Our goals with this study

Our study aims to better understand life quality and participation of disabled children and youth in Iceland. We acknowledge that to obtain insight into how disabled children and youth go about their daily lives we need to listen to the children themselves. This is a relatively new approach, in the past most attention has been given to the views of parents and professionals in childhood research. This relates especially to disabled children, because of perceived difficulties in getting access to them and negative assumptions about their competence.

We understand life quality as a personal experience that reflects the degree to which life is considered as pleasant, meaningful and connected with positive feelings such as joy, safety and satisfaction. Life quality is closely related to participation in social life and education. Thus we also want to explore disabled children´s interactions and involvement in activities in the home, school and in their communities. We furthermore take into account the extent to which factors in their environment support or restrict the children´s participation and well-being, such as the availability and quality of necessary support.

Phase one: mapping

Our work in the first phase will be mainly to study how the children themselves evaluate different aspects of their quality of life and compare this with the perspectives of their parents as well as that of non-disabled children and their parents. We also study parents’ perspectives of their children’s participation in different contexts. This will lead to a better understanding of how disabled children are doing at home, at school and in other social contexts. It will shed light on their positive and negative experiences, which can show us ways that do and do not work to improve disabled children‘s life quality.

Phase two: understanding

In the second part of the study we will work to get more insight into the reasons behind disabled children‘s quality of life and participation. Therefore we will collect more information on the views of children and their parents. We will analyse this information to find explanations of how and why positive or negative experiences in terms of life quality and participation come into being. In this work we will pay close attention to the social and material environment of the children in different fields such as the home, school, community, health care and social services. We will also take into account when, how, and how often disabled children get to be involved in decisions regarding important aspects of their lives. We depart from a so-called “critical approach” in disability studies, which enables us to understand better how the children’s social environment influences their life quality and participation. We will use different theoretical approaches such as critical discourse analysis to generate new insights.

What can we learn from the study?

The results from our study will help inform and improve the way in which services and support are provided to disabled children and youth, and their families. Also, we will be able to better understand the concepts of quality of life and participation, how they interact and what they mean to disabled children and their families. We aim to recommend improved ways of measuring quality of life and participation, which will take into account the role of the children’s environment in creating opportunities for their well-being and inclusion.

University of Iceland | Sæmundargötu 2 | 101 Reykjavík | E-mail: sne@hi.is
Research project funded by the Icelandic Research Fund (nr. 174299-051)