Children with Disabilities in Child Well-Being Research – an Inclusive Methodology

In this paper, we discuss the inclusion of children with disabilities in child well-being research with reference to the Australian segment of the CUWB research project. Children with disabilities are rarely included in research on children’s perspectives on well-being, and are in general excluded from child population research. Reasons for the lack of inclusion of children with disabilities in research may include perceptions that they are different from children generally, and/or incapable of contributing their views on issues important to them. Addtionally, involving children with cognitive and communication difficulties can present time and methodological challenges for researchers, because multiple methods may be needed to enable their participation and engagement.

There is however, a need for more in-depth research to understand what well-being means for these children in the context of their experiences of living with disability. Recent research has indicated that the quality of life of children with disabilities is significantly lower than for children more generally. It is particularly important that knowledge is obtained on the immediate and longer-term limitations, for children whose lives are lived with disability or illness, in terms of ‘usual’ child activities and experiences of childhood associated with child well-being.

In this paper we outline our application of a methodological approach that combines childhood sociology with critical disability studies theories. We describe how in applying the agreed qualitative research protocol for the multi-national project, we adjusted activities, processes and communication strategies to suit the abilities and preferences of individual children. We discuss enablers for engagement and how we managed the challenges confronted in implementing this research approach with participants aged 12- 15 years of age at an Australian school for children with disabilities. The paper concludes with a summary of lessons learned and next steps for this research.