Table 3 Barriers to wider Network engagement most frequently reported by CHILD-BRIGHT patient-partners and researchers
From: Patient engagement in a national research network: barriers, facilitators, and impacts
Barriers | |
|---|---|
Patient-partners (total number of utterances = 38a) | Researchers (total number of utterances = 9c) |
1. Communication challenges (13 utterances) (Lack of information about CHILD-BRIGHT Network activities/initiatives, Lack of information about research projects; Lack of plain language when communicating; Network communication issueb; Too many emails) “Language is a roadblock. It’s up to people like me to go and remind everybody [to use plain language]." | 1. Time commitment required and asking too much of patient-partners (4 utterances) “…But to parse our time by all of the little sub-studies that we’re asked to participate in […] There’s a feeling of obligation, there’s a feeling of gratefulness, there’s a feeling of wanting to give back and there an overwhelming feeling of guilt for not being able to keep up with all these things. “ |
2. Factors specific to patient-partners (8 utterances) (Limited time; Mismatch between the patient-partner’s experience/interests/views and the research focus; Patient-partners are uncomfortable speaking up) “A lot of the very pediatric-focused questions that CHILD-BRIGHT is asking, I kind of feel like I'm not necessarily the best person to answer those questions a lot of the time.” | |
3. Time commitment required and asking too much of patient-partners (7 utterances) “The time commitment, it’s, it’s huge, you know, […] It’s just a huge commitment. I’m considering in the next round, you know, whether I stay or just, I don’t know. I love it, but I have to figure out if I can do it.” | |
4. Power imbalances (6 utterances) (Patient-partners not seen as equal to researchers) “It is an interesting power dynamic if someone has more power […] and in some ways because the researchers have all the money, they have all the power. […] So, there is that power dynamic, regardless of these labels with experts and things.” | |