Using a Co-Creative Process to Develop Information Videos on Transition Care: Process, Outcomes, and Evaluation

INTRODUCTION AND BACKGROUND

For youths with chronic illnesses, the transition from pediatric to adult healthcare settings often represents a challenging and difficult period of life (Gray et al., 2018; Toulany et al., 2022). It represents a change of context; often constituted by long-established relationships with healthcare teams at a time when several social, psychological, and physiological changes related to adolescence occur concomitantly. In the early 2000s, a series of studies began to show that youths with chronic illnesses – notably because of their increased life expectancy – were facing dire situations when confronted to adult care settings (Rosen et al., 2003). Neither youths nor the adult care teams were prepared for this. As a consequence, some youths faced great difficulty in finding new providers and felt completely abandoned (Larivière-Bastien et al., 2011). Lack of preparation, information, coordination between pediatric and adult settings, and support were, and still are, frequently cited issues (Gorter & Gibson, 2016; Larivière-Bastien et al., 2011, 2013). These experiences lead to suboptimal clinical management, reduced quality of life, and inefficient use of resources (Hobart & Phan, 2019). For some youths who depend on medication regimens and regular clinical follow-ups (e.g., after being the recipient of an organ transplant; those requiring ongoing immunological therapy) (Harden et al., 2012; Ouimet et al., 2023), this can be a lifesaving issue. In some cases, youths have died prematurely because of inappropriate transition (Margolis et al., 2017).

In recent years, this gap has been recognized and an increasing number of institutions are attempting to address this difficult period through various means (Betz et al., 2016; Grant & Pan, 2011). A common strategy is to appoint transition coordinators, often specialized nurses, who assist youths and families in navigating the change of settings by providing support, information, and clinical referrals (McMurray & Cooper, 2017). Some institutions have developed transition programs which encompass a wide array of services and support; while in other clinical settings, transition is managed more piecemeal by specialized teams (e.g., pediatric nephrology and adult nephrology; pediatric cardiology and adult cardiology). The literature, including the Canadian Association of Paediatric Health Centers guidelines, suggests that transition planning be “youth-focused and family-centered, inclusive of personal choice and adaptable to the abilities and complexities of the youth’s needs” (Canadian Association of Pediatric Health Centres (CAPHC) & National Transitions Community of Practice, 2016, p. 27). Transition preparation, which refers to the skills and abilities of young people, is a key element of transitional care. There is general consensus on the need to develop tools or approaches to assess the readiness of young people and measure transition readiness, ensuring that patients have the necessary knowledge (CAPHC, 2016; Rosen et al., 2003). Indeed, the importance of considering the opinions and preferences of young people in transition planning and adapting the transition plan to the needs of the patient and their family are key elements identified in an international study Delphi (Suris & Akre, 2015). However, a review of evaluation studies on transition programs found that few studies examined youth satisfaction with these programs (Lanteigne et al., 2021)

As an interdisciplinary team of health researchers in ethics and pediatrics, we became attuned to potential value discrepancies between established transition programs and local social and clinical realities (see Box for further information on the study setting). First, being situated in the minority nation of Québec in North America, we are aware that many resources developed in English-speaking regions are neither linguistically nor culturally adapted. Some reflect care systems, transition programs, and resources which do not align with local clinical realities, as healthcare is under provincial jurisdiction and varies across provinces in Canada. Second, we took heed of the discrepancy between common aspirations of transition programs and local realities. For example, the influential position statement of the Society for Adolescent Health and Medicine defines transition as the “Purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult oriented healthcare systems that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound and comprehensive” (Blum et al., 1993, p. 570). However, this aspirational view does not correspond to the often fragmented and challenging real-world situations, where insufficient resources do not allow such developments (Gray et al., 2018; Toulany et al., 2022). Furthermore, transition programs often embed explicitly and implicitly the goals of compliance, independence, and responsibility for youths. Their focus tends to be on biomedical and clinical outcomes rather than on the more holistic and personal aspirations of youths (Lanteigne et al., 2021). This has been remarked by disability scholars as the fact that “Transitions best practices reflect dominant social values and assumptions about what constitutes a successful adulthood, embedded in goals such as independent living, self-management, and obtaining work” (Hamdani et al., 2015, p. 1144). For youths with chronic illnesses, these dominant values and goals may not only be unattainable but may also not even correspond to their desires, as evidence suggests. They may feel alienated, blamed and held responsible for their inability to meet the expected goals. Indeed, more relational forms of autonomy, with more active engagement of parents, seem to be favored — an approach often overlooked in transition care (Larivière-Bastien et al., 2013; Racine et al., 2013). In a survey conducted earlier in our research (Racine et al., 2025), we found that both youths and parents desired ongoing parental involvement in the management of the youth’s condition (parents more strongly than youths)^[1]. Accordingly, imposing values such as independence on youths could lead to their abandonment or dismissal of transition goals and programs or cause a breakdown in trust since these values may not project their own situation and aspirations into the goals reflected commonly in transition programs (Hamdani et al., 2011, 2015; Padley et al., 2023). Accordingly, better integrating youths’ values and personal trajectories, i.e., their own accounts of what matters and contributes to their flourishing into transition programs appeared as an important goal for practical purposes and research.

