Understanding Quality of Life in Autism Spectrum Conditions. Version 1
Research type
Research Study
Full title
Understanding quality of life in Autism Spectrum Conditions (ASCs).
IRAS ID
231301
Contact name
Eva Loth
Contact email
Sponsor organisation
King’s College London
Duration of Study in the UK
2 years, 3 months, 26 days
Research summary
The proposed project will investigate perceptions of quality of life in males and females with autism spectrum conditions (ASCs) aged 8-35 years, their parents, and professionals working in the field of ASCs. Our first aim is to explore whether existing definitions of quality of life, according to the World Health Organisation, are relevant to the autism community. Secondly, we will investigate the extent to which individuals with ASCs report that their; 1. core (e.g. social-communication difficulties, restricted and repetitive behaviours, and sensory anomalies), and 2. co-occurring symptoms (e.g. anxiety & depression), impact aspects of their quality of life. Finally, we aim to compare the perceptions of individuals with ASCs to those of their parents, to better understand the parent-self report discrepancy that is apparent in the ASC quality of life literature. We also aim to gain the perceptions of professionals to establish how aligned research priorities are with the experiences of individuals with ASCs.
To achieve the aims noted above we will be recruiting participants to a qualitative interview session based at King’s College London. Qualitative methodology enables us to gather rich data that is particularly relevant to the highly personal and subjective construct of ‘quality of life’. The session will last for approximately 60-90 minutes, during which participants with ASCs will be asked to rate their quality of life across several domains (e.g. friendships, family relationships, education/work) and to discuss the strengths and challenges they face in each. Parents will answer the same questions about their son/daughter, and questions about their own QoL. Finally, professionals will be asked to comment on their own beliefs about quality of life and the factors that influence it for individuals with ASCs. The project is funded by the Sackler Institute for Translational Neurodevelopment.REC name
London - Bromley Research Ethics Committee
REC reference
18/LO/0547
Date of REC Opinion
15 Jun 2018
REC opinion
Further Information Favourable Opinion