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

Abstract

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

Implications of internalised ableism for the health and wellbeing of disabled young people

“…This understanding fits well with the transformative methodological approach (Mertens, 2017 ) used in the larger research project (Egilson et al, 2021 ) on which this article is based. The project addressed discrimination, marginalisation, oppression and social justice, with the overall aim of achieving changes at both the community and the institutional levels.…”

“…We nevertheless think that it is timely and important that disability scholars focus more on the relation between structure and subjective experiences (Charmaz, 2020 ), such as by investigating the physical and psychological strain of navigating a world designed for and run by nondisabled people. In our larger research project (Egilson et al, 2021 ), we have addressed discrimination, marginalisation, oppression and social justice, with the overall aim of achieving changes at both the community and the institutional levels. This paper fills in a gap in disability studies by addressing and uncovering the internalisation of ableism and its possible implications for the health and wellbeing of disabled people.…”

“…This study is part of a larger research project that focussed on the life quality and participation of disabled children and young people in Iceland (Egilson et al, 2021 ). As part of that project, four focus‐group sessions with young people—who all identified themselves as disabled—were conducted to explore their views and experiences.…”

“…We read the interview transcripts repeatedly, keeping in mind the theoretical concepts that would promote sensitivity to the topic and enable us to detect similarities and differences in the participants’ experiences. The overall research design, methodology and methods are thoroughly described by Egilson et al ( 2021 ).…”

“I Just Want to Live My Life”: Young Disabled People’s Possibilities for Achieving Participation and Wellness

“…Increasingly, the various environmental factors that influence these young people's opportunities for participation have been stressed, such as attitudes, the design of built environments, policies, services and systems (Anaby et al 2013;Egilson et al 2017aEgilson et al , 2018Hodge and Runswick-Cole 2013;Ingimarsdóttir et al 2023;Krieger et al 2018;Ytterhus et al 2015). Thus, personal and socio-cultural factors appear to intersect to mediate these children's and adolescents' participation in various situations (Egilson et al 2021). This resonates with the relational understanding of disability put forward in the preamble of the CRPD (2007), where disability is described as "the result of the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others".…”