City Research Online

Abstract

Parenting an autistic child involves numerous challenges, which change as children grow into adolescence. These challenges often affect parents' mental health; however, few interventions have addressed these issues for parents of adolescents in the autistic community. Considering the importance of mental health promotion initiatives to enhance psychological well-being and the lack of available initiatives focused on parents of autistic adolescents, the aim of this research was to develop a psychological toolkit, Auteens CAFE, to improve the mental health of parents and caregivers of autistic adolescents and promote well-being among families of autistic adolescents. Following the MRC guidance for the development of complex interventions and the Person-Based Approach, combined with Acceptance and Commitment Therapy, and the Behaviour Change Wheel, three studies were conducted to achieve the research goals. The first study was a systematic review of the literature regarding interventions available for parents of neurodivergent adolescents focusing on parental mental health. Then, I conducted a qualitative investigation of the experiences and perceptions of parents of autistic adolescents' mental health in the UK as they navigate parenthood. Finally, I carried out a co-production study focused on the planning stage of complex interventions in collaboration with parents and stakeholders working with autistic families. The findings of the first study provided an overview of the main delivery characteristics, targeted population, and components used in interventions for parents of neurodivergent adolescents and indicated that while the number of studies focusing on interventions for this population has increased in the past years, their evaluation is still in preliminary stages and mostly aims to reduce core clinical difficulties. As for the findings from the qualitative study, mothers of autistic adolescents reported ambiguous feelings about parenthood and autism, as well as divergent experiences regarding available sources of support, which was often linked with their perception of the support network’s understanding of their reality. These experiences also shape their perceptions of internal resources and, therefore, influence the way they cope with challenges related to parenting. The results of these two studies were used to inform the third co-production study, which involved five advisory board members who were reunited for three meetings. The content of the meetings generated three themes that guided the creation of the guiding principles, planning table, and logic model for the new toolkit for parents. From these three themes, (1) The power of knowledge, (2) Parent’s needs matter, and (3) Promoting health within the community, the toolkit Auteens CAFE was developed as a digital toolkit comprising three hubs: the Info Hub, Wellness Hub, and Community Hub. Future studies will focus on evaluating the acceptability and preliminary effectiveness of the toolkit in improving the mental health of parents and caregivers of autistic adolescents and investigate the feasibility of implementing a larger trial using a randomised controlled design.

Keywords: mental health, parenting, autism, co-production, intervention development

Publication Type:	Thesis (Doctoral)
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments:	School of Health & Medical Sciences > Healthcare Services Research & Management School of Health & Medical Sciences > School of Health & Medical Sciences Doctoral Theses Doctoral Theses

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