Codesigning Communication Interventions With Adolescents, Parents, and Clinicians in Pediatric Oncology: A Feasibility Study

Abstract

Objectives:

Adolescents and young adults are rarely included alongside parents and clinicians in codesign of interventions in pediatric oncology, particularly for sensitive communication topics such as prognosis. We examined the feasibility of mixed-participant codesign, including pediatric patients, parents, bereaved parents, and multidisciplinary clinicians, within the RIGHTime study.

Methods:

We conducted eight longitudinal virtual mixed-participant codesign sessions across four sequential blocks spanning 5 months. Eligible participants included patients aged ≥12 years with advanced cancer, parents of children with advanced cancer, bereaved parents, oncologists, and psychosocial clinicians. Feasibility outcomes included enrollment and attendance. To characterize participants’ experiences, we analyzed structured reflections from each session, eliciting perspectives on the benefits and challenges of the mixed-participant codesign approach.

Results:

Twenty-one participants contributed: patients (n = 4), parents (n = 5), bereaved parents (n = 4), oncologists (n = 5), and psychosocial clinicians (n = 3). Among invited patients and parents, 13/19 enrolled, and the mean attendance across four blocks was 92.5%. Reflections highlighted the value of shared dialogue, including learning across perspectives, connection, and attention to individualized communication. Patients and parents described gratitude and legacy-oriented motivations; clinicians described perspective-taking and incorporation of insights into communication practices. Across groups, reflections suggested that shared dialogue informed both intervention development and clinician communication practices.

Conclusions:

Mixed-participant codesign that includes adolescents and young adults alongside parents and clinicians was feasible in pediatric oncology communication research. Participant reflections suggest this approach may support the development of patient-centered communication interventions and inform clinician communication practices. This model may be transferable to pediatric oncology settings where patient perspectives are essential to intervention design.

Trial Registration:

ClinicalTrials.Gov Identifier: NCT05116566

1 ∣. Introduction

Prognostic communication is central to pediatric oncology care, shaping how children and families understand illness, prepare for the future, and make decisions aligned with their values [1]. High-quality communication has been associated with improved prognostic understanding, goal-concordant decision-making, and emotional coping [2]. In pediatric oncology, children and parents consistently emphasize the importance of honest, individualized conversations and the need for clinicians to elicit preferences about how and when prognostic information is shared [3-5]. Although participatory research is increasingly recognized as best practice in pediatric health innovation, children are often excluded from intervention codesign—particularly for sensitive topics such as prognosis [6-8]. Even when children are included, traditional qualitative methods typically stratify groups by role to reduce perceived hierarchy [9]. Mixed-participant codesign offers an alternative approach, bringing patients, parents, and clinicians together to better reflect the relational dynamics of real-world communication in pediatric oncology.

The RIGHTime (Revealing Information Genuinely and Honestly across Time) study previously identified patient, parent, and clinician perspectives to improve prognostic disclosure [3, 10]. In the second phase of this study, we convened adolescents and young adults with advanced cancer, parents of children with advanced cancer receiving active treatment, bereaved parents of children who died from cancer, and multidisciplinary pediatric oncology clinicians in longitudinal mixed-participant codesign sessions to review and refine a conceptual framework and collaboratively develop a novel communication intervention. We hypothesized that including pediatric patients alongside parents and clinicians in mixed-participant codesign would be feasible, as reflected by strong enrollment and sustained attendance, and that participant reflections would demonstrate the value of both inter- and intra-role engagement. In this paper, we evaluate the feasibility of this approach and characterize participants’ experiences to inform the development of patient-centered communication interventions in pediatric oncology. Honoring the mission of this work, authorship includes patient, parent, and clinician members of the Communication Collaborative who partnered together in this codesign process.

2 ∣. Materials and Methods

The RIGHTime (Revealing Information Genuinely and Honestly across Time) study was reviewed and approved by the institutional scientific review committee and the institutional review board at St. Jude Children’s Research Hospital (RIGHTime [21-0886]; approval date: April 21, 2022).

