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Abstract

It is well established that AYAs, defined as individuals between 15–39 years of age, require specific oncologic and supportive care distinct from children and older adults. Yet cancer care and support systems often do not meet the unique needs of AYAs. In British Columbia (BC), approximately 1050 AYAs are diagnosed with cancer each year. There is currently limited provincial AYA cancer care and support programming. In 2022, the Anew Research Collaborative and BC Cancer, met with over 70 AYAs and cancer care allies (health care providers, clinicians, researchers, and supporters) and facilitated a patient-oriented, Participatory Action Research session to reimagine AYA cancer care and support in BC. In this article we discuss our participatory research process and subsequent advances and future opportunities to create a provincial AYA cancer care and support program in BC. We discuss key factors to consider when engaging AYAs to transform cancer care and support systems including considering the care and support needs of AYAs, using participatory methods to support collaboration and disrupt power structures, and orienting the process and outcomes towards action and/or change. Additionally, we reinforce the importance of providing counselling supports when working within difficult or traumatic contexts and the need to engage AYAs from underrepresented groups. Using a participatory, patient-oriented research approach, this project lays the foundation for meaningful engagement of AYAs, alongside cancer care allies, to create tangible changes in AYA cancer care and support that respond the unique experiences, needs and priorities of AYAs; and the approaches used are applicable across many health care contexts.

Keywords

adolescent and young adult cancer care and support participatory action research patient-oriented research

Introduction

Adolescents and young adults with cancer have unique care and support needs that are often unmet by cancer care systems

In Canada, adolescents and young adults (AYAs), aged 15-39, represent 4% of patients (∼9,200 people) newly diagnosed with cancer each year (Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society Statistics Canada and the Public Health Agency of Canada, 2023). AYAs face unique clinical and life stage challenges distinct from children and older adults (Berkman et al., 2023; Chisolm et al., 2018; Coccia, 2019; McInally et al., 2021). Their cancer diagnosis thrusts them into a hospital and oncology environment that is out of step with their life stage and coincides with major life transitions (e.g. post-secondary education or employment, independent living, marriage and partnerships, parenthood and/or caring for aging relatives (Chisolm et al., 2018; McInally et al., 2021). Simultaneously, AYA diagnoses are on the rise (Ledford, 2024), diagnoses for AYAs are often delayed which means that AYAs often present with advanced disease (Hamilton & Coleman, 2023), and AYA survivorship outcomes have not seen similar improvements comparted to the pediatric and older adult counterparts (Trama et al., 2019). This complex web of medical, emotional, and social challenges brings with it added anxieties including fear of early death (Korenblum et al., 2025; Smrke et al., 2020), infertility (Daniel et al., 2021) social and financial disruptions (Jones et al., 2020; Mahon et al., 2023), and fear for the future (De et al., 2021; Lane et al., 2019). It is well established that AYAs, require oncologic and supportive care distinct from children and older adults; however, AYA cancer care and support is often inconsistent and fails to address the unique needs and realities of AYAs (Berkman et al., 2023). Further, there is limited research and practice initiatives focused on the cancer care and support needs and experiences of AYAs with diverse intersectionalities and identities (Canadian Cancer Society, 2023; Hammond, 2017; Hill et al., 2024a) further reinforcing the inequities that exist in cancer care and support for AYAs, an already underrepresented population.

Growing support for AYA programs globally and nationally

Over the last two decades, interest in cancer care and support for AYAs has gained momentum globally (Chisolm et al., 2018; Ferrari et al., 2021) and nationally (Canadian Partnership Against Cancer, 2019; Young Adult Cancer Canada, 2023). In the United Kingdom and Australia AYA specific care has become standard practice (Gupta et al., 2016; Osborn et al., 2019; Srikanthan et al., 2023) and the National Cancer Institute and the American Society of Clinical Oncology recommend AYA-specific oncologic and supportive care programs and training (Srikanthan et al., 2023). In Canada, notable advances include: the first reference report on AYAs (Canadian Partnership Against Cancer, 2017), the first national comparative study on the well-being of AYAs compared to their non-cancer peers (Young Adult Cancer Canada, 2023), and a national framework on the care and support of AYAs with cancer (Canadian Partnership Against Cancer, 2019). Several provinces have launched AYA programs (i.e. Ontario, Manitoba, Alberta, and Quebec) (Avery et al., 2022; Pitch et al., 2022; Scott & Oberoi, 2024; Smith et al., 2024), and other provinces have AYA programs in development.

