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Table 2 Elicited barriers and facilitators from participants regarding the PARENT trial

From: Parent engagement in co-design of clinical trials: the PARENT trial

Practice Barrier or facilitator Example quote Theoretical domain
Blood samples Barrier – Parents identify the blood samples as a factor that could harm their child “I guess for potential harms I’m trying to remember if I said ‘no’ to the blood sample or if I just haven’t been ask yet – it’s been hard to weed out different studies I’ve been asked to participate in – but I know I’ve said ‘no’ to that before so I see that as a potential harm” Belief about consequences: “Acceptance of the truth, reality, or validity about outcomes of a behavior in a given situation”
“I think hearing more about the blood sample might also just be ‘first-time mom’ worries but just I wasn’t sure if it would be done at XXX [hospital name – 00:44:28] or by my family doctor – like “would it be by someone who’s taken blood from a little baby before?” Like she’s 2 now but when I first started, she was 6 weeks old and I was like “what? No way”
Barrier – The blood sample may elicit negative emotions, including nerves and fear “The things that I don’t like [laughing] just being honest) I’m a little bit nervous about the blood sample that’ll be taken, but that’s as a first-time mom – just scared about that for my little one.” Emotion: “A complex reaction pattern, involving experiential, behavioural, and physiological elements, by which the individual attempts to deal with a personally significant matter or event”
Barrier – Providing blood sample without receiving potential trial benefits can strengthen perception of harm “…in the control group it just feels a little bit extra like “ugh, so we got to give the blood but we don’t get the at-home visits or the one-on-one support” so I guess that’s what felt like a potential harm for me.” Reinforcement: “Increasing the probability of a response by arranging a depending relationship, or contingency, between the response and a given stimulus”
Home visits Barrier – Home visits may be threatening due to concerns about judgement “In terms of not like: I can see people being concerned about the home visits – about “what are they looking for? Are they going to judge the state of my home?”, you know, just things like that that people I know can be concerned about when people are coming into their homes” Belief about consequences: “Acceptance of the truth, reality, or validity about outcomes of a behavior in a given situation”
“I would also have concerns if there were home visits – I think my worry would be “ugh, what are they looking at? Are they going to be looking at my sink dishes in it, or are they judging the whole atmosphere here, or are they just sitting to have the talk?” so hearing what to expect.”
“I would say mostly just a misunder--------, like not understanding what the home visits are would probably be a big barrier. Like I said, people thinking that you’re coming in judging them as opposed to coming in to assess.”
Barrier – Public health nurse approach may not be congruent with the nature of support parents want to receive in the home visits “I find that public health nurses are really good at giving you a summary of what the recommended guidelines are but I find that public health nurses can sometimes be rigid and so if you’re like “oh my gosh, my kids throw a tantrum every time they demand juice” I feel like public health nurses will often say “oh, well, it’s best not to give juice – give water”” Social or professional role and identity: “A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting”
Facilitator - Some parents perceive expertise and approach of a public health nurse to be appropriate for their needs “I like having a public nurse there. I feel like he or she would be quite knowledgeable about, well, they would’ve seen many children and many different types of patients so they have experience as to, maybe, how kids might react to less screen time (if they have any strategies on encouraging that), so I think the nurse is really great” Social or professional role and identity: “A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting”
Home visits and blood samples Barrier - A lack of knowledge around the purpose and procedure for different trial activities may deter participation “Maybe hearing about how other little babies react to getting their blood checked that would help me get information about that; and, yeah, I guess I would also have concerns if there were home visits.” Knowledge: “An awareness of the existence of something”
“ugh, what are they looking at? Are they going to be looking at my sink dishes in it, or are they judging the whole atmosphere here, or are they just sitting to have the talk?” so hearing what to expect.”
“I think the only thing that’s stood out for me is: reading in the protocol (or the consent) that it’s specifically for kids who are at a high-risk for childhood obesity, and I think when I read that I was like “what? My kid’s at high-risk for obesity? I didn’t even know that” so just some questions that come up with recruitment around that.”
“I don’t know where they got the information that my child was at risk for childhood obesity – [laughing] I don’t know if it’s based on my health background or the health file or something – so just hearing from the Research Assistants why we’ve been chosen.”
Barrier - Scheduling and time constraints may impact ability to participate in group sessions and home visits “My thought on the group sessions though, I myself have difficulty attending that so I imagine that would be difficult for other families as well.” Environmental context and resources: “Any circumstance of a person's situation or environment that discourages or encourages the development of skills and abilities, independence, social competence, and adaptive behaviour”
“Yes, and they’re weekly, and, so I’m not sure, of course it’s a group and there has to be a consensus for the time. It’s going to be a little bit of time management every single time you have to be a part of that group.”
“Just because I know it’s difficult to schedule your time around attending a session in person.”
“… from a time perspective I personally am involved with home visits from a XXX [city name – 01:07:03] health public nurse right now and someone who comes to our house regularly (like every 2-3 weeks or so) and I’ve been part of the program for the past year and at this point I’m ready to end it – I want that time back [laughing] – so I would just say ‘time’.”
“Yeah, I just think the, they become a bit repetitive after a while, and it’s only about an hour and it’s in the home, so I just found that they work your schedule but just wanting that time back – especially if it falls through nap hour.”
Recruitment Barrier - Parents may have difficulty distinguishing PARENT Trial study from overload of similar information “No, I think what’s going through my mind now is, I find it hard, I think because they’re all through my Doctor’s Office and there’s lots of different projects going on that they’re hard for me to parse out what’s what [laughing]” Memory, attention, and decision processes: “The ability to retain information, focus selectively on aspects of the environment and choose between two or more alternatives”
Facilitator - Leveraging pre-existing participant points of contact may facilitate recruitment “in one way I kind of like that because I find that the studies are so not intrusive that I barely notice them – like I think so far it’s just been the long questionnaires and measuring – and so the recruitment has been just so easy that I haven’t especially noticed it so I think it’s just getting emails from things that I participate in through my Doctor, so it’s been easy.” Memory, attention, and decision processes: “The ability to retain information, focus selectively on aspects of the environment and choose between two or more alternatives”
Social or professional role and identity: “A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting”