case study on anorexia

• Case report
• Open access
• Published: 05 June 2020

Case report: cognitive performance in an extreme case of anorexia nervosa with a body mass index of 7.7

• Simone Daugaard Hemmingsen   ORCID: orcid.org/0000-0001-6789-7105 1 , 2 , 3 , 4 , 5 ,
• Mia Beck Lichtenstein   ORCID: orcid.org/0000-0002-7885-9187 6 , 7 ,
• Alia Arif Hussain   ORCID: orcid.org/0000-0002-1011-5165 8 , 9 ,
• Jan Magnus Sjögren   ORCID: orcid.org/0000-0003-2060-1914 8 , 9 &
• René Klinkby Støving   ORCID: orcid.org/0000-0002-4255-5544 1 , 2 , 3 , 4 , 5  

BMC Psychiatry volume  20 , Article number:  284 ( 2020 ) Cite this article

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Studies show that adult patients with anorexia nervosa display cognitive impairments. These impairments may be caused by illness-related circumstances such as low weight. However, the question is whether there is a cognitive adaptation to enduring undernutrition in anorexia nervosa. To our knowledge, cognitive performance has not been assessed previously in a patient with anorexia nervosa with a body mass index as low as 7.7 kg/m2.

Case presentation

We present the cognitive profile of a 35-year-old woman with severe and enduring anorexia nervosa who was diagnosed at the age of 10 years. She was assessed with a broad neuropsychological test battery three times during a year. Her body mass index was 8.4, 9.3, and 7.7 kg/m 2 , respectively. Her general memory performance was above the normal range and she performed well on verbal and design fluency tasks. Her working memory and processing speed were within the normal range. However, her results on cognitive flexibility tasks (set-shifting) were below the normal range.

Conclusions

The case study suggests that it is possible to perform normally cognitively despite extreme and chronic malnutrition though set-shifting ability may be affected. This opens for discussion whether patients with anorexia nervosa can maintain neuropsychological performance in spite of extreme underweight and starvation.

Trial registration

ClinicalTrials.gov, NCT02502617 . Registered 20 July 2015.

Peer Review reports

A growing amount of evidence indicate that anorexia nervosa (AN) is associated with impaired or inefficient neuropsychological performance in relation to healthy control subjects, regarding attention [ 1 , 2 ], memory [ 1 , 2 , 3 , 4 ], processing speed [ 4 ], and especially the executive functions [ 5 ] central coherence [ 6 ], decision-making [ 6 , 7 ], and cognitive flexibility [ 8 , 9 ]. It has been debated whether this is related to state (due to factors such as malnutrition) or trait (a premorbid trait or endophenotype of the disorder [ 10 ]). Some studies have found that patients who recovered from AN have impaired cognitive performance compared to healthy control subjects [ 11 , 12 ], supporting the trait theory of the disorder. However, longitudinal studies have found that executive functions can be normalized following weight stabilization in patients with AN [ 13 , 14 ], supporting the state theory.

Research on cognitive performance before and after re-nutrition in adult patients with extreme and chronic AN is sparse. Some studies have examined cognitive performance in patients with AN with a mean body mass index (BMI) below 15 kg/m2 (e.g. [ 10 ]), corresponding to extreme AN severity according to the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5) [ 15 ]. However, it is unclear if patients with AN with BMI below 10 kg/m2 will display the same cognitive profile.

It has been suggested that malnutrition might affect cognitive performance since the classic Minnesota Semi-Starvation Experiment [ 16 ], where cognitive functions were studied in 36 healthy military objectors with normal weight before and after semistarvation with 25% weight-loss over a 24-week period. The men reported decline in concentration. However, the standardized tests that were administered did not confirm measurable alterations. Newer research on healthy subjects, although somewhat inconclusive, indicates affected psychomotor speed and executive functions following short-term semi-starvation [ 17 ].

However, other factors than malnutrition or weight-loss have been suggested to affect cognitive performance in patients with AN, such as long illness duration [ 18 ] and age [ 18 ]. This could explain a difference in results for children/adolescents and adults with AN mentioned in the literature [ 19 , 20 ], which cannot be explained by the trait theory.

The current case report was part of an ongoing longitudinal research project investigating the effect of re-nutrition on cognitive performance in patients with severe AN. The aim of the case study was to present the neuropsychological performance of a patient with chronic AN and extremely low BMI in order to discuss whether extremely low weight and long duration of illness are associated with cognitive impairment and if cognitive adaptation takes place. No study to our knowledge has previously reported on the cognitive profile of a patient with AN with a BMI as low as 7.7 kg/m2.

We want to introduce the idea of cognitive adaptation to severe malnutrition as a supplement to the discussion on cognitive impairment in AN. However, this idea should not be confused with Taylor’s Theory of Cognitive Adaptation [ 21 ]. The presented idea of cognitive adaptation is the idea that cognitive functions can adapt to persisting low weight in AN, i.e. cognitive performance can remain normal or regain normality in severe and enduring AN. The adaptation does not exclude specific cognitive impairment.

The current case report investigates the cognitive profile of a 35-year-old Caucasian woman with extremely severe and enduring AN who was diagnosed at the age of 10 years. The patient’s weight loss is accomplished through fasting. According to the DSM-5 [ 15 ], the patient’s symptoms are in accordance with the restricting type and the severity of AN for the patient is categorized as extreme. The patient has had low body weight since the onset of the disease 25 years ago. Consequently, she is still prepubescent.

The patient’s extreme malnutrition, the medical complications, and the refeeding treatment has previously been described in a case report [ 22 ]. Since the previous report [ 22 ], she has survived another 5 years, living in her own residence with several stabilizing hospitalizations. Her nadir BMI, defined as the lowest registered BMI, has decreased further to 7.2 kg/m2. To our knowledge, this is the lowest BMI reported in AN in the literature. During her long and severe illness course, she has participated in psychotherapy for years. However, during the past few years, she has refused to participate in psychotherapy, while she has continued the harm-reducing treatment in the nutrition department. No cognitive profile has been assessed before the current report.

She has continuously been provided supplementation with vitamins and minerals. At the present admission, she weighed 20.2 kg, including edema corresponding to at least 2 kg, and her height was 1.55 m, corresponding to a BMI of 8.41 kg/m 2 . After life-saving and stabilizing fluid and electrolyte correction, and refeeding according to guidelines [ 23 ] during 2 weeks of hospitalization, we tested her with a neuropsychological test battery (2 weeks after admission: T 0 ). After an additional 2 months of hospitalization, she could not be motivated to continue the treatment any longer. Due to years of history with rapid relapse after prolonged forced treatment, she was allowed to be discharged to outpatient follow-up. She was re-tested in the outpatient clinic 6 days following dropout from inpatient treatment and approximately 3 months after admission, (re-test: T 1 ) with a weight of 22.4 kg (BMI: 9.3 kg/m 2 ), and again at 12 months from T 0 , during a re-hospitalization, 7 days after admission (follow-up: T 2 ), with BMI 7.7 kg/m 2 . Thus, T 0 and T 2 were done at the hospital after initial stabilizing glycemic, fluid- and electrolyte correction, whereas T 1 was done in an outpatient setting, where she was in a clinically stable condition, but without the initial stabilizing treatment.

The psychopathological profile of the patient

The patient scored 21 on the Beck Depression Inventory II (BDI-II [ 24 ];) indicating moderate depression at 2 weeks after admission (T 0 ). Her scores on the Eating Disorder Inventory 3 (EDI-3 [ 25 ];) at T 0 are presented in Table 1 below. Compared to the Danish validation of EDI-3 for patients with AN ( [ 26 ]; Table 1 ), her low scores on the Drive for Thinness, the Interoceptive Deficits, the Perfectionism, and the Asceticism subscales are of interest.

Qualitative observations

During the first 2 weeks after admission, the patient was unable to participate in the neuropsychological assessment due to fatigue. Two weeks after admission, when the baseline assessment took place (T 0 ), the patient was lying down during the assessment and was noticeably tired. This was neither the case at retest (T 1 ) nor at follow-up (T 2 ) where the patient was sitting at a table. Her alertness and energy level at follow-up (T 2 ) were notable in light of her low BMI. The patient was calm during all three assessments (divided into six sessions) and expressed that the tests were fun. The aim of the study was explained to the patient before the first administration. However, only information written in the test manuals was given during each assessment.