2.1 ∣. Study Development

The study was designed by a multidisciplinary team with expertise in pediatric oncology, psychology, palliative care, bereavement, anthropology, communication science, and qualitative research (Table S1). Study procedures and materials were reviewed by pediatric cancer patients, parents, and clinicians through St. Jude forums and listservs, and feedback was incorporated into protocol refinement before IRB submission. Study design, procedures, and reporting align with the OnQual expert recommendations for the conduct of high-quality qualitative research [11] and the Consolidated Criteria for Reporting Qualitative Research (COREQ) [12] to enhance rigor and transparency (Table S2).

During Phase 1 of the study, 25 patients, 40 parents, and 20 clinicians completed semi-structured interviews related to best practices in prognostic disclosure. Rapid qualitative analysis identified key domains of high-quality prognostic communication in advanced childhood cancer, including the importance of aligning conversations with individuals’ values and preferences [10]. To translate these insights into clinical practice, Phase 2 of the RIGHTime study used a multi-phase, mixed-participant approach to bring patients, parents, and clinicians into shared dialogue to refine a conceptual framework and codesign a novel communication intervention. This work was guided by principles of conceptual framework analysis [13] and human-centered design [14]. As in Phase 1, all goals, materials, and procedures for Phase 2 were reviewed and refined with volunteer patients, parents, and clinicians prior to implementation.

2.2 ∣. Eligibility, Recruitment, and Enrollment

Eligible participants included: (i) patients aged ≥12 years with advanced, poor-prognosis cancer (overall survival estimated ≤50% by an oncologist); (ii) parents of patients of any age currently receiving treatment for advanced, poor-prognosis cancer; (iii) bereaved parents; (iv) oncologists; and (v) psychosocial pediatric oncology clinicians. To ensure representation across the illness trajectory, patients and parents were purposively sampled from four cohorts: (i) ≤3 months from diagnosis, (ii) ≤3 months from disease progression, (iii) enrollment in a Phase I/II clinical trial, and (iv) bereaved parents. Patients and parents were recruited from Phase 1 participants who indicated interest in later study phases, using phone and/or email outreach with follow-up contact to non-responders after 1 week.

For patients aged 12–17 years, parental permission was obtained prior to approaching adolescents with developmentally appropriate study information; adolescents provided verbal assent alongside written consent from their parents. Patients ≥18 years and parents provided written consent, and clinicians provided verbal consent in accordance with institutional standards. All consent processes emphasized voluntary participation, confidentiality, privacy, and access to psychosocial support. Participants received a $50 gift card after each of the four blocks (up to $200 total).

2.3 ∣. Focus Group Procedures and Data Accrual

Mixed-participant codesign occurred across four sequential blocks, each including two virtual sessions (typically mid-day and evening), with dates and times democratically selected through participant polling to accommodate individuals’ schedules and maximize attendance. Blocks were held over 5 months, spaced at monthly intervals, with dates and times determined through calendar polling. Sessions were conducted via secure videoconferencing to reduce logistical barriers and support participation across locations.

Sessions were designed to be 90 min with flexibility to extend the discussion at the participants’ request. Focus groups were co-facilitated by a multidisciplinary team with expertise in pediatric oncology, palliative care, pediatric psychology, child life, and grief and bereavement care (E.C.K., H.B., R.E.H., H.F., C.C.). An anthropologist observed dialogue, tone, and body language and recorded detailed field notes without participating in the discussion. Each session followed a structured format that included brief opening prompts for reflection, guided review of materials, structured and open-ended discussion, and a summary of next steps. Objectives for the four blocks are aligned with study aims: conceptual framework refinement (Block 1), intervention codesign (Blocks 2–3), and implementation planning (Block 4). Participants were also invited to share reflections via email between sessions.

