"Meet us where we’re at": towards engaging and inclusive research with young adults with a lived experience of cancer
"Meet us where we’re at": towards engaging and inclusive research with young adults with a lived experience of cancer
Background/Objective: meaningful engagement with young adults (YAs) with a lived experience of cancer is important for conducting impactful research on issues that matter to them, and ensures their voices are central to shaping cancer research outcomes. This preliminary study explored barriers and facilitators to participation in research, to identify strategies for making cancer research more inclusive and responsive to the needs of YAs.
Methods: this qualitative study involved twelve YAs (aged 21-43 years at time of interview) with a lived experience of cancer who participated in a focus group or interview. Participants were recruited via multiple cancer charities/organisations and social media platforms. Data were analysed using thematic analysis.
Results: barriers to research participation were Person Specific (health and wellbeing, logistical and practical challenges, knowledge, understanding and confidence) and Systemic (lack of advocacy, social and cultural influences). A multi-pronged approach to engage YAs in cancer research should include framing research to make it more relatable, using accessible language, and showcasing its potential value and impact. Incentivising participation and offering flexible engagement formats, (e.g., online surveys and videos), to meet individuals where they are, can aid participation. Collaboration with trusted organisations, ensuring diverse representation in recruitment materials, and using social media platforms were recognised as effective ways to reach a broader audience and ensure inclusivity.
Conclusions: we provide practical strategies on how to implement these approaches. From a researcher perspective, early consideration of funding allocation (e.g., dedicated person for social media engagement, time of Patient and Public Involvement) is key to support these strategies and enhance engagement.
cancer research, young adults, research participation, inclusivity, diversity
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Bolliger, Celine
aa0400ef-2c4e-4e3d-9051-b588003b7467
Efremov, Kirsten
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Dawes, Peter
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Obiokafor, Sonia
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Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Sodergren, Samantha
d66fc3fa-2c98-403d-8ae5-410ef95de46e
16 July 2025
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Bolliger, Celine
aa0400ef-2c4e-4e3d-9051-b588003b7467
Efremov, Kirsten
e5c3c3d3-be95-4d2d-9281-7d0c7ed4d75c
Dawes, Peter
a2f834fb-c066-4472-991b-841ba145da32
Obiokafor, Sonia
7a711410-5bb6-4e66-a96c-bf1d952df0c7
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Sodergren, Samantha
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Collaco, Nicole, Bolliger, Celine, Efremov, Kirsten, Dawes, Peter, Obiokafor, Sonia, Darlington, Anne-Sophie and Sodergren, Samantha
(2025)
"Meet us where we’re at": towards engaging and inclusive research with young adults with a lived experience of cancer.
Journal of Clinical and Translational Science, [JCTS-2025-0033].
(doi:10.1017/cts.2025.10101).
Abstract
Background/Objective: meaningful engagement with young adults (YAs) with a lived experience of cancer is important for conducting impactful research on issues that matter to them, and ensures their voices are central to shaping cancer research outcomes. This preliminary study explored barriers and facilitators to participation in research, to identify strategies for making cancer research more inclusive and responsive to the needs of YAs.
Methods: this qualitative study involved twelve YAs (aged 21-43 years at time of interview) with a lived experience of cancer who participated in a focus group or interview. Participants were recruited via multiple cancer charities/organisations and social media platforms. Data were analysed using thematic analysis.
Results: barriers to research participation were Person Specific (health and wellbeing, logistical and practical challenges, knowledge, understanding and confidence) and Systemic (lack of advocacy, social and cultural influences). A multi-pronged approach to engage YAs in cancer research should include framing research to make it more relatable, using accessible language, and showcasing its potential value and impact. Incentivising participation and offering flexible engagement formats, (e.g., online surveys and videos), to meet individuals where they are, can aid participation. Collaboration with trusted organisations, ensuring diverse representation in recruitment materials, and using social media platforms were recognised as effective ways to reach a broader audience and ensure inclusivity.
Conclusions: we provide practical strategies on how to implement these approaches. From a researcher perspective, early consideration of funding allocation (e.g., dedicated person for social media engagement, time of Patient and Public Involvement) is key to support these strategies and enhance engagement.
Text
Revised version 24-04-25_Accepted 10-07-25
- Accepted Manuscript
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meet-us-where-were-at-towards-engaging-and-inclusive-research-with-young-adults-with-a-lived-experience-of-cancer
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Accepted/In Press date: 10 July 2025
Published date: 16 July 2025
Keywords:
cancer research, young adults, research participation, inclusivity, diversity
Identifiers
Local EPrints ID: 504325
URI: http://eprints.soton.ac.uk/id/eprint/504325
PURE UUID: 82ff36e9-5977-4334-a01f-b3bd01da3860
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Date deposited: 04 Sep 2025 16:42
Last modified: 05 Sep 2025 01:45
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Contributors
Author:
Celine Bolliger
Author:
Kirsten Efremov
Author:
Peter Dawes
Author:
Sonia Obiokafor
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