A thesis of clinical research and practice: Part A: An IPA exploring the lived experience of parents of autistic young people with anorexia nervosa; Part B: A thematic exploration of anorexia nervosa treatment for caregivers of autistic young people; Part C: Summary of clinical practice and assessments
Creators: name: Pettitt, Laura
Publisher: name: University of Surrey
Year: 2024
Subjects: Anorexia nervosa, Autism Spectrum Conditions, parenting

description: &lt;strong&gt;&lt;em&gt;Background:&lt;/em&gt;&lt;/strong&gt; Anorexia nervosa has the highest mortality rate of any psychiatric condition, and research has consistently suggested that conventional anorexia nervosa treatments are less effective for individuals who are autistic and experience co-occurring anorexia nervosa. While adaptations to conventional anorexia nervosa treatments for autistic adults have been developed and piloted, a similar pathway is yet to be developed for young people. Current gold-standard anorexia nervosa treatment for young people is family-based therapy, requiring the young people’s parents to play a significant role within treatment. As a result, caregivers are heavily involved in treatment and recovery. This means that they can offer a unique insight into the experience of the young person they care for, and the suitability and effectiveness of treatment approaches currently being offered, and the conflicts which between anorexia nervosa treatment and autism spectrum conditions.&lt;strong&gt;&lt;em&gt;Objective:&lt;/em&gt;&lt;/strong&gt; This thesis aimed to increase understanding of the experience of anorexia nervosa treatment for caregivers of this group of young people, as well as understand which aspects of treatment they find helpful and unhelpful. It was hoped that this research would provide new insights into the lived experience of this group of carers to enable enhanced understanding of their unique needs, as well as enabling understanding of the adaptations which they felt would be helpful to improve current treatment offered by services. &lt;strong&gt;&lt;em&gt;Design:&lt;/em&gt;&lt;/strong&gt; The Thesis Portfolio consists of the following: Part A is an Interpretative Phenomenological Analysis providing in-depth exploration of the lived experience of these caregivers. Part B presents a Framework Analysis which explores specifically the experience of this group of carers’ experience of current anorexia nervosa treatments, to explore which aspects they find helpful and unhelpful, and any adaptations they feel would improve treatment effectiveness for young people with these co-occurring conditions. Part C of this thesis summarises my clinical experience and the academic assessments completed during clinical training.&lt;strong&gt;&lt;em&gt;Results:&lt;/em&gt;&lt;/strong&gt; The findings of the Interpretative Phenomenological Analysis suggest that largely, caregivers take on a central role within treatment, advocating for their child to seek appropriate support for both conditions. This may coincide with the parent developing understanding of the young person’s autistic identity and needs, changing their parenting, and their child’s anorexia nervosa having significant effects on the family’s life, and caregiver’s wellbeing. The findings of the Framework Analysis suggest that caregivers perceive understanding of autism spectrum conditions to be central to anorexia nervosa treatment success. They identify several aspects of current anorexia nervosa treatments which conflict with their autistic child’s needs, such as placing too many demands on their child and not allowing enough time for them to adapt to change, but acknowledge the importance of positive professional relationships, treatment adaptations, and early detection of autism spectrum conditions in improving outcomes of anorexia nervosa treatment for their children.&lt;strong&gt;&lt;em&gt;Conclusion:&lt;/em&gt;&lt;/strong&gt; Exploring different aspects of the experience of this group of caregivers enables understanding of their lived experience, as well as their unique perspectives on conflicts between their child’s needs as an autistic person, and current anorexia nervosa treatment. The studies offer unique insights into the needs of this group of caregivers and ideas to inform changes to current practice to improve outcomes of anorexia nervosa treatment for autistic young people.