To support psychologically safe engagement across roles, the research team developed a structured facilitation model emphasizing preparation, inclusive convening, psychological protection, and iterative feedback (“closing the loop”) (Figure 1). These elements were designed to mitigate hierarchical dynamics and promote sustained, meaningful participation among patients, parents, and clinicians. A psychologist and child life specialist attended all sessions to monitor participants closely for any signs of emotional distress and provide immediate or follow-up support. The research team debriefed immediately following each session to review details of participant engagement and plan outreach if needed. To ensure equivalent representation of participant voices, team members offered one-on-one conversations covering session topics to any participant who missed sessions, spoke less often during a prior session, or expressed a preference for individual discussions.

FIGURE 1 ∣.

Practical strategies used to structure longitudinal mixed-participant sessions in the RIGHTime study. The framework emphasizes four domains: preparation, inclusive convening, psychological protection, and iterative feedback. These elements were designed to support adolescent and young adult inclusion and sustained engagement across participant roles.

All sessions were audio-recorded, transcribed, and de-identified. Notes were taken during all follow-up conversations. Transcripts and field notes were reviewed between blocks, and content from each session was directly integrated into ongoing refinements of the conceptual framework and intervention design.

2.4 ∣. Feasibility Outcomes and Participant Reflections

The feasibility of the mixed-participant approach was assessed by enrollment, attendance, and sustained engagement across blocks. To support participation, we implemented flexible scheduling and multiple participation options to maximize attendance across sessions. Additional feasibility metrics included successful longitudinal data collection across four blocks, the ability to flexibly accommodate individualized participation, and the generation of targeted outputs, including a conceptual framework and novel clinical intervention proposal.

To describe participants’ experience of the mixed-participant format, we analyzed brief structured reflections elicited at the start of each session (Table S3). Participants were also invited to share optional written feedback on these prompts, at their discretion. These prompts were designed to elicit contextual feedback related to mixed-participant engagement; they were not intended as validated acceptability instruments. Transcripts and notes were analyzed using a qualitative content analysis approach. Analysts independently reviewed transcripts and notes, wrote memos to generate early impressions, then developed and iteratively refined a hybrid codebook incorporating deductive and inductive codes. Two analysts independently coded transcripts; a third team member adjudicated the discrepancies. Axial coding grouped codes into broader categories that were synthesized into themes describing motivations, experiences, and reflections on the mixed-participant format.

3 ∣. Results

Of the 25 patients and 40 parents who participated in Phase 1 of the RIGHTime study, 17 patients and 38 parents expressed interest in Phase 2 participation. From this opt-in cohort, we purposively sampled participants to ensure representation across diagnoses and illness experiences, approaching seven patients, eight parents of children receiving active treatment, and four bereaved parents. Of those approached, four patients aged 12–22 years (57%), five parents (63%), and four bereaved parents (100%) enrolled. All five invited oncologists (100%) participated, representing both a large academic pediatric cancer center (n = 2) and smaller affiliated centers (n = 3). Three psychosocial clinicians (psychology, child life, palliative care) participated as members of the research team. In total, 21 individuals contributed to the mixed-participant codesign format as members of the ‘Communication Collaborative’ (Table 1).

TABLE 1 ∣.

Demographics of champion panel participants (n = participants).

	n (%)
Bereaved parents (n = 4)
Gender
Male	1 (25)
Female	3 (75)
Race
White	4 (100)
Black/AA	0 (0)
Asian	0 (0)
Ethnicity
Hispanic/Latino	2 (50)
Non-Hispanic	2 (50)
Disease type
Solid tumor (ST)	0 (0)
Neuro-Oncology (NO)	3 (75)
Leukemia and lymphoma (LL)	1 (25)
Parents (n = 5)
Gender
Male	1 (20)
Female	4 (80)
Race
White	4 (80)
Black/AA	1 (20)
Asian	0 (0)
Ethnicity
Hispanic/Latino	0 (0)
Non-Hispanic	5 (100)
Disease Type
Solid tumor (ST)	2 (40)
Neuro-oncology (NO)	1 (20)
Leukemia and Lymphoma (LL)	2 (40)
Patients (n = 4)
Gender
Male	3 (75)
Female	1 (25)
Race
White	4 (100)
Black/AA	0 (0)
Asian	0 (0)
Ethnicity
Hispanic/Latino	0 (0)
Non-Hispanic	4 (100)
Disease type
Solid tumor (ST)	3 (75)
Neuro-Oncology (NO)	1 (25)
Leukemia and Lymphoma (LL)	0 (0)
Patient age at panel
12–14 years	1 (25)
15–17 years	1 (25)
18–20 years	1 (25)
21–25 years	1 (25)
Oncologists (n = 5)
Gender
Female	2 (40)
Male	3 (60)
Race
White	1 (20)
Black/AA	1 (20)
Asian	3 (60)
Ethnicity
Hispanic/Latino	0 (0)
Non-Hispanic	5 (100)
Years in clinical practice
0–5 years	1 (20)
5–10 years	3 (60)
>10 years	1 (20)
Psychosocial clinicians (n = 3)
Gender
Female	3 (100)
Male	0 (0)
Race
White	3 (100)
Black/AA	0 (0)
Asian	0 (0)
Ethnicity
Hispanic/Latino	0 (0)
Non-Hispanic	3 (100)

