Dataset Information

Adolescents' experiences with patient engagement in respiratory medicine.

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.

SUBMITTER: Groot B

PROVIDER: S-EPMC7756216 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

Adolescents' experiences with patient engagement in respiratory medicine.

Groot Barbara B Dedding Christine C Slob Elise E Maitland Henriette H Teunissen Truus T Rutjes Niels N Vijverberg Susanne S

Pediatric pulmonology 20201109 1

<h4>Objective</h4>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.<h4>Methods</h4>A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a te ...[more]

PMID: 33124758

Similar Datasets

Project description:ContextImplicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices.ObjectiveThis study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE).DesignA scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O'Malley.Data collectionA search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisArticles included were charted for general information. All "results" sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles.ResultsThe search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers.ConclusionThis scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers' discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.

Dataset Information

Adolescents' experiences with patient engagement in respiratory medicine.

Objective

Methods

Results

Conclusions

Publications

Adolescents' experiences with patient engagement in respiratory medicine.

Similar Datasets

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