Finding harmony within dissonance: Engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics

Abstract Background Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome ‘us vs them’ thinking. Objective To assess the extent to which an experience‐based co‐design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. Methods A retrospective case study of EBCD data in which transitional‐aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co‐designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co‐design event, co‐designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. Findings The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co‐design event, where the focus was on the remaining ID processes: building cross‐cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co‐design. Conclusion Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.


| BACKG ROU N D
Experience-based co-design (EBCD) 1-3 is a best practice approach to mental health system improvement 4 that grounds service design in the experiences of service users, their family or other caregivers (caregivers), and service providers (providers), who work together to co-design service improvements. 1,2 EBCD is increasingly being applied in mental health research [5][6][7][8] as it strongly aligns with a recovery orientation 9-13 by placing lived experience at the centre of mental health service improvement. 14 Deeply entrenched ideological divides among service users, caregivers and providers may pose a challenge to collaborative patient and family engagement in mental health research. Key tensions 14 include the emphasis on treatment vs promoting positive mental health, 15-20 extent of family involvement 21,22 and adopting a recovery vs biomedical approach. 23 Issues are exacerbated for transitional-aged (16-25 years) youth and their families, who often experience abrupt service termination at age 16 or 18, long waits before transitioning to adult services and culture shock upon entry into adult services. 21,[24][25][26][27] Often youth feel disempowered due to stigma and age, caregivers feel shut out of adult services, and providers feel defensive due to system constraints. These collective experiences may result in deep mistrust of services 28 and emotionally charged interactions between the perspectives. 2,5,28 Engagement processes may break down if the historical relations between perspectives are not considered.
In the diagnostic phase of EBCD, 1,29 researchers engage service users, caregivers and providers to understand their service experiences, 1,2,29 often through ethnographic observation and individual interviews to understand the emotional highs or lows where experiences are powerfully shaped. 1,29,30 These 'touchpoints' are discussed in separate focus groups to determine improvement priorities for each perspective, often by experience mapping. In the second, intervention phase, mixed participant groups collaboratively generate visual prototypes 31,32 of service improvements through a facilitated ideation process 7,29,30 at a co-design event.
Often a trigger video (compiling participants' perspectives) kicks off co-design discussions. 7,30 Implementation and summative evaluation phases follow, alongside formative evaluation. While helpful resources outline EBCD procedures, 5,33 how to embrace discord while fostering harmonious co-design is less clear.
Shapiro 34 states that traditional approaches to negotiation typically fall short in situations of emotionally charged conflict where issues of identity are at stake, by failing to change fundamental group dynamics. He argues that fostering integrative dynamics (ID)-the 'emotional forces that pull you toward greater connection'-can help to overcome conflict and heal broken relations (p.134). 34 Shapiro argues that people can move beyond opposing perspectives and the 'duality of us vs them' (p.134), 34 by focusing on the shared issue or problem to be worked through, 35 even when the core identities of different groups 'may feel completely incompatible' (p.131). 34 Adversarial relations become collegial through an emotionally intense process (relational conversion) that shifts the emotional space towards a cooperative, compassionate and open communal mindset, allowing each group to imagine new creative approaches in how to relate to one another 34,35 with the most stable connection being 'transcendent unity' as a state of mind (p.134). 34 Throughout our research programme applying EBCD in youth mental health, our research team has witnessed such mindset shifts.
In these moments, the co-design atmosphere is dramatically altered from perceived separation, power imbalance, wariness and mistrust, to mutual understanding and respect, where each perspective values the other's contributions in co-designing effective improvements. Deliberations at an international symposium 28 echoed these observations; however, exactly what enabled such shifts is not well understood and is beginning to be explored. 36 Our proposition is that the relational conversion discussed in ID can be achieved via EBCD processes during mental health engagement activities. We conducted a retrospective case study in order to test this proposition.