In the province of British Columbia (BC), BC Cancer is the primary agency responsible for adult cancer care. In 2023, it was estimated that approximately 1050 AYAs were diagnosed with cancer, representing 3.5% of all adults diagnosed with cancer in BC (BC Cancer, n d.). Although this number is relatively small, the number of AYAs requiring cancer care is on the rise and the number of AYA survivors who will require ongoing care over their lifetime is significant (Chisolm et al., 2018). To date, there is no specific AYA cancer care and support program in BC despite significant need. In 2016 there was traction to establish an AYA program at BC Cancer (Surujballi et al., 2022); however, the program came to a halt in 2018 due to a shift in leadership, which was then followed by the COVID-19 pandemic. Yet, since 2022, momentum has risen, and an AYA program again seems possible.

Need to engage AYAs to improve cancer care and support

As programs are developed nationally and globally, engagement of AYAs is often limited (Hawkins, 2018; Oveisi et al., 2024). This may be because participatory methods are limited in healthcare contexts and there remains a perception that patients are passive recipients of care (Albert et al., 2008; Hill et al., 2024b). Yet, research indicates that AYAs have a clear understanding of how their cancer care can be improved and want to play an active role in doing so (Hawkins, 2018). Patient engagement is a key principle in the Strategy for Patient Oriented Research (Canadian Institutes of Health Research, 2014) and the Canadian Framework for the Care and Support of AYAs with Cancer (Canadian Partnership Against Cancer, 2019); and research demonstrates that relevant patient and stakeholder engagement can improve research quality, knowledge translation (KT) efforts, and informed health decision-making (Domecq et al., 2014; Manafo et al., 2018; Sunderji et al., 2019). There is urgency to meaningfully engage AYAs to better understand their cancer care and support experiences, needs and priorities and develop responsive, contextualized AYA cancer care and support.

Anew is a research collaborative focused on reshaping cancer care and support for AYAs. Anew is committed to meaningfully engaging patients, alongside their cancer care allies, to understand their experiences, perspectives, and insights and create tangible changes in AYA cancer care and support. Anew was founded collaboratively by an AYA with lived experience with cancer and a diverse team of researchers, AYAs, and clinicians with expertise in patient-centred research, creative engagement, and equity-focused change. Now, Anew is a growing community of AYAs, researchers, clinicians, and supporters who are actively creating changes in AYA cancer care and support.

To support the meaningful participation of AYAs in the co-development of an AYA cancer care and support program in BC, Anew and BC Cancer co-facilitated a participatory engagement session (Baum et al., 2006; Cox et al., 2021) focused on reshaping cancer care for AYAs at the 2022 BC Cancer Summit. The BC Cancer Summit is an annual event presented by BC Cancer, that brings together cancer care providers, researchers and trainees, and supporters (organizations and families) from across BC. At the Summit session AYAs and cancer care allies came together to develop an important road map of key priorities to improve cancer care and support for AYAs. Since this meeting, there is renewed interest to establish an AYA cancer care and support program in BC. In this article we share about our research process (methodology and methods) and discuss the results associated outcomes that are supporting the creation an AYA program in BC.

Methodology

Our research approach is grounded in the principles of Participatory Action Research (PAR) and Patient-Oriented Research (POR). By definition, “PAR is a systematic inquiry, with the collaboration of those affected by the issue being studied, for the purposes of education, taking action or effecting social change” (Green & Thorogood, 2004, p. 419). Further, PAR “seeks to understand and improve the world by changing it” Baum et al., 2006, p. 854] and is increasingly essential in research with “medically underserved” (Nelson et al., 2009, p. 41) and underrepresented populations (Gallegos et al., 2023). PAR is appropriate for this research because PAR: is about research with people, rather than about people (Hall, 1981; Reason & Bradbury, 2008); it values people, and in this case AYAs, as experts and agents of change in their lives (Hall, 1981; Reason & Bradbury, 2008); is a co-learning process that can help mitigate, or move beyond, power imbalances which are often deeply inherent in health care contexts (Gaventa & Cornwall, 2006; Hall, 1981); can help understand how intersecting identities and oppression shape participants’ experiences (Bailey et al., 2019; is action-oriented, geared towards the lived realities of AYAs and the issues they deem significant (Reason & Bradbury, 2008); and aims to transform theory and practice to create change for people affected (Munford & Sanders, 2003). In short, a PAR orientation values AYAs as active experts and contributors of change in AYA cancer care and support.

