“It just made me feel better”: qualitative examination of the implementation of a novel virtual psychosocial support program for adolescents with cancer

Adolescents with cancer routinely report feelings of isolation and exclusion, including from medical decision-making. To address this problem and support adolescents, we designed and implemented the novel, virtual, weekly Teens4Teens peer support group and patient education program. We examined the views of participating adolescents, program guest speakers, and program moderators as they pertained to the need for the program, its feasibility, acceptability, and perceived impact. We recruited all available adolescents, moderators, and guest speakers who participated in Teens4Teens to take part in audio-recorded, semi-structured interviews. Interviews were transcribed, coded, and analyzed using thematic analysis. We conducted 21 interviews across participant groups. We identified four broad themes: pathways into the Teen4Teens program, Teens4Teens implementation capacity, perspectives of the positive impact of Teens4Teens, and suggestions to improve Teens4Teens. These themes described a perceived need for adolescent-centered psychosocial programming in pediatric cancer care, provided lessons on how best to build and apply such a program, and highlighted the value of the program for both adolescents’ and clinicians’ acceptability, feasibility, and perceived utility. Adolescents, guest speakers, and moderators valued Teens4Teens and made suggestions to improve capacity to routinely implement the program. Adolescent-tailored psychosocial programming, such as Teens4Teens, is positioned to be integrated into clinical care with relative ease and may serve to improve the cancer care experience of adolescents and their families. This study has potential to provide researchers and clinicians with valuable information about the content, design, and delivery of virtual peer support programming for adolescents with cancer.


Introduction
Adolescence is characterized by changes which may result in personal challenges including those related to schooling and employment, body changes, and peer and romantic relationships [1].These challenges are further heightened in adolescents with cancer who report feeling increasingly isolated due to illness and excluded from medical decision-making due to parent and clinician perceptions related to adolescent capacity and understanding [2][3][4].If not addressed, this can impact adherence to treatment and delay the achievement of significant developmental milestones [5].Virtual support programs have become popular for adolescents and young adults with chronic illnesses.To date, several virtual communities have been established to enhance the psychosocial and physical health of young adults with cancer [6][7][8][9].However, no such programs have been developed specifically for adolescents with cancer in Canada.
To address this gap, a virtual, weekly peer support group and patient education program named Teens4Teens was launched in 2020 at the Hospital for Sick Children (Sick-Kids) in Toronto, Canada.The goals of this program were to strengthen connections between adolescents with cancer, combat isolation both proactively and longitudinally, and provide information to help manage cancer and its treatment.The objectives of the present study were to evaluate, from the viewpoints of adolescent participants and guest speakers and moderators, the need for the program and its feasibility, acceptability, and perceived impact.As such, this study has the potential to provide researchers and clinicians with valuable information about the content, design, and delivery of virtual peer support programming for adolescents.

Study design
An interpretive, descriptive qualitative design situated in the post-positivist paradigm was used to provide an inductive and analytical description of the Teens4Teens program [10].Our reporting is in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) tool [11].

Intervention
Teens4Teens consisted of 1-h weekly virtual drop-in sessions on the Zoom Healthcare application between October 2020 and April 2021.Thirty individuals (15 adolescents, 12 guest speakers, and 3 moderators) participated in the program.Each session was bookended by a psychosocial checkin and check-out and consisted of two main components: information sharing and open discussion.The informational component addressed themes such as how to navigate cancer care and the impact of cancer on domains of development.A detailed list of topics is shown in Online Resource 1. Certified child life specialist program moderators, who attended all sessions, shared themes with adolescents in advance, allowing adolescents to decide which sessions to attend.Guest speakers consisting of clinicians from nursing, social work, creative arts therapy, and young adult survivors of childhood cancer with knowledge in session topics were invited to speak in a didactic yet interactive manner.Following the educational component of the sessions, adolescents were provided with the opportunity for discussion in a confidential and monitored group context.Two moderators helped guide the conversation, address any questions, and provide psychosocial support.

