A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment

Abstract Objective The classification of severe and enduring eating disorders (SEED) was introduced to acknowledge the chronic nature of eating disorders (EDs) that persist beyond standard treatment. However, concerns exist regarding its role in reinforcing prognostic pessimism, shaping clinician at...

Full description

Saved in:
Bibliographic Details
Main Authors: Gabriel Lubieniecki, Isabella McGrath, Gemma Sharp
Format: Article
Language:English
Published: BMC 2025-07-01
Series:Journal of Eating Disorders
Subjects:
Online Access:https://doi.org/10.1186/s40337-025-01335-6
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1849333923814834176
author Gabriel Lubieniecki
Isabella McGrath
Gemma Sharp
author_facet Gabriel Lubieniecki
Isabella McGrath
Gemma Sharp
author_sort Gabriel Lubieniecki
collection DOAJ
description Abstract Objective The classification of severe and enduring eating disorders (SEED) was introduced to acknowledge the chronic nature of eating disorders (EDs) that persist beyond standard treatment. However, concerns exist regarding its role in reinforcing prognostic pessimism, shaping clinician attitudes, and influencing patient identity and treatment trajectories. This study explores lived experience perspectives on SEED classification, examining how diagnostic language affects treatment access, psychological outcomes, and engagement with care. Method An online survey was employed to collect demographic and clinical history data, followed by in-depth online semi-structured interviews with 41 individuals with longstanding eating disorders across a range of diagnoses. Reflexive thematic analysis examined participants’ experiences of SEED. Results Three key themes emerged: [1] SEED as a paradoxical classification, with participants describing the term as both validating and restrictive; [2] SEED as a justification for treatment withdrawal, with clinicians and services interpreting the classification as an indicator of treatment futility, contributing to reduced care opportunities and systemic exclusion; and [3] redefining SEED through recovery-oriented frameworks, with participants advocating for alternative terminology, such as “longstanding eating disorder,” and treatment models prioritising harm reduction, step-down care, and sustained engagement. Discussion These findings suggest that SEED classification is not merely a descriptor but actively shapes treatment options, patient agency, and long-term engagement with care. The inferred association between SEED and “treatment resistance” contributed to exclusion from services and reinforced therapeutic nihilism. Participants suggested the need for person-centred, recovery-oriented language and clinical frameworks that support continued access to care rather than rigid prognostic assumptions. Further research is needed to examine how chronicity-based classifications influence clinician decision-making, resource allocation, and stigma, informing more inclusive and responsive treatment models.
format Article
id doaj-art-233d4fa5079d44ca9006cd99a0c72364
institution Kabale University
issn 2050-2974
language English
publishDate 2025-07-01
publisher BMC
record_format Article
series Journal of Eating Disorders
spelling doaj-art-233d4fa5079d44ca9006cd99a0c723642025-08-20T03:45:43ZengBMCJournal of Eating Disorders2050-29742025-07-0113111510.1186/s40337-025-01335-6A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatmentGabriel Lubieniecki0Isabella McGrath1Gemma Sharp2Department of Neuroscience, School of Translational Medicine, Body Image & Eating Disorders Research Program, Monash UniversitySchool of Psychology, University of QueenslandDepartment of Neuroscience, School of Translational Medicine, Body Image & Eating Disorders Research Program, Monash UniversityAbstract Objective The classification of severe and enduring eating disorders (SEED) was introduced to acknowledge the chronic nature of eating disorders (EDs) that persist beyond standard treatment. However, concerns exist regarding its role in reinforcing prognostic pessimism, shaping clinician attitudes, and influencing patient identity and treatment trajectories. This study explores lived experience perspectives on SEED classification, examining how diagnostic language affects treatment access, psychological outcomes, and engagement with care. Method An online survey was employed to collect demographic and clinical history data, followed by in-depth online semi-structured interviews with 41 individuals with longstanding eating disorders across a range of diagnoses. Reflexive thematic analysis examined participants’ experiences of SEED. Results Three key themes emerged: [1] SEED as a paradoxical classification, with participants describing the term as both validating and restrictive; [2] SEED as a justification for treatment withdrawal, with clinicians and services interpreting the classification as an indicator of treatment futility, contributing to reduced care opportunities and systemic exclusion; and [3] redefining SEED through recovery-oriented frameworks, with participants advocating for alternative terminology, such as “longstanding eating disorder,” and treatment models prioritising harm reduction, step-down care, and sustained engagement. Discussion These findings suggest that SEED classification is not merely a descriptor but actively shapes treatment options, patient agency, and long-term engagement with care. The inferred association between SEED and “treatment resistance” contributed to exclusion from services and reinforced therapeutic nihilism. Participants suggested the need for person-centred, recovery-oriented language and clinical frameworks that support continued access to care rather than rigid prognostic assumptions. Further research is needed to examine how chronicity-based classifications influence clinician decision-making, resource allocation, and stigma, informing more inclusive and responsive treatment models.https://doi.org/10.1186/s40337-025-01335-6Severe and enduring eating disorder (SEED)Longstanding eating disordersDiagnostic labellingPatient perspectivesLived experienceTreatment engagement
spellingShingle Gabriel Lubieniecki
Isabella McGrath
Gemma Sharp
A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
Journal of Eating Disorders
Severe and enduring eating disorder (SEED)
Longstanding eating disorders
Diagnostic labelling
Patient perspectives
Lived experience
Treatment engagement
title A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
title_full A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
title_fullStr A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
title_full_unstemmed A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
title_short A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment
title_sort lifeline or a label lived experience perspectives on the severe and enduring eating disorder seed classification in eating disorder treatment
topic Severe and enduring eating disorder (SEED)
Longstanding eating disorders
Diagnostic labelling
Patient perspectives
Lived experience
Treatment engagement
url https://doi.org/10.1186/s40337-025-01335-6
work_keys_str_mv AT gabriellubieniecki alifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment
AT isabellamcgrath alifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment
AT gemmasharp alifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment
AT gabriellubieniecki lifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment
AT isabellamcgrath lifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment
AT gemmasharp lifelineoralabellivedexperienceperspectivesonthesevereandenduringeatingdisorderseedclassificationineatingdisordertreatment