Further, PAR aligns with, and advances, the principles and ethos of POR. POR refers to a research continuum that engages patients as partners, focusses on patient-identified priorities, improves patient outcomes, and applies knowledge to improve health care systems and practices (Canadian Institutes for Health Research, 2014, p. 5). Like PAR, POR focuses on working in partnership with AYAs, alongside health care allies, to identify patient-centred priorities and actions to improve and transform AYA cancer care and support. Like PAR, POR necessitates working in partnership with AYAs to explore patient priorities and actions enhance knowledge, improve patient outcomes, improve research quality and improve cancer care and support for AYAs (Manafo et al., 2018; Sharma & Grumbach, 2017; Sunderji et al., 2019). A POR orientation is particularly important for this project as historically, AYAs have had few opportunities to share their experiences and insights and be involved in supporting change within cancer care systems (Hawkins, 2018; Oveisi et al., 2024).

In the context of this project, a PAR/POR approach was particularly important to recognize the wisdom and contributions of AYAs, to help disrupt power imbalances between patients and care providers, and to explore and help legitimize collaborative approaches to research and health systems transformation in a context that tends to undervalue social science research qualitative research (Albert et al., 2008; Clarke et al., 2019). Further, a PAR/POR approach recognizes and values that AYAs have a clear understanding of how their cancer care can be improved and want to play an active role in doing so. Aligned with this PAR/POR approach we used creative facilitation methods (Cox et al., 2021; Lipmanowicz & McCandless, 2014) to support meaningful engagement and dialogue amongst AYAs and cancer care allies. Below in the section entitled ‘methods’ we explore how AYAs and cancer care allies were engaged at the BC Cancer Summit.

Methods: Facilitating Engagement with AYAs and Cancer Care Allies

Preparing for engagement at the BC Cancer Summit

Prior to engaging with AYAs at the BC Cancer Summit, we hosted a series of virtual engagements (n = 7) with AYAs to identify their needs and priorities for AYA cancer care and support. 58 AYAs participated in at least one of these virtual engagement sessions. These sessions were essential to build relationships amongst AYAs, explore AYA needs, experiences, and priorities, build trust and understanding in the Anew facilitation team, and explore collaborative facilitation approaches with AYAs. We also worked with a small group of AYAs (n = 4) who sit on our research advisory group and/or whom are members of the Anew research team to design the participatory session at the BC Cancer Summit and help encourage participation. Then prior to the session at the BC Cancer Summit we hosted a dinner with all AYA participants to further build trust and relationships and shared the agenda, questions, and facilitation plan with AYA participants to support their meaningful participation.

Engagement at the BC Cancer Summit

In an effort to collaboratively discuss and build an AYA cancer care and support program in BC with AYAs and cancer care allies, we proposed a session at the BC Cancer Summit that was not a traditional medical conference presentation. Rather, the session was collaborative in nature. Specifically, the intent of the session was to bring AYAs and cancer care allies together to: (1) examine new research exploring the lived experiences of AYAs with cancer in BC, (2) engage AYAs and cancer care allies in dialogue to explore the lived experiences, challenges and opportunities in AYA cancer care and support, and (3) identify opportunities and priorities to reshape cancer care and support for AYAs. The session was 1.5 hours in duration and included: AYAs (n = 16), healthcare providers (n = 23), researchers and trainees (n = 8), and supporters (n = 14) from across BC.

Recruitment and support

AYAs were invited to participate through the Anew mailing list and through patient and partner networks. Recognizing that current AYA research offers limited perspectives and insights from individuals with diverse intersectionalities and identities, we purposively connected with partners that work with diverse groups of AYAs and/or have targeted programming for AYAs who share common identity factors (i.e. racialized AYAs, individuals who identify as 2SLGBTQIA+, individuals from rural and remote communities, AYAs across the age spectrum, and individuals with advanced cancer) with intent to engage a more representative group of AYAs. It is important to note that we did not collect demographic information about AYA participants, nor did we ask AYAs to disclose specific dimensions of their identity beyond the fact that they reside in BC, they were diagnosed with cancer as and AYA and received treatment in BC. To support AYA participation in the event we covered all AYA event fees, paid for accommodation and per diems, provided an honorarium in alignment with the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (Canadian Institutes of Health Research, 2022), encouraged AYAs to bring a supporter with them, and employed a counsellor to offer support to all AYA participants during the Summit.

