ArticleResearch involvement and engagement2022
A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".
Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed, 10 citations in OpenAlex.
- "I felt as though my life had come to an end": lived experiences of adolescents and young adults with cancer in Nepal.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Article
- Involvement of underserved 18-40 year olds living with early-onset type 2 diabetes in the M3 NIHR programme grant.Research involvement and engagement · 2025Article
- Harnessing Social Media to Develop Conceptual Domains of Quality of Life for Adolescents With Advanced Cancer.Psycho-oncology · 2025Article
- Enhancing Research Involvement of Young People With Lived Expertise: Reflecting on Experiences in Digital Mental Health Research.Journal of medical Internet research · 2024Article
- Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.Current oncology (Toronto, Ont.) · 2024Article
- Utilizing User Preferences in Designing the AGILE (Accelerating Access to Gender-Based Violence Information and Services Leveraging on Technology Enhanced) Chatbot.International journal of environmental research and public health · 2023Article
- Beyond the Hospital: Understanding Psychosocial Support Uptake for Adolescents and Young Adults With Cancer in Community-Based and Nonprofit Programs.Cancer control : journal of the Moffitt Cancer CenterArticle
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundIncluding the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research. However, by including their lived experiences during multiple phases of research, the quality of the study improves and therefore also the healthcare and quality of life of this unique patient group. We first aimed to document experiences of AYAs and researchers with AYA involvement initiatives using the Involvement Matrix and the nine phases of the research cycle. Second, we aimed to map the (expected) challenges and recommendations, according to patients and researchers, for AYA involvement in each research phase.
methodsThirteen semi-structured qualitative interviews were conducted with AYAs and researchers from February 2020 to May 2020. A thematic analysis codebook with a critical realistic framework was used to analyze the data.
resultsAYAs and researchers were predominantly positive about AYA involvement within six of the nine phases of research: identify and prioritize topics, develop study design, disseminate information, implement, and evaluate findings. Not all respondents were positive about AYA involvement in the following three phases: formulate research questions, conduct research, and analysis and interpretation. However, few respondents had experience with AYA-researcher collaborations in multiple phases of the research cycle. Last, the results indicate the importance of adding a role (practical support) and two phases (grant application and recruitment) to the Involvement Matrix.
conclusionOur results show the added value of AYA (with a UPCP) involvement within scientific research projects. We recommend researchers to actively think about the level and phase of collaboration prior to each research project, by involving and brainstorming with AYAs at the conception and throughout research projects. Besides, to enhance fruitful participation, we suggest thoroughly discussing the pros and cons of collaboration for each phase together with AYAs via the proposed Involvement Matrix to support transparency. We recommend to report experiences, choices, and results of AYA involvement.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.