Developing Inclusive Research Protocols
Children and youth with NDDs who have behaviours of concern are often excluded from research. Here at the PN lab we are developing inclusive protocols to change that.
Although many families of children with NDDs express interest in participating in research, they are often excluded from research due to diagnostic complexity and behaviours of concern (BoC); the very characteristics that make research essential for this population. Furthermore, when children with NDDs are included in research they are typically treated as passive subjects rather than active contributors, and this conventional approach not only limits meaningful participation but also reduces the applicability of findings to real-world contexts. If studies fail to account for the diversity within the NDD population, their results cannot truly reflect the lived experiences or needs of that population.
Inclusive research seeks to address these challenges by fundamentally changing how studies are designed and conducted. Instead of tailoring protocols to an idealized "typical" participant, inclusive research involves co-developing protocols with the study population itself. This approach centers the voices of those with lived experience, involving them in shaping the research question, methodology, adaptations, and knowledge translation.
For children with NDDs, this shift from being research subjects to research partners is particularly crucial as it ensures that protocols reflect their unique strengths, needs, and ways of communicating. While some progress has been made, particularly in adapting qualitative methods such as art-based communication and interviews, and in specialized contexts like MRI research, much work remains. At the PN Lab, we are actively developing and testing inclusive research protocols to make studies more accessible, equitable, and relevant for children with NDDs and BoC.
Collaborators:
The PN Lab Advisory Council