Participants
We recruited participants from the SickKids Division of Hematology/Oncology where 100-150 adolescents are diagnosed with cancer annually.Adolescent interviewees were: 13-19 years old; English-speaking and reading; diagnosed with any type of cancer and receiving or had received care at SickKids; and completed at least one Teens4Teens session.Guest speakers and moderators were eligible for the study if they had participated in the respective role for at least one Teens4Teens session.We aimed to recruit all available adolescents, guest speakers, and moderators who had engaged with Teens4Teens.

Data collection
Following ethics approval at SickKids, we obtained informed consent online or in person.Participants completed a demographic form and a 45-60-min individual semi-structured interview online (via Microsoft Teams) or in person with research nurses or a masters-prepared research manager (AK, TM, EH) using a semi-structured interview guide (Online Resource 2).

Data analysis
Quantitative demographic data were analyzed using Microsoft Excel.Interviews were transcribed verbatim by a research nurse or medical student (AK, TM, MP, WL), and transcriptions were checked against recordings for accuracy.Transcriptions were uploaded to NVivo 12 for content analysis and to develop themes.An inductive thematic analysis, guided by the methods of Braun and Clarke, was used [12].Our analysis was data driven as opposed to theory driven, which could make it more prone to being underdeveloped and missing certain data pieces [12].However, this flexible approach allowed the analysis of a large dataset in a short time.
One team member (TM) independently reviewed three interview transcripts (one teen, one guest, and one moderator) to develop an initial codebook informed by the study aims.To validate this initial codebook, two additional study team members (AK, MP) coded the same three transcripts separately, and the group met to discuss results and augment the codebook as necessary.
Then, using the validated codebook, the group independently completed coding for three additional transcript and met to discuss the process and add any additional codes to the book as necessary.Near perfect agreement in coding was noted at this second meeting.The only discrepancies were in the wording, but not meaning, of new codes.Based on this agreement, the remaining transcripts were coded singularly by two coders (AK, TM), and each coder checked the other's decisions.Frequent meetings were held with our larger group to review decisions and arbitrate discrepancies.Overarching themes and relations were determined by grouping codes according to between-code relationships with any disagreements again resolved through group deliberation.

Results
Twenty-one program participants (70%) were interviewed (8 adolescents, 10 guest speakers, and 3 moderators).Reasons for declining to participate included illness (2), scheduling conflicts (4), and reasons not given (2).One participant passed away during the program.Interviews took place between September 2021 and January 2022.Adolescents were on average 17.1 (SD = 1.36; range 15-18) years old, female (100%), diagnosed with a variety of cancers, and commonly (3/8; 38%) lived more than 1 h from their cancer care center.Most adolescents (6/8; 75%) attended more than eight Teens4Teens sessions.Guest speakers were most often registered nurses or nurse practitioners (6/12; 50%).Additional participant demographics are shown in Tables 1  and 2. Four main themes, each with subthemes, describe our data.Figure 1 shows a framework that connects themes and subthemes.

The requirement for an adolescent with cancer support program
Adolescents reported their cancer diagnoses caused a sense of loss of control, decreased autonomy, and challenged their relationships with family and friends: "A common thing through my journey was that I felt so out of control, I was not in control of my own decisions and medical decisions and decisions about general in my life" (18-year-old).These challenges were heightened by the side effects of treatments including steroids and exasperated by a perceived lack of age-appropriate supports inside and outside of the hospital.

Emotions and expectations related to the program
Adolescents, moderators, and guest speakers described anxiety, uncertainty, and excitement prior to attending the program.The goals of attending for all groups were to share or learn about existing adolescent support resources and Teens4Teens presented an opportunity to build or facilitate peer connections between adolescents.As described by a moderator, "the main thing I wanted [the adolescents] to take away was having other people they could talk to" (moderator).

Enabling recruitment
The responsibility to recruit adolescents into Teens4Teens was divided across moderators, which was reported to enable the process within the constraints of daily clinical workflow.In addition, other members of the interdisciplinary team including staff oncologists and nurses were made aware of the program and referred adolescents.Adolescent-targeted flyers were also posted in clinical areas and instructed adolescents to contact moderators to participate.Moderators emphasized the need to use a structured and honest approach to recruiting adolescents and explained the program to adolescents as: "It is going to be uncomfortable, for the first 10 min.If you can do that, I think you'll enjoy it" (moderator).

