Introduction
A cancer diagnosis is challenging at any age, but for adolescents and young adults (AYAs), defined as those aged 15–39 years at diagnosis [Reference Albritton, Caligiuri and Anderson1]; cancer disrupts significant milestones/life transitions. These include building a career, gaining (financial) independence, forming relationships, starting a family, and developing a sense of self, including sexual and personal identity [Reference Close, Dreyzin, Miller, Seynnaeve and Rapkin2,Reference Coccia3]. AYAs also face distinct biological and systemic obstacles, including more aggressive cancers [Reference Keegan, Bleyer, Rosenberg, Li and Goldfarb4,Reference Bleyer, Barr and Hayes-Lattin5], delays in diagnosis due to low cancer suspicion, limited clinical trial access, care inequalities, poorer treatment adherence, and lack of policy attention [Reference Barr, Ferrari, Ries, Whelan and Bleyer6].
To improve outcomes for AYAs with cancer, it is essential to better understand and address their needs and concerns during and beyond treatment through research, which can, in turn, inform age-appropriate healthcare and support. “Health research” refers to research aimed at improving health outcomes, experiences, and services which extends beyond clinical trials to include qualitative and mixed methods studies. While AYAs have long been acknowledged as playing an important role as participants in health research, their potential as active research contributors and collaborators has also been recognized to optimize research quality in terms of design, delivery and dissemination [Reference Heggie, Kisby, Day and Phillips7,Reference McLaughlin8].
Despite the acknowledgment of the importance of their involvement, AYAs remain under involved in health research [Reference Wilson, Daxenberger and Dieudonne9]. In particular, the issue of diversity and achieving meaningful representation of individuals from minority groups (ethnicity, sexual orientation and gender identity, disability, socio-economic status) remain challenging [Reference L’Hôte and Couespel10,Reference Taylor, Whelan and Gibson11]. Achieving greater diversity in health research is important to understand and address health inequities [12,Reference Cacari-Stone, Wallerstein, Garcia and Minkler13]. It is acknowledged that such individuals are seldom included in research due to the exclusionary models of research design and delivery [Reference Anderson, Brading and Swaithes14]. Other common barriers include lack of awareness about research opportunities, difficult-to-understand terminology used to explain studies and clinical trials, lack of trust in how their data will be used, largely due to poor communication, structural issues such as parental consent requirements and financial instability [Reference L’Hôte and Couespel10,Reference Abrahão, Alvarez and Waters15,Reference Siembida, Loomans-Kropp and Trivedi16]. Researchers also face challenges developing sustainable, trusting relationships, particularly with underserved communities, where building such connection requires considerable time and resources [Reference (NIHR)17].
A growing body of literature provides suggestions for improving AYA participation in cancer research. These include better communication about the trial/study, flexible research methods, streamlined ethical processes, education of clinicians to better communicate trials to AYAs, promoting diversity in research team composition, using social media, building trust and ensuring that AYAs feel supported, listened to and valued [Reference L’Hôte and Couespel10,Reference Cacari-Stone, Wallerstein, Garcia and Minkler13–Reference Abrahão, Alvarez and Waters15,Reference Oveisi, Cheng and Taylor18]. Whilst these strategies outline what is important, there is limited guidance on how researchers can practically implement them at different stages of the research process. This gap in actionable guidance leaves researchers unsupported to do so.
This current preliminary, exploratory study builds on existing evidence and aims to further explore the barriers to engaging AYAs with lived experience of cancer in research, particularly those from underrepresented backgrounds, and provides recommendations on how best to improve recruitment of AYAs in cancer research. Unlike previous studies, which have primarily focused on barriers to participation in clinical trials or provided broad, high-level recommendations, our research aims to explore engagement across a wider range of research contexts. Importantly, we will offer practical guidance on how researchers can improve inclusivity throughout the research process. Co-designed with the target population, these solutions can serve as a foundation that researchers can build upon to inform more impactful research practices that genuinely reflect their needs and priorities.
Methods
The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [Reference Tong, Sainsbury and Craig19] were followed in reporting the study findings (Supplementary file 1).