The following validated neuropsychological tests were selected in cooperation with an experienced neuropsychologist to examine a wide range of cognitive functions: the Wechsler Memory Scale III (WMS-III) [ 27 ]; the d2-R Test of Attention – Revised [ 28 , 29 ]; the Processing Speed Index (PSI) of the Wechsler Adult Intelligence Scale IV (WAIS-IV) [ 30 ]; the Delis-Kaplan Executive Function System (D-KEFS) [ 31 ], Verbal Fluency Test, Design Fluency Test and Trail Making Test; and the Wisconsin Card Sorting Test Revised and Expanded (WCST) [ 32 ] (only administered at T 0 ). Information on each test variable, including internal consistency and test-retest reliability, are presented in Table  2 . The test battery can be administered in approximately 2 h. For all three administrations, the test battery was divided into two sessions (1 h per session) 1 day apart.

Neuropsychological findings

Table  3 gives an overview of the timeline of the patient’s raw scores and scaled scores on the test battery. Table  4 presents the patient’s norm scores and percentiles on the WMS-III, the WAIS-IV PSI, and the d2-R. Table  5 presents the patient’s WCST scores at 2 weeks after admission (T 0 ). Information on scoring are presented below each of the tables.

Memory performance on WMS-III

The patient’s scores on WMS-III indicate average to very superior auditory, visual, immediate and general memory performance (108 to 142; Mean: 100), and low average to average working memory (Table 4 ). The technical manual for WMS-III reports adequate test – retest reliability for all indexes in the age group 16–54 years, except for the Auditory Recognition Delayed Index ( [ 33 ]; Table 2 ). Estimated standard error of difference (S Diff ) scores were calculated based on Iverson and Grant ( [ 34 ]; Table 2 ). Differences between the three assessments are outlined here. Her scores on the Auditory Delayed Index decreased more than S diff : 6.70 from 132 (very superior) at 2 weeks after admission (T 0 ) to 108 (average) at re-test (T 1 ) and increased again to 132 (very superior) at follow-up (T 2 ). Her scores on the Visual Immediate Index increased slightly more than S diff : 6.70 from 118 (high average) at re-test (T 1 ) to 127 (superior) at follow-up (T 2 ). Her scores on the Visual Delayed Index decreased more than S diff : 7.65 from 125 (superior) at re-test (T 1 ) to 109 (average) at follow-up (T 2 ). Her scores on the Immediate Memory Index increased more than S diff : 3.17 from 134 (very superior) at re-test (T 1 ) to 142 (very superior) at follow-up (T 2 ). Her scores on the Working Memory Index decreased more than S diff : 8.22 from 102 (average) at 2 weeks after admission (T 0 ) to 88 (low average) at re-test (T 1 ). The scores on the rest of the indexes did not change more than the estimated S diff scores between time points.

Cognitive flexibility on D-KEFS and WCST

Overall, she performed above average on the Verbal Fluency Test (Table 3 ) at all three test times compared to the normative population for age, except for her performance at re-test (T 1 ) on the switching condition, which was decreased more than S diff : 2.42 to average, and the high number of repetition errors (7; below average) at re-test (T 1 ) and (3; average) at follow-up (T 2 ).

She performed average to above average on the Design Fluency Test at all three test sessions (Table 3 ). However, the switching condition score was lower [ 6 ] at follow-up (T 2 ) compared to 8 at 2 weeks after admission (T 0 ) and re-test (T 1 ), though still average.

During follow-up (T 2 ) on the Trail Making Test (Table 3 ), her performance on the Number-Letter Sequencing test, measuring cognitive flexibility, was below average (111 s), in spite of being average at 2 weeks after admission (T 0 ; 90 s) and re-test (T 1 ; 79 s). The numbers condition was very low at T 0 (55 s; below average), improving somewhat at re-test (T 1 ; 46 s; below average) and follow-up (T 3 ; 41 s; below average). We have no explanation for this result. On the other conditions, her performance was average at all three test times on the Trail Making Test.

Her scores on the WCST (Table 5 ) 2 weeks after admission (T 0 ) place her in the mild to moderately-to-severely range of impairment on cognitive flexibility according to this task. She completed one out of six categories (< 1st percentile). She made 52 perseverative responses (< 1st percentile; standard score 55; moderately-to-severely impaired range). She committed 50 errors (8th percentile; standard score 79: mildly impaired range), of which 36 were perseverative errors (1st percentile; standard score 55: moderately impaired range).

WAIS-IV processing speed

The scores on the Processing Speed Index (Table 4 ) were average compared to the normative population for age at all three test times. There were no relevant differences between time points. She scored 93 at admission (T 0 ) and re-test (T 1 ) and 98 at follow-up (T 2 ).

d2-R test of attention

At 2 weeks after admission (T 0 ) and re-test (T 1 ), she had a small number of processed targets (426 and 420), 18th to 21st percentile (Tables 3 and 4 ), her concentration performance was 175 and 176 corresponding to the 42nd percentile and she committed three and no errors respectively (> 90th percentile). At follow-up (T 2 ), her concentration performance was above the mean (185; 54th percentile) but not increased more than S diff : 24.89. The total processed targets score was still low (451; 34th percentile), and she committed few errors (four; 90th percentile).

Discussion and conclusions

The patient exhibited average to very superior performance on verbal fluency, design fluency, processing speed, and memory. However, her working memory performance was low average. Her attention and concentration performance were below average to average, and her performance on cognitive flexibility tasks were average to moderately-to-severely impaired.

The present case report demonstrates surprisingly good cognitive performance in a patient with severe and enduring AN with extremely low BMI varying between 7.7 and 9.3 during the study period of 1 year. However, some of her executive functions seem to be impaired. This is in line with previous research on patients with AN [ 5 , 8 ]. The present results suggest that her working memory was normal (low average) in line with previous studies [ 35 , 36 ]. However, her working memory performance was lower compared to the rest of her memory performance, which was average to very superior. The results from the D-KEFS indicate average to above-average performance with perhaps somewhat weaker cognitive flexibility (below average to average). On the other hand, the results from the WCST indicate impairment in cognitive flexibility. The overall differences in performance between the three assessments were minimal. This indicates that the minor differences in BMI between the test assessments did not significantly affect her cognitive performance, as expected.

Impaired cognitive flexibility

It could be that impaired cognitive flexibility existed prior to the illness as a premorbid trait as suggested previously [ 10 ], or that the malnutrition has affected the patient’s cognitive flexibility. Since we are missing data on her premorbid level, we cannot draw any firm conclusions.

Impaired cognitive flexibility has previously been reported in patients with AN with higher BMI [ 37 ], indicating that impairments in cognitive flexibility do not necessarily relate to undernutrition. In patients with AN who had recovered from the illness, cognitive flexibility was in the normal range in this study. However, other studies found that individuals who recovered from AN exhibited more or less impaired executive functioning [ 10 ]. Longitudinal research on the relationship between different BMI states and cognitive performance is highly needed.

Impaired cognitive flexibility may also play a role in the perpetuation of AN. Impaired cognitive flexibility has been suggested as a maintenance factor [ 38 ] and a factor related to lack of illness insight characteristic of patients with restrictive AN [ 39 ]. Lack of illness insight could be related to treatment resistance [ 40 ]. The patient’s low scores on EDI-3 subscales also reflect a discrepancy between illness severity and self-reported symptoms. This discrepancy or ambivalence is part of the nature of the disorder reflected in the low motivation for recovery and high number of dropouts from treatment alongside an expressed desire to change [ 41 ].

Cognitive adaptation in anorexia nervosa

Survival of long-term starvation is only possible due to extensive adaptive endocrine and metabolic alterations [ 42 ]. How these alterations affect cognitive functions still remains to be clarified. Well-designed longitudinal studies on severely underweight patients with a long illness duration are lacking. However, the present case report suggests that essential preservation of some cognitive functions occurs even in extreme chronic semi-starvation.

