Conceptualisation of severe and enduring anorexia nervosa: a qualitative meta-synthesis

“Methodology for evidence synthesis Meta-ethnography was used to synthesize findings across the extracted studies to produce something ‘greater than the sum of its parts’ [37].”

“Complex questions demand complex forms of evidence [19] and in (re)configuring understandings of SE-AN and its treatment, all forms of evidence potentially offer a vital contribution.”

“Quality assessment of selected studies Quality appraisal of all the extracted studies utilised an adapted, 12 item CASP tool [34].”

“We have termed this process functional adaptation from a synthesis of ecological psychology [76] and existential perspective [77] that is designed for ‘survival’ of the ‘human organism’ [78].”

“Although SE-AN has been acknowledged within clinical practice guidelines in the last decade [8], unresolved questions persist.”

“The therapist sees the person: A recent treatment innovation Maudsley Model for Anorexia Nervosa Treatment for adults (MANTRA) has been founded on a comprehensive theoretical basis of a cognitive-interpersonal model of maintenance [95].”

“Around 20 percent of individuals who experience anorexia nervosa (AN) have a protracted illness course [3, 4].”

“Around 20 percent of individuals who experience anorexia nervosa (AN) have a protracted illness course [3, 4].”

“Paradoxically, by adjusting our goals for treat-ment to better meet a person where they are, has been shown to have improved outcomes with better engagement and retention in treatment and improved quality of life for that which remains (Touyz et al. 2013 [106]).”

“The first meta-theme of Vulnerable sense of self is consistent with current understanding of the development and maintenance of AN [82] as a complex interplay of personal, interpersonal, family, sociocultural, biological, and cognitive-behavioural aspects.”

“The headline, descriptor, exemplar (HDE) method defined for this review [38] enabled integrity in the progressive interpretation, facilitating communication between synthe-sizers and subsequent thematic comparisons.”

“Furthermore, emphasising that in the absence of a definition for recovery [108], this is best defined by the experiencing individual and what it is a person wishes to ‘recover’ from their life.”

“To our knowledge, there are seven meta-syntheses of qualitative AN literature with differing foci, including recovery [21–23], phenomenology of AN [24, 25], and treatment experiences [26, 27] and three additional, encompassing all eating disorders, including AN [15, 28, 29].”

“The voices of the experiencing person across these studies contribute to evidence of a complex and insidious condition, which so far largely eludes treatment efforts [18].”

“Shame has been subject of a recent ED meta-analysis [88] and systematic review [89], suggesting that early changes in shame were associated with quicker reduction in ED symptoms [90].”

“It has been argued that attempting to target too many factors in AN concurrently is problematic [97] and insufficient attention is paid to the importance of the therapeutic relationship in manualised therapies suggesting the ‘how’ may be even more important than the content for people with SE-AN.”

“Across 24 studies [39–41, 44, 46, 48–51, 53–55, 57–61, 63–67, 70, 73] themes emerged where AN shifted from being an adaptive response to the environment to become a habitual, acontextual way of being in the world.”

“This aligned with prior lived experience research where recovery has been argued to be more than symptom reduction or remission [15].”

“Despite SE-AN being described in the early 1980’s [5], the defining features are incomplete [6, 7], with little consensus about optimal treatments.”

“However, 36 papers is considered a large synthesis and all authors agreed that saturation was reached [107].”

“The validated IDEA (IDentity and EAting disorders) instrument [110], has potential to assess the ‘global impoverishment of self ’, being the psychopathology of embodied disturbances of identity in SE-AN.”

“For the person, the mask is the veneer to hide the apparent darkness and shadows within the self to “keep the demons locked away” (Arkell & Robinson p 653 [39]) and “smile” through the “pain”, concealing the perceived defective, “needy” self, within.”

“Shame has been subject of a recent ED meta-analysis [88] and systematic review [89], suggesting that early changes in shame were associated with quicker reduction in ED symptoms [90].”

“This connection with self and feelings was also fostered during yoga and is consistent with other theoretical literature about building connection with the emotional or felt-sense of self [100, 101] as the precursor to forming an identity beyond AN and towards recovery [84].”

“Shame has been subject of a recent ED meta-analysis [88] and systematic review [89], suggesting that early changes in shame were associated with quicker reduction in ED symptoms [90].”

“For example remarking that the AN becomes “easy”, “natural” and “a script that you just can’t shake free of” Musolino et al. pp 5–6 [61].”

