Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective
-
Signe Hanghøj
, Helle Pappot
, Lisa Lyngsie Hjalgrim , Maiken Hjerming , Camilla Louise Visler und Kirsten A. Boisen
Abstract
Background
Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs.
Objectives
To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals.
Methods
Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16–29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis.
Results
We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions.
Conclusions
This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects.
Funding source: Børnecancerfonden
Award Identifier / Grant number: 2017-2053
Funding source: Gentofte Hospital, Denmark
Funding source: Rigshospitalet, Denmark
Acknowledgments
Thanks to all the participants in the study for their time and willingness to participate, and to the Danish Child Cancer Foundation for funding the project (grant 2017-2053).
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Competing interests: The authors declare that there is no conflict of interest.
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Supplementary Material
The online version of this article offers supplementary material (https://doi.org/10.1515/j_ijamh-2019-0253).
© 2020 Walter de Gruyter GmbH, Berlin/Boston
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- Reviews
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- Menstrual distress in females of reproductive age: a literature review
- Research Article
- Correlates of food intake and mealtime behaviors among Kuwaiti adolescents
- Original Articles
- Association of overweight, obesity and insufficient sleep duration and related lifestyle factors among school children and adolescents
- Encouraging physical fitness in Brazilian adolescents with excess weight: can they outperform their eutrophic peers in some activities?
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- Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective
- “I think meningitis is a virus, while septicaemia might be caused by bacteria.” A study of vaccination views, disease awareness and MenACWY and MMR uptake among freshers at a London university
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