Annette’s team developed a tool to match researchers with families and children

Transcript

But there are other parents that contact us and they say they want to be involved. So what we’ve developed is a matching tool, so they fill out the tool basically telling us a little bit about themselves, the type of – their child’s age and type of disability, so we have a sense of their profile, where they are in the stage of their child’s development, what skillsets they have that they could offer that they think could be helpful to the network, like some have done editing work, or have writing skills, or things like that. And graphic design, you know.

Sometimes there are specific needs that come up, whether let’s say we were looking at a new – a venue for a meeting, so we wanted to have a youth look at that venue from the perspective of a person with a disability and actually go with us to check out the venue and see from their perspective what – if it’s an optimal space for a person with disability, and that was very, very helpful. Or for example, as a concrete example, in our project we have our parent advisors but then we wanted to – we were developing an intervention and they were very helpful in that development but then we wanted to verify it with a larger pool of parents to really make sure it’s meeting the needs of parents of young children recently diagnosed with a disability, to be sure that this intervention really has the right content.

So we wanted to then get multiple perspectives, so we can go to the matching tool and say okay, who has a child who is under 10 years of age and have them complete a survey. Or it could be one group is developing an app for youth with disability and they want to get the perspective of both youth and parents of youth. So again they can go to the matching tool, whatever their criteria are, we could pull out potential parents and it would be for one specific task. So the matching tool allows us to go to a pool of – we now have close to a 100 people on that matching tool – for a very specific task, like it could be to look at a consent form, and to get just a broader pool of input.

And then you could say we only want to have parents of children with CP, for example; so it will pull out all the people that fit the criteria and they will be asked are you interested to participate in this specific task or whatever. We’ve had them look at things from a communications perspective that come up with our communications manager. So that’s another way to bring more parents into the network, not to commit to a full project but to commit to a specific, like something specific, and still feel part of it. So I think that’s been really terrific.

Our knowledge translation program has been tracking – every year they have projects completed IKT – Integrated Knowledge Translation tracking tool. So we’re tracking to what extent patients are engaged in each project. We complete forms to see the ways that patients have been engaged, at each stage of a project, so not just at the start but all – we’re following this longitudinally to see the ways that patients engage. Because it’s hard to maintain that engagement at all different phases of the project, so to learn how people do that.

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