Why we need to research with children, not on children

In 2004 the American Institute of Medicine released a report addressing the ethical conduct of clinical research involving children.¹ Emphasis in the report was placed on well-designed, ethical research that does not burden nor exclude children. A primary theme in the report was the importance of conducting research with children rather than on them to improve the health of children. Alongside this, the United Nations Convention on the Rights of the Child ² also advocates the fundamental rights of children to be consulted, and to express their views on matters that involve them. These documents marked a shift from researchers protecting children by excluding them from participation in research and conducting research only on and with adults. The mistaken view that children were being protected through exclusion from research studies and that adults knew best meant that the perspectives of adults were sought on issues that involved children. While it is accepted that primary caregivers have intimate knowledge of their children and therefore know their child best, there has been a distinct shift towards child centered care and approaches to research that include children in decision making processes.

There is growing evidence linking unrelieved pain in children to a number of undesirable short- and long-term behavioral, physiological and psychological consequences.³ Optimal assessment and management of children's pain is therefore paramount to clinical practice. Despite an increasing global commitment to adequately manage children's pain and a plethora of research investigating pediatric pain, accumulating empirical evidence affirms that children continue to needlessly experience pain due to a lack of or ineffective management practices.^4,5 Many studies exploring pediatric pain have adopted quantitative methods, and while results of these studies have made an important contribution to our understanding and management of children's pain in clinical practice, using exclusively quantitative methodology risks not capturing the entire pain experience from the children's perspective. A deeper understanding of children's pain relies upon methods of inquiry which recognize children as experts in matters that involve them, and respect the capacity and rights of children to express rich, detailed and trustworthy accounts of their experiences.

Qualitative research methods are concerned with understanding the world of experiences through the eyes of participants, and the meanings that participants attach to these experiences.⁶ As such, qualitative research can contribute to better understanding children's health related experiences, including their pain. It is important to adopt a qualitative approach that engages and appeals to children, and is appropriate to their cognitive development. Participatory research methods, where research is undertaken with children, are a medium of inquiry that allows children to express their experiences via non-intimidating and inclusive means which best suit their preferences.⁷ Examples include engaging children in activities to express their perspectives such as drawings, video diaries and play activities. These approaches examine how children conceptualize their experiences and may collect deep and detailed insights that are otherwise unattainable or not known to adults. Participatory research methods have become increasingly popular among researchers whose interests lie in engaging children more inclusively in research.

A systematic review of qualitative evidenced published in this issue of the JBI Database of Systemic Reviews and Implementation Reports contributes to empirical evidence that has firmly dispelled the unsubstantiated assumption that children perceive pain differently to adults and “won’t remember” their pain experience.⁵ Young children do remember previous pain experiences, and importantly, these memories influence their perceptions, behaviors and needs during subsequent pain experiences.⁵ Also, as identified by this qualitative evidence, young children are capable of expressing various detailed accounts of their pain experience and can suggest a number of strategies they consider effective in managing their pain.^5,8

The field of participatory research has more recently entered the phase where children are invited to work collaboratively with researchers in any or all stages of the research cycle including: deciding what to research, deciding how to do it, doing it, letting people know the results and knowing what to research next.⁹ This can be achieved by inviting children to participate as members of research steering committees. Engaging children in this way supports evidence implementation.¹⁰

Children have much to offer researchers and policy makers if they are engaged as stakeholders in research aimed at improving their healthcare and in particular pain management practices. Synthesis of research findings in this area illustrates a shift towards applying participatory research to inquiry.⁵ In order to guide better pain management practices, a further leap is necessary using a similar participatory approach, where children are invited as collaborative partners in the design and development of innovative pediatric pain assessment tools. In this way, children's participation in research is more meaningful as they are better positioned to inform decision-making, improve the quality of healthcare for children and optimize health outcomes.