3.1 ∣. Feasibility

Among the 27 invited participants, 21 enrolled (78%). When stratified by role, 57% of invited patients and 75% of invited parents enrolled, and all clinicians chose to participate. Session attendance and follow-up are summarized in Table 2. Across roles, all enrolled participants completed at least one session, and 19 of 21 participants engaged in two or more sessions. Attendance remained high across blocks: 86% for Session 1, 100% for Session 2, 76% for Session 3, and 100% for Session 4. Mean attendance across sessions was 92.5%, with consistent engagement across participant groups (patients 94%, parents 86%, oncologists 90%, psychosocial clinicians 100%) (Table 2). All eight sessions were conducted in a mixed-participant format, with patients, parents, and clinicians participating together. Eight participants (44%) engaged in at least one one-on-one follow-up conversation to accommodate scheduling or individual preferences. These findings support the feasibility of sustained, longitudinal engagement across groups in a mixed-participant format.

TABLE 2 ∣.

Feasibility metrics.

Data	No. (%)
Overall participation
Patients	4/7 (57.14)
Parents	9/12 (75.00)
Oncologists	5/5 (100.00)
Psychosocial clinicians	3/3 (100.00)
Overall	21/21 (100.00)
Average attendance per panel
Patients	(93.75)
Parents	(86.25)
Oncologists	(90.00)
Psychosocial clinicians	(100.00)
Overall	(92.50)
Champion Session 1 attendance
Patients	3/4 (75.00)
Parents	8/9 (88.89)
Oncologists	4/5 (80.00)
Psychosocial clinicians	3/3 (100.00)
Overall	18/21 (85.71)
Champion Session 2 attendance
Patients	4/4 (100.00)
Parents	9/9 (100.00)
Oncologists	5/5 (100.00)
Psychosocial clinicians	3/3 (100.00)
Overall	21/21 (100.00)
Champion Session 3 attendance
Patients	4/4 (100.00)
Parents	5/9 (55.56)
Oncologists	4/5 (80.00)
Psychosocial clinicians	3/3 (100.00)
Overall	16/21 (76.19)
Champion Session 4 attendance
Patients	4/4 (100.00)
Parents	9/9 (100.00)
Oncologists	5/5 (100.00)
Psychosocial clinicians	3/3 (100.00)
Overall	21/21 (100.00)
Follow-up calls
Patients	2/4 (50.00)
Parents	3/9 (33.33)
Oncologists	2/5 (40.00)
Overall	7/18 (38.89)

3.2 ∣. Participant-Reported Experience of the Mixed-Participant Codesign Format

Participants reflected on their motivations for participating, their experiences in the mixed-participant sessions, key takeaways, and their hopes for the future. Representative quotes supporting each theme are presented in Table 3.

TABLE 3 ∣.

Themes generated from participant discussion of reflection prompts.