The mechanisms allowing for such preservation remains a subject of speculation. Links can be made to research on neuroplasticity and functional reorganization of cognitive functions after brain injury since patients with AN have white matter alterations [ 43 ]. Research shows that brain maturation processes of especially the prefrontal cortex continue until people are approximately 25 years old [ 44 ]. Nutritional status seems to impact this brain maturation [ 44 ]. Executive functions associated with the prefrontal cortex could therefore be affected by undernutrition during development of prefrontal connections in the brain in adolescence and young adulthood. Thus, impairment on executive functions may not arise until adulthood in patients with AN. This is in line with research that found no cognitive flexibility impairment in children and adolescents with AN but impairments in adults with AN [ 19 , 20 ]. The literature indicates that other cognitive functions associated with the prefrontal cortex, such as memory, are also impaired in adults with AN [ 3 ]. However, overall, this literature is not as explicit as the literature showing cognitive flexibility impairment in adults with AN. The ambiguity in the literature indicates differences between cognitive functions related to the prefrontal cortex in patients with AN. It might be that some prefrontal connections potentially being affected during low weight in adolescence could be reorganized or “compensated for” with time as is possible with reorganization or apparent functional recovery after brain injury [ 45 ]. In that case, cognitive performance could be regained after impairment has occurred. Some dimensions of cognitive flexibility might, however, be more difficult to compensate for. This could explain specific cognitive flexibility impairment in patients recovered from AN [ 10 ] and explain that the patient in the present case report performed normal and superior on some functions associated with prefrontal connections (memory and verbal fluency) but poorer on cognitive flexibility. We therefore suggest that reorganization of some cognitive functions can occur in spite of persisting low weight in patients with AN. In line with the possibility of cognitive reorganization in AN, Cognitive Remediation Therapy seems to improve executive functioning in patients with AN [ 46 ]. The suggested theory of cognitive adaptation may therefore not be specific to persisting low weight in AN. However, fast, substantial weight-loss could affect cognitive performance differently than persisting low weight. Therefore, studies on starving healthy subjects, including the Minnesota Semi-Starvation Experiment [ 16 ], could show different results than studies on patients with severe and enduring AN. Likewise, studies on patients with short illness duration might find different results than studies of patients with enduring AN. It is also unclear if patients developing AN in adulthood will display the same cognitive impairments. In line with these reflections, a case report of a 27-year-old Japanese woman in a coma, with BMI of 8.5 kg/m 2 at admission, describes a patient with AN where the outcome of severe malnutrition was persistent neurologic sequelae [ 47 ]. The woman developed AN at the age of 21 years where the patient in the present case report was diagnosed at the age of 10 years. The difference in age of onset, duration of illness, and/or manner of weight-loss (fast, substantial weight-loss compared to persisting low weight) may have resulted in different outcomes for the women. It is, however, also a possibility that the patient in the present case report might have an extreme phenotype which enables her to perform well in spite of her being extremely underweight.

We cannot say how high the patient’s scores on the neuropsychological test battery might be if she had not been as malnourished. We assume the patient would perform better on cognitive flexibility tasks, that her processing speed and working memory would be higher, and that she would be able to concentrate better had she not been malnourished. This is somewhat supported by previous research. Although the literature suggests impaired cognitive performance in patients with AN, the reported impairments were limited compared to healthy subjects [ 8 , 48 ]. Furthermore, it may be that severely underweight patients with AN have a higher verbal IQ [ 49 ], which does not, however, exclude the possibility of specific cognitive impairments [ 50 ]. This could explain the patient’s high memory performance (and probably global IQ) alongside specific impairment in cognitive flexibility on the WCST. This case may therefore not differ from other patients with severe AN regarding cognitive performance. It may be that the superior performance related to some cognitive functions is a trait of severely underweight patients with AN and/or that a cognitive adaptation to enduring AN increases performance to the premorbid level. In this case, (regained) superior performance of some cognitive functions (i.e. memory and verbal IQ) can exist alongside cognitive impairment in others (i.e. cognitive flexibility). This may change our view of the cognitive profile and its development in patients with severe and enduring AN.

Regardless, the fact that we were able to test the patient in the present case, raises a discussion as to whether she and others with extremely low weight may be responsive to psychotherapy as well. In the present case, the patient underwent psychotherapy for several years albeit without any impact on her weight. More research focusing on the validation of neuropsychological tests including investigation of the practice effect in this patient population is needed.

The individual scores on neuropsychological tests should always be interpreted with care. Factors other than persisting low weight may affect neuropsychological performance (e.g. dehydration, stress, depression, and anxiety). In the present case, the patient did express depressive symptoms corresponding to moderate depression, which might have influenced results on impairment in cognitive flexibility. Furthermore, the patient might experience other issues related to cognitive performance in daily life, which cannot be discovered in a neuropsychological assessment context.

Obviously, conclusions can never be drawn from one case. However, since the neuropsychological testing included a broad range of tests and was repeated three times during a year, the present case report is valid as a basis for reflecting on the affected individual’s cognitive performance at this stage. The present case report demonstrates that cognitive functions may be largely preserved under extreme chronic malnutrition or that cognitive functioning may be regained (reorganized) in spite of extreme chronic malnutrition. More research on patients with AN with extremely low BMI (< 10) is needed to determine whether cognitive performance is affected by starvation and malnutrition.

Availability of data and materials

All data analyzed during this study are included in this published article in tables or text. Raw data in a fully anonymized version is available from the corresponding author on reasonable request.

Abbreviations

• Anorexia nervosa

Intelligence quotient

Body mass index

The Beck Depression Inventory II

The Eating Disorder Inventory 3

The Wechsler Memory Scale III

The Wechsler Adult Intelligence Scale IV

The Processing Speed Index

The Delis-Kaplan Executive Function System

The Wisconsin Card Sorting Test Revised and Expanded

Seed JA, Dixon RA, McCluskey SE, Young AH. Basal activity of the hypothalamic-pituitary-adrenal axis and cognitive function in anorexia nervosa. Eur Arch Psychiatry Clin Neurosci. 2000;250(1):11–5.

Article   CAS   PubMed   Google Scholar  

Seed JA, McCue PM, Wesnes KA, Dahabra S, Young AH. Basal activity of the HPA axis and cognitive function in anorexia nervosa. Int J Neuropsychopharmacol. 2002;5(1):17–25.

Biezonski D, Cha J, Steinglass J, Posner J. Evidence for Thalamocortical circuit abnormalities and associated cognitive dysfunctions in underweight individuals with anorexia nervosa. Neuropsychopharmacology. 2016;41(6):1560–8.

Article   PubMed   Google Scholar  

Kjaersdam Telleus G, Jepsen JR, Bentz M, Christiansen E, Jensen SO, Fagerlund B, et al. Cognitive profile of children and adolescents with anorexia nervosa. Eur Eat Disord Rev. 2015;23(1):34–42.

Roberts ME, Tchanturia K, Stahl D, Southgate L, Treasure J. A systematic review and meta-analysis of set-shifting ability in eating disorders. Psychol Med. 2007;37(8):1075–84.

Abbate-Daga G, Buzzichelli S, Marzola E, Aloi M, Amianto F, Fassino S. Does depression matter in neuropsychological performances in anorexia nervosa? A descriptive review. Int J Eat Disord. 2015;48(6):736–45.

Bodell LP, Keel PK, Brumm MC, Akubuiro A, Caballero J, Tranel D, et al. Longitudinal examination of decision-making performance in anorexia nervosa: before and after weight restoration. J Psychiatr Res. 2014;56:150–7.

Article   PubMed   PubMed Central   Google Scholar  

Hirst RB, Beard CL, Colby KA, Quittner Z, Mills BM, Lavender JM. Anorexia nervosa and bulimia nervosa: a meta-analysis of executive functioning. Neurosci Biobehav Rev. 2017;83:678–90.

Tchanturia K, Davies H, Roberts M, Harrison A, Nakazato M, Schmidt U, et al. Poor cognitive flexibility in eating disorders: examining the evidence using the Wisconsin card sorting task. PLoS One. 2012;7(1):e28331.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Tchanturia K, Morris RG, Anderluh MB, Collier DA, Nikolaou V, Treasure J. Set shifting in anorexia nervosa: an examination before and after weight gain, in full recovery and relationship to childhood and adult OCPD traits. J Psychiatr Res. 2004;38(5):545–52.