The objective of better integrating youth perspectives about their well-being and flourishing into transition program development led us to undertake a mixed-method study (e.g., interviews, surveys) and a partly participatory research project (Chevalier & Buckles, 2013). The study was originally intended to be more thoroughly participatory; however, the advent of the highly disruptive COVID-19 pandemic in 2020, coinciding with the start of recruitment, led to the abandonment of planned participatory focus groups. The study was reoriented toward virtual semi-structured interviews for practical reasons, as in-person group meetings for research purposes were nearly impossible. The project also required to be simplified to ensure its feasibility and manageability throughout the then unpredictable pandemic. We first reviewed the literature on the evaluation of transition programs with specific attention to whether human flourishing (operationalized following Ryff’s six-component model (Ryff, 1989; Ryff & Singer, 2008)) was integrated in transition program evaluation (Lanteigne et al., 2021). This multi-dimensional model, which synthesizes insights from psychology and philosophy, identifies six important dimensions of human flourishing: autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance. We found that the literature focused on autonomy as a form of independence (not as a relational form of autonomy) and that the metrics used were heavily focused on clinical and biomedical outcomes (e.g., treatment compliance, maintenance of appointments) with much less attention to the psychosocial aspects of youth wellbeing (Lanteigne et al., 2021). This led us to undertake semi-structured interviews where we identified 14 major concerns with respect to transition care and analyzed them in light of their impact on youth flourishing (Padley et al., 2023). We further explored these issues through a community survey with youths and parents (Ouimet et al., 2023). The survey results showed that lack of information on transition was crucial, and that information provided in short video format could be a portable and accessible means of offering information. This result supported the co-creation of short videos with youths (as reported in this paper) and reconnected (starting spring 2023) with the initial participatory design of the study. The final phase of the study (subsequent to the current research reported in this paper) involves returning to the clinics of the pediatric institution where the study was conducted to offer workshops to present the research results and videos co-created with youths. This further work is undertaken given the importance (put to light in previous research and the current project) of raising awareness in healthcare professionals of various aspects of transition care for youths with chronic illnesses.

In this paper, we report specifically on the process, experience, and procedural outcomes (based on the evaluation of the experience by youths) of co-creating videos with youths. We were inspired by an “experience-based co-design” approach (Donetto et al., 2015) to develop patient-oriented resources in the form of short videos on transition care. Short information videos have been shown to be a promising means of conveying information to patients in different health care contexts and have already been used in transition care (Coyne et al., 2016). This effort sprouted from previous results of ongoing research but represented a novel experience for all team members. We also aimed to evaluate the impact of this co-creative process on the participating youths via surveys and observations conducted during the workshops. Indeed, the project was an opportunity to learn about how to use such a method in the context of transition care and about health ethics issues. The field of health ethics – as we further explain below – is only starting to tap into the potential of participatory research (Racine, 2024). Furthermore, video co-creation with youths with chronic illnesses and disabilities represents an adaptation to more established forms of participatory video making from which we can also learn (Milne et al., 2012). We hoped these videos could help youths talk about various issues and aspects of transition in their own words, making them informative and accessible to other youths.

METHODS

We took methodological inspiration from “experience-based co-design” (Donetto et al., 2015) in order to embark on a co-creative process of developing short videos with youths and other stakeholders. Participatory video making has a long history in participatory research and a proven track record of social impact (Roberts & Muñiz, 2020). We sought to engage youths in an empowering participatory process while at the same time achieving a professional product given the goal of widely disseminating the videos in a subsequent awareness-raising effort to youths, parents, and healthcare professionals. We thus opted for a collaborative approach focused on the content and ideas developed by youths but reliant on the technical skills of a professional video-maker. Such participatory video co-creation (Cizek et al., 2019) differs from some more established forms of participatory video making. Whereas the latter typically entails participants who produce their own videos, co-creative video making implies collaborative work. In our case, we were not able to know in advance whether any youths had video making skills or the time to dedicate to these tasks. More importantly for this study, transitioning youths with chronic illnesses often have frail health and physical disabilities while they typically follow school programs. Requiring that they be actively involved in all aspects of the more technical work would have made participation nearly impossible and restrictive. (As reported below, already, with 9 work sessions of 3 hours each (except for the shorter film-making sessions), we were at the upper limit of their availability for research participation given school schedules and medical appointments (see Table 4 below and in-text content for Q4). Thus, co-creative video making allowed meaningful participation while at the same time not imposing the burden of attributing more technical work to youths. This struck a reasonable equilibrium which allowed youths to bring their strengths and their abilities in ways that mitigated some of the heftier requirements of participatory video-making (Shaw, 2012) while being adapted to youths with severe chronic conditions and disabilities.

