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The Capital Region of Denmark - a part of Copenhagen University Hospital
E-pub ahead of print

Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective

Research output: Contribution to journalJournal articleResearchpeer-review

DOI

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  3. The risk of late effects following pediatric and adult radiotherapy regimens in Hodgkin lymphoma

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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.

Original languageEnglish
JournalInternational Journal of Adolescent Medicine and Health
Pages (from-to)e-pub
ISSN0334-0139
DOIs
Publication statusE-pub ahead of print - 2021

    Research areas

  • AYA, cancer, co-creation, participation, service user involvement

ID: 60921223