Danner UN, Sanders N, Smeets PA, van Meer F, Adan RA, Hoek HW, et al. Neuropsychological weaknesses in anorexia nervosa: set-shifting, central coherence, and decision making in currently ill and recovered women. Int J Eat Disord. 2012;45(5):685–94.

Wu M, Brockmeyer T, Hartmann M, Skunde M, Herzog W, Friederich H-C. Reward-related decision making in eating and weight disorders: a systematic review and meta-analysis of the evidence from neuropsychological studies. Neurosci Biobehav Rev. 2016;61:177–96.

Lozano-Serra E, Andres-Perpina S, Lazaro-Garcia L, Castro-Fornieles J. Adolescent anorexia nervosa: cognitive performance after weight recovery. J Psychosom Res. 2014;76(1):6–11.

Firk C, Mainz V, Schulte-Ruether M, Fink G, Herpertz-Dahlmann B, Konrad K. Implicit sequence learning in juvenile anorexia nervosa: neural mechanisms and the impact of starvation. J Child Psychol Psychiatry. 2015;56(11):1168–76.

American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Washington: Author; 2013.

Book   Google Scholar  

Keys A, Brozek J, Henschel A, Mickelsen O, Taylor HL. The biology of human starvation (2 volumes). Minnesota: University of Minnesota Press; 1950.

Benau EM, Orloff NC, Janke EA, Serpell L, Timko CA. A systematic review of the effects of experimental fasting on cognition. Appetite. 2014;77:52–61.

Buhren K, Mainz V, Herpertz-Dahlmann B, Schafer K, Kahraman-Lanzerath B, Lente C, et al. Cognitive flexibility in juvenile anorexia nervosa patients before and after weight recovery. J Neural Transm (Vienna). 2012;119(9):1047–57.

Article   Google Scholar  

Telleus GK, Fagerlund B, Jepsen JR, Bentz M, Christiansen E, Valentin JB, et al. Are weight status and cognition associated? An examination of cognitive development in children and adolescents with anorexia nervosa 1 year after first hospitalisation. Eur Eat Disord Rev. 2016;24(5):366–76.

Lang K, Stahl D, Espie J, Treasure J, Tchanturia K. Set shifting in children and adolescents with anorexia nervosa: an exploratory systematic review and meta-analysis. Int J Eat Disord. 2014;47(4):394–9.

Taylor SE. Adjustment to threatening events: a theory of cognitive adaptation. Am Psychol. 1983;38(11):1161–73.

Frolich J, Palm CV, Stoving RK. To the limit of extreme malnutrition. Nutrition. 2016;32(1):146–8.

Robinson P, Jones WR. MARSIPAN: management of really sick patients with anorexia nervosa. BJPsych Advances. 2018;24(1):20–32.

Beck AT, Steer RA, Brown GK. Manual for the Beck depression inventory-II. San Antonio: Psychological Corporation; 1996.

Google Scholar  

Garner DM. Eating disorder Inventory-3. Professional manual. Lutz: Psychological Assessment Resources, Inc.; 2004.

Clausen L, Rosenvinge JH, Friborg O, Rokkedal K. Validating the eating disorder Inventory-3 (EDI-3): a comparison between 561 female eating disorders patients and 878 females from the general population. J Psychopathol Behav Assess. 2011;33(1):101–10.

Wechsler D. WAIS-III WMS-III technical manual. San Antonio: The Psychological Corporation; 2002.

Brickenkamp R, Schmidt-Atzert L, Liepmann D. The d2 test of attention – revised. A test of attention and concentration. Oxford: Hogrefe; 2016.

Brickenkamp R. d2-testen – en vurdering af opmærksomhed of koncentration. Dansk vejledning. Hogrefe Psykologisk Forlag: Frederiksberg; 2006.

Wechsler D. Wechsler adult intelligence scale—fourth edition. Technical and interpretive manual. Pearson: San Antonio; 2008.

Delis DC, Kaplan E, Kramer JH. Delis-Kaplan executive function system - technical manual. Pearson: San Antonio; 2001.

Heaton RK, Chelune GJ, Talley JL, Kay GG, Curtiss G. Wisconsin Card Sorting Test Manual Revised and Expanded. 2nd edition ed. Lutz: Psychological Assessment Resources, Inc.; 1993.

Tulsky D, Zhu J, Ledbetter M, editors. WAIS-III WMS-III technical manual (Wechsler Adult Intelligence Scale & Wechsler Memory Scale) paperback updated. USA: The Psychological Corporation; 2002.

Iverson GL. Interpreting change on the WAIS-III/WMS-III in clinical samples. Arch Clin Neuropsychol. 2001;16(2):183–91.

Bradley SJ, Taylor MJ, Rovet JF, Goldberg E, Hood J, Wachsmuth R, et al. Assessment of brain function in adolescent anorexia nervosa before and after weight gain. J Clin Exp Neuropsychol. 1997;19(1):20–33.

Lauer CJ, Gorzewski B, Gerlinghoff M, Backmund H, Zihl J. Neuropsychological assessments before and after treatment in patients with anorexia nervosa and bulimia nervosa. J Psychiatr Res. 1999;33:129–38.

Tenconi E, Santonastaso P, Degortes D, Bosello R, Titton F, Mapelli D, et al. Set-shifting abilities, central coherence, and handedness in anorexia nervosa patients, their unaffected siblings and healthy controls: exploring putative endophenotypes. World J Biol Psychiatry. 2010;11(6):813–23.

Steinglass JE, Walsh BT, Stern Y. Set shifting deficit in anorexia nervosa. J Int Neuropsychol Soc. 2006;12(3):431–5.

Konstantakopoulos G, Tchanturia K, Surguladze SA, David AS. Insight in eating disorders: clinical and cognitive correlates. Psychol Med. 2011;41(9):1951–61.

Abbate-Daga G, Amianto F, Delsedime N, De-Bacco C, Fassino S. Resistance to treatment and change in anorexia nervosa: a clinical overview. BMC Psychiatry. 2013;13(1):294.

Guarda AS. Treatment of anorexia nervosa: insights and obstacles. Physiol Behav. 2008;94(1):113–20.

Stoving RK. Mechanisms In Endocrinology: Anorexia nervosa and endocrinology: a clinical update. Eur J Endocrinol. 2019;180(1):R9–r27.

Barona M, Brown M, Clark C, Frangou S, White T, Micali N. White matter alterations in anorexia nervosa: evidence from a voxel-based meta-analysis. Neurosci Biobehav Rev. 2019;100:285–95.

Arain M, Haque M, Johal L, Mathur P, Nel W, Rais A, et al. Maturation of the adolescent brain. Neuropsychiatr Dis Treat. 2013;9:449–61.

PubMed   PubMed Central   Google Scholar  

Mogensen J. Reorganization of the injured brain: implications for studies of the neural substrate of cognition. Front Psychol. 2011;2:7.

Tchanturia K, Lounes N, Holttum S. Cognitive remediation in anorexia nervosa and related conditions: a systematic review. Eur Eat Disord Rev. 2014;22(6):454–62.

Bando N, Watanabe K, Tomotake M, Taniguchi T, Ohmori T. Central pontine myelinolysis associated with a hypoglycemic coma in anorexia nervosa. Gen Hosp Psychiatry. 2005;27(5):372–4.

Dobson KS, Dozois DJ. Attentional biases in eating disorders: a meta-analytic review of Stroop performance. Clin Psychol Rev. 2004;23(8):1001–22.

Schilder CMT, van Elburg AA, Snellen WM, Sternheim LC, Hoek HW, Danner UN. Intellectual functioning of adolescent and adult patients with eating disorders. Int J Eat Disord. 2017;50(5):481–9.

Lena SM, Fiocco AJ, Leyenaar JK. The role of cognitive deficits in the development of eating disorders. Neuropsychol Rev. 2004;14(2):99–113.

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Acknowledgements

We would like to thank Professor Jesper Mogensen at the Unit for Cognitive Neuroscience, University of Copenhagen, Denmark, for his inputs regarding neurocognitive reorganization and the possibility of extending his model to the research field of anorexia nervosa.