This participatory research method aims to empower stakeholders through the project itself and promote the development of content that is representative and adapted to the specific needs of young people in transition. Youths were also involved in a process of developing a tool that could transform and positively impact their own experience (Pembroke et al., 2021).

Working group participants

Participants were recruited to join a working group composed of youths with chronic conditions who have either undertaken their transition or are about to transition. The working group was involved in all workshops supporting the development of the short videos. Additionally, an advisory committee composed of parents and healthcare professionals was formed to provide additional feedback on the short videos. The advisory committee intervened at certain strategic moments during the process. In addition, a previously existing project committee participated in meetings involving the advisory group. The project committee had a role secondary to the working group and mostly provided feedback on the process and content developed by the working group. All research activities (e.g., announcements, recruitment, workshops, materials produced) took place in French. The project was submitted to the research ethics committee of CHUSJ (approval no. 2019-2133) and of the IRCM (approval no. 2020-1064).

Building on their involvement in earlier stages of the project (e.g., semi-structured interviews and an online survey on transition care) and their expressed interest, previous participants were invited to join the working group and co-create short videos. Additionally, a research coordinator based at (CHUSJ) worked with the clinics involved in the first steps of the project and members of the project committee to identify and contact additional potential participants. An explanatory flyer (in the form of a postcard) and companion announcement (featured on video screens of CHUSJ were developed to support recruitment and provide information on the process and commitments (e.g., number of meetings, number of hours to dedicate, compensation). Compensation (25$/hour) was offered. Consent was obtained for participation in the working group and advisory committee and an independent and separate consent was sought for the use of images in the short videos featuring the youths. Thus, youths could participate in the working group without being required to take part in the videos. They were also free to opt out of specific work sessions. Recordings of the workshops were kept on secured servers of the IRCM. Data from the survey was kept confidential and identifiers removed for data analysis. Participants were identified by a randomly assigned number in transcripts and surveys.

Co-creative video development process

The development of the short videos and the meetings of the working group were inspired by “experience-based co-design” and similar participatory approaches used to implement healthcare interventions (Coyne et al., 2016; Donetto et al., 2015; Gustavsson & Andersson, 2019; Pembroke et al., 2021). The co-creative process was divided into 4 steps: (1) content and video concept development (workshops 1 through 5); (2) short video filming (workshops 6 and 7); (3) iterative development and revision of the videos (workshops 8 through 9b); (4) reflections on the process (workshops 9a and 9b) (see Figure 1 and Table 1 below). All workshops (except for those dedicated to filming) were three hours long with a short break. Additional details on the process of co-creation are provided in the results, as this was an ongoing participatory process, which evolved throughout the study, notably in light of the feedback received from participants (surveys 1 and 2) about potential redundancy in some working group meetings.

The lead researcher responsible for the project (ER) was present at all workshops in order to facilitate and coordinate the progress of the meetings, supported by a research assistant (JD). The filmmaking workshops (6 and 7) took place in person, but all other meetings were held on Zoom to avoid the risks caused by COVID-19 pandemic situation, reduce costs, and facilitate the participation of youths from various regions across the large territory of Quebec. Filming of testimonials took place at the participating pediatric hospital (CHUSJ) as well as online to facilitate participation; the introduction and conclusion segments featuring the research team members were filmed separately at another participating institution (IRCM). Separate introductory sessions were organized for the youth participants and advisory committee members prior to the official launch of the project to explain the objectives and foster familiarity among participants.

Step 1: Content and video concept development

The objective of this first step was to identify content and format preferences for the development of short videos. The data gathered during the prior phases of the study (e.g., qualitative interviews survey) were shared to provide a starting point for discussions. During this step, we identified themes, namely navigating through life with a chronic illness, parental involvement, information on transition, relations with healthcare professionals, continuity of care and messages to promote awareness for adult healthcare institutions. Five meetings were held to accomplish this objective, omitting the introductory meetings; (1) workshop 1: meeting involving only participating youths, during which the content of the short videos was developed; (2) workshop 2: meeting involving the group of youths and the videographer, during which the format of the short videos was developed; (3) workshop 3: meeting involving the youths, the videographer, the advisory group and the project committee, during which the content and format of the video clips was presented and discussed with the advisory group; (4) workshop 4: meeting involving the group of youths and the videographer, during which the planning of the filming was discussed (e.g., script, distribution of tasks, filming location); and (5) workshop 5: meeting involving the youths, the videographer, the advisory group and the project committee, during which the filming plan was presented and discussed with the advisory group.

