Empowering children and parents

How do we involve children and parents when we design new research? And how do we involve them in the development of interventions? In other words, how can we make sure that the studies we conduct and the care we provide are answering their needs?


Giving children and parents a voice in our research and clinical work is the topic of next week’s #traumaresearch chat (Thursday 12 April in most time zones, find your local time here). It’s inspired by a moving TED talk by Lucien Engelen earlier this week. He is a change maker in health care and encourages professionals to listen more carefully to patients.

Now we could argue that in mental health care and research it is our job to listen to clients. But I think we can still do much better. We need to give children and parents more opportunities to tell us what they find important. As an indication, in the academic world, children’s perspectives aren’t easy to ‘sell’. We favor publications using standardized instruments (often directly derived from adult measures, just assuming that the same will apply to children) over child-centered, newer methods that just do not fit our traditional view of ‘good research’.

To give you an example: two of our studies, which in my view were of equal quality, were received very differently by editors. The first one was quantitative, about the prevalence of trauma and posttraumatic reactions in children. Based on questionnaires, we found that about 14% of the 1770 participating children reported exposure to a potentially traumatic event (often the loss of a loved one or a serious accident). Posttraumatic stress turned out to be related negatively to quality of life and positively to posttraumatic growth experiences. The paper was accepted in a high-impact psychiatry journal.

The second study consisted of 25 in-depth interviews with children about their experiences of trauma recovery. The children’s demographics and types of exposure were as diverse as possible, to enable a wide variety of views. The main themes in the their stories were 1) the long aftermath of seemingly single-incident traumatic events, 2) the support from family, cuddly animals (!), and friends, 3) positive elements within the negative experience, and 4) a wide range of coping strategies that had worked for them. The paper was rejected and rejected… until being accepted in a (citation-wise) low-impact trauma journal.

The purpose of this example is not (only ;-)) to complain that we weren’t able to publish the interview study in a high-impact journal. We found a good outlet that provided us with thoughtful and helpful feedback. I think it shows where our priorities as a field lie. I’m not convinced that a carefully analyzed sample of children’s stories is of less quality than a standardized questionnaire answered by a huge number of kids. In my view we need both.

We should ask children for feedback about measures that we intend to use in those quantitative studies. And make sure that we put children and parents at the center of our work, not what will be ‘best publishable’ in high-impact journals. We will need to find a good way to reward child- and parent-centered research.

What’s your view? Do we indeed need to involve children and parents more? How can we do it? Do you have tips, approaches that worked well? Please join the chat next week and/or leave a comment below.

References (links to free pdf’s in the text above):
Alisic E, van der Schoot TA, van Ginkel JR, & Kleber RJ (2008). Looking beyond posttraumatic stress disorder in children: posttraumatic stress reactions, posttraumatic growth, and quality of life in a general population sample. The Journal of clinical psychiatry, 69 (9), 1455-61 PMID: 19193345
Alisic, E., Boeije, H.R., Jongmans, M.J., & Kleber, R.J. (2011). Children’s Perspectives on Dealing With Traumatic Events Journal of Loss and Trauma, 16, 477-496 : http://dx.doi.org/10.1080/15325024.2011.576979

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