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The Capital Region of Denmark - a part of Copenhagen University Hospital
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Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience

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DOI

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  3. Electronic reporting of patient-reported outcomes in a fragile and comorbid population during cancer therapy - a feasibility study

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  4. Telemedicine and e-Health Solutions for COVID-19: Patients' Perspective

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  5. Electronic symptom monitoring in patients with metastatic lung cancer: a feasibility study

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Purpose: Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kræftværket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.

Original languageEnglish
JournalJournal of Adolescent and Young Adult Oncology
Volume9
Issue number1
Pages (from-to)78-84
Number of pages7
ISSN2156-5333
DOIs
Publication statusPublished - Feb 2020

    Research areas

  • everyday life, impact, involvement, participation, service user, thematic analysis

ID: 58925591