Table 4.

Themes on challenges met by peer support programmes and how those are addressed, from key informant interviews within 7 peer support programmes.

Topic	Representative quotes describing challenges and how programmes address them
Funding	“We’ve had so many challenges with funding that if we could find a way to really give some validity to the parent to parent, peer to peer model, that would give us the ability to fund raise. That would be huge because it is really something that I feel very, very valuable for families. And they report that it is, that it’s very helpful for them. They don’t feel so isolated, their confidence has increased. But yet, it can be really challenging to keep a program running just financially, sustaining it.” (D, PL)
	“The retreats are very expensive. … it can go up to $20,000 for one retreat, so [the program] has latched onto some very philanthropic donors who help out with that. In fact one gentleman who lost his wife at a young age, to breast cancer, had come to our couples retreat one year and he had signed up to stay in that retreat into perpetuity financially. So usually it’s because we have touched someone with the support that we do provide that makes them want to step up and help us financially…” (F, PL)
Barriers to supporting another person	“…people don’t usually wanna talk about tough subjects … sometimes it can be difficult to talk to a complete stranger about it, especially if you’re not confident in understanding” (D, PS)
	“But it’s something that you have to be in acceptance with and you have to, you know, feel like you need the peer.” (E, PR)
Boundaries and emotional entanglement	“I get emotionally upset but I have learned and we are in training for that. I have talked to a lot of people, I feel sorry for a lot of things that people are going through, but I try not to get too emotionally involved in it. I try to stay on a more professional side of it.” (A, PS)
	“…there’s times when it really gets to you because it brings back everything you had been through. But they know that and talk about that in the training and there’s not too much you can do about that and it’s just part of it.” (E, PS)
Fidelity to the programme	“When we hear about things that are going on out in the field that are not true to the model, it’s typically from another teacher or mentor or trainer in the community who hears about it and calls us.” (D, PL)
	“There is a support structure. We … at the national level look to the state organizations to provide that technical assistance and oversight for the affiliates and the leaders that are actually doing the classes, teaching the programs, running the support groups, et cetera. We do have a non-certification process and a de-certification process. So we do have a process where if, for example, I’m a state trainer and I’m doing a training here in Mississippi and there are people who come to the training and I just don’t really think they’re ready to teach a course, there’s a process in place for me to work with my affiliate to let that person know that, you know, why they don’t meet the criteria and what recommendations are made to either bring them up to speed, including a recommendation to just, you know, ‘You need to go back out and take the class again and come back next year.’ There’s also a process for decertifying a teacher or a support group facilitator where if for some reason it comes to the affiliate or the state organization’s attention that maybe the person is not doing the best job.” (B, PL)
Geographical restrictions	“Our program is located in a larger city, …, but we also serve five surrounding counties that are more rural. And it is very challenging to provide services in those counties … So that’s why a lot of our contact is done over the phone.” (D, PL)
	“Some of the other challenges are just geographic … they might wanna meet with somebody, but then it’s trying to work it out. If they wanna to meet face-to-face, when are they down to clinic… When can they come in?—that type of thing. But we do try to do a lot by phone and email.” (E, PL)
Matching based on condition and cultural similarity	“So I think the condition has to be similar to you, from the mentor to the mentee. Even though the experiences are always different, the condition, I think they have to be similar, and also I think it’s important if the patient has a cultural background that the mentor understands that cultural background as well.” (E, PS)
	“So if it was a patient undergoing mastectomy we’d match her with a mastectomy patient and then we try and see maybe reconstruction versus no reconstruction and then narrow that down a little bit more to the type of reconstruction and then also age if we’re able to get it closer in age.” (F, PL)
	“I think that the barrier would be that my son had a very rare condition, so there weren’t necessarily people available … eventually I think I kind of honed in on saying ‘Well, it would be really helpful to talk to another parent that has a child with a G-tube that has significant cognitive delay …’ those kinds of things. So I think it was easier for us then to kind of hone in on those more conditions than diagnosis….” (D, PS)
	“We offer a new match. We—because we follow our matches, we follow up at one to two weeks to make sure that the match has happened. And that they’re comfortable with it. And then, we send a—at three weeks, we send an email to the support parent to remind them to call the parent.” (D, PL)
	“I try to match on issues. So for example, I had a 45-year-old man with a heart transplant that his main issue was talking about rejection issues. I was able to match him with a woman in her 60s that had gone through some rejection issues with her transplant. So, that was really what his concern was, and I found that that match worked really for both of them.” (E, PL)
Need to convince professional providers	“That was a hard nut to crack. They [physician] could see the benefit of the volunteer in the room when they weren’t in the room, but we had to show them the benefit of having the volunteer meet the patient before she goes into the room [for a biopsy] and kind of get that sense of calmness, you know… it took us to actually show the physicians that, and now they ask for a volunteer.” (F, PL)
	Because people can get territorial over there and not—I shouldn’t say that they should, but as they do, “This is my patient and there’s someone coming into the room that maybe I’m not sure what they’re doing or why they’re here, what purpose do they bring,” and they’re thinking maybe in a different line of thought as to more medical interventions as opposed to maybe more emotional support. So it’s important that we blend those two and that they’re well aware that that’s what we’re doing and nothing more. (F, PL)
	“I sent letters out to the cardiologists explaining that this program is here, and a few of the cardiologists reached out saying ‘Well, we have experienced parents within our practice that we would like to refer to be support parents,’ and I felt like I’ve done a lot of education of the staff to let them know that this program exists and the importance of having a parent matched with another parent who’s sort of walked in a similar path, and so I ended up getting a grant to help publicize the program.” (D, PL)