title: Severe and enduring anorexia nervosa (SEED-AN): a qualitative study of patients with 20+ years of anorexia nervosa.
abstract: Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic illness, is appropriately applied to SEED-AN, which has major impacts in all realms.
authors.affiliation: Barnet Enfield and Haringey Mental Health Trust, UK.|University College London, UK.
authors.forename: Paul H
authors.initials: PH
authors.lastname: Robinson
authors.affiliation: Barnet Enfield and Haringey Mental Health Trust, UK.
authors.forename: Roza
authors.initials: R
authors.lastname: Kukucska
authors.affiliation: Barnet Enfield and Haringey Mental Health Trust, UK.
authors.forename: Giulia
authors.initials: G
authors.lastname: Guidetti
authors.affiliation: University College London, UK.|Ulster University, UK.
authors.forename: Gerard
authors.initials: G
authors.lastname: Leavey
mesh_terms: D000328:Adult; D000856:Anorexia Nervosa / Q000175:diagnosis* / Q000523:psychology* / Q000628:therapy; D015992:Body Mass Index; D002908:Chronic Disease; D015897:Comorbidity; D003299:Cooperative Behavior; D003631:Day Care, Medical; D003866:Depressive Disorder / Q000175:diagnosis / Q000523:psychology / Q000628:therapy; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D007406:Interview, Psychological; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D010348:Patient Care Team; D010359:Patient Readmission; D011379:Prognosis; D036301:Qualitative Research; D016896:Treatment Outcome; D006113:United Kingdom
keywords: SEED; anorexia; chronic; qualitative; severe and enduring anorexia nervosa