Quality of life experiences of parents of children with autism in Scotland

Abstract

The purpose of this study was to enter the world of the parents living with a child with autism, wondering what quality of life means for them and whether their engagement with social work services makes any difference to their quality of lives. Understanding the quality of life experiences of the parents of children with autism is relevant for policy making and social work practice. Based in a Scottish context, the objectives for this research were as follows: To explore the parent carers‘ description of the term quality of life To describe the parent carers‘ views on their quality of life in the context of the services provided by social services within (departments of) local authorities. To understand the systems, processes and procedures put in place by the local authorities to support parent carers To explore the scope for changes, if any, in the present social work approach in order to enhance the quality of life of parent carers. The study adopted a grounded theory methodology informed by a symbolic interactionist theoretical framework. Data were gathered from three study local authorities in Scotland. The participants include an almost equal number of male and female parents (total parent participants = 23); and social workers and operational managers from three study local authorities (total number of social workers =12, total number of operational managers =3). This study utilised focus groups and semi structured interviews to gather data. Using the constant comparison method, three main categories emerged; namely 'new normal', 'on-going burden' and 'limited help' which contextualised the quality of life experiences of parent participants in the study. Oppression emerged as the overarching theory. Drawing on the parental perspectives on quality of life distilled in this study, the implications for further research, professional practice and education are explored.