Table 2 Qualitative results

Experience with P-PAG

Participation in the P-PAG

Importance of clarifying the role and purpose of the advisory group in the early stages of group development

“I would probably suggest to try to make the…context or the purpose more clear at the beginning” (IP1_2018-19)

“Perhaps it would be best if—if one were starting from square one, to anticipate that…and to explain to the participants ah… ‘Here’s the extent, and here’s the limit of your participation.’” (IP2_2018-19)

Importance of supports in place to facilitate participation

“actually reimbursement of like, travel expenses and providing hospitality goes a long way” (IP3_2018-19)

“Make it convenient, in terms of location and parking, timing—all of that stuff” (IP4_2018-19)

Discussions and communication

Parents valued discussion re: their views on the P-PAG’s role, purpose, and vision

“I like the sessions where we were kind of um, strategizing about um… where the group could make an impact, or where it wants to make contributions and so on” (IP4_2018-19)

“I thought it was really interesting that the P-PAG was flexible and started to make time and build it into um, the monthly meetings for us to sort of um, step back and look at what the group could and would accomplish if we had the opportunity” (IP3_2018-19)

Positive view of P-PAG discussions and communication within group

A survey respondent in 2018–19 stated what they enjoyed most about the P-PAG was the “respectful and inclusive atmosphere; [and] sincerity of researchers in incorporating feedback” (SP1_2018-19)

When asked in the 2020–21 survey if there was anything they would change, a parent stated: “I wish members participated more equally, but I think there is ample opportunity for folks to weigh in” (SP1_2021–22)

Importance of context/background for discussions

“I think sometimes it would be good if they [the researchers]… piped up a little bit more at times…and maybe provide some…feedback on…additional background” (IP04_2018-19)

“Sometimes items need more context prior to jumping into discussions” (SP3_2018-19)

Impact of the P-PAG and overarching research program

Parents want to hear and learn more about the impact of P-PAG activities

“It would be really cool to hear that you know, we talked about this being at different health centres, and it’s gone to now like three health centres, or um… like there was ah, 811 picked this up. They put it on the web site. I love seeing things sort of implemented at that level” (IP3_2018-19)

Another parent suggested “seeing what the follow up of our work looks like, as it gets implemented. Um… you know, so that we have a sense of the impact that—that this—this stuff could have” (IP4_2018-19)

Management of P-PAG

Positive view of how P-PAG was managed

“It was organized and felt like a safe space to discuss topics” (SP4_2021-22)

“I feel that P-PAG is well-managed and very organized” (SP9_2020-21)

Positive view of the move to virtual meetings

“Everyone in the world was forced to move to remote and a Zoom kind of experience. That has definitely been on the positive side, it’s made it a lot easier to participate” (IP1_2019-20)

“This format works for me because had this Covid not happened, I would never have been able to participate” (IP2_2021-22, member from outside of Edmonton)

Diversity of membership as potential area for improvement

“So many people had professional qualifications…or were working on them in the health care field” (IP2_2018-19)

“I still think we need to endeavor to find a more variety of people representation as far as diversity” (IP2_2021-22)

Confidence Regarding Research, KT, and Supporting their Child’s Health

Confidence supporting child’s health

“My son had an acute condition over the time that I was in P-PAG…I feel like it did actually empower me in going through the health care system to know um, what was happening when people were providing me with resources such as clinical care sheets and things. I sort of had—although I had a general sense before, I felt a little bit um, stronger in that” (IP3_2018-19)

Researcher Interaction

Some parents found volume/nature of researcher interaction appropriate

“It would have been easy for them to take over the meeting, but they have…they were very scrupulous in—in avoiding that” (IP2_2018-19)

“I think it’s neat that they didn’t talk a lot. And when they did talk, it was often, you know, very informally and sort of like hearing from a friend, rather than an authority” (IP3_2018-19)

Some parents wanted to hear more from researchers

Regarding wanting more input from researchers at meetings, parents wanted to hear more about the context of the group’s activities; one parent suggested researchers “provide some of the background and some of—the ways the tools were developed, and where the information came from” (IP5_2018-19)

“I think sometimes it would be good if they… piped up a little bit more at times…and maybe provide some…feedback on ideas that might be kicking around the table, or… um, additional background on why an idea might be feasible, or why it might not be” (IP4_2018-19)

Outcomes of P-PAG membership

Outcomes related to health research

Parents noted an increased awareness of research

“I just enjoy having some exposure to the world of evidence and child evidence, and the world of research” (IP1_2018-19)

Parents expressed wanting more learning opportunities

A parent suggested “an in-service every now and then where…they present information on topics relevant to the group. So there’s a little bit of group learning that takes place” (IP4_2018-19)

A parent suggested: “possibly add more presentations by researchers that are solely for information for parents” (SP6_2020-21)

Parents valued the contribution to child health research they made through the P-PAG

“I really enjoyed knowing that I was contributing to upcoming information for parents and families” (PX_2020-21)

A parent most enjoyed “contributing to health research that is accessible to parents” (SP2_2019-20)

Supporting child’s health

A parent stated what they enjoyed most about the P-PAG was “Learning about different topics I will encounter in my own parenting journey…so I can cater my parenting to my learning!” (SP3_2020-21)

Other outcomes

Parents appreciated and valued connections with other parents in the P-PAG

“I thought it was really satisfying to meet with the other parents” (IP3_2018-19)

“I’ve always enjoyed the…interaction among…the members of—of PPAG” (IP2_218-19)

A parent enjoyed most about the P-PAG “The opportunity to discuss health topics with other parents” (SPX2_2019-20)