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. 2022 Oct 3;6(1):e138. doi: 10.1017/cts.2022.469

Table 3.

Relational factors affecting relationship building: codes and exemplar quotes

Factor Exemplar quote and primary research setting*
Pre-approach
Determining when and whether to approach I will not go in, and this will be usually the nurse or the clinical team will tell me, if a parent is getting upset, cause these can be long days for parents and they can also get some bad news, or good news or whatever, but it is really important that the care team gets the most out of their interaction with the family. (Specialty clinic)
Initial connection
Approach to communication I think to begin, it’s always really important for families to understand particularly if you only have a few moments to really communicate with them for that first approach. I think it’s important for them to understand who you are and what you’re there to do. You don't just want to jump right into the spiel about the study. I think they first need to understand what is it really that you may need from them. That’s kind of the first part of maintaining a respectful relationship. (Clinical research core)
Style or persona I always try to greet with maybe the part of the day: ‘Hi, good morning/afternoon/evening,’ things like that, and then maybe a gentle smile, but not too forceful because I feel like you could be excessively chipper sometimes, and then depending on the clinical situation, it’s maybe uncalled for. (Social/behavioral)
Finding common ground I lived in [region] twice in my life … so sometimes I throw that in there. It’s a commonality and then it’s because then we get to talk about [continent] and it’s wonderful for me, them, and we’re back on the homeland. (Intensive care)
Clarifying role Just my being a part of the [hospital] family can make me important, or people think that I’m a clinician or something, so I have to be very careful and be very clear with them of what my role is and credentials are and my educational background sometimes. I have to make it very plain that I’m not a clinician. (Specialty clinic)
Names, pronouns, and pronunciation One of the things we try to do with all of our research studies is asking patients and families about their preferred names and gender pronouns, just to respect different identities, different nicknames, even asking or verifying that we’re pronouncing names correctly is another part of it. (Specialty clinic)
Families’ perception of coordinator I think sometimes my age or appearance can sometimes lead some folks to be skeptical of my abilities. I think that’s one barrier that I face, but it’s something that you eventually overcome, once you get to know me and work with me. (Clinical research core)
Personal biases I know I could definitely say things that would offend other groups, based on just my upbringing and the way that I communicate with people, if I don't choose my words carefully, and that’s true for everybody, but I think that’s an important part of building trust. (Specialty clinic)
Families who use a language other than English I can get a better sense of who they are, and there have been times where, for example, from past studies, if the family speaks Spanish … we would just end up speaking Spanish just to feel much more comfortable, especially for them. (Specialty clinic)
Building connection
Accommodating family needs I also think flexibility can be a way of showing respect. Our patients and families have different needs at different times. … I’m happy to meet with a family a weekend, or in the evening, if that works better for them, or I can schedule a pick up for study materials for the [study] test kit, if that makes them easier, and I want to respect in that way that like I’m a part of their whole experience, but I am not the most important part. The most important part is that they are navigating in the world with their child. (Social/behavioral)
Engaging the pediatric patient With kids, trying to get down on their level, trying to make myself smaller, like sitting down or kneeling on the floor or something like that, try and help them know that I see them. (Social/behavioral)
Emphasizing voluntariness I always emphasize that it’s voluntary and that it won't affect their care at [hospital], just because I know certain families may think that, ‘Well I’m getting care here at the hospital, so I have to join research, or else maybe my care might change.’ I let them know to pause me or stop me at any time. I also stop for any questions they may have, or any concerns, and it doesn't even have to be questions, and to make sure to answer all those questions, while at the same time acknowledging that if they’re a bit iffy on it, I’ll give them all the time they need to think …. I do not want to pressure or make them feel pressured to join the study. (Clinical research core)
Social and power dynamics There certainly is a power dynamic, and it’s one that you have to tread carefully …. I try to kind of consider it as a conversation between two experts. ‘I have an expertise in what the study is about. You have an expertise in your experience and your family, and so you decide what’s right for you, and really at the end of the day, we’re trying to leverage your expertise in order to better be able to serve patients and families in some way.’ (Social/behavioral)
Language choice We’ve been really drilling into how we share information about the study and how we communicate with families, in terms of making sure all of our materials are approachable, are an appropriate reading level, are written such that they can be meaningful to families, regardless of their level of comfort or experience either with medical jargon, or with research, just to ensure that we’re not causing families any discomfort or alienating them just in terms of how we present the research. (Specialty clinic)
Describing the study I feel like it comes down to maintaining communication with the family, making sure that it’s a back-and-forth, pausing for questions that the families might have, verifying that they understand, by having them repeat the information back to you, and then if they don't have any questions, asking them things like what hesitations they might have, or what uncertainties about what I’ve presented to them, and always providing them the option of an out. (Clinical research core)
General hesitation about research There’s definitely been situations where the families are more wary of research and doctors in general, I would say, where perhaps they’ve had a bad experience in the past, so they are more reluctant to trust going forward, and for those kinds of situations, I just try to give the family as much information as possible in terms of the study, answer all their questions as best as I can and if they don't feel the response is adequate, always remind them of how they can connect with the PI [principal investigator] to get those questions answered, and I just try to give them as much space as possible so that they don't feel pressure or obligated to join research, especially if they’re already a bit distrustful of research in general, just because trust is easy to break. (Clinical research core)
Motivations One of the key components in my experience for building rapport and engaging families is explaining both the benefit to them and the benefit to others from the research, like what’s actually gonna happen, right? They’re not just filling out surveys for the sake of doing surveys. (Specialty clinic)
Study risks I definitely don't want to downplay their concerns about risks or side effects, unless it seems like they’re really misunderstanding what those are, but just more focusing on the fact that it’s their choice, if they would like to participate, and that if they do choose to, that they’re not locked into that forever. (Intensive care)
Study burdens People are concerned that it’s gonna take too much time and take away from caring for their child, or doing work. They have a job and doing all these other things …. Sometimes people automatically will be like ‘This is not… I don't…’ ‘cause they don't know what it is yet. ‘I don't think we can do this. We just have too much on the plate.’ (Social/behavioral)
Follow-up
Following through I was recruiting for … a multi-site study where we’re a sub-site, so we’re not the folks who have necessarily all the answers all the time, and so my approach to that is essentially letting them know, ‘You know that is a great question. Let me go ahead and follow up with whoever is the applicable person,’ and then at that point follow up with them and let them know. (Clinical research core)
Longitudinal relationship building We are with these patients so closely and for a long time that they confide things into us and then we are kind of able to escalate concerns… we grow with them, see how things could be better, and then you know speak for them, but we also always encourage them to speak up with anything that they’re not happy about. (Specialty clinic)
*

Interview code numbers omitted for interviewee privacy.