Study design
This exploratory qualitative study employed a focus group methodology to foster interactive discussions and elicit diverse perspectives on shared experiences [Reference Finch, Lewis and Turley20]. This study was conducted between January and August 2024. Two young people with lived experience of cancer (KE, PD) formed part of the research team and provided strategic advice, including input on the topic guide and patient information materials.
Participants and recruitment
Inclusion criteria for this study were AYAs aged 16 and 39 years old at the time of their initial cancer diagnosis. We aimed to recruit up to 15 participants, attempting for varied representation from varied backgrounds (e.g., ethnicity, disability, sexual orientation, socioeconomic status), as well as age and sex. The inclusion criteria were deliberately broad to ensure accessibility to a wide range of participants. Although we sought diversity, we did not adopt a fixed quota for specific demographics, our objective was to be inclusive in our recruitment strategy with the only inclusion criteria being age range and a diagnosis of cancer. Recruitment utilized a combination of purposive, snowball and convenience sampling and was conducted through a multi-pronged approach aimed at reaching young people across various settings:
To reach a broad and diverse group of participants, we utilized multiple platforms and contacted 18 cancer charities/foundations supporting young people with cancer, covering different cancer types as well as those specifically supporting people from underserved groups. We collaborated with Shine Cancer Support, Black Women Rising and the Surrey Minority Ethnic Forum to disseminate study information through their existing networks, including multiple social media platforms; their closed Facebook groups, newsletters, and WhatsApp groups. Study information was also shared on the research group’s social media platform “X,” using relevant hashtags. Maggie’s Centre in University Hospital Southampton also displayed posters in their facility. Recruitment posters were displayed in locations frequented by young people, including university campus, cafes, and community centers.
Interested participants were invited to contact the researchers and were sent an information sheet. Researchers (NC and SS) conducted a short introductory call with each participant providing an opportunity to get to know participants, discuss the background to the research and answer any questions before deciding to give their consent to participate.
Ethical considerations
Ethical approval for this study was obtained from the University of Southampton (ERGO 90913). All participants provided informed consent prior to participation through recorded video consent. To ensure confidentiality, all data were anonymized, and participants were assigned unique identification numbers.
Data collection
Four focus groups were conducted with group sizes ranging from 3 to 5 participants: one in person and three online using Microsoft Teams. One online interview was conducted with a participant who was unable to attend the focus groups. Focus groups were facilitated by NC and SS who are trained female researchers with extensive experience in qualitative methods and working with young people with cancer. They had no prior relationship with the study participants but have an interest in supporting young people with cancer. A semi-structured interview guide was developed and reviewed by the research panel, of which two members have a lived experience of cancer. The interview guide (Supplementary file 2), covered topics such as: personal experiences of barriers to engagement in research, and what was missing from current research practices for inclusive research. For many, this was their first research experience, ensuring perspectives beyond those frequently involved/familiar in/with research. Focus groups lasted approximately two hours and were video-recorded using Microsoft Teams with participant consent. Field notes were written during the focus groups/interview to aid the analysis process and supplement the Microsoft Teams transcription. NC verified transcripts for accuracy. Participants were asked to complete an online demographics form.
Data analysis
Video recordings were transcribed verbatim. Data were analyzed using thematic analysis [Reference Clarke and Braun21], following a six-step process of familiarization, code generation, theme development, theme review, theme definition, and report writing. Initial codes were generated, and coded data were read independently by the researchers (NC and SS). Data were then grouped into higher order themes, by identifying patterns, synthesizing codes that overlapped and separating out distinct codes. The coded data were collated and organized into themes through research team discussions, allowing refinement and review. Microsoft Word and Excel were used to manage the data. To enhance the accessibility and impact of the findings, a digital illustrator was commissioned to create visuals representing the key themes and insights emerging from the focus group discussions, working closely with the lead researchers to accurately reflect the experiences of the participants (See Figure 1). While data saturation was not the primary focus of this exploratory study, limitations of time and resources meant that we were guided by the principle of information power [Reference Malterud, Siersma and Guassora22] to support our decision to close recruitment.
