Researching experiences of childhood brain injury: co-constructing knowledge with children through arts-based research methods

Abstract

Objective: In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward.

Methods: We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury.

Results: Assumptions ingrained in research practices, particularly those surrounding the capacity of ‘doubly vulnerable’ children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children’s first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities.

Conclusion: By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built.

Implications for Rehabilitation

• Current research practices preclude ‘doubly vulnerable’ pediatric populations, including children with brain injury, from actively contributing to research that concerns them.

• As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete.

• Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us.

• Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care.

Keywords:

• Pediatric
• brain injury
• qualitative
• arts-based research
• co-construction
• knowledge

Acknowledgements

The authorship team wishes to acknowledge the financial support provided to KM by the Kimel Family Graduate Student Scholarship in Paediatric Rehabilitation. Importantly, KM would like to thank the children and youth who participated in her ongoing doctoral work.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work is also supported by a Bloorview Research Institute Student Fellowship and a University of Toronto Fellowship in Rehabilitation Science.