Cancer care allies working with AYAs were purposively invited to attend the session and we sent out email invitations to health care professionals, researchers, and organizations working with AYAs in BC. Additionally, all Summit registrants were open to attend the session.

Session design and structure

To support meaningful dialogues between AYAs, healthcare providers, researchers and trainees, and supporters, we organized participants into groups of 6-8 people, where at least two people identified as AYAs. Each group sat at a table together, except for the virtual participants (n = 10) who met using Zoom and used the platform Jamboard to engage interactively.

The session began with some introductions and an orientation to the research session, including an exploration of informed consent and an introduction of clinical counselling team that was available and present both in the room and online to support participants. We then offered some context-setting about AYA cancer care and support in BC, where AYAs shared facts about AYA cancer care and support. This was followed by a high-level overview of ongoing research and programming in AYA cancer care and support in BC. The remainder of the session then focused on conversation and dialogue in the small groups, where four questions were explored:

• What brings you to this session?

• What currently supports cancer care and support for AYAs in BC (programming, training, specialized treatment protocols, research)?

• What would improve cancer care and support for AYAs in BC?

• What’s your top priority to reshape cancer care and support for AYAs in BC?

The questions were intentionally designed so that irrespective of one’s role in AYA cancer care and support (e.g. AYA, clinician, researcher, supporter), participants could offer insights and perspectives based on their own lived experiences. Also, rather than inviting people to begin with their title or role in cancer care and support, we encouraged them to introduce their names and what brought them to the session. This approach to introductions was done to help minimize power imbalances and adopt a more person-centred approach that valued each person for their unique contributions and insights, rather than their professional role or title.

We used a modified 1-2-4-All Liberating Structure (Lipmanowicz & McCandless, 2014) was to support small groups to explore these four questions. Liberating Structures are collaboration methods designed to disrupt power imbalances and support groups to work together by tapping into the group’s collective intelligence and supporting generative conversations [60]. 1-2-4-All is a method that begins by giving each participant time for silent individual reflection on the question. Then participants have a one-to-one conversation with another participant, followed by a small group conversation amongst 4 participants, and then all participants. We modified 1-2-4-All to begin with a round of silent reflection, then encouraged the group the meet as a table, and then we invited table groups to share in the large plenary. Specifically, each person was given 3 minutes to respond to the question individually which involved writing their responses on Post-It Notes provided on the table and sticking these Post-It Notes on a Flipchart on the table. For online participants, a virtual whiteboard platform Jamboard was used. For the first question, to help identify who was in the room, we invited participants to write their responses on a specific colour of Post-It Note (e.g. orange for AYAs, pink for care providers, green for researcher/trainee, and blue for supporter). For the remainder of the questions, we did not specify Post-It Note colour. After each person had time for individual reflection, each group was then invited to look at the responses and discuss: what do you notice? What do you observe? In their conversations, the groups were encouraged to create space for new or different voices. At the end of each question conversation, the facilitator invited responses from several groups before proceeding to the next question, and a graphic recorder captured the dialogue in real-time. See Figure 1 for the graphic recording of the session.

Figure 1.

2022 BC Cancer Summit Graphic Recording Reshaping Young Adult Cancer Care, Together

During the session, participatory analysis (Cox et al., 2021; Jackson, 2008) was embedded, where participants were invited to review the data that emerged within their respective groups and identified main themes. During this process, we invited to create space for new and/or different voices and explore divergent points of view. Key themes were then shared back in the plenary and captured by the graphic recorder. Following the session, responses to each question were transcribed and a thematic analysis was conducted by two members of the research team, one of whom identifies an AYA with lived experiences with cancer. The key themes identified through the participatory analysis were used to guide the thematic analysis. While we do not address all the themes outlined in Figure 1 in this paper, we do explore the key themes that relate to our research approach and the establishment of an AYA cancer care and support program at BC Cancer.

Results – Reflections from the BC Cancer Summit

Below we offer key themes that emerged through the BC Cancer Summit session and Table 1 offers a range of quotes from AYAs and cancer care allies related to each result.

Table 1.