Digital illustration representing the key themes and insights emerging from the focus group discussions on how we can better engage young adults (YAs) with cancer in research.
Results
Twelve participants took part in this study. While seventeen individuals initially expressed interest, one was ineligible due to being under the age of 16 years at cancer diagnosis, and four did not respond after receiving study information. Participant characteristics are detailed in Table 1. In summary, the sample consisted of 11 females and 1 male, aged between 18 and 38 years at time of diagnosis, and 20 and 44 years at time of participation, representing a range of cancer types, treatment statuses (7 on treatment, 5 who had completed treatment) and disability status (n = 4). Participants also varied in ethnicity, with the majority being White (66.7%), alongside Black, Caribbean or African (16.7%), Bangladeshi (8.3%) and mixed or multiple ethnic groups (8.3%).
Characteristics of participants
The focus groups/interview explored three key areas: (i) barriers to research participation, (ii) strategies for engagement in research, and (iii) methods for ensuring inclusivity and engagement of individuals from diverse backgrounds. The participants from hereon will be referred to as YAs given their age at participation falling within the young adulthood part of the AYA definition.
Please see Figure 2 for barriers and strategies to engaging YAs in research.
Barriers and strategies to engaging young adults (YAs) with a lived experience of cancer in research.
What are the barriers to engaging young adults in research?
Person specific barriers
Person specific barriers related to individual health, emotional state, and personal circumstances that hindered participation in research.
Health and well-being status
Health and well-being of individuals were an important factor for YAs considering research participation. Managing cancer treatment and its side effects could make participation in research a lower priority: “you’re just so busy with all of the treatment and the appointments…obviously you need to prioritize that […] the medication makes you too weak or tired all the time.” [FG4PM01-female, diagnosis age 38, participating age 43]. The emotional toll of having/had cancer also posed barriers, with some feeling it’s an unwelcome reminder of their cancer experience: “I kind of slowly joined one early stage breast cancer group…that took me like a good six months to kind of actually join those because it’s just too much” [FG2P2-female, diagnosis age 20, participating age 21].
Practical and logistical challenges
The demands and responsibilities placed upon YAs coupled with their current health status was also recognized as creating practical and logistical issues which made research participation problematic.
Time constraints, particularly balancing treatment with work, studies or family care could limit availability for research participation:“[…] the barrier would have been time […] if you’re working, if you’ve got kids…if you’re living with parents…” [FG104-female, diagnosis age 37, participating age 38]. Financial concerns, especially for those balancing illness and work also deterred participation: “participating in research… it’s a non-essential thing… if you’re off sick, and you’re only entitled to a certain amount of full sick pay… if you’re expected to travel to attend something [research activity] in person, that might mean that you’re losing out on a day’s pay, …any incentive you might be able to give might not make up for that” [FG4PM01-female, diagnosis age 38, participating age 43]. Geographic and socioeconomic disparities further exacerbate accessibility issues: “[…] we don’t really get opportunities like this unless we see it on social media. Your financial status might not make it possible to be involved as well” [FG2P2-female, diagnosis age 20, participating age 21].
Knowledge, understanding and confidence
A lack of awareness and misconceptions about research, it’s importance and the process may deter engagement: “A lot of it is you have to advocate for yourself… if people don’t know that there is such things as studies and research” [FG101-female, diagnosis age 39, participating age 44]. A lack of foundational knowledge of what research is could lead to misconceptions and apprehension. Participants voiced concerns such as, “the word research just screams papers and academic” [FG4PM02-male, diagnosis age 18, participating age 28] and, “Depending on your background… people wouldn’t understand what research is apart from my peers that have been to university… Do they know how they can engage with it? Is it to scientific for me? Is it too intelligent for me? Is it a place where I belong?” [FG103-female, diagnosis age 33, participating age 33].
Some lacked the confidence to contribute to research: “I wouldn’t have felt confident to go into a research setting and kind of like share/ think that my opinions are kind of worth listening to…” [FG104-female, diagnosis age 37, participating age 38]. Additionally, a lack of clarity regarding the benefits and purpose of research could hinder involvement: “There’s no guarantee of any concrete change as a result of what we say… I do not know how much visibility that people always have in studies about kind of what actually practically changes after” [FG4PM03-female, diagnosis age 26, participating age 28].
