Parents' stories of their children's lives: a follow-on study of QUEST parents
The purpose of this study is to understand the factors that influence the mental health and well-being of teenagers in the autism spectrum.
For some autistic people, the greatest impact on their lives comes not from the core autism characteristics, but rather from co-occurring mental health and behavioural difficulties. Very little is currently known about why some children on the autism spectrum develop chronic mental health and behavioural difficulties which have a significant impact on their lives, whilst others are less affected. Until this is better understood it is difficult to intervene to prevent the development of such difficulties, to offer guidance to services as to where to prioritise resources, or to offer advice to parents as they make decisions about how best support and nurture their child.
The ‘Parents’ stories of their children’s lives’ study is part of a programme of work funded by the National Institute of Health Research entitled: ‘Improving the outcomes for people with autism spectrum disorders by reducing mental health problems’ (IAMHealth), which is led by Professor Emily Simonoff at the Institute of Psychiatry, King’s College, London. It will supplement and offer explanations for findings from analyses of longitudinal quantitative data collected about a cohort of autistic children and their families during childhood and early adolescence. These analyses are seeking to identify factors that may reduce or increase the risk of mental health difficulties during the teenage years. Our study participants will be sampled from this cohort (known as the QUEST cohort).
The aims of the ‘Parent’s Stories of their children’s lives’ study are to investigate parents’ views on:
- The types of mental health and behavioural difficulties that are most problematic for children on the autism spectrum and their families.
- The childhood personal, family, and wider environmental factors that have contributed to any changes (either positive or negative) in the mental health and behavioural difficulties experienced by their child during the course of their childhood and adolescence
In-depth interviews with be conducted with around 30 parents purposefully sampled from the QUEST cohort. Our sample will include those whose child has experienced changes in their mental health during the course of their childhood, an equal representation of gender, as well as children with and without learning difficulties.
As for all aspects of the IAMHealth programme, this study will work with the programme’s two advisory panels (one comprising autistic adults, the other parents).
May 2019 - June 2020