Short video filming

The objective of this second step was to plan and film the short videos. In preparation for the filming, summaries of the statements and testimonials delivered by each participant were sent to them individually, as scripts, to help them prepare for their participation. These scripts were based on comments made by each participant during the first 5 workshops and structured following the six topics of the short videos. Two meetings were set for the purpose of filming (workshops 6 and 7) although these took the form of day-long work sessions where members of the research team scheduled one-hour appointments with each participant. Sometimes these interviews were conducted over Zoom, based on preference. Separate introductions and conclusions for each video were then filmed to reflect the content of each short video. Once all filming was done, the editing process involved a research assistant (JD) parsing out relevant content from each interview relative to the six themes selected for the short videos. The videographer worked with and assembled the material, featuring each participant in the first video (to introduce them) and then representing a broad range of perspectives and testimonials in the following 5 videos. Informed by exposure to the discussions that took place during the workshops, the videographer, in collaboration with the researchers involved in the project, designed a first draft version of two videos. The project committee was also consulted during this video development process.

Iterative development and revision of the videos

The objective of this third step was to iteratively refine and revise the content and format of the videos. The first draft version of two videos was presented to the group of youths after the editing period. The videos were adjusted and reworked according to the discussions during the two workshops dedicated to this subject. Workshop 8 was a meeting involving the group of youths, the videographer, the advisory group and the project committee during which a penultimate version of two videos was presented and revised. Workshop 9a was a meeting involving participating youths, the videographer, the advisory group and the project committee during which a penultimate version of all six short videos was presented and revised. A final editing period took place after integrating comments from workshops 9a. Workshop 9b took place with the youths who could not attend workshop 9a to present the videos. The videographer made minor adjustments to the short videos with careful monitoring by the lead researcher (ER) and research assistant (JD) to verify the language and minor video formatting issues.

Reflections on the process

The objective of this fourth and last step was to understand how workshop participants experienced the co-design of the video, what impact this experience had on their feeling of empowerment, and the perception that youths had of the different ethical issues encountered during the process. One meeting took place for this step with the goal of providing a conclusion to the project. Workshops 9a and 9b were partly dedicated to collect impressions and comments on the video co-design experience. Questions for the third survey were used to guide the discussions.

Data gathering

Beyond supporting the co-creative process and the products it yielded, we also intended to appreciate its impact and implications via short, repeated surveys as well as the analysis of the workshop transcripts. Two different surveys were used during the process (see Table 1 for the survey structures and survey questions). A first (shorter) survey was distributed twice (after workshops 3 and 8) to youths to collect their impressions and comments on the video co-design process. This survey consisted of one section with six questions (see Table 1, first section). Time to complete the survey (15-20 minutes) was offered during the workshop and participants could also continue completing the survey in their own time. A second, more exhaustive survey was distributed after workshops 9a and 9b to assess empowerment and ethical issues. This survey comprised three sections with a total of 22 questions (see Table 1, sections 2 and 3): (1) impressions and comments on the co-design experience (6 questions identical to those in surveys 1 and 2); (2): the impact of the co-design process on youth empowerment (8 questions); and (3) youth perceptions of the different ethical issues encountered during the process (8 questions). The questions in the second part were derived from different dimensions of empowerment identified in the literature (Acuña Mora et al., 2017; Small et al., 2013). The objective of this section was to evaluate the impact of the co-design process on the empowerment of youths. The questions for the third section were derived from ethical issues surrounding participatory research with children and youths (Montreuil et al., 2020). Each question corresponds to a theme(s) raised in the literature, for example, power dynamics, participant authenticity, and participant engagement and representation. This longer survey was introduced during the workshop and mostly completed after the workshop. Surveys were distributed to participants through e-mail by the research assistant during the workshops. They were completed by the participants in their own time, by computer, and returned by e-mail to the research assistant.

Data preparation and data analysis

Transcription of the content of surveys was carried out by a research assistant (JD) and validated by the lead author (ER). Responses from each participant for each of the questions were compiled and synthesized in a table to prepare an overall summary of the answers of all participants. Following precepts of basic qualitative content analysis (Forman and Damschroder, 2008), the process started with familiarization with the data by two co-authors involved in the coding, followed by the drafting of an initial coding scheme by one of the coders for each question (ER or JD), enrichment and adjustment sot the coding scheme, subsequent application of the coding structure to the data set (by JD or ER), and verification of coding by consensus agreement between coders (given the small number of content items). The final writing of the synthesis of the content was carried out by a research assistant (JD) or the lead researcher (ER), and the synthesis work was validated by either the lead researcher (ER) or a research assistant (JD) by consulting the coding. This synthesis also assessed, separately, if there were changes or an evolution (for Questions 1-6 (Q1-Q6) in experiences and answers throughout the three surveys. Illustrative citations were selected to accompany the summaries and translated from French to English (by JD) and validated by the lead researcher (ER). Answers to questions 7 to 22 were treated the same, except that given that the answers were simpler and shorter, illustrative citations were selectively pulled out.