Systemic barriers
Systemic barriers related to the healthcare and research systems, as well as family and societal influences.
Lack of advocacy
Inconsistencies in healthcare professionals’ support for research complicated research engagement: “I hear vast differences… between different specialists as to whether they actually promote the research to the patients or not” [FG101-female, diagnosis age 39, participating age 44]. This uncertainty was compounded by past experiences of being unheard during their cancer journey: “… It’s not going to change […] if they weren’t listened to through their cancer journey, what’s going to be the difference now in research?” [FG3AM01-female, diagnosis age 36, participating age 37].
Social and cultural influences
In some cases, participants perceived limited encouragement to engage in research in their healthcare journey. Parental protective instincts also acted as a barrier to participation. This challenge could be magnified by a lack of understanding about the research process within some communities: “[…] Coming from a very, very much working class…would you feel comfortable in a group of your friends saying oh I’m going to get involved in some research?… Is that gonna be accepted? It’s not really the norm, well not seen as normal in certain communities… it’s really difficult to challenge social norms… it’s very easy to kind of just follow the crowd” [FG103-female, diagnosis age 33, participating age 33]. Perceptions of research as overly burdensome, elitist, or irrelevant to their lives could deter potential participants.
Social stigma around young people with cancer could discourage participation: “There is a social stigma around having cancer as a young person…and people lose a lot of friends… people do not want to talk about it because a lot of people just want to get that chapter of their lives over and done with” [FG3AM01-female, diagnosis age 36, participating age 37].
How can we engage young people in research?
Reframing research: making it relatable and approachable
Accessible language/humanizing research
Participants emphasized the importance of using simple, relatable language and imagery to make it more approachable. As one participant stated, “Changing it from calling it “research” to “knowledge bringing, experience gathering”… people see ‘research’ and think, oh, they’re going to be in a lab coat and I’m going to get poked and prodded. it is very much about the language” [FG3AM01-female, diagnosis age 36, participating age 37].
Communicating value and potential impact/benefit
Participants highlighted the need to understand the personal relevance of research. Framing the benefits of taking part in ways that resonate with long term outcomes such as helping others in the future, and also immediate needs, such as how participants can benefit now: “highlighting the benefits…say “your child might meet some like-minded people, it may help them come to terms with their situation, give them some purpose.” So that kind of changing it instead of “oh, your child’s Guinea pig.” Like this will benefit your child. Rather than, this will benefit us” [FG2P1-female, diagnosis age 23, participating age 23].
In addition, sharing previous research results and demonstrating impact through relatable narratives and lived experiences can be particularly powerful. Participants recommended incorporating “quotes from people or like real people or even like pictures and videos” to illustrate the personal side of research and create a sense of connection [FG3AM02-female, diagnosis age 33, participating age 36]. Sharing stories of how research has led to tangible changes, such as the development of support programs or resources for specific cancer types, can increase engagement in research.
Incentivising participation
The use of personalized, meaningful incentives was reported as important. While some participants might be motivated by the opportunity to contribute to meaningful research, others may respond more positively to tangible rewards such as vouchers or giveaways: “Some people are motivated by freebies or things like Amazon vouchers; those things may well help motivate some people” [FG4PM01-female, diagnosis age 38, participating age 43]. To avoid incentives that could lead to tokenistic engagement, participants reinforced that the focus should be on fostering meaningful involvement and ensuring young people feel valued for their contribution beyond any rewards.
Flexible engagement formats
Meet people where they are
Participants reported the importance of offering flexible formats to suit diverse preferences, such as online surveys, video calls/formats and social media. Flexibility in location and format acknowledges that in person participation may not always be feasible or preferable. Virtual environments like the metaverse could also provide a comfortable space for those apprehensive about traditional research settings. Researchers should meet participants where they are: “tap into where [people] are engaged and then bring the research to them,” integrating opportunities within existing platforms (e.g. social media, TikTok and Instagram) and activities favored by young people” [FG103-female, diagnosis age 33, participating age 33]. This may involve meeting participants within their existing routines and environments, such as offering research participation opportunities within hospitals or treatment centers. Incorporating research into user friendly apps, gamification or providing supportive elements like snacks can make participation more accessible and engaging.
