"No one was coming to save us": an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa.

BACKGROUND: Caring for someone with anorexia nervosa is associated with high levels of carer burden and burnout, however, there is a lack of research into caring for individuals who have anorexia nervosa and are also autistic, despite high levels of co-occurrence. This study aimed to offer an in-depth exploration of experiences for this group of caregivers.

METHODS: Semi-structured interviews were conducted with six parents with an autistic daughter who had experienced anorexia nervosa. Data was analysed using Interpretative Phenomenological Analysis which enabled in-depth exploration of carers' lived experience.

RESULTS: Three themes and seven sub-themes were identified. These explored the experience of eating disorders services as largely unprepared to work with dual diagnosis; the impact of their daughter being autistic on carers' experience of anorexia nervosa treatment and recovery, with variation depending on several factors; the journey of parenting through anorexia nervosa, and changes to parenting as a result.

CONCLUSIONS: This adds to our understanding of the lived experience of this group of carers, highlighting a need for early detection of autism spectrum conditions, enhanced staff understanding of autism spectrum conditions, tailored treatment, and specific carer support for this group.