Select Quotes From AYAs and Cancer Care Allies Aligned With Key Themes

Theme	Supportive quotes
Theme 1: A need for AYA-specific cancer care and support	“AYA cancers are poorly understood, and AYAs face unique challenges navigating cancer in their lives. More needs to be done to understand and address cancer for AYAs. I’ve lost too many friends and want to be part of the change.” ∼ AYA with lived experience with cancer who attended the AYA session at the BC Cancer Summit “I have always recognized that adolescents and young adults ‘stand out’ from other patients because they’re not as well supported as the ‘standard’ cancer patient. I Believe we can do better for AYAs.” ∼healthcare provider who attended the AYA session at the BC Cancer Summit
Theme 2: Value of participatory methods to build relationships between AYAs and cancer care allies and disrupt inherent power structures	Attending the BC Sancer Summit as an AYA helped me see my advocacy in light of the larger cancer advocacy work, as well as speak with medical staff, researchers and other decision makers in a capacity other than as a patient. I was able to share my experiences and feel that it was not only welcome but also could make a difference. This feeling of agency, as an aspect of advocacy, was powerful in shoring up my hopes that we can actually make change. ∼AYA with lived experience with cancer who attended the AYA session at the BC Cancer Summit It was enlightening to sit amongst women and men who have lived experience with cancer as AYAs. Being on the other side in a healthcare role I feel more motivated to make positive changes towards their needs. ∼ healthcare provider who attended the AYA session at the BC Cancer Summit Attending the Summit was one of the first opportunities that I had to work as a patient with healthcare professionals outside of my own care. Participating in the workshop taught me to find my voice as an advocate and led to some incredible opportunities for me within the patient advocacy space. After attending, I finally felt like I was able to make a difference in the way that cancer care is provided to AYAs. I Have gained so much of my sense of self back by working in these spaces after such a life changing diagnosis. ∼AYA with lived experience with cancer who attended the AYA session at the BC Cancer Summit
Theme 3: An orientation towards change: Co-developing and committing to a road map to reshape AYA cancer care and support	The way that the AYA sessions are structured felt meaningful and productive, something that is not always possible in healthcare or support settings. ∼ AYA with lived experience with cancer who attended the AYA session at the BC Cancer Summit The discussions were well laid out and organized. There was enough time to discuss each topic, and at the tables it was at, there seemed to be a mix of AYA who have experienced cancer/clinicians/cancer care administrators. I Really loved that there were folks from BC Cancer there who were very engaged and discussing amongst themselves what they could do within BC Cancer. ∼ AYA with lived experience with cancer who attended the AYA session at the BC Cancer Summit I would love to see more non-traditional sessions like this at future Summits that focus on co-creating change. ∼healthcare provider who attended the AYA session at the BC Cancer Summit

Theme 1: A need for AYA-specific cancer care and support

During our session at the Summit, it was evident that there is currently a lack of AYA-specific cancer care and support in BC and that AYA-specific and holistic care is needed to best support AYAs. Specific priorities identified included the establishment of a patient navigator, a knowledge hub to share AYA specific resources, AYA specific care and programming, and longitudinal follow up and funding. It was acknowledged that an AYA program should extend beyond Vancouver and be provincial in scope, thus necessitating virtual and face-to-face components. Participants advocated that AYA care and programming should be equity-oriented and represent the unique needs of AYAs with diverse intersectionalities and identities (Gallegos et al., 2023; Hammond, 2017; Lambert et al., 2023). Further, similar to research in person-centred care and agency (Hawkins, 2018; Oveisi et al., 2024), AYAs reinforced the unique contributions that AYAs can bring to AYA cancer care and support, where rather than being passive recipients of care, they seek to be partners in cancer care and support for AYAs. In doing so, they also stressed the importance of having counselling support available to support their participation.

Theme 2: Value of participatory methods to build relationships between AYAs and cancer care allies and disrupt inherent power structures

AYAs and cancer care allies who attended the session commented on the value of the session and how it was refreshing in engage in a session that was participatory in nature. In particular, cancer care allies spoke about how much they learned about AYA cancer care and support programs and needs through dialogues with AYAs and AYAs noted that they felt heard and seen through the participatory process. This was particularly evident when we posed question 2: What currently supports cancer care and support for AYAs in BC? This question supported AYAs to showcase their knowledge and expertise in AYA cancer care and support and helped to disrupt the power dynamic, whereby many healthcare providers and researchers were unaware of the programs and processes that currently support AYAs navigating cancer care. Responses to this question included statements such as: “Not aware of anything”; “I don’t know., “?”, “Unknown. This session provided an opportunity for AYAs to connect with cancer care allies to share what currently exists and what is needed to provide better cancer care and support from the perspectives of AYAs. It also offered meaningful opportunities for AYAs and cancer care allies to engage in conversations that are often not possible in health care settings. Although this session was not officially evaluated by the BC Cancer Summit, there were general evaluation comments noting that the session was “excellent” and filled “a big gap” around patient engagement and building responsive care and support, and both AYAs and cancer care allies advocated for participatory sessions at future BC Cancer Summits.