Creating a supportive environment: building comfort and trust
A comfortable and supportive environment is essential for fostering positive participation experiences. This includes providing clear introductory information, and easing participants into the research process, through for example, an introductory call: “I think definitely I would have felt a lot more nervous today if we haven’t had that introductory call. Yeah, so some kind of like instructive video at the very least. Yeah, just so you can see a face.” [FG2P1-female, diagnosis age 23, participating age 23].
Engaging through trusted channels and influencers: Right entry points
Collaborating with trusted organizations
Participants noted key entry points to engage YAs with a lived experience of cancer in research, including using trusted sources and platforms and collaborating with trusted organizations already embedded within the AYA community. Charities like Shine and Black Women’s Rising were viewed as particularly key, offering a pre-existing level of credibility and trust that could encourage research participation: “Anytime I’m going to see anything research related to cancer, I always find it helpful to see it on trusted groups… If I see it there, then it’s more likely that I’m going to take part” [FG4PM02-male, diagnosis age 18, participating age 28].
Healthcare professionals
Healthcare professionals, particularly doctors and specialist nurses, were identified as essential for research engagement. Information delivered directly from these trusted people carried significant weight: “Hearing it from my doctor… I would just do whatever they told me… If they’re saying to me, “we’ve got this research project that might be helpful,” I would have 100% signed up” [FG102-female, diagnosis age 34, participating age 42]. The existing rapport and trust within these relationships provide a natural avenue for introducing research opportunities in a sensitive and approachable manner.
Empowering “Young Champions” to promote research
The concept of “Young Champions” was identified as an effective strategy for promoting research participation. YAs are more likely to get involved in research when they hear about it from other YAs who have had similar experiences. Participants viewed this as a powerful way to connect authentically and build trust: “If you want to get young people involved, use young people to champion it… you know, people can relate to and they see people or say they we see people that look like us and represent us… that would be championing and raising awareness of it [research]” [FG103-female, diagnosis age 33, participating age 33].
Social media platforms
Participants highlighted the significant role of social media, particularly Instagram, in connecting with and informing individuals about cancer.” Cancer influencers” who share their personal journeys online was identified as a powerful tool for both information dissemination and emotional support: “Finding someone who’s walking a similar path to you is so beneficial” [FG3AM02-female, diagnosis age 33, participating age 36].
Furthermore, participants reported the effectiveness of visual communication across social media platforms. Videos, in particular were viewed to offer versatility for dissemination and can resonate with diverse audiences, including those for whom English is not their first language [FG3AM01-female, diagnosis age 36, participating age 37]. The idea of collaborating with young social media influencers, particularly those with cancer-related experiences, could be approached to reach the target audience more effectively.
How can we engage young people from diverse backgrounds or make research inclusive?
Creating partnerships for inclusive research
To effectively engage YAs with lived experience of cancer in research, participants highlighted the importance of building relationships with trusted cancer charities/organizations: “these groups already have trust and access within these communities,” making them “valuable partners” who can facilitate outreach [FG4PM01-female, diagnosis age 38, participating age 43]. Placing messaging about research studies in familiar spaces frequented by young people and collaborating with community leaders who represented diversity in ethnic and minority groups were viewed as effective ways to reach a broader audience. For instance, one participant suggested that “translating our stuff and leaving it with the local community leaders is really helpful” [FG3AM01-female, diagnosis age 36, participating age 37]. Showcasing past successes and the value of research was seen as essential for securing buy-in from potential partners. Successful engagement with existing networks that engage with YAs impacted by cancer was recognized as beneficial; “Partner with people already doing this work… there’s strength in numbers” [FG4PM01-female, diagnosis age 38, participating age 43]. This collaborative approach was viewed as essential: “sometimes things are inaccessible because we’re trying to do them alone.” [FG4PM01-female, diagnosis age 38, participating age 43].
