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

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.

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

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.

Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer.

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.