Theme 3: An orientation towards change: Co-developing and committing to a road map to reshape AYA cancer care and support

The BC Cancer Summit session provided an opportunity to bring together AYAs and care providers to discuss the current state of AYA cancer care and support programming, yet was also oriented to the future. Specifically, it engaged participants to co-design a road map for AYA cancer care and support in BC (see Figure 1). This was considered important for AYAs and cancer care allies involved. Since the Summit in 2022, we continue to revisit this plan to support programming and advocacy and it has shaped all of our efforts to develop an AYA cancer care and support program in BC. In preparation for the BC Cancer Summit in 2023, we hosted a series of virtual gatherings with AYAs to understand their specific experiences, needs, and priorities around counselling, resource development, and oncofertility, and these themes were the focus of the participatory session we cohosted at the BC Cancer Summit in 2023 with AYAs and cancer care allies. Further, we have worked with AYAs to take tangible actions to improve cancer care and support for AYAs including:

• establishing an AYA resource page on BC Cancers ’s website that specifically identifies resources that AYAs found helpful when navigating cancer (see: https://www.bccancer.bc.ca/health-info/adolescent-young-adult),

• establishing an AYA counselling pilot program at one regional BC Cancer where newly diagnosed AYAs were referred to a counsellor with specific training and expertise in working with AYAs,

• revising BC Cancer’s pregnancy policy to include fertility,

• securing funding to establish an oncofertility care referral plan and resources to support AYAs exploring fertility preservation prior to starting treatment,

• securing funding to better understand the lived experiences, needs, and priorities of AYAs who identify as racialized (Hill et al., 2024a, 2024b) to better inform an AYA cancer care and support program in BC, and

• co-developing an immersive theatre experience with AYAs that could be shared with care providers to build awareness and understanding of AYA experiences navigating cancer care in BC.

Engaging AYAs alongside cancer care allies is integral to creating a program that reflects the needs and realities of AYAs, and adopting a PAR/POR approach has provided a strong platform to develop programs and advocate for changes in AYA cancer care and support research, policies, and practices. Within this work it is important that a focus on change and the future is inherent. In fact, at the the BC Cancer Summit in 2024, one AYA participant noted: “It was heartening to hear of the pilot project for AYA’s that has been initiated since last year’s Summit and the one prior. It was nice to know that the input that was given by participants was implemented.” Thus, reinforcing the importance of a focus on action and change and following through on the commitments identified.

Discussion

Our engagement in the 2022 BC Cancer Summit demonstrated both the value and importance of bringing together AYAs and cancer care allies together to engage in dialogue and explore priorities and opportunities for change in AYA cancer care and support. However, we recognize that doing so requires careful consideration of the “how”. Specifically, an approach is required that disrupts traditional power dynamics between patients and cancer care allies, values AYAs as experts of their own lived experiences with expertise and insights to offer and is change-oriented—focused on creating change in AYA cancer care and support. A PAR/POR approach was particularly effective and aligned because it: values session participants as experts and change agents, can help disrupt power dynamics, and is future focused.

Within this context however, it is also important to recognize the challenges AYAs may face when talking about cancer care and support and to plan engagements accordingly. As we planned for this session, we recognized that talking about cancer may be difficult for the AYAs and that this difficulty may be further amplified when talking when cancer care allies about cancer care and support. Rather than inviting AYAs to tell or re-tell their experiences of receiving cancer care and support—which has the potential to be retraumatizing, we instead invited AYAs and cancer care allies to consider and draw upon their own experiences to identify strengths, gaps, and opportunities for change in AYA cancer care and support. Further, we hired a counsellor to be available at the Summit to AYA participants and introduced their role during the introduction to the session and asked the counsellor to follow-up with each AYA individually as needed. To us, the role of counselling supports for AYAs during participatory sessions cannot be understated. In fact, since the 2022 BC Cancer Summit, we continue to ensure that we have counselling supports available to AYAs in all research engagements and feel this is a critical facet of PAR/POR approaches with people navigating difficult topics, experiences and/or circumstances.