All workshops were recorded and then transcribed. Short summaries of the workshops were prepared by a second research assistant and validated by the lead researcher (ER). These summaries focused on capturing the main topic of discussion and the main outcomes of the workshop and helped support the analysis of the surveys by providing background information and context.

We first report on the final content of the videos and the workshop-based process of co-creation and then present data regarding the evaluation of youths through the surveys and their feedback as part of workshops 9a and 9b.

RESULTS

A total of 15 youths were recruited for the working group. Two participants withdrew for lack of time and one for health reasons. Thus, the final group of participants was 12 (10 female). The average age was 18.92 (SD = 8.08; Min = 16; Max = 27). In terms of surveys, 8 participants completed survey 1, 10 completed survey 2, and 9 completed survey 3 to report on their experience. The advisory committee was constituted of five parents and one healthcare professional.

Short videos

Six distinct short videos were produced and are publicly available at https://www.chusj.org/soins-services/services-connexes/Programme-Parachute/MP/Capsules-video as part of available resources offered by a transition program of the host pediatric institution. Six topics were selected and developed by participants and the research team (see Table 2) and amounted to more than 45 minutes of footage. The first topic was deemed to be constitutive of the broader frame in which youths with chronic illnesses face transition, i.e., through their unique experiences of living with a chronic illness (Table 2). It thus serves as an introduction to the series and features all participating youths. The sixth topic, focused on advocacy for adult practitioners, is completely original since it did not stem from previous data from this ongoing study (e.g., interviews, and survey), but emerged as an important message and conclusion (Table 2).

Figure 1 displays the narrative structure of the short videos. They first start with a distinctive sound theme and visuals depicting the institutions involved and the protagonists of the video series. Then one of the research team members briefly explains the topic at hand. This is followed by testimonials of participating youths who explain the topic at hand in their own words, explore its implications, and finally offer suggestions on how to deal with the issue (e.g., lack of continuity of care, missing information on transition). A summary of the video is offered by the same team member featured in the introduction; reiterating statements made by participants during the videos and informed by the content of the workshops in the form of sequentially appearing points. The conclusion features a similar sound theme and visual as the introduction followed by mention of the study funder and an invitation to participate in a short evaluation survey (part of a subsequent study) on the impact of the study via a QR code.

Figure 1.Basic narrative structure of short videos

Creative workshop-based process

The workshop process moved, mostly as planned, from the initial focus on the development process and subsequent scripting of the videos with participants all the way to the filming sessions, revisions, and reflections on the process. Overall, youths were involved significantly in shaping the content and format of the resulting videos. The professional videographer provided technical expertise in filming youths, technical editing of the videos, and assembling the videos. These technical skills brought by an outside qualified worker allowed the resulting videos to be professional-like in quality. On their end, youths participated actively to the study (see also Table 3) such as: establishing the content of the videos by proposing the themes they wanted to address and the messages they wanted to convey (workshops 1-3); producing the scripts (the narratives and key messages) they wanted to deliver (workshops 4-5); delivering video filmed testimonials (workshops 6-7), and orienting the video editing process to add, remove, and revise the content featured (workshops 8, 9a and 9b).

The workshop process and content were adjusted in various ways to accommodate practical constraints and evolving insights about the development of the project. For example, at a practical level, the videographer produced two draft videos and sought comments on these before finalizing the first versions of all 6 videos (while this was planned as the focus for a single meeting). This meant that the last sessions also served not only to reflect on the experience of the project but also to share these videos and collect comments on them, hence the combined steps 3 and 4. Additionally, we organized two separate conclusion sessions because of limited availability of some youths. Furthermore, from a scientific standpoint, we noticed that too many workshops had been planned for the video development process (e.g., there was saturation of ideas and content and thus redundancy in the meetings 3, 4, and 5, as reported by youths, see Table 3 below) so we shortened the process which implied that surveys 2 and 3 were closer in time than expected. Finally, from a practical standpoint, since the editing process was more extensive than predicted and we also had time constraints to complete the study in order to meet the requirements of our funding and collaborators, we needed to merge steps 3 and 4.

Youth perspective on the co-creative project and videos produced

Perspectives of youths on the co-creative process of the project as well as the videos produced were gathered through (1) three partly iterative surveys to grasp the evolution of their experience as well as through (2) the last two workshops partly dedicated to the evaluation of the project and the videos.

