A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders

Sukhi Shergill,Kate Tchanturia,Emma Kinnaird,Vanessa Lawrence,Madeleine Oakley

doi:10.1186/s40337-021-00397-6

Sukhi Shergill, Kate Tchanturia + Show 3 more

Open Access

https://doi.org/10.1186/s40337-021-00397-6

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Abstract

BackgroundCarers of people with eating disorders (EDs) are known to experience a lack of support, high levels of unmet needs and resulting distress. Specific support and interventions for carers may benefit both the carer, and their loved one with an ED. Individuals with co-occurring autism and EDs may present with additional needs and difficulties relating to their Autism Spectrum Condition (ASC) that impact their carers. However, there is a lack of research exploring whether carers of people with ASC and EDs have specific support needs, and what kinds of support may be most beneficial for this population.MethodsThis study used a qualitative interview design, utilising peer interviews. Eleven carers participated in interviews about their experiences as a carer, and their views on existing support systems and potential improvements. As the study took place during the initial UK coronavirus lockdown, the impact of the lockdown also emerged as a topic during the interviews. Interviews were transcribed and analysed using thematic analysis.ResultsFive themes were identified: challenges associated with co-occurring Autism and EDs, a lack of existing support for carers from healthcare services, the personal impact of caring for someone with both ASC and EDs, ideas for how carers can be best supported, and the impact of the coronavirus on carers.ConclusionsCarers of loved ones with both ASC and EDs described the experience as having a significant personal impact on their lives, but also experienced a lack of support from healthcare services. There was a perception that caring for someone with both an ASC and EDs presents additional challenges compared to caring for someone with an ED only, and that this population therefore requires specialised support. Recommendations for possible support options, and for further research, are outlined.

Highlights

Carers of people with eating disorders (EDs) are known to experience a lack of support, high levels of unmet needs and resulting distress
We know that individuals with both an eating disorder and autism can experience further difficulties compared to someone with an eating disorder only, which might present an additional challenge for their carer
We wanted to explore the experiences of carers of people with both autism and an eating disorder, to understand how healthcare services can best support this population

Summary

Introduction

Carers of people with eating disorders (EDs) are known to experience a lack of support, high levels of unmet needs and resulting distress. A young person developing an ED will have a profound impact on their parents, who often find themselves acting as carers for their child and playing a key role in their treatment. Carers of people of EDs consistently report high levels of psychological distress and perceived burden, which appear to be driven by unmet practical and emotional support needs [5,6,7]. Psychoeducational and skills training-based interventions have been found to benefit carers and their loved ones with an ED, reducing carer distress, perceived burden, and levels of expressed emotion [14,15,16]

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