Cohort 1: ≤3 months from diagnosis Cohort 2: ≤3 months disease progression Cohort 3: Enrolled in Phase I/II clinical trial Cohort 4: Bereaved parents
Why did you agree to join this champion panel?
Research advancement	I decided to do this ‘cause especially when first getting diagnosed, the communication between the doctor and patient is what can set the mood for the rest of the cancer journey. I think that it’s very important for that first step to be a good one. (Cohort 2 Patient 3, Male, 15 years old) This work is so important—a real help to patients, caregivers and also doctors and clinical staff. And I am honored to be part of it. (Cohort 4 Parent 9, Female)
Representation	I‘m here because the journey with cancer has been a difficult one. I’ve had to learn to advocate for not only my daughter but myself and my family. Just looking to bridge the gap between what is science and humanity. (Cohort 2 Parent 7, Female) They did not tell me whether he actually had cancer and then the doctor had said, “Well, we didn‘t want you to panic,” and I thought that’s not up to you. I know from my perspective that I was upset. In fact, I was angry. It was not upset. I wrote probably a good 10-page letter because of it and I was hurt, so I know that this kind of communication is super, super, super important, that people need to have that and need to be felt like they can be heard. (Cohort 3 Parent 1, Female)
Legacy	<Hospital> gave our son a fighting chance and to be able to make his memory count and make his life count through research work… advocating for that and advocating for <Hospital> has always been a big thing for me and will forever be. (Cohort 4 Parent 3, Female) I just wanted to give back to <Hospital> in any way I could. I did have a great experience. I feel like there‘s always room to improve on diagnosis. I don’t have a negative experience, but I have experiences that I think we can continue to grow on. (Cohort 1 Parent 2, Female)
Gratitude	Participation in panel pales in comparison to what <Hospital> has given me—another birthday—that could have all ended (Cohort 2 Parent 7, Female) At the end of the day, we‘re gonna figure this thing out. We’re gonna keep it together and I‘m just so inspired by everyone here. Our stories are so different, but we’re all affected so much the same. I‘m just honored to be here and give—I want to give a global perspective and I just want to thank you for inviting me to be a part of this. Any time I can help, I always will and I’m just so happy to report that I couldn‘t be happier with the decisions that we’ve made for <Name> because we‘re livin’, baby. We are livin’. All gas, no brakes. (Cohort 1 Parent 4, Female)
Education and growth	I‘ve realized that pediatric oncologists could do a better job of being more consistent with how we talk about prognosis to our patients. I really wanna learn what the best next steps are, and also to provide my perspective if that’s helpful in any way. (Oncologist 2, Male) I joined in part because I think one of my roles is basically to be a tool in service to the patient. We bring something to the team. The patient, the family is another aspect to the team and we all have to work together. I‘m really looking forward to learning from all the members of the team that I can ’cause I‘m sure that even as hopefully I can contribute to the discussion, I am sure I’m gonna learn something from you all and that honestly is what really excites me. (Oncologist 1, Female)
What was it like to talk about prognosis and communication in a group of patients, parents, and oncologists, all together? What did you notice about being part of this group? What did it feel like to be with patients, parents, and oncologists?
Value of diversity in shared perspectives	It was really insightful for us being part of that group. Had a lotta comradery in so many different dynamics because the perspectives played a big part of it. From people who were struggling, people who were new. People who had experienced it. People who have had, unfortunately, children pass. It was a very different dynamic, but it was really insightful for us to help understand how other people are—what they‘re struggling with, what they’re going with. (Cohort 1 Parent 2, Female) I think it was good that a lot of different perspectives are used. Because it‘s very—while it is the patient receiving the diagnosis, it is everyone’s reacting to it. It‘s good to get everyone’s—how everyone would like to learn about prognostication and all that… It didn’t feel weird to me. It felt like everyone was very open with their opinions. (Cohort 2 Patient 3, Male, 18 years old)
Generation of compassion, humanity, and solidarity	I love thinking I‘m pretty good at what I do, but you guys are better at helping me be better. That was such a gift that you guys gave to me. I’m so appreciative of that. I hope you all know that I say that in a very tongue-in-cheek way. I love what I do because of the connection really. That is really all of it. Just grateful, again, to be here with you all this evening. (Oncologist 1, Female) One of the things that stood out to me is how grateful I am for people with an MD still looking to learn things. Or seek the best way to do something. That was very encouraging to me. It was just really cool. I can‘t imagine going to school for that long and doing that much residency and doing all that and still be willing, like, “Oh, I’ll learn.” I think that would be very hard for me to do. Not the biggest school fan. Just, yeah, very grateful for the doctors. Not only the questions they’re asking, but the contributions they made to this. (Cohort 3 Patient 2, Male, 22 years old)
What is your hope for the outcome of the RIGHTime project? What would you like to see come out of this effort?