Survey results

Survey results showed overall predominantly positive experiences and some evolution (noted below and when applicable for the repeated questions 1-6, (Q1-Q6), see Table 4) throughout the study.

Impression on workshop and description of experiences (Q1)

Throughout the project, youths continually found the project interesting, loved their involvement and learned a lot (“I love my involvement”, “Feeling of belonging in the workshops”, “I really enjoyed these last workshops, they helped me to understand many things better and to learn from them”). From the second survey onwards, youths began to find the project increasingly concrete and felt more involved towards the end. For example, they reported that “We can really see the progress that’s been made with the videos. The project is becoming more and more concrete, which is encouraging. I felt more involved in the last workshops than at the beginning” and that “The last few workshops have really brought the project to life. Seeing it come to fruition is very enriching and rewarding, as is my experience of taking part”.

Learning and take-aways (Q2)

Over the course of the project, youths continually reported learning that the transition process is far from perfect, and that there are many improvements to be made. For example, they stated that “Despite our different health conditions, [there are] many of the same concerns and questions”, that “I’m not the only one who feels stressed because of the transition. I remember that I have the right to have my parents involved in my appointments”, and that “I didn’t imagine the scope of the issues that transition could bring to those approaching it. I didn’t think the transition could be such a stressful time for patients and their families”. Some reported not really learning anything new things across workshops but taking away that are not alone in their situation: “I haven’t really learned or noticed new things in the last workshops. Until now, I remember that I am not the only one in my situation despite the differences”. Towards the end of the project, youths learned about the process of making the videos, found that filming enabled them to make observations about their own journey, and learned that it’s important to inform people about their condition. For instance, one participant mentioned “I learned about the process of creating the videos and how the team was going to edit them following the interviews. What I’ve learned so far is that we want to bring patients’ experiences to the fore and include their opinions” and another that “I learned, through a video, about the evolution of my relationship with my doctor”. As mentioned elsewhere (see Table 4), some youths did not participate as much in the group discussions, but nevertheless reported taking much away from their participation: “I never responded, but at least I listened, and it was interesting to know how other people experience this change”.

Impact of participation on life of youth (Q3)

Throughout the project, youths expressed a mixture of positive or neutral experiences. For example, they felt less alone in their own reality, seeing that there are other youths in their situation and people supporting them. They expressed that: “I’ve been able to see that I’m not alone in going through or having gone through the transition, and there are several doctors who want to support us”, “I’ve never really talked to anyone about my illness because it’s something particular. I’m the only one in the family with a major condition, which meant I couldn’t really make myself understood. In the discussions we had, I was able to communicate with people who understood”, and “Yes, I felt ‘liberated’ from the psychological weight of my condition. It helped me a lot to talk about it”. Some more – and much less frequent – neutral appreciations took the form of statements about the lack of major impact of the project, for instance the impact of the project is “neutral in my life, but I believe that it could potentially have a positive effect” or that the project would impact others: “In life in general no, but I believe that my participation in this project will improve the transition for other young people, and that is very positive”.

Challenges encountered (Q4)

Throughout the project, youths encountered difficulties in terms of scheduling conflicts, and of self-expression. For example, one reported that “Since we don’t all have the same illness and we don’t all transition from the same places, sometimes I didn’t feel that my experiences were relevant depending on the questions” and another that “Sometimes I find it hard to say things clearly and it’s often stress that plays on that. Otherwise, no real difficulty”. Scheduling was an issue, especially given school courses to attend and other obligations such as medical appointments: “I wasn’t able to attend so many workshops as I still had school” and “But the fact that I had other obligations, and sometimes emergencies, meant that I wasn’t able to be present at all the scheduled activities”.

Suggestions for improving workshops (Q5)

Few suggestions were made by youths throughout the project, but these concerned the time devoted to introductions during workshops, the time taken for breaks during workshops, the frequency of informational e-mails, the participation of youths, and the workshop schedule.

Comments, criticisms, questions (Q6)

There were no suggestions at Survey 1, but youths had more comments and questions towards the end of the project (Survey 2 and especially Survey 3). These ranged from the observation about the progressively better organization of the workshops towards the end (“I thought it was better organized at the last workshops”) to room for improvement for a future project (“I think there’s room for improvement in terms of the follow-up and ongoing running of the project. Even though I’m very happy to admit that the patients were at the heart of the project and most of the steps, there’s always a little loosening up of involvement at the end”).