Ensuring diverse representation in recruitment materials and discussions
Participants reported the need for inclusivity throughout the research process. This includes ensuring research materials feature diverse voices and experiences and actively involving individuals from a wide range of backgrounds: “try and have the people that you are asking to get involved… from as much a diverse background as you can” [FG3AM02-female, diagnosis age 33, participating age 36]. This emphasis on representation extends to the communication and dissemination of research findings. Another participant highlighted the value of providing information in accessible formats, such as videos, and ensuring materials resonate with the target audience’s preferred learning style: “I think the visual platform is the best way whether it is video, audio, whether it’s simple infographic, I think it’s a really good way of trying to engage with people. […] I think that demographic are far more interested in visual stimulation than they are reading [FG3AM01-female, diagnosis age 36, participating age 37]. Furthermore, the use of interpreters, including British Sign Language interpreters, was identified as crucial for ensuring equitable access to research opportunities.
Individuals are more likely to engage when they see themselves reflected in outreach efforts, such as relatable figures who share similar backgrounds and experiences: “You need someone who looks like you and is similar to you” [FG3MA02-female, diagnosis age 33, participating age 36]. This idea of relatability goes beyond appearances to include shared experiences and social identities. For example, involving individuals from specific communities, and using their language skills to connect with their peers within their communities/background was seen as particularly powerful: “[…] If you have someone who speaks your language and is not from the UK, who can talk to their community. Then that is really powerful, and that’s something quite simple. [FG4PM02- male, diagnosis age 18, participating age 28]. Participants also suggested framing research invitations to highlight the value of individual experiences and perspectives, rather than just focusing on “diverse” groups.
Discussion
This study builds on the existing research on barriers and facilitators to research participation for AYAs with a lived experience of cancer. We also sought to identify strategies for making cancer research more inclusive and responsive to their diverse needs. Our participants represented a range of experiences and backgrounds, including many who had not been previously exposed to research opportunities. Our findings revealed a range of barriers to their engagement in research, including current health related issues and emotional toll of cancer, practical and logistical constraints (time, finances, location), knowledge, understanding and confidence in and or engaging in research, and systemic issues related to social and cultural stigma and influence of healthcare professionals and parents on participation in research. These findings echo other studies which report on similar barriers to research participation in clinical trials [Reference Wang, Schweitzer, Hernandez, Molina and Keegan24–Reference Fern and Taylor27]. However, our study adds new insights, including the emotional burden of cancer and treatment, which makes participation feel like an unwelcome reminder, as well as the importance of timing of participation which can impact willingness depending on treatment stage and emotional readiness. A lack of confidence in taking part in research was also a significant deterrent. Additionally, social stigma, particularly in certain communities where having cancer as a young person is taboo or research involvement is not considered acceptable/normal, further discourages participation. This barrier is not fully addressed in existing research on AYAs with cancer, although it has been noted in broader literature in adults [Reference Mitchell, Bragg and Moldovan28]. The unique developmental and social challenges faced by YAs can amplify the impact of this stigma making it particularly important. Understanding and addressing these barriers requires a multi-faceted approach that meets practical needs, builds trust in the research process, develops relationships with the right people, and ensures equitable access to research opportunities.