“[64]) and their foundational needs, emblematic in their eating (“it’s hard to look after myself”).”

“Despite SE-AN being described in the early 1980’s [5], the defining features are incomplete [6, 7], with little consensus about optimal treatments.”

“Rationale to reconceptu-alise AN psychopathology, beyond predominant medi-calized parameters and body image disturbance have emerged [83–86].”

“Within treatment and phenomenology papers, we searched for processes of change, identifying a further 15 papers [42–44, 49, 51–53, 56, 63–69, 71, 72, 74] that contributed phenomenological insights.”

“Across 24 studies [39–41, 44, 46, 48–51, 53–55, 57–61, 63–67, 70, 73] themes emerged where AN shifted from being an adaptive response to the environment to become a habitual, acontextual way of being in the world.”

“There is a paucity of research on AN intervention with a broader focus and scope to be flexibly tailored to the individual’s unique needs and preferences [16, 17].”

“Across 24 studies [39–41, 44, 46, 48–51, 53–55, 57–61, 63–67, 70, 73] themes emerged where AN shifted from being an adaptive response to the environment to become a habitual, acontextual way of being in the world.”

“Essential for SE-AN, that the full context of the experiencing person is considered, and care is shifted to align with what is possible and accessible to them, rather than pre-determined expectations that risk exacerbating hopelessness and causing harm [103].”

“That is, working alongside people to define their individual place of recovery [104], suspending expectation of what we consider an acceptable life [105] and supporting them to find their own personal agency and unique recipe towards wellness.”

“To our knowledge, there are seven meta-syntheses of qualitative AN literature with differing foci, including recovery [21–23], phenomenology of AN [24, 25], and treatment experiences [26, 27] and three additional, encompassing all eating disorders, including AN [15, 28, 29].”

“…that one third of all papers ( n = 14) adopted labelling indicative of an enduring eating disorder with most papers ( n = 9) using the term “severe and enduring anorexia nervosa” [39, 45, 50–52, 64, 66, 67, 73] and the remaining papers referring to “chronic” [40, 49, 65] or “longstanding” [41, 42].”

“This analytic framework has been used for other meta-syntheses of eating disorders research [21, 24, 28].”

“(Ross and Green p115 [65]) ...when you’re well or when it’s gone, you’ll just be you, you won’t be anorexic, you’ll be you (Williams et al. p 222 [70]) Kintsugi, is seen as a symbolic honouring of being broken (“fragmented”) as part of life’s path and finding growth and meaning.”

“This analytic framework has been used for other meta-syntheses of eating disorders research [21, 24, 28].”

“This paper has found that the therapeutic role of treatment for SE-AN is mixed at best, but that with the right ingredients, as defined by the experiencing person, relinquishing life dominated by AN is possible, building a picture of hope for all [111].”

“To our knowledge, there are seven meta-syntheses of qualitative AN literature with differing foci, including recovery [21–23], phenomenology of AN [24, 25], and treatment experiences [26, 27] and three additional, encompassing all eating disorders, including AN [15, 28, 29].”

“Within treatment and phenomenology papers, we searched for processes of change, identifying a further 15 papers [42–44, 49, 51–53, 56, 63–69, 71, 72, 74] that contributed phenomenological insights.”

“It assists the person to respond effectively to life [79, 80] to achieve homeostasis or harmony in their being.”

“The stance experienced by participants of reductionistic treatment is inconsistent with conceptualisations of AN recovery articulated elsewhere [23].”

“These factors may require additional consideration in treatment transferability to SE-AN [98] p 188.”

“…that one third of all papers ( n = 14) adopted labelling indicative of an enduring eating disorder with most papers ( n = 9) using the term “severe and enduring anorexia nervosa” [39, 45, 50–52, 64, 66, 67, 73] and the remaining papers referring to “chronic” [40, 49, 65] or “longstanding” [41, 42].”

“There were 13 papers with a treatment experience focus, half of which [45, 51, 68, 69, 72, 74] Relatively fewer papers cited participant experiences of temporal processes of change and recovery, whereby only four of the 36 (8.6%), had the specific focus of recovery [46, 58, 61, 63].”

“There were 13 papers with a treatment experience focus, half of which [45, 51, 68, 69, 72, 74] Relatively fewer papers cited participant experiences of temporal processes of change and recovery, whereby only four of the 36 (8.6%), had the specific focus of recovery [46, 58, 61, 63].”

“This analytic framework has been used for other meta-syntheses of eating disorders research [21, 24, 28].”