Contribution toward advancing science	My specific hope for this study is that there are some really good, concrete tools that come out of it that people can use both on the patients and parents but also the oncology teams to help navigate—to start and navigate and keep refreshing conversations about the patient’s progress and their prognosis throughout their treatment. (Cohort 4 Parent 9, Female) My hope for the project is just that this research would continue. I think one of the biggest things I‘ve actually learned through these sessions is there are somewhat different preferences for how a diagnosis, prognosis should be shared. I also think it’s really cool to see you guys compounding everything and putting it together for what‘s the best. Because I think that this is something that is very undertaught and, I think, undervalued. Which it’s really cool that y’all are doing research on it. (Cohort 3 Patient 2, Male, 22 years old)
Making a positive impact on clinical care	[I] hope that other parents don’t struggle as much as we used to. Maybe parents and kids [will] feel like they are listened to and heard—maybe this will make it easier for them. (Cohort 3 Patient 1, Male, 13 years old) My hope for this project and—it‘s that you keep paying attention to the parents through our journeys ’cause that‘s the most important thing, how parents and patients navigate through this process that it’s hard from the beginning. (Cohort 4 Parent 6, Female)
What will you take away from this experience?
Representation	I know that being a part of this was really helpful for me because I saw a lot of different people’s perspectives. Knowing how I am, but seeing that other people had different experiences is—was helpful for us as well. I appreciated being a part of this study, I really enjoyed it actually, and 100% would help others because with new families coming in, it makes all the difference in the world. (Cohort 3 Parent 1, Female) When you go through this, you do feel alone. Thank you guys for empowering us to speak up. I think what I‘ll take from this is I’ll be a better advocate for my daughter in the future ‘cause we don’t know what the future may hold. Also, by sharing your story, you can help other patients. I would certainly do it again. (Cohort 2 Parent 7, Female)
Value of diversity in shared perspectives	Yeah, I would definitely do this again. I think it was really insightful to hear from families and patients, and other providers about this. I think that this is a really exciting idea to learn about. (Oncologist 3, Female) Being a part of this was really helpful for me because I saw a lot of different people’s perspectives. Knowing how I am, but seeing that other people had different experiences is—was helpful for us as well. I appreciated being a part of this study, I really enjoyed it actually, and 100% would help others because with new families coming in, it makes all the difference in the world. (Cohort 3 Parent 1, Female)
Gratitude	I‘m a mom of a <Hospital> patient who had the pleasure of being with <Hospital> for 8 months. He was able to do a lot of research with them, and it was amazing. He’s in heaven now. I‘m a bereaved parent. I would love to do this again, and any call to action with <Hospital> because it’s the least we could do to give back. I do feel that it’s doing the purpose that he—we set out to is to live a life he would be proud of. Count on us for anything you need. (Cohort 4 Parent 3, Female) I‘m just really grateful that you guys are doing this and showing that you care so much about this because it’s an important thing, but I don‘t think a lot of people think about it like this and just how personal it can be and emotional it can be to receive news like this, and everyone’s different from person-to-person. I just wanna say that I’m really grateful and thankful that you guys took the time, took all the people who are working on this, to do this, and I would 110% do this again if someone were to ask me. (Cohort 2 Patient 4, Female, 15 years old)
Education and growth	One of several things I will take away is not to assume that I know how my patients or their parents prefer to receive communication regarding bad news, and understanding that however they wanna receive it is okay. Ever since we‘ve started this, I’ve been trying to incorporate that into my daily routine. I think it helps facilitate honesty of communication between myself and my patients. I’m very appreciative of every single one of my patient parent panels, and patients who are here, and to kinda teach us how best to serve you. Would I do this again? In a heartbeat. (Oncologist 2, Male) What I am taking away from this is just appreciate so much the reminder, and education of how individualized people’s needs are. (Oncologist 1, Female)
The power of community and connection	My main takeback is seeing how other people react to this. Because when you’re actively in it, it can be a very isolating experience. Seeing people not only experience different how you do, but other people experiencing sort of what you are going through is very helpful. I would gladly do something like this again. I like helping people especially with something like childhood cancer when you can only have a perspective on it if you deal with it. (Cohort 2 Patient 3, Male, 18 years old) I‘ll echo what so many other people have said, as far as often feeling somewhat alone in this, and being able to voice your specific scenarios, hearing other people, and you kinda got that me-too going. You’re like, “Wow, this is a normal feeling, a normal part of the process.” I just think it‘s wonderful that <Hospital> of course, it’s not a surprise cares enough to get people together to try to figure out a better way to just approach things. I mean, it’s absolutely no surprise, but to be a part of that is an honor. I’m just thankful to be here. I would definitely do it again. (Cohort 1 Parent 2, Female)