| Retrospective case study
The myProtocol EBCD study, conducted from February to May 2019, was selected as an illustrative case 37 for retrospective analysis wherein the risk of emotional conflict was high, yet relational conversion appeared to be achieved, even though ID concepts were not a part of the study design. The myProtocol objective was to inform the development of a transitions protocol from child to adult mental health services for youth aged 16-25, involving a Working Group (WG) of 26 service organizations in a Local Health Integration Network (LHIN) in Ontario, Canada. The retrospective analysis, conducted between June and December 2019, explored whether and if so, how, ID concepts contributed to relational conversion in the myProtocol EBCD processes.

| Conceptual framework
Consistent with recommended practice in case study research, 37 we adopted a guiding conceptual framework (ID model) 34 and used pattern matching of data to the core concepts of this framework. 37 There are four key iterative processes within an ID approach to resolving K E Y W O R D S experience-based co-design, health system improvement, integrative dynamics, mental health research, transition-age youth, youth and family engagement identity-based differences. The first involves uncovering how each side views themselves in relation to others, referred to as their 'mythos of identity'. The second is to acknowledge the narratives of each group, working through emotional pain. The third builds authentic connections among participants. The fourth recasts the relationship among groups as 'a mutually affirming narrative' resulting in more harmonious interactions that 'strive toward transcendent unity'. 34 By acknowledging the past and working though emotional and structural transformation in this manner, the future is fortified by considering new scenarios for improved relations.

| EBCD participants and recruitment
There were a total of 30 participants who attended either a focus group (n = 24) or the co-design event (n = 25) or both in the myProtocol process (See Table 1). Participants were recruited by the research team with assistance from WG members. Balanced numbers of participants across perspectives and LHIN subregions were invited to participate. Table 2 provides an overview of the data sources. Three 2-hour webbased focus groups were held by perspective, followed by a 5-hour in-person co-design event. Key themes were synthesized into the 'continuity vortex model' which is a guiding framework for the transitions protocol. All participants were invited to provide feedback on the draft model by email or through an online focus group, and revisions were incorporated. In addition, 23 evaluation surveys (79.3% completion rate) and 9 evaluation interviews (3Y/3CG/3P) were completed about participants' EBCD experiences. Focus group and co-design event discussion transcripts illustrate how ID model elements were encompassed in the EBCD stages. Evaluation interviews demonstrate alignment of the overall experience with ID concepts. A semi-structured guide was used in the author's reflective discussion to probe directly about ID processes and principles (see Appendix 1). Written responses to the question 'What would you tell someone about the co-design process you experienced that resulted in the Continuity Vortex model?' were provided by one youth (AC) and one caregiver (TM) co-author.

| Data management and analysis
Audio recordings were transcribed verbatim by a professional transcription service and de-identified, for example Y09FG [(Youth/Y; Caregiver/CG; Provider/P)/number/ source]. Data analysis was iterative. The research team (GM, JG and AM) deductively coded EI data using the categories of the ID model, searching for confirming and disconfirming evidence, allowing for emergent themes and discussing discrepancies until consensus was reached. Two authors (GM and AM) coded the AR, WR and CV data using the same TA B L E 1 Overview of participants who attended myProtocol process Developed by research team with written feedback (n = 8; 1 youth, 3 caregivers and 4 providers) and online focus group (n = 3; 1 youth and 2 caregivers) An overarching model that combines key themes from co-design event and focus groups as a basis for future work to refine and implement a transitions protocol for the LHIN 4. Evaluation interviews (EI)-myProtocol study 9 (3 youth, 3 caregivers and 3 providers) To understand and improve experiences of engagement processes (focus groups and co-design event) 5. Author reflection discussion (AR) 1 youth, 1 caregiver and 2 research team members To explore extent to which ID principles and processes were experienced by EBCD participants 6. Written reflections (WR) 1 youth and 1 caregiver To reflect on overall experience from respective perspectives.
a Same participants across the focus groups and co-design events with minor variations due to participant availability at either event.
codebook. Following reviewer suggestions, we revised the codebook (Appendix 2) to fully explore ID processes across EBCD stages and applied it to an expanded data set (FG and CD), triangulating across data sources to enhance rigour. [37][38][39] The study received ethics approval from the Hamilton Integrated Research Ethics Board (study #1982). We used the COREQ checklist as a tool to review and guide the reporting of our methods and findings of this manuscript.

