the development of training initiatives involving adolescents that are likely to be successful and sustainable.
Résumé
Contexte : Les patients peuvent apporter une contribution précieuse à la formation médicale, en offrant une perspective nuancée et des conseils fondés sur leur expérience vécue. Si de nombreux programmes de formation ont intégré des patients adultes de cette manière, très peu ont fait appel à des patients adolescents. Reconnaissant que les adolescents éducateurs peuvent être particulièrement utiles pour enseigner les pathologies pédiatriques, cette étude évalue le potentiel d’inclure des adolescents atteints d’arthrite juvénile dans la formation en rhumatologie pédiatrique.
Méthodes : À l’aide d’une approche qualitative exploratoire, nous avons mené des entretiens semi-structurés auprès d’adolescents atteints d’arthrite juvénile et suivis dans deux centres pédiatriques de soins tertiaires au Canada, afin d’évaluer les motivations, les perceptions, les facteurs facilitants et les obstacles qui influencent leur engagement en tant que patients-éducateurs. Les transcriptions des entretiens ont été analysées à l’aide d’une méthode descriptive qualitative itérative.
Résultats : Les participants (n = 19, âgés de 13 à 18 ans) ont identifié des facteurs intrinsèques, tels que l’apprentissage de leur pathologie et la socialisation avec leurs pairs, ainsi que des facteurs extrinsèques, tels que le fait d’aider les étudiants à apprendre et de promouvoir une meilleure sensibilisation à la maladie, comme des motivations pertinentes pour participer en tant que patients-éducateurs. Ils ont cité comme obstacles la conciliation entre l’école et les rendez-vous médicaux, les problèmes de transport et la gêne liée au partage d’expériences personnelles au sein de grands groupes. Le soutien parental, l’accumulation d’heures de bénévolat et l’implication de professionnels de santé dans les séances pédagogiques ont été considérés comme des facteurs facilitants susceptibles d’améliorer de manière significative la pertinence et l’impact de la contribution des adolescents à la formation médicale.
Conclusion : Les adolescents atteints d’arthrite juvénile sont motivés à participer en tant que patients-éducateurs. La compréhension des facteurs favorisant leur implication contribue à l’élaboration d’initiatives de formation impliquant des adolescents, qui ont de bonnes chances d’être couronnées de succès et durables.
Appendices
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