3.3 ∣. Motivation for Participation

Across roles, participants described five primary motivations, including advancing research, ensuring representation, honoring legacy, expressing gratitude, and pursuing personal or professional growth. Patients and parents emphasized the centrality of communication in pediatric cancer care and expressed a desire to improve how these conversations unfold for future families. They spoke about elevating voices that are often underrepresented in clinical spaces and contributing insights grounded in lived experience. Several parents, particularly those who were bereaved, described participation as a way to honor their child‘s memory and ensure that their family’s story could help others. Patients and parents conveyed a deep sense of gratitude toward the treating healthcare institution and viewed research participation as a meaningful way to give back. Clinicians highlighted their commitment to lifelong learning and described the codesign format as an opportunity to listen more deeply, reflect more intentionally, and strengthen their own communication practices through dialogue with patients and families.

3.4 ∣. Experience of Mixed-Participant Dialogue

Participants across roles described the mixed-participant sessions as meaningful and generative. Two major themes were identified: the value of diverse perspectives and descriptions of compassion, humility, and solidarity. Participants appreciated hearing insights from others across clinical roles, illness experiences, and personal backgrounds. They highlighted the richness of learning from perspectives beyond their own, including differences in communication preferences and lived realities. Oncologists described how humbling and eye-opening it was to hear patients and parents speak candidly about prognostic conversations, sharing their intention to incorporate these perspectives into practice and teaching. Patients and parents described the group dynamic as supportive and affirming. Many expressed gratitude, and even surprise, at how natural and open the dialogue felt, noting the kindness, sincerity, and mutual respect that characterized the sessions.

3.5 ∣. Takeaways and Impact

When asked what they would take away from the experience, participants described a sense of contributing to both scientific advancement and person-centered care. Many expressed pride in helping develop tools to strengthen communication in pediatric oncology and valued the opportunity to influence future practice. Oncologists reflected on tangible changes in how they approach difficult conversations, describing increased attention to individual communication preferences and a renewed commitment to mindful listening. Patients and parents emphasized the empowerment of being heard and a sense of relief born from engaging in open, honest dialogue. Several participants expressed interest in continued involvement and hope that the project would lead to real-world impact and spark future research.

3.6 ∣. Hopes for the Future

When asked about their hopes for the outcome of this mixed-participant collaborative, participants echoed themes of representation, gratitude, and growth, while also naming a deeper sense of connection and community as a lasting impact. Patients and parents described their cancer care experiences as profoundly isolating, with connection to others navigating similar challenges in a shared space described as restorative. They reflected on the comfort of being seen and the power of hearing stories that resonated with their own. Clinicians expressed hope that the resulting communication guide would facilitate more honest, individualized conversations in practice and strengthen partnership in care. Across roles, participants voiced a collective aspiration to see this work extend beyond the study to advance more compassionate, person-centered communication across pediatric oncology.