As we plan for future engagements, it is also critical that we recognize the need to engage AYAs with diverse intersectionalities and identities who may be underrepresented and underserved in AYA cancer care and support. As Hammonds notes, “socioeconomic, sexual, and cultural ‘‘minorities’’ are increasingly becoming the norm among AYAs with cancer” (2016, p. 37) and there is an urgent need for research and practice efforts that seek to understand and address the distinct issues and realities for AYAs with diverse intersectionalities and identities. As such, in our work moving forward we are intentionally focusing on groups within the AYA population that are underrepresented and underserved [8,20]. We recently completed a PAR/POR project focused on the experiences, needs, and priorities of racialized AYAs (Hill et al., 2024a, 2024b), and are seeking funding to engage other AYAs who are underrepresented and underserved including younger AYAs between the ages 15-24, AYAs who live rurally or remotely, AYAs with stage 4/advanced cancer, AYAs who identify as 2SLGBTQIA+, and AYAs who identify as Indigenous (Abdelaal et al., 2023; Drake et al., 2023; Frosch, 2022; Horril et al., 2019; McInally et al., 2021; Ussher et al., 2023). We also recognize that AYAs who are male and/or who identify as men have limited engagement in AYA research and cancer care programs and are also seeking to support their engagement in future research activities (El-Akhras & Bilodeau, 2023). To engage these groups, it is important to be mindful of the considerations noted above, while also emphasizing the critical need to: build partnerships founded on care and relationships, acknowledge the overlapping, intersecting nature of identities of AYAs, consider cultural supports and needs, use participatory approaches that capture their wisdom and expertise, and provide opportunities to inform and facilitate tangible changes in AYA cancer care and support that respond their unique experiences, needs, and priorities.

Conclusions

In closing, there is a growing commitment and interest to establish an AYA program in British Columbia to support the unique cancer care and support needs of AYAs. However, to develop an AYA program requires: active engagement of AYAs and cancer care allies through the use of creative and democratic engagement methods, engagement of AYAs with diverse intersectionalities and identities to ensure programming reflects their specific needs, tangible commitments to meet the care and support needs of AYAs in both research and practice, and sustained commitments to create changes in AYA cancer care and support that respond the perspectives, needs, and realities of AYAs. A PAR/POR approach has been integral to support meaningful engagement and collaboration amongst AYAs and cancer care allies to facilitate tangible and ongoing changes in AYA cancer care that respond to the unique needs and realities of AYAs.

Footnotes

Author Note

This paper is for submission to Special Collection: Participatory Research and Community Engagement

Acknowledgments

We wish to support the many AYAs who contribute to and shape this work. Thank you also to Melissa Kendzierski of Drawing Change for their graphic recording support and illustration.

ORCID iD

Cheryl Heykoop

Consent to Participant

Informed consent was obtained from all participants involved in this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by a Participatory Action Research Grant No. FOI19-1674 from the Vancouver Foundation and a Convening and Collaborating Award and a Scholar Award from Michael Smith Health Research BC, Grant No. SCH-2021-1467.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

IRB Approval

This project was approved by the Royal Roads University Ethical Review Board.

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Reshaping Adolescent and Young Adult Cancer Care and Support Through Participatory Engagement

Abstract

Keywords

Introduction

Adolescents and young adults with cancer have unique care and support needs that are often unmet by cancer care systems

Growing support for AYA programs globally and nationally

Need to engage AYAs to improve cancer care and support

Methodology

Methods: Facilitating Engagement with AYAs and Cancer Care Allies

Preparing for engagement at the BC Cancer Summit

Engagement at the BC Cancer Summit

Recruitment and support

Session design and structure

Results – Reflections from the BC Cancer Summit

Theme 1: A need for AYA-specific cancer care and support

Theme 2: Value of participatory methods to build relationships between AYAs and cancer care allies and disrupt inherent power structures

Theme 3: An orientation towards change: Co-developing and committing to a road map to reshape AYA cancer care and support

Discussion

Conclusions

Footnotes

Author Note

Acknowledgments

ORCID iD

Consent to Participant

Funding

Declaration of Conflicting Interests

IRB Approval

References