Appendix C

Interview Transcript: Participant 3C
 

Interviewer: How did journey mapping come to the attention of your organization and what was your initial reaction?

Participant 3C: We've been quite familiar with journey mapping for a number of years. My organization has a pretty broad mandate, and we do a lot of different stuff related to quality improvement. And one of the core parts of quality improvement is engagement with patients and families and communities. So, the different tools for doing that. Whether it's a conversation like this, that we're having, you know, a focus group or participational long project or journey mapping has kind of been conceptually known and shared and taught through our organization for, over a decade probably. We did support others to do journey mapping, based on some of those core principles. But we ourselves, to my knowledge, did those first ones that you saw. They were the first that we ourselves led. The nature of our organization is generally supporting others to do the work. We're more consultants rather than coming in and doing it for people. It's more of a community development approach we take with people working in the system. But these were some examples where we did it ourselves.

And actually, I was really surprised because I had known conceptually about journey mapping, but this was the first time that I was designing and leading it and doing the whole shebang, obviously not alone. But I was really surprised that there weren't more toolkits, resources, case studies, things out there published. So, it's a, it really is a gap. And that's why we felt very strongly to share our journey maps and also share a little bit about what we did in it. You know, not that it's a full toolkit, but just that definitely is a gap. We get questions and it's on a maybe eventual to do list. We definitely get questions from people so there's an appetite for it.

We did the journey mapping related to primary care, but more specifically to opiate treatments, with not a complete focus, but more of a focus on rural, semi-urban and remote areas versus some of our urban cores. So, it was a little bit more focused. I participated in the journey mapping, but not as a participant; I was the lead designer and one of the facilitators during the session. And then with a small team, the ones who did the analysis and the dissemination [of results] afterwards. What we heard loud and clear was [that people needed] more choices and that the people really being the ones who are establishing their goals for care differ because some people's goals for care are to get totally off of any sort of, the street supply, off of a medicalized supply, everything. And for others, it's different. Their version of success was I'm on opiate agonist therapy and I'm going to stay on it and my life is stable and this is my success, [which is] fair enough.

Interviewer: Were any of the same participants retained through the different journeys or did the organization solicit a new group each time?

Participant 3C: From the first mapping to the second? No, we didn't. However, a few of the providers and organizational reps did participate in both, but it was not very many. The vast majority were new because it was a pretty specific focus. To my knowledge, none of the peers or people with lived experience participated in both.
 

Interviewer: There was a notable difference between the delivery of the first and second journey maps with the second seeming much more focused and succinct. Can you comment on this?

Participant 3C: Oh, well, I'm very happy you found that. I was not involved in the first one; I was with the organization, but not on the project team. But they were different purposes. I think that's kind of something that I really took away loud and clear from doing that. The first thing you really want to do before you start the mapping is think about why am I doing this? Like, what am I going to be doing with this information? Because that really deeply impacts like the design of it, the types of questions you ask, and then what you inevitably put out into the world. So, in the first mapping, again, this is my understanding, not having been closely involved in the project team, but it was much more at a system level, it was trying to identify where are we going to put our system priorities and come up with recommendations for those versus the second initiative.

It's like we knew what we wanted to do. We wanted to optimize out in primary care. We intentionally made it well, hopefully, a lot more reader friendly, a lot shorter. We have the [original] journey maps like the [first] ones you saw that are a bit messier [because] they go here than they go there. We have all that and we have all the notes, and we use that to design the program because that was the purpose too; journey mapping to design a program and to share information with the ministry. But we didn't put those out because we're like, well, what is helpful for people? So, we called them experience maps versus journey maps that we put out. And it was less like, okay, this happens, that happens, that happens, that happens. And it was more like mapping a question. So that hopefully came through, the question of what matters to people on opiate treatments and what is the experience of a provider trying to do this for the first time and then a system level one. But it was different. It was intentionally different.
 

Interviewer: Your organization used professional graphics to disseminate your findings. Was a visual facilitator present during the sessions or was the data sent to them later?

Participant 3C: Yeah, it's pretty incredible. What he brought, I think, was helpful because, there's the graphic design, but he was really part of our design team even before we did it. And it was some of the graphic facilitator's provocations that helped us to land on the questions. It's kind of like, so what? Like, what are you trying to map? I know traditional journey mapping is kind of like, take me through chronologically what happened. This was kind of chronological, but we were more interested in specific questions and experiences.
 