4 ∣. Discussion

This study demonstrates that adolescents and young adults can be meaningfully included alongside parents and clinicians in the codesign of communication interventions in pediatric oncology, with sustained engagement over time. Theoretical concerns about hierarchy or burden did not manifest as barriers; participants across roles spoke directly with one another, engaged consistently, and described the process as meaningful and generative. These findings reinforce prior work suggesting that pediatric patients, caregivers, and clinicians are both able and willing to contribute to communication research, even in the context of advanced illness or bereavement [15-17]. This study provides a concrete example of how adolescents and young adults can be included in intervention development alongside the adults with whom they navigate clinical conversations.

More specifically, findings from the RIGHTime study extend the literature on participatory design in pediatric oncology by illustrating that mixed-participant focus groups can foster humility, empathy, and solidarity across roles [6, 7, 18]. Rather than constraining dialogue, diverse perspectives enriched discussions, challenged assumptions, and prompted reflection—particularly among oncologists reconsidering their communication practices. Clinicians described incorporating insights from these sessions into their approach, suggesting that codesign may function as both an intervention development strategy and a mechanism for experiential learning. Although descriptive, these findings suggest that mixed-participant models can preserve engagement while supporting shared understanding across roles. Participatory approaches that intentionally include pediatric patients alongside parents and clinicians may therefore offer particular value when developing interventions that shape shared clinical experiences [19-21].

Interventions to strengthen prognostic communication should be both tailored to individual preferences and developed in partnership with those most directly affected. The collaborative format piloted in this study reflects the relational values central to high-quality prognostic disclosure: listening with humility, honoring individual perspectives, and engaging in honest dialogue [1, 3, 10]. In this sense, the structure of intervention development may shape the relevance and resonance of the resulting tools. To support implementation of this approach, we developed a structured facilitation framework (Figure 1) outlining key domains of preparation, inclusive convening, psychological protection, and iterative feedback. While our approach was intentionally comprehensive, the primary resource required for this model is time and intentionality, rather than specialized infrastructure. Although our team invested substantial effort in preparation and longitudinal engagement, we believe that key elements could be implemented effectively in shorter formats (e.g., single-session workshops or brief iterative sessions) with careful planning and facilitation.

This study has several limitations. Patients and parents were primarily recruited from a single institution and may represent a self-selected group motivated to engage in communication research. However, many patients travel from their local settings for treatment at the study site. As a result, participants represented different regions of the country and brought experiences with cancer communication from prior institutions. Discussions were therefore not specific to a single site. Most patient participants were adolescents or young adults; therefore, findings may not fully reflect the perspectives of younger children, who may require different engagement strategies in codesign processes. Participating oncologists were purposefully recruited from the study site and three affiliated institutions to further broaden perspectives. Recruitment for this phase of the study was restricted to English-speaking participants, given logistical challenges with real-time interpretation in virtual group settings. However, the next phase of the RIGHTime study will purposefully include patients and caregivers who speak any language to broaden inclusion. Additionally, participant reflections were elicited through structured prompts intended to promote psychological safety and were not validated measures of acceptability or psychosocial impact. Future research should evaluate mixed-participant approaches across diverse settings and examine how codesigned interventions influence communication behaviors and patient-centered outcomes.

In summary, longitudinal mixed-participant codesign that includes adolescents and young adults, parents, and clinicians was a feasible approach for collaborative intervention development in the context of pediatric oncology communication science. Intentional inclusion of adolescents and young adults in participatory research may strengthen alignment between communication interventions and lived experience, offering a reproducible approach to intervention development when patient and family perspectives are central to pediatric oncology communication.

Supplementary Material

Additional supporting information can be found online in the Supporting Information section.

Table S1: Multidisciplinary team member attributes. Table S2: Consolidated Criteria for Reporting Qualitative Research (COREQ). Table S3: Interview prompts.