Engaging Children in Health/Illness Research: our discussion

by Rebecca Black

I hosted an informal workshop for the network in March, exploring engaging children in health and illness research drawing on my PhD research and experiences. Despite recognition of the importance of listening and consulting with children regarding their healthcare, children’s accounts regarding their own health and their involvement in associated care is under examined.

My PhD research has examined children and parents’ experiences of childhood epilepsy and how children are involved in their own care both in formal care contexts (such as hospitals) and informal care in the home. Drawing on my research experience, we explored over the course of the workshop how we could engage children in research regarding their health, in particular chronic illness, as well as examining the (potential and actual) barriers to such research.

We began by looking at childhood epilepsy and why there has been limited research attention on children’s own experiences of this childhood chronic condition. Concerns from various stakeholders on whether children could adequately report on their condition, whether it would be too upsetting for children to talk about their epilepsy, and how data gathered during the course of my research would be “useful” to those outside of the University (e.g. parents, NHS, individual healthcare professionals) were some specific barriers I faced. However, I believe these issues arise in the majority of illness-related research that aims to engage with children about their condition, which contributes to a lack of research attention on their voices in health research. This lack of attention results practically in misunderstanding of children’s capabilities at being involved in research, which influences access to, recruitment, and ethical processes associated with researching such children. A lot of the discussion during the workshop focused on these practical aspects of engaging children in research and how I overcame these barriers, including: concerns of child consent versus assent (e.g. Parsons et al, 2015), recruitment challenges surrounding access to such patient groups, and the challenge(s) of applying and obtaining NHS ethical and governance approval (e.g. Thompson and France, 2010; McDonach et al, 2009).

Within the workshop, we also considered the prevalence of notions of ‘competency’ and ‘vulnerability’ in discussions with key stakeholders (e.g. NHS oversight) and gatekeepers (e.g. healthcare professionals who allowed access to their patients) involved in medical and health research with children. For example, I had to rely on consultants to pull medical records for those eligible for my study that I could then approach to recruit. While instructions were provided on which children would be eligible, with ‘competency’ defined quite broadly (IQ must be higher than 70 and the child should not have received a formal psychological assessment), there was no guarantee that the consultants used this same level of competency to assess potential participants, and may have potentially screened out some eligible children from participating in my study. These differing ideas of competency in the children may have altered the sample of participants I could recruit. Discussions of competency and vulnerability were particularly salient in my own research and in others research, so we spent time discussing some of the major decisions researchers must make about what these concepts mean for their work. All the discussions emerging from the workshop opened the lid on the potential ‘can of worms’ that can emerge from engaging children in health and illness research; although intensely complicated, such insights from such research can prove to be hugely worthwhile for participants, research institutions, and the medical community.

References

Parsons, S., Sherwood, G., and Abbott, C. (2015) Informed consent with children and young people in social research: Is there scope for innovation? Children and Society, vol 30:2.

McDonach, E. Barbour, R.S., and Williams, B. (2009) Reflections on applying for NHS ethical approval and governance in a climate of rapid change: prioritising process over principles. International Journal of Social Research Methodology, vol. 12(3): 227-241.

Thompson, A.G.H., and France, E.F. (2010) One stop or full stop? The continuing challenges for researchers despite the new streamlined NHS research governance process. BMC Health Research, vol. 10: 124.

 

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