Designing an accessible and acceptable program
All participants described Teens4Teens as a positive addition to current care, and this was especially true for the "core group of six who came almost every week" (moderator).
Rating the program out of ten, one adolescent stated: "I would say ten.Yeah, this is very helpful because I felt I could relate to people, right?Definitely helped me feel less alone in the cancer part of my life, right?" (15-year-old).
Attributes of the program that contributed to its acceptability included a strong team structure between the moderators, guest speaker, and program creator (CK); frequent meetings prior to program launch; and the availability of a Teen-s4Teens guest speaker guidebook.All participants generally approved of the timing and length of Teens4Teens sessions, with adolescents specifically appreciating programming near the weekend and in the evening to allow for homework and other after-school activities: "It shows commitment to the adolescents and you're respectful of their day" (nurse practitioner).The virtual method of delivery improved accessibility, however, was also reported to inhibit personal connection and decrease participant comfort level at times.Adolescents reported that the most impactful guest speaker-led educational sessions were focused on learning new coping mechanisms, channeling emotions through art, and discussing relationships and grief with family.However, adolescents also stressed the value of the sessions which were attended by only moderators and adolescents, which provided room for emotion-focused discussions: "I liked the adolescents and child life specialists.We talked a lot more about us and what we we're feeling" (18-year-old).

Meeting an adolescent care need
All participants emphasized that Teens4Teens filled a gap that was previously lacking at pediatric healthcare centers, where adolescents are often invited to participate in programming designed for younger children.One guest speaker highlighted this from a parent's perspective stating, "I had a mom tell me that the hospital is a great place to be up until you're 13 (years old)" (registered nurse).All three groups appreciated the open forum of the program: "You don't even have to talk about cancer in it.It's just one of the many topics.It's just a safe space to talk about, really, anything" (15-year-old).Guest speakers and adolescents credited the moderators with the creation of this open and adolescentfriendly environment: "The moderators were so great at setting it up, speaking respectfully to the adolescents.I was shocked at how openly (the adolescents) talked about their issues" (nurse practitioner).To this end, a high degree of moderator experience in working with adolescents was considered vital to program success.

Building an adolescent-centered program
The success of the program was bolstered by allowing adolescents to direct sessions: "I think we (moderators) were impressed with how little structure we really needed to get this group chatting…we were able to transition the group to really reflect the needs of the adolescents in that group as opposed to what we thought that they needed or wanted" (moderator).Customizing the program in this way provided autonomy to adolescents to discuss cancer and non-cancer topics in a close and relatively private way: "I liked how no one was telling us we couldn't talk about this in a certain way.We were open to take the conversation the way that we wanted" (15-year-old).

Generating program awareness, inclusivity, and cohesion
Moderators reported some challenges in recruiting participants into Teens4Teens, which were attributed to a lack of clinician awareness of the program.Moderators suggested using a multi-faceted approach (e.g., emails and advertisements) to build such awareness.Furthermore, the program struggled to recruit and retain male adolescents: "Poor (adolescent) boys would show up and it would be six women.Kind of intimidating, especially with younger adolescents" (moderator).Moderators and adolescents also cited awkward silences in sessions as a barrier to a strong group dynamic: "We had these little, long pauses where no one was talking because we didn't know if someone was already going to talk" (18-year-old teen).However, moderators reported improved capacity for conversation facilitation as the program progressed.A final challenge was the varying severity of disease among the adolescents.A moderator made this point with reference to a participant stating: "They (the adolescent) had just rung the bell (to mark the end of their treatment), but somebody in the group a few months prior had passed away, and so I think (the adolescent) was struggling with how well they were doing, and yet somebody they knew didn't do so well, and why them?" (moderator).This variation at times troubled group cohesion and was cited as the reason for one participant's attrition from the program.