| Core processes of integrative dynamics achieved through EBCD processes
Two ID processes (uncovering the mythos of identity and working through emotional pain) were primarily associated with the separate focus groups in the first stage of our EBCD process. The remaining ID processes (building cross-cutting connections and reconfiguring the relationship) were primarily associated with the co-design stage (see Figure 1). We present our findings for each stage in turn.

| Acknowledging the past at online focus groups
The core ID processes of uncovering the mythos of identity and working through emotional pain were evident during the sharing of touchpoints during the focus groups. Figure 2 illustrates the identification of a touchpoint-a hospital visit for a youth suicide attempt-shared at the caregiver focus group, as the participant shares emotional pain and uncovers core elements of the caregiver and youth identity mythos.

Uncover the mythos of identity
For youth, feeling frightened, alone and blamed by the system were repeatedly heard. Some felt like prisoners, who were not even allowed visitors, I was put in [hospital] psych ward … when I was 15. … So those three and a half weeks, I was not allowed to see my parents. My workers didn't come and visit me.
No, I was literally locked in the psych ward. [Y06FG] Others described feeling blamed for being manipulative when admitting suicidal ideation, … That was essentially me saying please don't leave me alone. And they looked at me and said, "I'm sorry, we don't tolerate threats here". And they closed the door and walked away. [Y03FG] Youth also felt blamed for not trying hard enough to find services during the transition period, and were asked 'Well why didn't you come Providers described trying to assist youth through transitions, but having their hands tied by a disconnected system, …they kind of hit 18, they age out, and service is done.
I know we've done our best to kind of reach out and try to foster that relationship [across services], but it isn't happening at the rate we expected. [P05FG] Very different care models between child and adult services also [P03FG]

Working through emotional pain
For youth, the focus group offered a place to share feelings of overwhelm, frustration and anger, with others who had similar transitions experiences. One youth described such feelings when attending an adult group they were not ready for, [Y02FG] The focus group was also cathartic for caregivers. One caregiver was moved to tears sharing feeling insulted when a service provider seemed to suggest their daughter was a 'lost cause', We took a giant step back in child services because we had a psychiatrist that told our daughter that there was nothing they could do for her… we were very, very upset. So it wasn't only getting services … We were going backwards and our daughter took that to heart and still holds it to heart. She has a hard time trusting anybody because of that statement. [CG03FG] Hearing similar experiences from other caregivers was reassuring, … the support that I felt from other families or care- givers. Listening to what they had been through, the roadblocks they had experienced reassured me that I was not alone. Their support and comfort helped me through difficult moments.

[CG-AR]
For providers, there was less emotional pain to work through; however, there was considerable frustration with the lack of responsiveness of the system.

…
[the] waitlist is so long that they're not able to get into services at all, so the referral source will say, "You know what? It's not even worth completing the referral." And then we have nowhere to send them. [P07FG]

| Fortifying the future at the co-design event
At the co-design event, emphasis shifted from acknowledging the past to fortifying the future. Figure 3 illustrates how themes of building cross-cutting connections and reconfiguring relationships to achieve emotional and structural transformation were identified in the discussions.

Building cross-cutting connections
The process of building cross-cutting connections began with showing the trigger video. For some, it was difficult to watch, but F I G U R E 3 Co-design to achieve emotional and structural transformation by building cross-cutting connections and reconfiguring the relationship nonetheless effective in making the challenges 'more personal' [Y02EI] and inspiring collaboration for improvement. This was the first time I've been with a group that was led by youth or those involved and I thank you. I thank you for that. [CG08CD] This was followed by a round of applause in the first visible demonstration of the developing feeling of transcendent unity. 34 Following a networking break, participants worked in mixed groups in the next co-design round, creating opportunity for frank