The study was supported by government funding: The Psychiatric Research Fund of Southern Denmark (grants for material and PhD salary) and the University of Southern Denmark (faculty scholarship). Furthermore, the study was supported with grants for material by private funds: the Jascha Foundation and the Beckett Foundation. The funding sources had no role in the design, execution, interpretation, analysis, or publication of the study.

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Alia Arif Hussain & Jan Magnus Sjögren

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SDH and RKS completed the data collection. RKS was the initiator of the project. SDH, RKS, and MBL all took part in the design of the study. SDH, RKS, MBL, JMS and AAH were all contributors in writing the manuscript. All authors read and approved the final manuscript.

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Hemmingsen, S.D., Lichtenstein, M.B., Hussain, A.A. et al. Case report: cognitive performance in an extreme case of anorexia nervosa with a body mass index of 7.7. BMC Psychiatry 20 , 284 (2020). https://doi.org/10.1186/s12888-020-02701-1

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Antonella: ‘A Stranger in the Family’—A Case Study of Eating Disorders Across Cultures

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The story of Antonella illustrates the way in which cultural and other values impact on the presentation and treatment of eating disorders. Displaced from her European home culture to live in Canada, Antonella presents with an eating disorder and a fluctuating tableau of anxiety and mood symptoms linked to her lack of a sense of identity. These arose against a background of her adoption as a foundling child in Italy and her attachment problems with her adoptive family generating chronically unfixed and unstable identities, resulting in her cross-cultural marriage as both flight and refuge followed by intense conflicts. Her predicament is resolved only when after an extended period in cultural family therapy she establishes a deep cross-species identification by becoming a breeder of husky dogs. The wider implications of Antonella’s story for understanding the relationship between cultural values and mental health are briefly considered.

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• Eating disorders
• Anorexia multiforme
• Cultural values
• Uniqueness of the individual
• Role of animals
• Cross-species identification
• Cultural family therapy

1 Introduction

Eating disorders are a potentially fruitful area of study for understanding the links between values—in particular cultural values—and mental distress and disorder. Eating disorders show widely different prevalence rates across cultures, and much attention has been given to theories linking these differences with variations in cultural values. In particular, the cultural value placed on ‘fashionable slimness’ in the industrialised world has for some time been identified with the greater prevalence of eating disorders among women in Western societies [ 1 ]. Consistently with this view, the growing prevalence of eating disorders in other parts of the world does seem to be correlated with increasing industrialisation [ 2 , 3 ]. In my review of cultural distribution and historical evolution of eating disorders , I was so struck by its protean nature and its variability of clinical presentations of anorexia nervosa that I renamed this predicament ‘anorexia multiforme’ [ 4 , 5 ].

The story of Antonella that follows illustrates the potential importance of contemporary theories linking cultural values with eating disorders though also some of their limitations.

2 Case Narrative: Antonella’s Story

Ottawa in the early 1990s. Antonella Trevisan, a 24-year-old woman, was referred to me by an Italian psychiatrist and family therapist, Dr. Claudio Angelo, who had treated her in Italy [ 6 ] . When Antonella came to Canada to live with a man she had met through her work, Dr. Angelo referred her to me. Antonella’s presenting problems concerned two areas of her life: her eating problems, which emerged after her emigration from Italy, and her relationship with her partner in Canada.

2.1 Antonella’s Predicament

My initial psychiatric consultation (conducted in Italian) revealed the complexities of Antonella’s life. This was reflected in the difficulty of making an accurate diagnosis. Her food-related problems had some features of eating disorders , such as restriction of intake, the resulting weight loss, and a history of weight gain and being teased for it. What was missing was the ‘psychological engine’ of an eating disorder: a drive for thinness or a morbid fear of fatness. Her problem was perhaps better understood as a food-related anxiety arising from a ‘globus’ sensation (lump in the throat) and a learned avoidance response that generalized from one specific situation to eating in any context.

Although it was clear that her weight gain in late adolescence and the teasing and insults from her mother had sensitized her, other factors had to be considered. Antonella showed an exquisite rejection sensitivity that both arose from and was a metaphor for the circumstances of her birth and adoption. Her migration to Canada also seemed to generate anxieties and uncertainties, and there were hints of conflicts with her partner. Was she also re-enacting another, earlier trauma? In the first journey of her life, she was given up by her birth mother (or taken away?) and left on the steps of a foundry. In the first year of her life, Antonella had shown failure to thrive and developmental delays. And she had, at best, an insecure attachment to her adoptive family, predisposing her to lifelong insecurities.

2.2 A Therapeutic Buffet

After my assessment, we faced a choice: whether to treat the eating problem concretely, in purely behavioral terms, or more metaphorically, with some form of psychotherapy. Given the stabilization of her eating pattern and her weight and the larger context of her predicament, we negotiated to do psychotherapy. There were several components to her therapy. Starting with a psychiatric consultation, three types of therapy were negotiated, with Antonella sampling a kind of ‘therapeutic buffet’ over a period of some 2 years: individual therapy for Antonella, couple therapy for Antonella and Rick, and brief family therapy with Antonella’s adoptive family visiting from Italy.

The individual work with Antonella was at first exploratory, getting to know the complex bicultural world of the Italian Alps, how she experienced the move to Canada, examining her choices to move here and live with Rick. Sessions were conducted in a mix of Italian and English. At first, the Italian language was like a ‘transitional object’ in her acculturation process; slowly, as she gained confidence in her daily life, English began to dominate her sessions. Under stress, however, she would revert to Italian. I could follow her progress just by noting the balance of Italian and English in each session. This does not imply any superiority of English or language preferences; rather, it acknowledges the social realities of culture making its demands felt even in private encounters. This is the territory of sociolinguistics [ 7 , 8 ] . Like Italian, these individual sessions were a secure home base to which Antonella returned during times of stress or between other attempts to find solutions.

After some months in Canada and the stabilization of her eating problems, Antonella became more invested in examining her relationship to Rick. They had met through work while she was still in Italy. After communicating on the telephone, she daringly took him up on an offer to visit. During her holiday in Canada, a romance developed. After her return to Italy, Antonella made the extraordinary decision to emigrate, giving up an excellent position in industry, leaving her family for a country she did not know well. Rick is 22 years her senior and was only recently separated from his first wife.

In therapy she not only expressed ambivalence about her situation with Rick but enacted it. She asked for couple sessions to discuss some difficulties in their relationship. Beyond collecting basic information, couple sessions were unproductive. While Rick was frank about his physical attraction to her and his desire to have children, Antonella talked about their relationship in an oddly detached way. She could not quite articulate her concerns. As we got closer to examining the problems of their relationship, Antonella abruptly announced that they were planning their wedding. The conjoint sessions were put on hold as they dealt with the wedding arrangements.

Her parents did not approve of the marriage and boycotted the wedding. Her paternal aunt, however, agreed to come to Canada for the wedding. Since I was regarded by Antonella as part of her extended family support system, she brought her aunt to meet me. It gave me another view of Antonella’s family. Her aunt was warm and supportive of Antonella, trying to smooth over the family differences. A few months later, at Christmas time, her parents and sister visited, and Antonella brought them to meet me. To understand these family meetings, however, it is necessary to know Antonella’s early history.

2.3 A Foundling Child

Antonella was a foundling child. Abandoned on the steps of a foundry in Turin as a newborn, she was the subject of an investigation into the private medical clinics of Turin. This revealed that the staff of the clinic where she was born was ‘paid off to hide the circumstances of my birth.’ As a result, her date of birth could only be presumed because the clinic staff destroyed her birth records. She was taken into care by the state and, as her origins could not be established, she was put up for adoption.

Antonella has always tried to fill in this void of information with meaning that she draws from her own body. She questions me closely: ‘Just look at me. Don’t you think I look like a Japanese?’ She feels that her skin tone is different from other Italians, that her facial features and eyes have an ‘Asian’ cast. With a few, limited facts, and some speculation, she has constructed a personal myth: that she is the daughter of an Italian mother from a wealthy family (hence her hidden birth in a private clinic) and a Japanese father (hence her ‘Asian’ features). It is oddly reassuring to her, but also perhaps a source of her alienation from her family.

