Involving children in health literacy research

Abstract

Abstract Background The range of health literacy research related to children has not normalised children’s involvement as advisors in health literacy research about them. While research with children can be difficult to facilitate, the principles of involvement and engagement should guide all health literacy work. This presentation shares learning from convening a Children’s Advisory Group to consult children about health literacy research priorities, ethics and methods. Methods Children (n-8) aged 7-11, referred by adults whose networks included children, joined a Children’s Advisory Group as Child Advisors. Consultations focused on a proposed study of how children’s critical health literacy could be supported in a community setting. Child Advisors piloted methods for rapport-building and data collection to be adapted for use with child participants later. Child rights-informed evaluation forms captured children’s reflections on their involvement. Results Consulting with a Children’s Advisory Group has challenges and benefits. Despite equity-focused strategies, e.g. introductory phonecalls and postcard updates, seldom-heard children remained less involved and the extent of parent/caregiver support varied. Child Advisors valued independent consultations led by their interests. Contributions included child-friendly consent documents, livestreamed draw-and-describe inspired by favourite influencers, and a novel Interview to the Alien protocol designed to appeal to middle childhood. Conclusions Taking an equity-focused approach is relevant for research with children focused on critical health literacy. Consulting with Child Advisors provides a way to involve children in health literacy research that holds adult researchers accountable for acting on children’s contributions. It is important to offer Child Advisors more than one option to get involved in research so that their insights can be foregrounded in future health literacy research with children.