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

Abstract

Aim: Based in a Scottish context, 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 made any difference to their quality of lives. Method: 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. Results: 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. Significance of the findings to allied health: The findings offer social workers an 'autism lens' to better understand the lived experience of male and female parents of the child with autism. It also support a case for more training, better coordination of services and establishment of an internal register for those with an autism diagnosis for closer monitoring and streamlining of resources. A few prospective research questions were identified for future allied health research.