At about 6 months of age, Antonella was adopted into a family in the Italian Alps, near the border with Austria. This is a bicultural region where both Italian and German are spoken and services are available in both languages (much like Ottawa, which is bilingually English and French). Her father, Aldo, who is Italian, is a retired FIAT factory worker. Annalise, her mother, who is a homemaker, had an Italian father and an Austrian mother. About her family she said, ‘I had a wonderful childhood compared to what came afterwards.’ Years after her adoption, her parents had a natural child, Oriana, who is 15.

She describes her mother as the disciplinarian at home. Her mother, she said, was ‘tough, German.’ When she visited her Austrian grandmother, no playing was allowed in that strict home. Her own mother allowed her ‘no friends in the house,’ but her father ‘was my pal when I was a kid.’ Although she had a good relationship with her father, he became ‘colder’ when she turned 13. Her parents’ relationship is remembered as cordial, but she later learned that they had many marital problems. Mother told her that she married to get away from home, but in fact she was in love with someone else. Overall, the feeling is of a rigid family organization. Her father is clearly presented by Antonella as warmer and more sociable. She experiences her mother as being ‘tough’. But she is crying all the time, feeling betrayed by everybody.

2.4 A Family Visit from the Italian Alps

When her family finally came to visit, Antonella brought them to see me. At first, the session had the quality of a student introducing out-of-town parents to her college teacher. They were pleased that I spoke Italian and knew Dr. Angelo, who they trusted. I soon found that the Trevisans were hungry to tell their story. Instead of a social exchange of pleasantries, this meeting turned into the first session of an impromptu course of brief family therapy.

Present were Antonella’s parents, Aldo and Annalise, and her sister, Oriana. Annalise led the conversation. Relegating Aldo to a support role. Oriana alternated between disdain and agitation, punctuated by bored indifference. Annalise had much to complain about: her own troubled childhood, her sense of betrayal and abandonment, heightened by Antonella’s departure from the family and from Italy. I was struck by the parallel themes of abandonment in mother and daughter. Mother clearly needed to tell this story, so I tried to set the stage for the family to hear her, what narrative therapists call ‘recruiting an audience’ [ 9 ] . I used Antonella, who I knew best, as a barometer of the progress of the session, and by that indicator, believed it had gone well.

When I saw them again some 10 days later, I was stunned by the turn of events. Oriana had assaulted her parents. The father had bandages over his face and the mother had covered her bruises with heavy make-up and dark glasses. Annalise was very upset about Oriana, who was defiant and aggressive at home. For her part, Oriana defended herself by saying she had been provoked and hit by her mother. Worried by this dangerous escalation, I tried to open some space for a healthy standoff and renegotiation.

Somehow, the concern had shifted away from Antonella to Oriana. Antonella was off the hook, but I waited for an opening to deal with this. I first tried to explore the cultural attitudes to adolescence in Italy by asking how the Italian and the German subcultures in their area understood teenagers differently. What were Oriana’s concerns? Had they seen this outburst coming? The whole family participated in a kind of sociological overview of Italian adolescence, with me as their grateful audience. The parents demonstrated keen insight and empathy. Concerned about Oriana’s experience of the session, I made a concerted effort to draw her into it. Eventually, the tone of the session lightened. Knowing they would return to Italy soon, I explored whether they had considered family work. Since they had met a few times with Dr. Angelo over Antonella’s eating problems, they were comfortable seeing Dr. Angelo as a family to find ways to understand Oriana and her concerns and for Oriana to explore other, nonviolent ways to be heard in the family. I agreed to meet them again before their departure and to communicate with Dr. Angelo about their wishes. On their way out, I wondered aloud about the apparent switch in their focus from Antonella to Oriana. The parents reassured me that they were ready to let Antonella live her own life now.

When they returned to say goodbye, we had a brief session. Oriana and Antonella were oddly buoyant and at ease. The parents were relieved. Antonella had offered the possibility of Oriana returning to spend the summer in Canada with her. I tried to connect this back to the previous session, wondering how much the two sisters supported each other. I was delighted, I said emphatically, by the family’s apparent approval of Antonella’s marriage to Rick. It was striking that, even from a distance of thousands of miles away, Antonella was still a part of the Trevisan family. And Rick was still not in the room.

3 Discussion

In this section, I will consider the impact of cultural and other values on Antonella and those around her and then look briefly at the wider implications of her story for our understanding not only of eating disorders but of mental distress and disorders in general.

3.1 Antonella: Life Before Man

The key to understanding Antonella’s attachments was her passion for her Siberian huskies. In the language of values-based practice , it was above all her huskies that mattered or were important to her. And it is not hard to see why. From the beginning of her relationship with Rick, she used her interest in dogs as a way for them to be more socially active as a couple, getting them out of the house to go to dog shows, for example. As her interests expanded, she wanted to buy bitches for breeding and to set up a kennel. Rick was only reluctantly supportive in this. Nonetheless, they ended up buying a home in the country where she could establish a kennel. Her haggling with Rick over the dogs was quite instrumental on her part, representing her own choices and interests and a test of the extent to which Rick would support her.

Yet the importance to Antonella of her huskies rests I believe on deeper cultural factors, both negative and positive. As to negative factors , these are evident in the fact that from the first days of her life, Antonella was rejected by her birth parents, literally abandoned and exposed, and later adopted by what she experienced as a non-nurturing family. Positive cultural factors , on the other hand, are evident in the way that having thrown her net wider afield, she looked initially to Canada, and to Rick, for nurturance and for identity. Then, finding herself only partly satisfied, she turned to the nonhuman world for the constancy of affection she could not find with people. Her huskies gave her pleasure, a task, and an identity. She spent many sessions discussing their progress, showing me pictures of her dogs and their awards. As it happened, my secretary at the time was also a dog lover who raised Samoyed dogs (related to huskies) and the two of them exchanged stories of dog lore.

As to positive factors , again, is there something, too, in the mythology of Canada that helps us understand Antonella? Does Canada still hold a place in the European imagination as a ‘New World’ for radical departures and identity makeovers? Or does Canada specifically represent the ‘malevolent North,’ as Margaret Atwood [ 10 ] calls it in her exploration of Canadian fiction? Huskies are a Northern animal, close to the wolf in their origins and habits. Bypassing the human world, Antonella finds her identity within a new world through its animals. If people have failed her, then she will leave not only her own tribe (Italy), but skip the identification with Canada’s Native peoples, responding to the ‘call of the wild’ to identify with a ‘life before man’ (to use another of Atwood’s evocative phrases, [ 11 ]), finding companionship and solace with her dogs.

3.2 Wider Implications of Antonella’s Story

Antonella may seem on first inspection something of an outlier to the human tribe. Orphaned from her culture of origin, she finds her place not in another country but by identification with another and altogether wilder species, her husky dogs. Yet, understood through the lens of values-based practice Antonella’s story has, I believe, wider significance at a number of levels.

First, Antonella’s story is significant for our understanding of the role of values – of what is important or matters to the individual concerned – in the presentation and treatment of eating disorders , and, by extension, of perhaps many other forms of mental distress and disorder. Specifically, her story provides at least one clear ‘proof of principle’ example supporting the role of cultural values.

As noted in my introduction, much attention has been given in the literature to the correlations between the uneven geographical distribution of eating disorders and cultural values. Correlations are of course no proof of causation. But in Antonella’s story at least the role of cultural values seems clearly evident. They were key to understanding her presenting problems. And this understanding in turn proved to be key to the cultural family therapy [ 12 ] through which these problems were, at least to the extent of her presenting eating disorder, resolved.

The cultural values involved, it is true, were not those of fashionable slimness so widely discussed in the literature. But this takes us to a second level at which Antonella’s story has wider significance. For it shows that to the extent that cultural values are important in eating disorders , their importance plays out at the level of individually unique persons. In this sense, social stresses and cultural values are played out in the body of the individual suffering with an eating disorder, making her body the ‘final frontier’ of psychiatric phenomenology [ 13 ]. Yes, there are no doubt valid cultural generalisations to be made about eating disorders and mental disorders of other kinds. And yes, these generalisations no doubt include generalisations about cultural values—about things that matter or are important to this or that group of people as a whole. Yet, this does not mean that we can ignore the values of the particular individual concerned. It has been truly said in values-based practice that as to their values, everyone is an ‘ n of 1’ [ 14 ]. Antonella, then, in the very idiosyncrasies of her story, reminds us of the idiosyncrasies of the stories of each and every one of us, whatever the culture or cultures to which we belong.