“There were 13 papers with a treatment experience focus, half of which [45, 51, 68, 69, 72, 74] Relatively fewer papers cited participant experiences of temporal processes of change and recovery, whereby only four of the 36 (8.6%), had the specific focus of recovery [46, 58, 61, 63].”

“1 – Covidence PRISMA Flow chart of search strategy) [30] with reference to steps for identifying and synthesising qualitative literature outlined by Shaw [31].”

“Across 24 studies [39–41, 44, 46, 48–51, 53–55, 57–61, 63–67, 70, 73] themes emerged where AN shifted from being an adaptive response to the environment to become a habitual, acontextual way of being in the world.”

“We have termed this process functional adaptation from a synthesis of ecological psychology [76] and existential perspective [77] that is designed for ‘survival’ of the ‘human organism’ [78].”

“p 8 [54]), led to guilt, related to dishonesty, and withdrawal; “I’ve got no one to be with, nothing special to do and it’s just horrible” (Robinson et al.”

“…that one third of all papers ( n = 14) adopted labelling indicative of an enduring eating disorder with most papers ( n = 9) using the term “severe and enduring anorexia nervosa” [39, 45, 50–52, 64, 66, 67, 73] and the remaining papers referring to “chronic” [40, 49, 65] or “longstanding” [41, 42].”

“…express and communicate emotion; “There’s a mash of emotions squashed in together…I found myself looking for a way to dull […] numb […] quash all of those emo-tions—to avoid feeling, to get to a place of not feeling… this was my way of showing that I was hurting” (Foye et al. pp. 331–332 [50]).”

“At worst, treatment was cited as a source of harm (e.g., Broomfield et al. 2021).”

“To be truly accepting, in the hope that a person has the best chance to embrace and accept their authentic self by being seen in therapeutic relationships [92].”

“Putting the pieces together in my own way (Joyce et al p 2077 [52] ) Everything is still fragmented; things are still in boxes but its slowly coming together so I feel more Helen that I did a few months ago… I know who Helen is but where does the anorexia and the negativity fit?”

“Where people felt a sense of agency in their treatment, through for example, a self-admission program this led to empowerment [99] p 1691.”

“Specialist supportive clinical management (SSCM), may offer a first step to defining such a treat-ment for SE-AN within proposed understandings of its efficacy [94], with the potential to encompass attributes described by participants in Table 4.”

“Thus, opening the self to others , affirms that finding a healthy relationship with ‘self’ and healthy dependence on others are crucial aspects of the human condition, of being sustained, which go amiss for people with AN [93].”

“…support programs [72], self-admission [74], community support [51] as well as radically different treatment approaches such as experimental rTMS [45], music and yoga therapy (encompassing spiritualism and self-compassion) built upon a person’s connection with themselves, others and fostered…”

“…that one third of all papers ( n = 14) adopted labelling indicative of an enduring eating disorder with most papers ( n = 9) using the term “severe and enduring anorexia nervosa” [39, 45, 50–52, 64, 66, 67, 73] and the remaining papers referring to “chronic” [40, 49, 65] or “longstanding” [41, 42].”

“This connection with self and feelings was also fostered during yoga and is consistent with other theoretical literature about building connection with the emotional or felt-sense of self [100, 101] as the precursor to forming an identity beyond AN and towards recovery [84].”

“When considering the global impoverishment people experience to SE-AN, and the significant functional impairment described, the role of social work and occupational therapy support for people with SE-AN requires further exploration [102].”

“That is, working alongside people to define their individual place of recovery [104], suspending expectation of what we consider an acceptable life [105] and supporting them to find their own personal agency and unique recipe towards wellness.”

“Rationale to reconceptu-alise AN psychopathology, beyond predominant medi-calized parameters and body image disturbance have emerged [83–86].”

“Within treatment and phenomenology papers, we searched for processes of change, identifying a further 15 papers [42–44, 49, 51–53, 56, 63–69, 71, 72, 74] that contributed phenomenological insights.”

“There were 13 papers with a treatment experience focus, half of which [45, 51, 68, 69, 72, 74] Relatively fewer papers cited participant experiences of temporal processes of change and recovery, whereby only four of the 36 (8.6%), had the specific focus of recovery [46, 58, 61, 63].”

“The Specialist Psychotherapy with Emotion Kent and Sussex (SPEAKS) feasibility trial [109] has a theoretical basis of strengthening the emotional self through integrative emotion focused therapy and dialogically based, schema ‘self-parts” therapy.”

