Aims of the study

The LIFE-DCY research project had two aims a) to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and b), to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. A sequential mixed-methods design was applied. This figure (click to enlarge) illustrates the design and methodology of the LIFE-DCY project:

Phase one: mapping

We used KIDSCREEN-27 to study how disabled children evaluate their QoL compared to the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parent perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated.

Key findings reflect that the disabled children rated their QoL lower than the children in the control group but nevertheless mostly within the average range. Parents of disabled children evaluated their children’s QoL lower on all dimensions than did parents of children in the control group, and the difference was substantially larger than for the children´s self-reported scores. Finally, parents of disabled children rated their children’s QoL considerably lower than the children did themselves, even if they were asked to answer “just as their child would.” According to their parents, disabled children participated in fewer activities and were less involved than their peers at home, within school and the community. Parents of disabled children desired more change in their child’s participation than did other parents. Also, parents of disabled children much more often reported that characteristics of the environment made participation harder.

Phase two: unpacking

Phase two consisted of 14 case studies with disabled children aged 8–18 years. Four focus groups with altogether 21 disabled people aged 19–35 years who reflected on life quality and participation in relation to their childhood and adolescence were also conducted.

Key findings illuminate the complex social forces that appear to produce participation, life quality and differential access for disabled children and youth. We strived to develop a nuanced and detailed picture of the complex web of individual and social structural barriers faced by disabled children and how they accommodate or resist these in their talk and actions. The scrutiny of the interplay of different elements that together construct disability within a specific social field were particularly useful.

What can we learn from the study and how will the findings be applied?