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The Capital Region of Denmark - a part of Copenhagen University Hospital
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Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer

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  1. The Needs and Care Experiences of Adolescents and Young Adults Treated for Cancer in Adult Surgery Clinics: A Qualitative Study

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  2. Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience

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  3. Facing the Maze: Young Cancer Survivors' Return to Education and Work-A Professional Expert Key Informant Study

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  4. "On Your Own": Adolescent and Young Adult Cancer Survivors' Experience of Managing Return to Secondary or Higher Education in Denmark

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  2. Clinicopathologic characteristics of Burkitt lymphoma of the head and neck in a non-endemic region-a Danish nationwide study

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

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Purpose: Service user involvement, which implies involvement in decision-making processes important for organizing, developing, and evaluating health care, is sparsely investigated from the perspective of adolescents and young adults (AYAs) with cancer. Thus, the purpose of this qualitative study was to investigate AYAs' reasons for participation in service user involvement initiatives during their cancer course. Methods: Data from 12 semistructured interviews with AYA cancer patients and AYA cancer survivors aged 16-29 years were analyzed using thematic analysis. The participants had been involved in one or more service user involvement initiatives in "Kræftværket," a youth support center and social organization for AYAs with cancer in Copenhagen, Denmark. Results: Four main themes with matching subthemes were identified: Community (Being together, Developing together, and In the same boat), Normality (A new normal and Something to do), Contribution (Something at heart, Support to other AYAs, and Improving the health care system), and Codetermination (Real participation and Influence on one's own everyday life). Conclusion: Participating in service user involvement initiatives had a positive impact on the illness course of AYAs with cancer as the participation recreated a feeling of normality, codetermination of one's own everyday life, and met a wish for altruism in terms of helping others.

Original languageEnglish
JournalJournal of Adolescent and Young Adult Oncology
Volume8
Issue number5
Pages (from-to)534-539
Number of pages6
ISSN2156-5333
DOIs
Publication statusPublished - 2019

ID: 58925797