Parents' stories of their children's lives
Research type
Research Study
Full title
Parents’ stories of their children's lives: a follow-on study of QUEST cohort parents
IRAS ID
255428
Contact name
Bryony Beresford
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
0 years, 4 months, 28 days
Research summary
Summary of Research
Many young children with autism have behavioural and/or mental health problems (for example, anxiety). For some, these difficulties will persist and develop into severe and intractable behavioural or mental health problems. However, not all follow this trajectory. At the moment we do not know what factors increase the risk of, or protect against, poorer mental health and behavioural outcomes during adolescence. This study is part of a larger piece of work which is seeking to identify:- the early childhood personal, behavioural, family and wider environmental risk and protective factors for subsequent mental health and behavioural problems in later childhood and adolescence
- the types of mental health and behavioural problems which are most impairing
- potential mediators of these difficulties (e.g. contact/support from services; specific interventions; families ways of managing)METHOD: Semi-structured interviews with parents of adolescents (12-16 years) drawn from an existing cohort of children with autism (the QUEST cohort). This cohort has been subject to two recent rounds of data collection, 2 years apart. These data, along with the initial wave of data collection when children were recruited to the cohort are being used for the quantitative aspect of this work. This cohort also forms the sampling pool for the qualitative element – which is what this REC application concerns.
Early findings from analysis of quantitative data regarding the risk and protective factors, and mediators, will inform the sampling frame for this qualitative follow-on study. We envisage this will include: gender, schooling, family composition, and type of behavioural or mental health problems experienced in early/middle childhood. Up to thirty parents will be interviewed.
Interviews will explore parents' views on the factors which precipitated/exacerbated their child’s difficulties and those which have mitigated against deteriorations in mental health/behavioural problems and/or supported recovery.
ANALYSES: Interviews will be audio-recorded and transcribed. Data will be analysed thematically.
Summary of Results
Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child's mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child's difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.REC name
West of Scotland REC 1
REC reference
18/WS/0204
Date of REC Opinion
5 Feb 2019
REC opinion
Further Information Favourable Opinion