Experts by experience - understanding how individuals with eating disorders conceptualise their distress and recovery: a systematic review of factors which helped and hindered personal recovery from anorexia nervosa, bulimia nervosa and binge eating disorder, which are compared across eating disorder presentations and an empirical study to understand whether individuals with lived experience of an eating disorder find a novel conceptualisation of distress, developmental interpersonal trauma disorder, personally relevant and helpful
Creators: name: Fallon, Jennifer
Publisher: name: The University of Edinburgh
Year: 2023
Subjects: systematic review
disordered eating
eating disorders
recovery processes
psychological wellbeing
Developmental Interpersonal Trauma Disorder

description: PURPOSE: The qualitative systematic review explored how individuals with lived experience of Anorexia Nervosa (AN), Bulimia Nervosa (BN) and Binge Eating Disorder (BED) define their personal recovery and factors which helped and hindered this process, which was compared across eating disorder (ED) presentation. This is important as the way individuals define their recoveries may differ from research and healthcare definitions, which has implications for treatment outcomes. The empirical study sought to understand whether individuals with experience of an ED found a novel conceptualisation of distress, namely Developmental Interpersonal Trauma Disorder (DITD) applicable and helpful to them. DITD accounts for underlying childhood trauma which may create deficits in identity development, interpersonal functioning and development of healthy coping, relevant in an ED population due to the high prevalence of childhood trauma. METHODS: A comprehensive search of multiple electronic databases was conducted to find qualitative studies regarding ED recovery, followed by removal of duplications and screening using eligibility criteria via title and abstract then full text. Quality of final studies was assessed using the Critical Appraisal Skills Programme (CASP Qualitative Checklist, 2018). Thematic synthesis informed by Thomas and Harden (2008) was used to develop descriptive and analytical themes, the confidence of which findings was assessed using Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual; 2018) criteria. In the empirical study, (n = 152) participants completed an online cross-sectional survey. Potential markers of DITD, as measured by sense of belonging, wellbeing, healthy identity and coping self-efficacy were gathered along with ED presentation and experience of childhood trauma. Ordinal logistic regression analyses were used to understand the associations between potential markers of DITD, childhood trauma, ED presentation and ratings of DITD applicability and helpfulness. RESULTS: Thirteen final studies were identified for inclusion in the review, totalling (n = 135) participants. No major methodological issues were identified in primary studies. Results illustrated a mostly transdiagnostic view of recovery representing a way to meet previously un-met social, physical and psychological needs. Individuals with AN compared to BN and BED varied in their definitions of self-acceptance and improved social relationships. In the empirical study, experience of childhood trauma was associated with higher ratings of DITD aplicability. Restrictive ED presentation moderated the association between greater sense of belonging in families and higher DIDT helpfulness. There were no other significant predictors of DITD applicability and helpfulness. CONCLUSIONS: Results of the review suggest that the creation of coping strategies that fulfil un-met psychological and social needs are core aspects of recovery within AN, BN and BED. If accounted for, these may more accurately represent and facilitate meaningful recovery. The empirical study concluded that individuals with EDs may have a different working model to explain their distress than by considering the impact of childhood trauma on developmental competencies. However, results may be considered from the perspective that individuals may struggle to recognise their own needs due to normalisation of trauma, self-subjugation and due to dissociation from avoidant-attachment styles from early traumatisation. Further research is warranted to understand how individuals with EDs conceptualise their distress to help inform treatment avenues for this population.