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

VWG Burgers*, A Dickhout, NCGL Harthoorn, SAMM Frissen, MJ Noordhoek, SA Franssen, MJP Reuvers, WTA van der Graaf, O Husson

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)
33 Downloads (Pure)


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.

Materials and Methods
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.
Original languageEnglish
Pages (from-to)961-968
Number of pages8
JournalActa Oncologica
Issue number8
Early online date28 Jul 2023
Publication statusPublished - 1 Aug 2023

Bibliographical note

Funding Information:
OH and VWGB are supported by a grant from the Netherlands Organization for Scientific Research [grant number VIDI198.007]. The authors thank CT, EU, FD, FG, FL, IP, ND for their active contribution as research partner or co-thinker in this study.

Publisher Copyright:
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.


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