Interviewer: Can you describe any specific mapping journeys that were really impactful or powerful?

Participant 3C: My God, they really all were. I would say a huge distinction between the first and the second sessions was the first one was in person and the second one was entirely virtual. We had never done a virtual journey mapping session before so that was a pretty big distinction. And there's pros and cons. But it actually worked. I feel like we did the maximum amount of time you could do. I probably knocked off an hour of the day, but it totally worked in terms of like accessibility. Like there's accessibility on both sides, right? Because for some people, they're not, technically savvy or if they don't have access to a computer. But what we were able to do is partner with local community-based organizations so that they could come in. They set them up on the computer with a peer support worker.

It was a bit of a risk. And I was kind of worried about some of those safety considerations for people, because you're not there if they're, you know, they experience like a big emotional response. But we had a counselor there and whole mitigation plan. So anyway, there's always risk, right? It's always a balance of risks. But in terms of accessibility, we did hear from a lot of people, like being able to have a cigarette, do what they needed to do, like not have to wait for a break, was actually a lot more comfortable for them to not be in a room with a bunch of people. The one thing that we did lose out on was the opportunity for the providers and the people lived in the experience to create relationships. In the first session, that was one of the goals, that it was more like networking--relationship building. So, if you want that, it's different. So again, understanding your goals is important. But back to your question, I can't say that there was one, it was, they were both, they were all incredible. And I would say the experiences that people have in living experience were incredible. And the providers as well, because the people working in this space are like okay, this isn't going away so I swear, they are badass. I've worked with providers across the continuum of care. And people who work in substance use are a different breed. They are amazing. So many of them are just so amazing.

Interviewer: Did your journey mapping incorporate cultural safety as part of your trauma-informed practices?

Participant 3C: Yeah. So that was like, they were both really incredible. And I can't say I would pick up on one specific story because it really was many, but maybe one thing that this just prompted me to think about was we divided people into groups just for workability. And we did have the people living experience who identified as Indigenous as a distinct group. And that was done like in consultation with our director of Indigenous health and with the peers themselves, like in conversation beforehand to talk through it, feel comfortable and the rationale for that. The rationale was not to segregate, to separate. It was to be able to recognize that it is a distinct experience. And at least here and I'm sure elsewhere, there are inequities in terms of they highly represent, like the high representation in terms of toxic drug harms. So just wanting to give that space for comfort for those who wanted it and also just be able to dive into some of the distinctions was why we made that choice.
 

Interviewer: Can you expand on your trauma-informed practices or what you referred to as a mitigation plan?

Participant 3C: Yeah, so I would say thinking about it before, during and after. So beforehand, I had a conversation with every person who was going to participate. I have to go back and look at my notes but I'm pretty sure I talked to everyone on the phone. Maybe there were one-offs that were just email and they were at least offered a phone call. But I'm pretty confident that I spoke to like 99% of people on the phone beforehand just to introduce myself and share a little bit about what they can expect and mostly ask them the question specifically: what would make this a safe and meaningful experience for you? We got to talk about things like access, and what actually came up most of all was the virtual, how to make use of the space and Zoom and things like that. And we did offer honorariums for their participation. So, this was an offer, like they didn't have to say yes, but we did offer cash honorariums for time for the people living experience.

For the providers, those who are salaried, they did it as part of their role. But if they were a practicing clinician that was stepping away from paid clinical time, we were able to compensate them for their time. So that was lucky. That's not always the case to have funding to do that. But yeah, so that was part of it. And then I sent everyone the agenda and the questions they can expect in advance. So having that like written on paper as well, what's important. All those things, I think beforehand, are almost more important or as important as what you do on a day. So then on the day, nothing was a surprise.

There was at least one familiar face and they kind of knew what they were getting themselves into more. And then for people with higher needs, like for support, like I said, were actually joining from community-based organizations or a few people where there was a peer coordinator there that I was in touch with who was there with them. So that was really helpful. And for another person, they had a support person with them and that was totally fine. So, the virtual was kind of, again, pros and cons, right? But there were actually quite a few pros.

