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Background: Severe and enduring anorexia nervosa (SE-AN) is amongst the most impairing of all mental illnesses. Collective uncertainties about SE-AN nosology impacts treatment refinement. Qualitative research, particularly lived experience literature, can contribute to a process of revision and enrichment of understanding the SE-AN experience and further develop treatment interventions. Poor outcomes to date, as evidenced in clinical trials and mortality for people with SE-AN (1 in 20) demonstrate the need for research that informs conceptualisations and novel treatment directions. This interpretative, meta-ethnographic meta-synthesis aimed to bridge this gap., Methods: A systematic search for qualitative studies that explored the AN experiences of people with a duration of greater than 3 years was undertaken. These studies included those that encompassed phenomenology, treatment experiences and recovery., Results: 36 papers, comprising 382 voices of SE-AN experiences informed the meta-ethnographic findings. Four higher order constructs were generated through a synthesis of themes and participant extracts cited in the extracted papers: (1) Vulnerable sense of self (2) Intra-psychic processes (3) Global impoverishment (4) Inter-psychic temporal processes. Running across these meta-themes were three cross cutting themes (i) Treatment: help versus harm, (ii) Shifts in control (iii) Hope versus hopelessness. These meta-themes were integrated into conceptualisations of SE-AN that was experienced as a recursive process of existential self-in-relation to other and the anorexia nervosa trap., Conclusions: The alternative conceptualisation of SE-AN proposed in this paper poses a challenge to current conceptualisations of AN and calls for treatments to engage with the complex intra and inter-psychic processes of the SE-AN, more fully. In doing so, clinicians and researchers are asked to continue to be bold in testing novel ideas that may challenge our own rigidity and attachment to dominant paradigms to best serve the individual person with SE-AN. The 'global impoverishment of self', found in this synthesis of AN experiences, should inform proposed diagnostic criteria for SE-AN., (© 2023. BioMed Central Ltd., part of Springer Nature.)

This updated meta-synthesis explores further dimensions of the lived experience of severe and enduring anorexia nervosa (SE-AN) since recent contention regarding proposed “terminal anorexia nervosa (T-AN)”. The paper aims to update the original synthesis and to situate participant responses to the category of “T-AN”. Thus, extending the proposed conceptualization of the SE-AN experience. A systematic search identified published scholarship (between August 2022 and July 2023), derived from five bibliographic databases. A comprehensive methodology combining Interpretative Phenomenological Analysis and a meta-ethnographic framework enabled the synthesis of meta-themes across 9 new studies. These meta-themes were mapped onto the primary synthesis to further develop upon the earlier LE conceptualization of SE-AN. Nine extracted papers expanded the voices to 447 people within 45 studies. All papers affirmed and enriched the previous themes, and a novel theme was generated from the recent papers. The new theme, “walking on a knife’s edge, caught between worlds“, informed an expanded conceptualization of SE-AN, termed the Web of Hope. Thus, demonstrating how participants held onto hope in the face of the SE-AN experience. Death, dying and “terminality”, were notably absent in the 36 papers in the previous meta-synthesis. Since the proposal of the category of “terminal anorexia” in 2022, studies on the lived experience of SE-AN increasingly focused on how people hold onto hope alongside SE-AN. The findings further drive the field to reflect on therapeutic interventions, labelling and diagnosis, in the face of unknowns, on the premise of “first, do no harm”. [ABSTRACT FROM AUTHOR]