At the start of this year I blogged about the importance of volunteering to participate in research – something which I believe ought to be considered as much a part of everyday generosity as blood donation.
A twitter follower responded to my plea by suggesting:
.@SueReviews include satisfaction questionnaires & participant feedback in published results to drive up standards: that'll ^ recruitment
— Kabie (@Kabieuk) January 23, 2015
A brilliant suggestion and one which I am trying to respond to in a small way in this post, which showcases a way in which researchers might consider supporting their participants more effectively.
In 2012-13 I conducted a small randomised controlled trial of an iPad app (and thanks for asking, but no, it still hasn’t been published, but you can see a conference report here). We asked parents of the children participating to complete a short evaluation of their experience as part of the immediate-outcome and follow-up process. The goal of these questions, shown in the snapshot below, was not to ask about the effects of the app, but to ask how the parents felt about the research process – coming in for lab visits, filling in questionnaires, being filmed etc.
We monitored responses as the study went on, looking for anything major we could correct. However I haven’t compiled the data into a single report until now. So here are the data from that survey. The first graph shows how parents felt at the immediate end of the intervention period and the second one shows their responses after the follow-up appointment, about four months later.
As you can see, the data are pretty good. The vast majority of parents (in green) said that they found the study acceptable, and enjoyable and nearly everyone felt in control of their participation. This last question was trying to tap into whether anyone felt pressured to stay in the study or whether they were being in any way bamboozled by the research team. Of course it’s possible that this survey was subject to the same influence but I certainly hope not – we tried to provide positive experiences and a relaxed atmosphere, limiting what can be a very uneven power dynamic between participant and researcher.
Comment from a mother enrolled in Click-East
Parents were less enthusiastic when reporting on their children’s experiences. This is unsurprising, as we asked the kids to come to a new setting for the first time, interact with a stranger (me), and so on. Not often comfortable experiences for any preschooler let alone one with autism. But still the majority seemed to have a good time, and in particular I’m pleased to see that long-term participation in the study seemed to make the experience more positive for the kids (more green on the second graph!). We did work hard to minimise the difficulties, for example sharing images in advance, which introduced participating children to me, the building, assessment room and toys before their first visit. Parents commented on this aspect favourably in the open-ended part of the questionnaire.
Comment from a father who took part in the Click-East project
Less positive comments included a parent who felt she was recruited to the study too soon after her son’s diagnosis, when she wasn’t ready to think of herself as a ‘parent of an autistic child’. Parents were provided with a report on their child’s scores on the study assessments, and while some found these useful (see quote on the right) one parent shared that she had found this hard to take, though she didn’t have any criticisms of the specific information or the way it was worded. These are both useful pieces of information which can inform how we handle participants in future studies.
Overall though I’m delighted with these data and look forward to providing enhanced participant experiences in future projects. I’ll certainly collect this kind of information again next time and hope, as Kabie suggests above, that this might start to become a standard way in which the quality of research is evaluated and shared.Less positive comments included a parent who felt she was recruited to the study too soon after her son’s diagnosis, when she wasn’t ready to think of herself as a ‘parent of an autistic child’. Parents were provided with a report on their child’s scores on the study assessments, and while some found these useful (see quote on the right) one parent shared that she had found this hard to take, though she didn’t have any criticisms of the specific information or the way it was worded. These are both useful pieces of information which can inform how we handle participants in future studies.
