Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study

The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, second, locate commonalities, differences, conflicting issues in the processes that may influence participation. This paper describes study design, methodology, methods along with lessons learned. In addition various methodological ethical concerns are raised. A sequential mixed-methods design was applied. Phase one (mapping) we used KIDSCREEN-27 how children QoL compared perspectives parents those non-disabled parents. Using Participation environment measure also studied parents’ participation different social contexts. Altogether 209 335 a control group (paired reports) participated phase one. (unpacking) consisted 14 case studies aged 8–18 years focus groups 21 people 19–35 years. initial analysis inductive data-oriented. We then critical transformative lenses shed light on meaning made relation context which participants found themselves. promotes an understanding important aspects intersect within contexts at times. theoretical understandings from this help unpack childhood disability terms knowledge power enhance ideas about normality constructed.