Reconfiguring the relationship
All prototypes acknowledged the tumultuous changes that youth experience in their lives and service systems, and used metaphors to [P07EI] At the end of the mixed group process, everyone had a chance to comment on the prototypes, clarify different elements and add new ideas during a plenary presentation, so that '…everyone was on the same page before leaving,' [Y01EI]. Youth felt empowered when their ideas were supported and built upon by the whole group.
We actually had the idea of a youth passport and the idea grew and grew and got tweaked and we got a cool amalgamation at the end of it … It was nice to face the group and see their heads nodding in agreement. [Y03EI] Again, participants felt a sense of transcendent unity, [Y-AR]

| Achieving emotional and structural transformation
The ultimate aim of the ID process is emotional and structural transformation. From an emotional perspective, it was 'imperative to address the frustration that each group is experiencing with the We identified three key themes in the EBCD process that facilitated ID. First, the phased approach of EBCD offers an opportunity to work through select ID activities within one's own perspective before working across perspectives. Working through emotional pain and identity mythos mostly occurred in the diagnostic phase (focus groups), where participants felt empowered by discussing touchpoints and learning they were not alone in their experiences. have helped in building cross-cutting connections at the co-design event. 36 We anticipate various ID processes will be revisited during subsequent EBCD stages where details of CV model implementation are co-designed by participants.
Second, a gradual approach to integration of groups during EBCD prototyping activities was viewed as an opportunity for fulsome discussion and finding voice in one's own group before working across perspectives. Like the separate focus groups, the initial carousel approach provided a 'safe space', 41  Third, the power of prototyping 31 in bringing divided groups together was dramatically apparent. Following a brief yet compelling acknowledgement of past pain through the trigger video, participants quickly moved towards fortifying the future through prototyping. As one provider observed, it was easier to focus on visionary metaphors than the details of implementation, which could be divisive. 14,42 This suggests that a continued focus on ID concepts may benefit the next EBCD stage implementation processes.
Furthermore, a policy-maker and co-author (JG) found the exercise of exploring the metaphors inherent in the prototypes to be incredibly valuable in understanding the nuance of the messages being communicated by the participants, which is critical to inform policy.

| Strengths and limitations
This work makes an important contribution to the engagement literature by exploring the interpersonal and intergroup dynamics that occur when engaging youth, caregivers and providers in mental health research using the EBCD approach. It also shows how the steps of the ID model align with two key EBCD processes, along with the benefits of a gradual approach to integrating groups in co-design, and the helpfulness of prototyping. A limitation of this work is that it is based on a retrospective analysis of a single case.
A challenge in examining subjective experiences of relational shifts retrospectively was that initial questionnaires and activities were not explicitly designed to probe the ID concepts. Nonetheless, these were witnessed in the data from the EBCD process and were validated in the author and written reflections. To further enhance rigour, the ID themes were analysed based on a guiding conceptual framework using a pattern matching approach that allowed for emergent themes, and were triangulated across multiple data sources and perspectives. Furthermore, this study builds upon a programme of research in which similar shifts towards integrative dynamics were subjectively experienced during EBCD processes.
Nonetheless, it is not known to what extent the findings from this case can be generalized to other contexts.

| CON CLUS ION
Our findings suggest that the EBCD processes aligned very well with the ID model in this case, suggesting how harmony can be built among groups with a history of emotionally charged conflict.
Mental health researchers may benefit from giving explicit consideration to the ID principles and steps when planning and executing engagement activities. In particular, it is essential to create an open, compassionate and cooperative mindset which allows not only a 'safe' but a 'brave space' for dissonance in deliberations to occur.
Engagement activities that strive for harmony, rather than victory, feature gradual integration and prototyping, may not only reduce the risk of 'us vs them thinking', but may also promote integration across perspectives and a fundamental restructuring of relations among participants where there has been prior discord.

ACK N OWLED G EM ENTS
The authors would like to acknowledge Aly Kassam for his excellent research coordination and support throughout the project.

CO N FLI C T O F I NTE R E S T
None declared.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.