Involving adolescents and young adults (AYA) with an uncertain or poor cancer prognosis as research partners

• Published in: Acta oncologica Vol. ahead-of-print; no. ahead-of-print; pp. 1 - 8
• Main Authors: Burgers, Vivian W. G., Dickhout, Annemiek, Harthoorn, Niels C. G. L., Frissen, Simone A. M. M., Noordhoek, Marloes J., Franssen, Suzanne A., Reuvers, Milou J. P., van der Graaf, Winette T. A., Husson, Olga
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis 03.08.2023
• Subjects: Adolescents and young adults; advanced cancer; patient involvement; qualitative research; research partners; advanced cancer; qualitative research; Adolescents and young adults; patient involvement; research partners
• ISSN: 0284-186X; 1651-226X
• DOI: 10.1080/0284186X.2023.2238554

The interest in patient involvement is increasing in health research, however, is not yet well described in adolescents and young adults (AYA) with palliative cancer, such as AYAs with an uncertain and/or poor cancer prognosis (UPCP). This study aimed to document the process of involving AYAs with a UPCP as partners in research including their experiences, the impact, and our lessons learned. AYAs with a UPCP were recruited via healthcare professionals and patients to involve as research partners in the qualitative interview study. To define their role and tasks in each research phase we used the participation matrix. In total six AYAs with a UPCP were involved as research partners and five as co-thinkers. They were involved in initiating topics, developing study design, interviewing, analyzing data, and dissemination of information. Together with the researcher, they co-produced the information letters and interview guides and implemented aftercare and extra support. The research partners ensured that the data was relevant, correctly interpreted and that results were translated to peers and clinical practice. AYAs themselves felt useful, found people who understand their challenges, and were able to create a legacy. The benefits of involving AYAs with a UPCP as research partners cannot be stressed enough, both for the study as well as for the AYAs themselves, but there are challenges. Researchers should anticipate and address those challenges during the planning phase of the study. This article provides practical tips on how to do so.