Search

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]

Background: Severe and enduring anorexia nervosa (SE-AN), is a serious and persistent illness, despite 'state of the art' treatment. Criteria have been theoretically proposed, but not tested, and may not adequately capture illness complexity, which potentially inhibits treatment refinements. The clinical reality of death as an outcome for some people who experience SE-AN (1 in 20) and broadening access to voluntary assisted dying, further complicates the field, which is undeveloped regarding more fundamental concepts such as nosology, treatment, recovery definitions and alternative conceptualisations of SE-AN. The present paper is in response to this and aims to build upon qualitative literature to enhance phenomenological understandings of fatal SE-AN. Method: A published book, being the legacy of a 32-year-old professional artist offers a rich account of a life lived with AN, for 18 years with continuous treatment. A polysemous narrative via the interrelationship between the languages of the artist's words and visual art is translated via interpretative phenomenological analysis (IPA), offering rich insight into the SE-AN experience. Findings: The process of analysis induced three superordinate themes (1) Disappearing Self (2) Dialectical Dilemma (3) Death and Dying: Finding Meaning. Two cross cutting themes traversed these themes: (a) Colour and (b) Shifting Hope, where the former produced a visual representation via the 'SE-AN Kaleidoscope'. Collectively the themes produce a concept of SE-AN, grounded in the data and depicted visually through the artist's paintings. Conclusions: The picture of SE-AN revealed in the analysis extends upon conceptualisations of SE-AN, highlighting key processes which are thus far under explored. These factors are implicated in illness persistence eliciting opportunities for further research testing including diagnostic considerations and treatment directions. In SE-AN, distorted body image extends to a global distortion in the perception of self. Additional criteria for the severe and enduring stages of illness related to (1) self and identity processes (2) measures of 'global impoverishment' across life domains are proposed for consideration in the future testing of putative defining features of SE-AN. Plain English summary: Anorexia Nervosa (AN) is a serious and life-threatening illness. There is a need to understand more about why AN persists in becoming severe and enduring (SE-AN) for some people. One such way to build understanding of a condition is via the stories of those who experience it. This study utilizes a person's unique artistic language to do so. This has the potential to generate new ideas about a condition, especially those that may be beyond words for some people and therefore progress classifications for SE-AN for research and treatment purposes. The artist in this study contributes a unique perspective offering new areas for potential research such as understudied complex psychological processes for example shame, dissociation, 'self', emotional literacy, and anorexia as an identity. Additionally, other factors to be considered in the assessment and classifications of long-term cases of AN as well as an alternative understanding of AN persistence is proposed, beyond the concept of 'body image disturbance'. Alternative treatment approaches such as art therapy are indicated. Note: Contents of this paper may be distressing to people who have lost a loved one to an eating disorder and the following website may provide access to support if any of the content of his paper causes the reader distress: USA - NEDA https://www.nationaleatingdisorders.org/ UK BEAT https://www.beateatingdisorders.org.uk/ Australia Butterfly https://butterfly.org.au/ or Lifeline - which is an international organisation with local websites. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Current evidence-based treatments for adult anorexia nervosa (AN) have limitations, with high attrition, very poor outcomes for 20% of people, and no clearly superior manualised therapy for adults with AN. Specialist Supportive Clinical Management (SSCM) was designed as a control treatment but has evolved as a valid first line treatment. The present paper aims to provide an overview of the evidence base for SSCM and a pedagogical reconceptualization with expansion by theoretical integration (TI). Body: A secondary meta-analysis endorses SSCM as a promising treatment. This paper positions SSCM as a manualised therapy for adult AN with six unique features, namely (1) a philosophy which is person-centred, non-prescriptive, and informed by the person's strengths and values, (2) a focus on the person through inclusion of supportive psychotherapy and problem (clinical management), within target symptoms as defined in relation to AN, (3) a flexible and responsive therapy that could be delivered by a variety of clinicians with experience treating AN (4) a commitment to reversing starvation though a directional approach and a defined yet flexible stance on dietetic intervention (5) a commitment to the therapeutic relationship within all three phases of treatment, and (6) a therapy 'uncluttered' by specific mandates. In addition, this paper positions SSCM as a treatment that may be strengthened by other modalities and may also be adapted to the treatment of other eating disorders (ED), not just AN. The level of therapist sophistication to deliver upon the supportive psychotherapy component is explored and future directions are offered. Conclusion: SSCM is a unique and valid first line treatment for AN and would benefit from further expansion in line with emerging understandings of AN to strengthen it as a treatment. Speculation on aspects of potency would benefit from further testing. The proposed re-conceptualisation of SSCM in the context of its evidence may strengthen it as a treatment overall, position it as adaptable for treatment of other eating disorders and make it more accessible to clinicians. Plain English summary: The few established treatments for anorexia nervosa have limited success rates with high patient dropout. Specialist Supportive Clinical Management (SSCM) is a promising treatment for eating disorders. It would be beneficial to understand SSCM better and how and why it may work, which this paper proposes. SSCM is collaborative and flexible to people's needs, offering them treatment choices and to progress at their own pace. It is less prescriptive than other manualised therapies and therefore could be offered to people more than once, building hopefulness. It requires an experienced psychotherapist to deliver it as SSCM addresses both the symptom of the ED (food and exercise behaviours) as well as life issues causing difficulty to a person (psychotherapy), as presented by the patient. Grounded in a sound scientific basis, SSCM is a promising treatment that would benefit from further development, in line with evolving understandings of AN, and some ideas for this are offered within the paper. [ABSTRACT FROM AUTHOR]