“No one was coming to save us”: an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa
摘要
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.
MethodsSemi-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.
ResultsThree 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.
ConclusionsThis 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.