“This connection with self and feelings was also fostered during yoga and is consistent with other theoretical literature about building connection with the emotional or felt-sense of self [100, 101] as the precursor to forming an identity beyond AN and towards recovery [84].”

“Within treatment and phenomenology papers, we searched for processes of change, identifying a further 15 papers [42–44, 49, 51–53, 56, 63–69, 71, 72, 74] that contributed phenomenological insights.”

“It is a group identifiable as “SE-AN – we know it when we see it” ( [75] p 1315.) or in this case, hear it, from participants, in their own words.”

“The latter is especially important in the current context where there is a narrow selection of evidence-based treatments for AN, which may themselves be iatrogenic [20].”

“There were 13 papers with a treatment experience focus, half of which [45, 51, 68, 69, 72, 74] Relatively fewer papers cited participant experiences of temporal processes of change and recovery, whereby only four of the 36 (8.6%), had the specific focus of recovery [46, 58, 61, 63].”

“Shame is a silencing, controlling and stifling emotion, with its roots in formative development [87], such as interpersonal trauma and is exemplified by participants making sense of the origins of their pervasive unwor-thiness.”

“…literature review (using library database) to support the development of a research question using the Context How Issues Population (CHIP) tool [32]; (b) a search strategy identifying key bibliographic databases and review of their thesaurus terms then developing a key word search; (c)…”

“This reflects the higher number of papers related to phenomenology n = 25, which extended to the phenomena of being in a relationship [40] or an expect-ant mother [43].”

“In a qualitative meta-synthesis of “severe and enduring” AN, functional impairment was reported as a “global impoverishment of self” in interpersonal relationships, physical health, mental health and socio-economic functioning 217 .”

“These functions of the ED and the enmeshment with the self may lead to fear and uncertainty about life without this vital part of life and sense of identity [157].”

“As highlighted by this paper and the bio-psycho-social model, current ED care systems do not adequately cater to the reality of complexity that occurs for many with EDs [14, 19, 71, 168, 169, 264–268].”

“Recovery from an ED is variable, with approximately 20% of individuals who experience anorexia nervosa (AN) and 10% of people with bulimia nervosa (BN) developing long-standing illness [3–5].”

“…are in line with recent studies in the field, which characterizes individuals with SE-AN as impoverished in terms of intimacy and relationships [3, 22], and exhibiting a propensity for economic frugality, some living below the poverty line, without well-remunerated employment behind them [22,…”

“…these challenges, SEED classification remains embedded within clinical decision-making and service frameworks, perpetuating exclusion, stigmatisation, and a persistent disconnect between standardised models of care and the realities of lived experience [11, 18, 19, 21, 23, 26, 40, 41].”

“Extending upon these insights include the understanding that shame processes, existential crisis and difficulties ‘being’ in the body, manifest in self and identity disturbance as represented through AN [17].”

“This approach highlights how behaviors associated with AN, such as food restriction, may serve as strategies to numb distress or create a sense of control in the face of trauma [24, 42].”

“Other qualitative research has identified how AN treatment was inadvertently traumatic for some people with a lived AN experience [28,63–66] and there is a need for more research to ensure that treatments do no harm.”

“There is compelling evidence 40,91,92,99 to suggest that self and identity disturbances are both predisposing and perpetuating factors in anorexia nervosa.”

“This aligns with Kiely and colleagues [4 p. 19] who showed that maximising autonomy and a person-centred treatment approach allows people living with EDs to engage in recovery “on their own terms” [4].”

“A recent meta-analysis posed alternative conceptualisations of the issue, considering treatment options and complex intra-and interpsychic processes of SEED-AN [13].”

“Similarly, prior reviews have found autonomy to be challenged in treatment for severe EDs and advocate for autonomy-supportive approaches that support patients in developing hope and autonomous motivation [61, 62].”

“…gives them a sense of control and makes them feel special and protected, but they also describe the dark sides of the illness as a feeling of being controlled, constantly thinking about food, and how the illness has damaged their personal relation‑ ships (Kiely et al., 2023; serpell et al., 1999).”

“The headline, descriptor, exemplar method [62] was used, where the theme name, detailed description of the theme in the original authors words (second order constructs), and one verbatim “exemplar” of the theme from the perspective of the experiencing person (first order construct) was extracted.”

“Given that greater illness entrenchment is associated with increased difficulty imagining an AN-free identity, addressing this factor may be particularly relevant for individuals with long-term AN [58].”