Then in terms of the safety plan, we had had a counselor on our virtual sessions before for different types of sessions we've done. So, we reached out to them and although we didn't have them there the whole time, we met with them in advance, and they walked us through some mitigation plans. So, if this happens, if that happens, so they were there over lunchtime and people knew when they were going to be there. They were there for the lunch break and they were there at the end of the day. And you could hop into a breakout room if you needed to. We also had, written in the chat, some of the support lines and things you could reach out to. In the end, no one accessed the counselor, but I think it was less about people actually accessing them versus knowing that they were there. And we also had a First Nations elder open the day and stay with us throughout the day. They were in the breakout room with the Indigenous peers and then they closed at the end of the day. So, they were with us all day and available for people if they needed it. But again, no one actually took those supports up, but I don't even think that's really the point always. It's just knowing it's there.

Afterwards, I sent an email follow-up to people because people kind of scatter all around, but there was the opportunity to have a conversation afterwards with me. I think maybe one person took me up on it and then we were in touch by email, and they knew, again, they knew exactly what to expect. Like we were in touch by email monthly until it was published, and they had the opportunity to validate the draft before they went out.

Interviewer: Can you tell me about the funding for your journey mapping projects?

Participant 3C: We had provincial funding for this. I think the first two mappings were just from our base funding. We are a provincial government organization, so we get funding on three-year mandates. But for this project specifically, it was part of a primary care collaborative. It was about accelerating improvements in treatment care and primary care so that we actually received specific project-based funding for that whole project, not for just the journey mapping, but the mapping was a piece of it. And that was from the provincial government.

And meanwhile, there's a lot of things around payments, specifically for peers. Not everyone might want it [payment] because we did ask that question at the end with specifically the peers, like around, how is this for you? The process of engagement was generally very positive. But one thing that we didn't anticipate was, one person said, this actually was a very generous honorarium. They aren't always, so that's great. For some people receiving a lump sum of cash in hand can be triggering. So, I think that's important to ask people--to not make the assumption that that's what they want. So, it's like, what would you like? Is there something other than cash? Exactly. And of course, at the end of the day, people make the choices they're going to make. But that is why you ask people because they know better than you [what is good for them].

Interviewer: Did you find that your participants, through the reflective nature of journey mapping, get a different sense of themselves, like did it have therapeutic value for them even though we know that the research was not intended as therapy? What other motivations might someone agree to embark on a journey mapping session other than an honorarium?

Participant 3C: Well, I think for the peers and also the providers, everyone involved, it was just passionate people, wanting to make a difference. So, I think knowing where the information was going and how it was going to be used was the biggest motivator. So, us spending that time upfront asking, really, what can we commit to? Like, what are we going to do with this information and not over committing and over promising so people can make that choice.

There is a lot of diversity in terms of the people that are living experience that came. I didn't have conversations with all of them afterwards, but there were a few that actually stayed on-board and supported the collaborative that's just finishing this September now and they joined our advisory group. There have been faculty, that have spoken at sessions, things like that. And one in particular, we originally met through the journey mapping and now he's just such an incredible partner to us. He spoke a lot about how restorative being involved in quality improvement in these engagements are for his recovery. He's now six years removed from his opioid addiction. And so, he has shared a lot about the therapeutic value of this and the self-esteem and taking something that was a source of shame that he did everything in his power to not talk about. And then the irony of, “I'm now centering my life around this, you're talking about this thing” [that was not to be talked about before].
 

Interviewer: Is there anything that you would do differently in future journey mapping sessions?

Participant 3C: I think that I would have, because of the virtual nature of it, [shortened the day] but everyone hung in there. There was no attrition and there was positive feedback on how it went. But it took a bunch of facilitators on our team because we had three people in each breakout session. We had the verbal facilitator; we had a note taker, and we had someone doing the mapping. So, it took a lot. And then we had five different breakout sessions. It took a lot of members of our team. So, checking in with them afterwards, I would have shortened it by maybe an hour. It was a long day for people, but I didn't actually hear that feedback from the participants.

We're involved in supporting the community action teams here and also peer workers so to bring it back to the journey mapping, triggering people was a huge consideration because you're bringing people together to talk about, [substance use] and they're all at various points. It was important to us to have people from diverse backgrounds and diverse situations and at various points in their recovery. So how do we have that conversation for hours? You know, in a way that isn't going to cause them harm and they're going to feel like safe and comfortable. So that was a really big consideration for sure.

We did give them quite a few breaks, but I would do no longer than we did.