Antonella’s identification with animals , furthermore, to come to yet another level at which her story has wider significance, was a strongly positive factor in her recovery. As with other areas of mental health, it is with the negative impact of cultural values that the literature has been largely concerned: the pathogenetic influences of cultural values of slimness being a case in point in respect of eating disorders . Antonella’s story illustrates what has been clear for some time in the ‘recovery movement’, that positive values are often the very key to recovery. Not only that, but as Antonella’s passion for her husky dogs illustrates, the particular positive values concerned may, and importantly often are, individually unique.

Not, it is worth adding finally, that Antonella’s values were in this respect entirely unprecedented. Animals , after all, are widely valued, positively and negatively, and for many different reasons, in many cultures [ 11 ]. Their healing powers are indeed acknowledged. Just how far these powers depend on the kind of cross-species identification shown by Antonella, remains a matter for speculation. But, again, her story even in this respect is far from unique. Elsewhere, I have described the story of a white boy with what has become known as the ‘Grey Owl Syndrome’ , wishing to be native [ 12 , chapter 5 ]. Similarly, in Bear , Canadian novelist Marion Engel [ 15 ] portrays Lou, a woman who lives in the wilderness and befriends a bear. Lou seeks her identity from him: ‘Bear, make me comfortable in the world at last. Give me your skin’ [ 15 , p. 106]. After some time with the bear, the woman changes: ‘What had passed to her from him she did not know…. She felt not that she was at last human, but that she was at last clean’ [ 15 , p. 137]. It was perhaps to some similarly partial resolution that Antonella came.

4 Conclusions

Antonella’s story as set out above goes to the heart of the importance of cultural values in mental health. Her presenting eating disorder develops when, displaced from her culture of origin in Italy, and in effect rejected by her birth family, she finds healing only through cross-species identification with the wildness of husky dogs in her adoptive country of Canada. Although somewhat unusual in its specifics, her story illustrates the importance of cultural values at a number of levels in the presentation and management of eating and other forms of mental distress disorder.

And Antonella? I met her again in a gallery in Ottawa, rummaging through old prints. She was asking about prints of dogs; I was looking for old prints of Brazil where my father had made a second life. How was she, I asked? ‘Well …,’ she said hesitantly. Was that a healthy ‘well’ or the start of an explanation? ‘Me and Rick are splitting up,’ she said without ceremony, ‘but I still have the huskies.’ For each of us, the prints represented another world of connections.

Makino M, Tsuboi K, Denerson L. Prevalence of eating disorders: a comparison of Western and non-Western countries. MedGenMed. 2004;6(3):49. Published online 2004 Sep 27 at: https://www.ncbi.nlm.nih.gov/pubmed .

PubMed   PubMed Central   Google Scholar  

Erskine HE, Whiteford HA, Pike KM. The global burden of eating disorders. Curr Opin Psychiatry. 2016;29(6):346–53.

Article   Google Scholar  

Selvini Palazzoli M. Anorexia nervosa: a syndrome of the affluent society. Transcult Psychiatr Res Rev. 1985;22( 3 ):199–205.

Google Scholar  

Di Nicola VF. Overview: anorexia multiforme: self-starvation in historical and cultural context. I: self-starvation as a historical chameleon. Transcult Psychiatr Res Rev. 1990;27(3):165–96.

Di Nicola VF. Overview: anorexia multiforme: self-starvation in historical and cultural context. II: anorexia nervosa as a culture-reactive syndrome. Transcult Psychiatr Res Rev. 1990;27(4):245–86.

Andolfi M, Angelo C, de Nichilo M. The myth of atlas: families and the therapeutic story. Edited & translated by Di Nicola VF. New York: Brunner-Routledge; 1989.

Douglas M. Humans speak. Ch 11. In: Implicit meanings: essays in anthropology. London: Routledge & Kegan Paul; 1975. p. 173–80.

Crystal D. The Cambridge encyclopedia of language. Cambridge: Cambridge University Press; 1987.

Parry A, Doan RE. Story re-visions: narrative therapy in the postmodern world. New York: Guilford Press; 1995.

Atwood M. Strange things: the malevolent north in Canadian literature. Oxford: Oxford University Press; 1995.

Atwood M. Life before man: a novel. New York: Anchor Books; 1998.

Di Nicola VF. A stranger in the family: culture, families, and therapy. New York: W.W. Norton & Co.; 1997.

Nasser M, Di Nicola V. Changing bodies, changing cultures: an intercultural dialogue on the body as the final frontier. Ch 9. In: Nasser M, Katzman MA, Gordon RA, editors. Eating disorders and cultures in transition. East Sussex: Brunner-Routledge; 2001. p. 171–93.

Fulford KWM, Peile E, Carroll H. A smoking enigma: getting and not getting the knowledge. Ch 6. In: Fulford KWM, Peile E, Carroll H, editors. Essential values-based practice: clinical stories linking science with people. Cambridge: Cambridge University Press; 2012. p. 65–82.

Chapter   Google Scholar  

Engel M. Bear: a novel. Toronto: Emblem (Penguin Random House Books); 2009.

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Acknowledgements

The story of Antonella was first published in reference [ 12 ] (pp. 214–220) and presented at the Advanced Studies Seminar of the Collaborating Centre for Values-based Practice in Health and Social Care at St Catherine’s College, Oxford in October 2019. The names and other details of the case have been altered to maintain confidentiality. Parts of the discussion are adapted from that publication and the Oxford seminar. I am grateful to the publishers for permission to reproduce these materials here and to Professor Fulford and the members of the Advanced Studies Seminar for their stimulating exchanges. The subheading to the discussion of Antonella’s story (‘Life before Man’) was inspired by Margaret Atwood’s novel, Life Before Man [ 11 ].

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Vincenzo Di Nicola

Department of Psychiatry and Behavioral Sciences, The George Washington University, Washington, DC, USA

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Medical University Plovdiv, Plovdiv, Bulgaria

Drozdstoy Stoyanov

St Catherine’s College, University of Oxford, Oxford, UK

Bill Fulford

Department of Psychological, Health & Territorial Sciences, “G. D’Annunzio” University, Chieti Scalo, Italy

Giovanni Stanghellini

Centre for Ethics and Philosophy of Health Sciences, University of Pretoria, Pretoria, South Africa

Werdie Van Staden

Department of Psychiatry, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong, China

Michael TH Wong

Guide to Further Sources

For a more extended treatment of the role of culture in eating disorders and family therapy see:

Di Nicola VF (1990a) Overview: Anorexia multiforme: Self-starvation in historical and cultural context. I: Self-starvation as a historical chameleon. Transcultural Psychiatric Research Review, 27(3): 165–196.

Di Nicola VF (1990b) Overview: Anorexia multiforme: Self-starvation in historical and cultural context. II: Anorexia nervosa as a culture-reactive syndrome. Transcultural Psychiatric Research Review, 27(4): 245–286.

Di Nicola, V (1997) A Stranger in the Family: Culture, Families, and Therapy . New York & London: W.W. Norton & Co.

Nasser M and Di Nicola, V. (2001) Changing bodies, changing cultures: An intercultural dialogue on the body as the final frontier. In: Nasser M, Katzman M A, and Gordon R A, eds. Eating Disorders and Cultures in Transition . East Sussex, UK: Brunner-Routledge, pp. 171–193.

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Di Nicola, V. (2021). Antonella: ‘A Stranger in the Family’—A Case Study of Eating Disorders Across Cultures. In: Stoyanov, D., Fulford, B., Stanghellini, G., Van Staden, W., Wong, M.T. (eds) International Perspectives in Values-Based Mental Health Practice. Springer, Cham. https://doi.org/10.1007/978-3-030-47852-0_3

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• Published: 22 April 2024

Meal support intervention for eating disorders: a mixed-methods systematic review

• Aleshia Ellis 1 ,
• Kerri Gillespie 1 ,
• Laura McCosker 1 ,
• Carly Hudson 2 ,
• Gideon Diamond 1 ,
• Tawanda Machingura 2 ,
• Grace Branjerdporn 1 , 2 &
• Sabine Woerwag-Mehta 1 , 2  

Journal of Eating Disorders volume  12 , Article number:  47 ( 2024 ) Cite this article

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Mealtimes are a period of heightened distress for individuals with eating disorders. Patients frequently display maladaptive coping strategies, such as hiding food and using distraction techniques to avoid eating. The aim of this systematic review is to evaluate the evidence for meal support interventions as a first-line intervention for eating disorders.