The third iteration of the survey was more extensive (see Table 1), allowing for questions on whether the project empowered youths (Section 2 – Empowerment) and how ethical aspects of the study (e.g., fairness, confidentiality) were assessed (Section 3 - Ethical issues). Overall, with respect to empowerment (see Table 5, Section 2), youths reported learning about transition (Q7) and from other youths (Q12) in ways that empowered them to help other youths facing transition (Q13). They had a positive appreciation of working with other youths (Q11) and healthcare professionals (Q9). Regarding ethical issues, youths overwhelmingly reported a fair group dynamic with other youths (Q15) or when working with parents and healthcare professionals (Q16). They felt listened to (Q17), reported having received sufficient information on the project (Q18) and maintaining interest and motivation throughout (Q20), feeling their confidentiality respected (Q21) and desiring to participate in other research projects (Q19). In sum, there were few answers and comments that disagreed with an overall positive appreciation of the workshop, the project, and its outcomes.

DISCUSSION

For youths with chronic illnesses, the process of leaving the pediatric setting and moving toward adult health services is a pivotal moment (Gray et al., 2018; Toulany et al., 2022). Lack of preparation, information, and coordination of this transition has been documented as generating significant stress, anxiety, feelings of abandonment, and sadness in addition to important clinical outcomes (e.g., abandonment of treatments) (Gorter & Gibson, 2016; Larivière-Bastien et al., 2011; Toulany et al., 2022). In response to these challenges, dedicated transition care programs have been developed in various forms (e.g., transition coordinators, peer navigators) (Betz et al., 2016; Grant & Pan, 2011). Many of these programs focus on clinical outcomes and do not take into consideration the aspirations and preferences of youths with chronic illness or disability whose life trajectories are sometimes unconventional (Hamdani et al., 2011, 2015). In order to support the development of a transition program based at CHUSJ, and in line with prior survey results in the same setting that showed favorable opinions toward short videos (Racine et al., 2025), we undertook the co-creation of short videos on transition care and documented the process and experiences of youths participating in this effort. Overall, the co-creative video process which was new to our team (which otherwise had prior experience with participatory research) was successful in producing six distinctive videos in collaboration with a professional videographer. The evaluation of participating youths suggests that the experience was overwhelmingly positive, fostering a sense of belonging (breaking isolation), and empowering them as agents of information and change throughout the process. We elaborate on the benefits of co-creative participatory research based on our experience and then further discuss the realities of undertaking such a co-creative project.

The impact of such a participatory project on human flourishing

The process and results reported in this manuscript cohere with longstanding arguments that participatory research empowers and fosters inclusion (Chevalier & Buckles, 2013; Jull et al., 2017). In fields such as social work and education – where participatory research has historical footing – this argument may not need to be made anymore, but in fields such as health ethics, participatory methods are only beginning to be used, notably in areas such as mental health ethics (Abma et al., 2017; Montreuil et al., 2020) and disability ethics (Cascio et al., 2020). This oversight of participatory methods in this field is somewhat surprising since ethics can be envisioned as being concerned with matters of everyday life and experiential and existential wellbeing. However, health ethics has been largely developed for healthcare professionals (e.g., codes of ethics, ethics guidelines, ethics associations) and for specific professions like physicians and nurses but with (very) limited involvement of patients (Racine, 2019, 2024). There is no equivalent “health ethics of/for/with/by patients”. Importantly, these paradigmatic biases could contribute to making ethics resources (e.g., clinical ethics services) inaccessible or unknown to patients (Racine et al., 2024). There are several potential reasons to explain this such as ethics’ traditional focus on rather abstract and inaccessible theory as well as the lack of knowledge about participatory methods (Racine, 2024). The current study clearly shows that participatory research is effective in producing desired outcomes (e.g., awareness-raising videos). Still, the impact of what participatory research does as a process on those involved is still under-reported and nascent, especially in health ethics. In this regard, the current study and findings show that a participatory and co-creative process is a powerful lever of human flourishing since it fostered inclusion, positive relationships, and a sense of agency and efficacy to those involved.

For example, following Ryff’s six-component model (Ryff, 1989), participants reported that the project encouraged them to inquire more about the transition, to actively prepare for their transition, to obtain information and to gain confidence in expressing themselves and talking more openly about transition. These are all crucial skills to develop autonomy and independence. In matters of positive relationships, participants positively appreciated their experience of working with healthcare professionals. They reported this as contributing to their confidence in healthcare professionals and feeling supported. Furthermore, participants reported that working with other youths helped them not feel alone while their contribution enriched the project. In terms of personal growth, participants reported in different ways that the project helped them reflect on themselves, to feel in a position to inform others living with a chronic condition while fostering learning. In terms of efficacy and agency (“environmental mastery”), some youth participants reported that the project cultivated skills which were useful for their transition such as voicing their concerns while others qualified this but nevertheless thought they could help others in a similar situation. Participation in the project fostered a sense of belonging and of contributing positively to the welfare of others, thus contributing to their “purpose in life”. The project helped to transfer the experience of illness into something which can help others. Finally, several participants explained that the project, notably its participatory methodology and the role that this granted to them, made them feel accepted as people, notably by providing information about what they experience (via the videos). Importantly, learning that other youths were facing similar situations and encountered very similar questions was greatly appreciated. Such self-acceptance is a cornerstone in entertaining a positive outlook on oneself and onto others. These are all crucial dimensions of human flourishing, common to several accounts of this cardinal ethical orientation (Csikszentmihalyi, 1990; Ryff, 1989; VanderWeele, 2017). In fact, even though we did not plan on the project to break feelings of isolation, this was truly one of the main outcomes in the experience of youths. The valuing of youths in this entire process was also a notable outcome. Importantly, as a final note, prior research has suggested that in-person groups meeting (e.g., peer groups) to prepare transition may not be preferred modes of youth as a form of support and intervention (Racine et al., 2025), but our experience suggests that groups structured around positive exchanges could eventually gain the adhesion of youths.