Improved adolescent psychosocial health status
All participants stressed the program's role in connecting adolescents socially and emotionally as its defining contribution.One adolescent stated, "I think the main thing is the human relationship (Teens4Teens) was.The biggest takeaway was to have other people understand what I was going through and realize that I'm not alone.I think (that) is invaluable" (18-year-old).The program normalized the experience of cancer in a developmentally appropriate way, created space to share stories that adolescents were not comfortable discussing with their peers who did not have cancer, and created lasting friendships-extending beyond the end of the program: "Teens4Teens reminded me of what we'd gone through collectively" (18-year-old).Overall, adolescents discussed the program as improving their general mental health and well-being and their emotional and personal responses to stressors.A moderator summarized this impact: "With this (Teens4Teens) group there was such like a beautiful nurturing of each other and comforting of each other.They met each other where they were, and even when one of our participants died, they were able to separate out and say, 'You know, this is a fear that I have actually.This is an opportunity to talk about this'" (moderator).Further to this, many adolescents chose to stay in contact with one another following the program's end.

Practical skill provision for adolescents
The program provided adolescents with practical skills related to cancer self-management, information related to transitioning to adult care, coping strategies including meditation, and opportunities for leadership: "I think I was one of the people in the group who had one of the lengthier experiences with cancer or tumors.And so, I found myself in a position where there were these little babies (younger Teen-s4Teens participants) who looked up to you" (18-year-old).

Clinical skill provision for healthcare providers
Teens4Teens involvement was also reported to positively impact moderators and guest speakers through professional development.In particular, it provided opportunities for healthcare providers who typically care for younger children to engage with adolescents.Moderators and guest speakers described improved comfort in delivering developmentally appropriate care to adolescents in their general clinical practice, including providing privacy and ensuring clinical conversations were not focused solely on parents.

Enhance capacity for personal connections
Participants made several recommendations for future iterations of the program.These included changing the delivery to a hybrid mode (in-person at the hospital and virtual) to build group cohesion without limiting program access for adolescents who could not travel to the hospital.Adolescents Page 7 of 9 610 also suggested increasing the number of sessions and their length to provide more time for adolescent-to-adolescent conversations.Next, adolescents recommended creating and circulating meeting minutes to those who missed sessions due to illness or commitments, to keep all participants aware of program happenings.Lastly, one guest speaker suggested creating guest speaker feedback surveys to enable self-reflection and direct changes before future deliveries.

Expand adolescent-centered nature of program
All participant groups suggested that future Teens4Teens iterations begin with an assessment of adolescent-needed educational content.This was considered to enhance the program's direct applicability to each group: "I think you really need to go to those adolescents that participate in (Teen-s4Teens) and ask them how they would want it in the future" (nurse practitioner).Participants recommended using adolescent-oriented strategies to recruit and retain participants, such as social media platforms and branded apparel to show pride in the program.Several adolescents and moderators emphasized a need to prepare adolescents at program onset for the range of clinical outcomes participants may experience.To this end, one moderator stated: "I think us preparing (adolescents) for (poor outcomes in other participants) would be something to think about.And maybe to prepare them for that early on and say, 'Hey, we don't think this is going to happen, but this is something that we might deal with.'So that we're not kind of then scrambling to talk to them later" (moderator).Finally, interviewees recommended tailoring guest speakers and educational topics to males or creating a male-only support group to recruit and retain adolescent male participants.

Grow adolescent support community
All participants suggested expanding the Teens4Teens program to other healthcare centers where adolescents with cancer are treated, either through separate instances of the program or through building a large, possibly virtual, community.Such expansion was perceived to increase program impact by building a large and diverse adolescent peer support community.

