Severe and enduring anorexia nervosa and the proposed “Terminal anorexia” category: an expanded meta synthesis

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”.