Quality of Life Experiences of Parents of Children with Autism in Scotland

Mrs Deepa Kuriachan1

1Ballarat Health Services, Smythescreek, Australia

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 utilized 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 contextualized 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.

Biography:

I was born in India. I have spend approximately 8 years living and working in Scotland prior to relocating to Australia in 2014. I began my social work career  as a support worker in a residential unit in Scotland for young people with complex disabilities.  I completed my Masters in Social Work  from India in 2005.   I have approximately 13 years of post qualifying experience as a social worker. Over the years, I have been fortunate to gain a diverse international work experience, having worked in the United Kingdom , Australia  and India, both in the statutory and non statutory sectors (not for profit or community service organisations). Over the years, I have worked with a heterogeneous client group including children and adults presenting with a a wide range of psycho social issues i.e. learning disability, mental health, exposure to family violence, experiencing abuse and trauma,  substance misuse, juvenile offending, poor educational outcomes and so on.

I recently (July 2018) graduated with a  PhD in Social Work (part time study which I commenced in Scotland and the last leg of the study was completed as a distant/online student) from University of Edinburgh, Scotland.