Investigating service users’ perspectives of eating disorder services: A meta-synthesis

Objective: Despite a number of qualitative studies published from the perspective of eating disorder (ED) service users, there has been no attempt to exclusively synthesise their views to gain a fuller understanding of their ED service experiences. It is important to understand this perspective, since previous research highlights the difficulties ED healthcare professionals report when working with this client group. Method: A systematic search of the literature was conducted to identify qualitative studies focusing on experiences of ED services from the perspective of service users. Twenty-two studies met the inclusion criteria and underwent a quality appraisal check using the Critical Appraisal Skills Programme (CASP) tool for qualitative research. These were then synthesised using a meta-synthesis approach. Results: Four overarching themes were generated: ‘Treatment: Focus on physical vs. psychological symptoms’; ‘Service Environment: The role of control within services’; ‘Staff: Experiences with staff and the value of rapport’; and ‘Peer Influence: Camaraderie vs. comparison’. Service users expressed a desire for more psychological input to tackle underlying difficulties relating to their ED. A complex relationship with feelings of control was described, with some feeling over-controlled by service providers, while others retrospectively recognised the need for control to be taken away. Staff values, knowledge and trust played a significant role in treatment and recovery. Peers with an ED were described to be a valuable source of understanding and empathy, but some found peer influence to perpetuate comparison and competitiveness. Discussion: The results portray some of the conflicts and complexities that service users encounter in ED services. A running thread throughout is the perceived importance of adopting an individualised approach within these services

A comparison of the eating disorder service experiences of autistic and non-autistic women in the UK

Objective Qualitative studies report that autistic women have poor experiences when being treated for an eating disorder (ED) and express that ED services are not appropriately tailored to meet their needs. It is unclear whether their experience differs to other women accessing ED services. The aim of the current study was to compare autistic and non-autistic women's ED illness history and experiences in ED services. Method An online survey about ED illness history and their experience with ED treatment was completed by 46 autistic women with a restrictive ED and 110 non-autistic women with a restrictive ED. Results Despite some similarities, there were three key differences in the experiences reported by autistic and non-autistic women. First, autistic women reported a longer duration of ED and being diagnosed with an ED at a younger age than non-autistic women. Second, autistic women reported accessing a broader range of healthcare settings and ED treatments than non-autistic women when being treated for an ED. Finally, autistic women rated their experiences of inpatient care, dietetic input, and cognitive behavioural therapy (CBT) as significantly less beneficial than non-autistic women when being treated for an ED. Conclusion These findings increase understanding of autistic women's ED experience and can help to shape ED services and treatments to better accommodate the needs of their autistic clients

Towards identifying a method of screening for autism amongst women with restrictive eating disorders

Abstract: Objective: Up to 37% of patients with anorexia nervosa score above cut‐off on autism screening measures. These individuals typically have poorer outcomes from standard eating disorder interventions and could therefore benefit from adaptations. Accurately identifying these individuals is important for improving autism referral processes and clinical pathway decisions. This study's aim was to identify subscales of questionnaires measuring constructs associated with either autism or eating disorders that, when combined with traditional autism screening measures, would improve the ability to identify women with restrictive eating disorders who might benefit from a full autism assessment. Method: One hundred and sixty women with restrictive eating disorders, with (n = 42) or without (n = 118) an autism diagnosis completed a battery of questionnaires. Using conditional stepwise binary logistic regression, we attempted to improve the autism spectrum quotient 10 item's (AQ‐10) ability to discriminate between autistic and non‐autistic women in a restrictive eating disorder sample. Results: In a binary logistic regression model, the AQ‐10 reliably discriminated between autistic and non‐autistic women with an accuracy rate of 85% but had relatively low (69%) sensitivity, reflecting a high rate of false negatives. Adding three subscales to the model (Glasgow Sensory Questionnaire Auditory, Camouflaging Autistic Traits Questionnaire Compensation and Toronto Alexithymia Scale Externally Orientated Thinking) significantly improved its differentiating ability (accuracy = 88%, sensitivity = 76%, specificity = 92%). Conclusions: We have identified three subscales that, when used in combination with the AQ‐10, may help clinicians understand the pattern of autistic traits in their patients with a restrictive eating disorder. This can inform clinical decisions about whether to refer for a full autism assessment and whether to adapt standard eating disorder treatments to accommodate autistic traits. Future studies are needed to test the model in samples where participants have undergone a full autism assessment

“It’s not that they don’t want to access the support… it’s the impact of the autism”: the experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals

This study explores autistic women’s experiences of eating disorder services. Estimates suggest that 20%–30% of women in treatment for anorexia nervosa display diagnostic features characteristic of autism. Research suggests that autistic individuals’ needs are not being met by standard anorexia nervosa treatments. In the current study, in-depth interviews were conducted with 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 eating disorder healthcare professionals. Using thematic analysis, three overarching themes were identified: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that there were diverse barriers facing autistic women when in treatment for anorexia nervosa, and these were accentuated by a lack of autism understanding within eating disorder services. Future research should focus on developing interventions that are tailored to the specific needs of autistic individuals with anorexia nervosa