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Table 3 Parent-reported PARENT trial recommendations

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

Practice Recommendation Example(s) Type of recommendation
Home visits Parents had suggestions for the role and expertise they would like to be present in the individual leading the home visits, which included a focus on behavioural strategies “I feel that maybe someone who works with kids a lot – I don’t know if that would be a Psychologist or something – that would have strategies too that they could offer, that could help you encourage kids to do certain things because once they get in to the habit of, for example: drinking a lot of juice like “how do you then wean them off that to water (which is completely different than juice)” – right? Or if they are getting a lot of screen time “how do you wean them off of screen time so they’re not angry and screaming and basically causing hell in your home?” so, I think someone maybe like a Psychologist that can give you some tips would be very helpful – especially if you’re trying to implement them in a very short period of time (like 6-months).” Protocol recommendation.
Related SPOR domainCo-building: “Patients, researchers and practitioners work together from the beginning to identify problems and gaps, set priorities for research and work together to produce and implement solutions.”
“yeah, stuff around “the best ways to feed them nutritionally but also keep them interested in food”, and just making sure that you’re aware what, where your kid is supposed to be at in terms physical activity (that kind of thing) because although we research that sometimes
we’re not sure if it’s, if the information we’re finding is correct (you know, just things like that) and then maybe with toddlers things around “how to deal with behaviour [like temper tantrums and stuff like that]” – like I go to programs on a regular basis where I’m learning how to deal with that but not everyone has those resources or the time or the abilities to do that as well.”
“so, I would like to get some help with time management with the toddlers when it comes to their health. If a kid is going to school or if you’re working or you’re going back to work fulltime there’s so little time you’re going to be spending with your child – it’s not going to be more than 2-3 hours every day – so you have to make sure that whatever you’re feeding them is healthy or to make sure there’s, just about enough screen time and not more than, enough physical activity and everything has to be done in those 2-3 hours; so, that is something I would like a public health nurse to help me out with – like how to manage that time wisely.”
“in terms of physical activities, I think it would be really great to get some ideas for physical activity for this weather – like indoor physical activities, other than jumping around in the house. I think that’s just something I’m lost just in terms of ideas and how to keep them engaged in a physical manner, so that is something I need help with – some ideas.”
“a public health nurse I feel like he or she would, can give you medical advice or “how much, how many servings of fruit to serve? [or something like that]” but when it comes to time management, I feel like it’s a, maybe, councilor or something else.”
“what type of professional would be helpful with the visits? I don’t know if this makes sense but I almost feel like someone who can do a harm reduction approach to healthy eating with your child’ and 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” but I would love to have someone who, like an ECE person or someone who’s more familiar with child behaviour to be like “oh, you know what a useful tip is? Give it 75% of water and a splash of juice and that makes them happy and it’s more healthy” like kind of giving, I don’t know, daily tricks rather than guidelines.”
“when you say ECE are you speaking of an ‘early childhood educator’?
P6: That is what I’m speaking of but I’m, not necessarily that it has to be that – I was just thinking of people who are, have a child-specific educational training background.”
Recruitment Strategies should be employed to ensure recruitment materials effectively engage the attention of potential participants “I: No, no, that’s totally fine and I think that comment’s still very valuable if you think that email can sometimes get lost in your inbox and you would prefer something like a hard mail copy or something directly in the Physician’s Office it’s a very valuable comment. Protocol recommendation.
P5: “Yes, yes – that’s what I tried to get at (it just didn’t jump out or it didn’t stand out when I first received it) so something a little more direct I think would’ve been a better way to do that.”
Home visits Information about the nature and objective of different potentially invasive interactions between participants and researchers should be clearly outlined P4: “I guess just a general, like you’re looking at, again, the type of toys the child has – not the quality of the toys. You know, just what kinds of things would facilitate, you’re not necessarily looking at, that they haven’t cleaned behind their fridge recently [laughing] – you know, that kind of thing.” Engagement recommendation.
Related SPOR domainSupport: “Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies creating safe environments that promote honest interactions, cultural competence, training, and education. Support also implies financial compensation for their involvement.”
AND
Mutual respect: “Researchers, practitioners and patients acknowledge and value each other’s expertise and experiential knowledge.”
“so just hearing what the actual process would look like and maybe hearing about how other little babies react to getting their blood checked that would help me get information about that…”
Group sessions and outcome measures The appropriate structure and support must be in place to ensure parents can attend and complete all aspects of the PARENT Trial “I know it’s, those group sessions are in-person but would it be possible to have something that is online – that is, maybe, similar to this – or have an online lecture (or whatever) as an option? Just because I know it’s difficult to schedule your time around attending a session in person.” Engagement recommendation.
Related SPOR domainSupport: “Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies creating safe environments that promote honest interactions, cultural competence, training, and education. Support also implies financial compensation for their involvement.”
“maybe to have something recorded and the person can watch whenever time is convenient but it needs an opportunity to ask questions at some point (right?) – like an online course so the person can adjust, like Netflix, can see whenever you have a set time – but I think this one-to-one is important to be able to have our feedback.”
“I just wanted to add, for me personally, it would be, if there was any childcare option then I could do it pretty much any time.”
“From personal experience weekends would be easiest ‘cause that’s when childcare is more available to us [laughing].”
“P3: XXX [name – 01:17:33] here: I don’t think, I would not mind if I had to do a diary of physical activity for my kid (or whatnot) or for myself – I just feel that as long as you make it easy so I don’t have to recall what I did 2 weeks ago (‘cause I don’t remember) I would be happy to do anything as long as it was easy.
I: Thank you; and do you mind just elaborating on, specifically, what would make it easy? So, you mentioned having the questionnaires in close proximity to the behaviour – is there anything else that would make it easier for you?
P3: If it were online it would be very easy as well [laughing].”
PARENT trial overall Foster opportunities for peer support “then just to further one of the comments already made about providing feedback if it’s online: maybe this could be a consideration, I remember when I was taking some University courses we would have, in our class it would be our group and then we could interact with each other through a platform and the teacher (or whatever) would post up the assignments or some of the lectures or some questions and then all of us could answer (like a forum) – not sure if that’s something that can be considered but it’d be interesting to have that social engagement with the parents as well, and have parents interact with each other (maybe swap tips and stuff like that). I don’t know if that’s possible, but it would make it more interesting.” Engagement recommendation
Related SPOR domainSupport: “Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies creating safe environments that promote honest interactions, cultural competence, training, and education. Support also implies financial compensation for their involvement.”