In terms of strategies for improving engagement, participants suggested that dispelling myths about research and making it more accessible could help overcome barriers. Using clear, relatable language and pitching research appropriately aligns with previous research [Reference Taylor, Whelan and Gibson11,Reference Gafari, Bahrami-Hessari and Norton29], highlighting the importance of involving young people early in co-producing research activities to ensure relevance, relatability and accessibility. Offering recruitment materials in multiple formats, languages and showcasing diversity of people in recruitment materials has been previously reported to bridge gaps in understanding and engagement, particularly for ethnic minority communities [Reference Gafari, Bahrami-Hessari and Norton29]. Participants also emphasized the importance of flexible formats to engage, such as online surveys, utilizing visuals (infographics) and using social media. This recommendation is consistent with the growing body of evidence supporting the use of digital/social media platforms to improve access to research, particularly for younger populations [Reference Wang, Schweitzer, Hernandez, Molina and Keegan24,Reference Fern and Taylor27,Reference Whittaker, Dean and Veiga30,Reference Gorman, Roberts, Dominick, Malcarne, Dietz and Su31]. Furthermore, addressing practical barriers by covering accessibility costs, offering appropriate incentives [Reference Wang, Schweitzer, Hernandez, Molina and Keegan24] and designing flexible recruitment strategies showcases respect for young people’s time and circumstances. Despite its significance, the need to show participants the tangible impact of their involvement/how research is framed is not widely discussed in the literature, though two studies have highlighted this gap [Reference NLiS and Couespel32,Reference Taylor, Solanki, Aslam, Whelan and Fern33]. This suggests that researchers should focus on communicating the potential personal value of participation, such as fostering a sense of purpose or providing opportunities to connect with others facing similar experiences.
Developing relationships with leaders of specific communities and organizations was identified as a key facilitator to engaging young people from diverse backgrounds in research. This approach aligns with existing literature highlighting the importance of early and relationship-focused engagement. Gafari et al [Reference Gafari, Bahrami-Hessari and Norton29] argue that building connections with communities through face-to-face interactions is important for fostering trust. Whilst participants in our study also recognized this, we found broad approaches to identifying young people with cancer in the community proved less effective. In contrast, working with cancer charities trusted by young people was more successful. These organizations provided access to established networks where trust had already been built, ultimately, facilitating recruitment. In certain parts of the United Kingdom, community engagement officers act as valuable links, bridging the gap between research and underserved communities. Collaborating with these engagement officers can be instrumental in ensuring that research reaches and resonates with diverse groups of young people, as they have already established key relationships with these organizations and individuals.
A novel insight from our findings is the important role of “young champions” in engaging young people in research, a concept not widely explored in the literature. Training programs for lay health educators are more effective when tailored to specific populations and utilize a” Train the Trainer” model, empowering community members to educate their peers [Reference Ford, Wahlquist and Blake34,Reference Mitschke, Cassel and Higuchi35]. This approach has been shown to improve knowledge of and attitudes towards cancer clinical trials, as well as breast cancer screening and research. For example, a Breast Health Research Champion program successfully trained women to become community advocates, increasing their knowledge and confidence while positively influencing the attitudes and behaviors of individuals in their social networks [Reference Rafie, Ayers, Cadet, Quillin and Hackney36]. Similarly, employing dedicated staff to promote research within clinical settings has been shown to significantly increase the likelihood of patients being approached about research participation [Reference Oduola, Wykes, Robotham and Craig37].
Meaningful inclusion in research goes beyond categorizing individuals or tokenistic representation, although acknowledging disparities is important. Cultural sensitivity in research, including the need for diverse representation among healthcare providers and researchers are needed [Reference Prinjha, Miah, Ali and Farmer38]. As Preston et al [Reference Preston, Lappin, Ainsworth, Wood and Dimitri39] state, “Diversity isn’t just about the demographics of those involved but about the variety of approaches taken to ensure individuals are approached and involved in ways that accommodate their needs and lifestyles.” Individuals may identify with intersecting characteristics/identities, and thus individuals are not always neatly captured by these categories (e.g. disability, socioeconomic status); there is a richness and complexity within these groups that requires a more nuanced approach to inclusion.
Despite available guidance, drawing on research and public involvement literature, on engaging underrepresented groups in research [Reference Albritton, Caligiuri and Anderson1,Reference Anderson, Brading and Swaithes14,Reference (NIHR)17,Reference Witham, Anderson and Carroll23,Reference Monge-Montero, O’Callaghan, Rizvi, Košir and Gîrbu40–Reference Fern, Lewandowski, Coxon and Whelan44]; practical application remains challenging, and the issue of representativeness and inclusivity persists. This is partly due to barriers researchers face (see Table 2), including navigating ethical guidelines that restrict how researchers communicate research benefits, funds to manage incentives, and institutional requirements (e.g., lengthy consent processes/information sheets, which can be off-putting to young people and safeguarding issues with social media). Effectively engaging young people requires specific skills, resources, and dedicated time, often overlooked in traditional research settings. Providing training to researchers on accessible communication, cultural competency, age-related issues, and ethical engagement practices is important for successful implementation [Reference Monge-Montero, O’Callaghan, Rizvi, Košir and Gîrbu40,Reference Teodorowski45].
