Involving Young Disabled People in the Research Process: The Experiences of the PIE Research Project Team

Abstract

Abstract:Young disabled people are still rarely involved in the research process, despite an increasing emphasis on their inclusion as participants. The Participation in Education (PIE) project examined how disabled children with little or no speech could be involved in their education. The project team worked with an existing group of young disabled people to develop ways in which they could take part in the research process. The group was involved in developing the methodology, group work, observation, commenting on findings and in the dissemination process. Their involvement undoubtedly enriched the research and the benefits of working with an established group were manifold.

School is closed!

“…Further, when we rely on narrow understandings of appropriate childhood development, differences between children are either neglected or problematized as deficits in ways that normalize and idealize able-bodied, middle-class childhoods (Burman, 2001). We must also recognize the differences in children's material lives that are connected to discrimination in schooling, including comfort or ostracism, e.g., due to racism (Dei, 2008) or ableism (Watson et al, 2014) and access to educational resources.…”

Using children and young people as advocates to inform research design

“…Alternatively, other researchers involving children and young people as advocates have approached pre-existing groups (Watson et al 2012); young people older than the study population through a charity (Payne 2016); and parents together with their children (Menzies et al 2016).…”

“…It was of benefit to the researcher that advocates were previously known and therefore easily contactable; this is a pragmatic approach occupational therapists can take as long as they are careful to follow ethical guidelines. Alternatively, other researchers involving children and young people as advocates have approached pre-existing groups (Watson et al., 2014); young people older than the study population through a charity (Payne, 2016); and parents together with their children (Menzies et al., 2016).…”

“…In particular there has been an urge to involve children and young people with disabilities in active meaning-making through the research process (Nind et al., 2010). Researchers have successfully involved young people with disabilities as advocates for study design and dissemination (Brownlie et al., 2006; Watson et al., 2014). This practice analysis provides an illustration of successful involvement of a child, and of individuals with both communication and physical disabilities.…”