Discussion
Teens4Teens was highly acceptable to adolescents with cancer, guest speakers, and moderators.All groups strongly endorsed that such a program should be implemented within the broader context of pediatric cancer care because of the isolating nature of cancer in adolescence [5].Participants also spoke of facilitators and barriers to the delivery of Teen4Teens and made explicit actionable suggestions for program optimization.Overall, participants stressed the need to expand the program to other adolescent cancer care settings-underscoring its perceived positive impact on adolescent psychosocial health and the potential power of the program in the future.
We identified several mechanisms for the perceived benefit of Teens4Teens on adolescent psychosocial health.Of these, peer support was considered the most impactful program component.Studies have demonstrated the significance of peer support in adolescent oncology, emphasizing its unique capacity, apart from relational support from other family and friends, to decrease stress and enhance wellbeing [13][14][15][16].Our results reinforce these findings, while also demonstrating adolescent capacity to create meaningful peer connections with minimal adult guidance.Adolescents also strongly valued practical skills acquired through Teen-s4Teens, especially those focused on stress-related coping.To date, several groups have shown the importance of coping skills to decrease anxiety and emotional distress in adolescents on treatment and in survivorship [17][18][19].A recent systematic review of patient perceptions of adult cancer peer support programs indicated that informational support from those with lived experience is a key benefit of program participation [20].The desire of adolescents with cancer to gain practical skills to enable disease self-management has also been highlighted in our previous qualitative work [21][22][23].Teens4Teens also provided valued leadership opportunities to adolescents.Practice acting in leadership roles supports adolescents in overcoming obstacles by instilling senses of self and enhancing independence, self-efficacy, and decision-making capacity [24].These qualities have been associated with successful adolescent cancer self-management and transition to survivorship or adult care [25,26].
Key elements emerged from the Teens4Teens program that facilitated its successful implementation, elements which may direct the design of similar programs in other adolescent care settings.Program flexibility, which allowed for adolescent direction of the content and structure of sessions, was particularly endorsed.This approach aligns with known advantages of co-designing health interventions with adolescents to enhance the likelihood of intervention engagement and effective prevention or alleviation of health issues [27,28].The program's success was also facilitated by the gap it filled in the care of adolescents, who often felt psychosocial programming at the hospital was focused on younger children.Our previous qualitative research with adolescents with cancer has likewise shown their desire to access education and well-being support through adolescenttailored means [29].
We also identified suggestions to improve Teens4Teens, which may be transferable to other supportive programming for adolescents with cancer.One of the most frequently made suggestions was to incorporate in-person sessions into the virtual program to enhance peer connections-a finding which echoes that from research into virtual peer mentorship in adult oncology [30].Continuing the adolescent-centered approach to programming was also recommended and is a known means to improve the healthcare experiences of adolescents with cancer [31].Reports from participating adolescents concerning difficulties in confronting the suffering of others align with previous research demonstrating that adolescent and adult patients are fearful of developing a close bond with someone who may pass away [13,20].In the case of Teens4Teens, a session was delivered after the death of a participant by an expert in adolescent grief and bereavement; however, future iterations will involve delivering that session earlier to proactively prepare adolescents for such a circumstance.
As a low-cost and streamlined psychosocial intervention, Teens4Teens represents a feasible and scalable means to provide adolescent-centered psychosocial programming in pediatric centers and beyond.Although a center champion is needed to organize and propel the program, a Teens4Teensstyle program is well-positioned for wider implementationfollowing appropriate program adaptation to local contexts.Qualitative and quantitative research should examine the capacity to implement such a program in other settings.
This study is not without limitations.Our participants were predominantly white and female, and all were recruited from a single large center which limits the generalizability of our findings.Furthermore, although most adolescents attended all the program sessions, despite our best efforts, we were unable to interview those who did not consistently attend Teen-s4Teens, limiting our understanding of program acceptability.Further studies should explore the impact of these variables on program acceptability and perceived utility.Members of our research team created and ran Teens4Teens, which could introduce a positivity bias into our results.However, those team members did not conduct interviews or primary data coding.We were also purposely mindful that negative impressions of Teens4Teens were equally important to its design to avoid an analysis that was overly subjective, as can be possible with qualitative description [32].Last, to begin to develop consensus on program feasibility, we included the viewpoints of multiple involved groups.However, this meant data derived from all groups were combined, which may have eclipsed group-specific themes and subthemes.
Adolescents, guest speakers, and moderators valued Teens4Teens and made suggestions to retain or improve the program's implementation.Participant insights into the program should be used as evidence of its potential power and underpin any changes required to expand the program to other settings.Ultimately, adolescent-tailored psychosocial programming such as Teens4Teens is positioned to be integrated into care with relative ease and may serve to improve the cancer care experience of adolescents and their families.

Table 1
Adolescent participant characteristics