These findings give support to furthering participatory research with patients on health ethics topics (Racine, 2024). Ethics should be a place where patients can spell out clearly what matters to them (and why) in their own words (Walker, 1993). However, the current focus on the ethics of healthcare professionals may play against patients who do not wield technical ethics language (Fiester, 2015). This project invites stepping away from these more scholarly and traditional approaches to ethics in order to explore the contribution of participatory research and a nascent living ethics orientation which underscores the need for accessibility and active participation (Racine et al., 2024). Indeed, the current project demonstrates the value of involving people with lived experience in the design of services and resources that impact them. Co-created resources such as these videos may also have value in informing youths and families as well as healthcare professionals. This will be evaluated in forthcoming research

The reality of participatory research: Learning “the protocol of life”

At the same time as the benefits of participatory research stand out very clearly from our experience, this required several learnings along the way. As much as participatory research is a science and an orientation in developing genuine knowledge through inclusion and action, it is also an art based on various skills which help create conditions for exchange, active participation, inclusion, voicing of concerns and points of view. In our experience, we realized that creating curiosity and excitement about the project was necessary. Relatedly, the fact that the project focused on creating audio-visual material (instead of for example written material) was likely helpful in unleashing perspectives and voices. In fact, we found that the research staff tended to feel more comfortable in the group discussions and were surprised to see how youths felt at ease being filmed in comparison to the research staff. Some youths who participated more marginally in the group discussions, actually played a major role in the videos and provided lengthy and elaborate testimonials. We also learned that – given that producing video differs from that of written materials such as guidelines or more static visual content – the process of producing and editing (e.g., for minor video typos) required thoroughness and constant vigilance to meet research goals. Indeed, videos produced for purposes of inclusion differ much from videos produced for marketing reasons and this required active oversight of the research team to ensure that every agreeing youth was featured in the videos, that everyone was introduced, and so on to reflect the intents of the project. This involvement and the engaging participatory required more attention, time, adjustments, and energy than initially planned. However, the project was a wonderful experience for both youths and research staff, and it was truly worthwhile.

LIMITATIONS

Participating youths represented a very small group of individuals even within the setting of a given pediatric hospital. Their high motivation for participation and involvement, which is required for such an engaging project, may not reflect those of other youths and constitute a potential bias in their perspectives. Although we attempted to recruit energetically and seek a diversity of conditions and patient backgrounds, we could not achieve male-female parity. The well-known difficulties in making qualitative research accessible and attractive to males could be at cause (Affleck et al., 2013). Further, not all youths completed the surveys since it was done on a voluntary basis. Also, we cannot exclude the effects of social desirability bias on the evaluation offered by participants. We also reported that some youths preferred to be more in the background during the workshops, while others seemed more at ease during the filming sessions (and vice versa). Youths were not active film makers, but they made important decisions and contributed game-changing ideas on the format and content of the videos. The videographer worked within this framework, and the research team ensured that the orientations decided upon were respected and implemented. Finally, although we did our best to efficiently use research resources during a difficult period, additional human and financial resources could have enhanced different aspects of the study. For example, we are heavily reliant on the institution with whom we work to promote the videos, but we would need extensive investment to get the word out across institutions.

CONCLUSION

The period of change from pediatric to adult clinical settings is often a challenging time for youths with chronic illnesses. Dedicated transition programs have now been developed, and transition has become a priority of major national and international associations dedicated to youth health and wellbeing. Still, closer attention to how these youths envision their own wellbeing and flourishing is rarely explicitly part of the evaluation of these programs which remain generally under-evaluated. To help address this gap and support the development of a tailored transition program in a pediatric hospital, we undertook a participatory study to co-create short videos with youths. The results, both in terms of the ability to produce videos and offering a rewarding participation process, were successful. As a resource, these videos could help raise needed awareness of various aspects of transition. In our future work, we will report on how we use them as well as the overall results of our ongoing research to raise the awareness of clinicians in various programs and engage them in thinking about collective actions and implementing specific clinical responses.