Barriers and key recommendations/actions to engage young adults (YAs) with a lived experience of cancer in research- a step-by-step checklist
Therefore, dedicated funding for Patient and Public Involvement [Reference Taylor, Whelan and Gibson11,Reference Teodorowski45], social media engagement, and community outreach should be integrated into research budgets. For example, effectively curating social media engagement requires not just financial resources but also dedicated personnel with expertise in online community building. Ultimately, allocating resources to these areas (relationship-building and online engagement), demonstrates a genuine commitment to inclusivity in research.
This study’s strengths include its co-design, participant-centered approach that focuses on the lived experiences of YAs affected by cancer. Diversity in relation to ethnicity, geographic location, and treatment status strengthens the relevance and generalisability of the findings. However, limitations of this study include potential selection bias due to recruitment primarily through cancer support charities, potentially excluding those less connected to such resources, including those with lower health literacy, limited internet access or lower social media engagement. Recruitment of males was challenging, leading to more women than men being represented. In addition, we did not recruit participants at the lower age range, i.e., adolescents of our population of interest and therefore the focus of our research findings have been on the experiences and recommendations of YAs. Additionally, the study’s focus on English-speaking participants may limit its applicability to certain immigrant or minority groups. While the recruitment strategy was intentionally broad in terms of its inclusion, the resulting sample characteristics suggest that findings should be interpreted with caution. This study’s focus on this population should be considered exploratory, with a need to prioritize culturally and linguistically appropriate recruitment strategies and partnerships to ensure broader representation to strengthen generalizability in future research.
This study highlighted key lessons and provides researchers with actionable strategies for overcoming barriers to meaningfully engage YAs in cancer research (see Table 2 and Figure 3). We encourage researchers to apply, evaluate and develop the recommendations further.
A step by step checklist for researchers on how to engage young adults (YAs) with a lived experience of cancer in research.
Conclusion
This study provides insights into the barriers and facilitators influencing research participation among YAs with a lived experience of cancer. By adopting the strategies identified here- simplifying language, offering diverse engagement formats, showcasing research impact, building relationships/collaborating with trusted organizations, ensuring dedicated funding for important engagement activities; researchers can create more inclusive and impactful research that genuinely reflects the voices and experiences of YAs. Our research offers practical solutions on how to facilitate the recruitment of YAs to research. Future research should explore the effectiveness of implementing these strategies in diverse research contexts.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/cts.2025.10101.
Acknowledgments
We thank the University of Southampton Public Engagement Research Unit (PERU) for funding this work. Special thanks also to Shine Cancer Support, Black Women’s Rising and Surrey Ethnic Minority Forum for supporting us with our recruitment. We are extremely grateful to the participants who so generously shared their experiences. We would also like to express our appreciation and thanks to the following individuals for their insightful advice and expertise on engaging individuals from diverse backgrounds in research; Caroline Tiza, Jennifer Preston, Natalie Wilde, Abbie Wright, Saran Green, Lisa Whittaker, Davina Opoku-Arhin, Katherine Morton, Oana Lindner, and Iryna Shakhnenko.
Author contributions
Nicole Collaço: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Visualization, Writing-original draft; Céline Bolliger: Formal analysis, Funding acquisition, Writing-review & editing; Kirsten Efremov: Formal analysis, Funding acquisition, Writing-review & editing; Peter Dawes: Formal analysis, Funding acquisition, Writing-review & editing; Sonia Obiokafor: Formal analysis, Writing-review & editing; Anne-Sophie Darlington: Funding acquisition, Writing-review & editing; Samantha Sodergren: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Visualization, Writing-review & editing.
Funding statement
This study was funded by the Public Engagement Research Unit, University of Southampton.
Competing interests
The authors declare no conflicts of interest.
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