Six databases were systematically searched in January 2024. Papers including patients with an eating disorder, and meal support or meal supervision, were examined. Quality appraisal was conducted.

Ten studies met inclusion criteria. Meal support was conducted individually and in group settings. Two studies examined the practical or interpersonal processes of meal support. Carers and trained clinicians implemented meal support. Individuals across the lifespan were examined. Settings included inpatient units, community clinics, and the home. Studies were heterogeneously evaluated with retrospective chart audits, pre- and post- cohort studies, semi-structured interviews, video analysis, and surveys.

Meal support intervention is potentially suitable and beneficial for patients of various age groups and eating disorder diagnoses. Due to the lack of consistent approaches, it is apparent there is no standardised framework and manualised approach. This highlights the need for the development of a co-designed approach, adequate training, and rigorous evaluation.

Plain English summary

Previous research indicates that meal support may be potentially beneficial as an independent intervention in the treatment of eating disorders, but inconsistent approaches and a lack of standardization make evaluations challenging. The current study aims to provide an overview of current meal support interventions, how they are implemented, and their impacts on health outcomes and hospital admissions in people experiencing an eating disorder. Gaps in current knowledge and research highlight the need for further investigation, and the development of a co-designed approach, adequate training, and rigorous evaluation.

Eating and drinking are fundamental and life sustaining activities. Eating is a learnt behaviour, contrary to thoughts it is innate [ 1 ]. Findings from a large number of studies indicates that eating meals together as a family is associated with favourable dietary patterns and improved physical and psychosocial outcomes in children, including fewer rates of obesity, decreased risk for eating disorders, and improved academic achievement [ 2 ]. An inverse correlation between family meal frequency and weight-control behaviour, binge eating, and chronic dieting, for females has been reported [ 3 , 4 , 5 ].

For individuals with eating disorders, meal times are a period of heightened distress [ 6 ]. Negative emotions, such as fear, anxiety, disgust, irritability, anger and depression increase during mealtimes [ 7 , 8 , 9 , 10 ]. To cope with these feelings patients frequently display maladaptive coping strategies, such as avoiding eating certain foods, avoiding eating with others, hiding food, covertly exercising, and using distraction techniques to avoid eating [ 7 , 11 , 12 ].

Whilst a strong predictor of clinical outcome is eating behaviour, directly or indirectly related to weight restoration [ 13 , 14 ], support during meal times is a critical and effective component of nutritional rehabilitation [ 15 ]. There is no consistent approach consensus or guideline on how to best support an individual with disordered eating behaviours during meal times [ 10 , 16 , 17 ].

The most researched and utilised form of meal support is the family meal, a component of Maudsley Family Based Therapy (MFBT), Family Therapy (FBT) and Multifamily Therapy (MFT), the current gold standards of treatment for children with anorexia nervosa and bulimia nerviosa. The family meal is typically conducted during the first phase of treatment. The focus, approach and number of family meals conducted is highly variable with some models emphasising normalising eating, whilst others focus on the improvement of family relations and interactions [ 18 , 19 ].

Clinicians and personal supports (including families and caregivers) of those with eating disorders report mealtimes as being distressing, putting caregivers and clinicians at risk of emotional burn out [ 20 , 21 , 22 , 23 ]. The family meal has been described as particularly challenging and experienced by some as a cause for therapeutic breakdown and subsequent disengagement of families from therapy. Hence, adherence to this element of treatment is poor, with approximately 40.0% of clinicians reportedly not pursuing a family meal during MFBT/FBT [ 15 , 24 , 25 ]. An investigation of therapist perspectives on MFBT and FBT found highly inconsistent implementation of the family meal as a standard part of treatment, with only 25.0% conducting a meal on a regular basis [ 26 ]. Limited training in these specific therapeutic components, reluctance to view them as part of their therapeutic role, and a sense of intimidation and anxiety were reported reasons for the lack of adherence to the treatment protocol. Over a third (36.5%) of clinicians who reported using FBT rarely include the family meal in their practice [ 25 ]. In a study that investigated carers’ views on single and dual-family treatment for AN, some caregivers viewed the family meal as beneficial, but many perceived it as anxiety provoking or ‘‘false” [ 24 ]. A recent systematic review concluded that the usefulness of family meals in family therapy for eating disorders is not clear [ 27 ]. On the other hand, emerging evidence for alternative approaches to family meals, such as direct advice or DVDs, have shown to be acceptable and effective in inducing weight gain and reducing caregiver distress [ 28 , 29 , 30 ].

Inmproving the support provided at mealtimes is a core component of ED treatments, that aim to not only normalise weight, but also nromalise meal eating behaviours, and progress patients toward independence [ 15 , 31 ]. Previous research into the efficacy of meal support has predominantly investigated techniques that are part of a larger, family-based treatment model. A dearth of research relates to the potential benefit of meal support as a first-line intervention. Treatment Modalities to improve support during meal times are rooted in family therapy and have been used predominantly in child and adolescent populations. Little is currently understood about the impacts of meal support in adults compared to younger populations. We have therefore included all age groups in this review in an attempt to further understand the impacts of meal support in different age groups, and determine any differential effects. The differential impacts of meal support for different diagnoses (specifically AN compared to ARFID in younger cohorts) is also poorly understood and requires further investigation. The aim of this systematic review is to investigate whether meal support is being used as a first-line intervention, how these interventions are being implemented and for whom, and the characteristics of these interventions and where they take place. A secondary aim of the review is to evaluate the evidence for meal support interventions as a first-line treatment for eating disorders by identifying the outcomes of these interventions in terms of patient health and satisfaction of patients, parents and staff. While “meal support” and “meal supervision” was used interchangeably across studies, the term “meal support” will be used for the purpose of this review.

This systematic review was conducted according to the 2020 PRISMA reporting guidelines for Systematic Reviews and Meta-Analyses [ 32 ]. The review protocol was registered on the PROSPERO database (registration no. CRD42022311374). A narrative synthesis was conducted where papers were too heterogeneous or contained too little data to conduct meta-analysis.

Research questions

The systematic review will provide an exploratory investigation of the evidence for meal support interventions as a first-line treatment, by answering the following research questions:

What are the characteristics of existing, first-line, meal support interventions described in the literature?

What are the outcomes of first-line meal support interventions, in terms of patient health (weight gain, food consumption, length of stay)?

What are the qualitative outcomes of first-line meal support interventions, in terms of patient, parent, or staff satisfaction and opinions.

Search strategy

Search terms were chosen after investigation of the literature, and consultation with eating disorder researchers and clinicians. Preliminary searches were conducted to identify the optimal search strategy and to eliminate overly broad terms and abbreviations that retrieved excessive numbers of unrelated articles (such as AN, ED, and BED). The search strategy, outlined in Table  1 , contained keywords and MeSH terms relevant to meal support and meal supervision for people with a diagnosis of an eating disorder. Six online databases were systematically searched in December 2021: CINAHL, EMBASE, PsycInfo, PubMed, Scopus, and Web of Science. A manual, hand search of reference lists of included papers, and of related systematic reviews, was also conducted.

Selection criteria

Papers were included based on the following criteria:

Patients had a diagnosis of an eating disorder [anorexia nervosa, bulimia nervosa, binge eating disorder, avoidant and restrictive food intake disorder (ARFID)].

Meal support or meal supervision was used.

Papers with no empirical data, or which were not available in English were excluded. There were no restrictions on the type of study setting in which the meal support intervention occurred (e.g., inpatient, ambulatory clinics, home, public and private); type of methodology employed (e.g., qualitative, quantitative or mixed methods); or age of the participant.

Screening process

Duplicate papers were removed from the original yield of the databases. Titles and abstracts were reviewed by two independent raters based on the inclusion criteria. The full-texts of remaining articles were also independently reviewed by two raters. In cases of disagreement, the suitability of the article was discussed and consensus reached, or another researcher mediated the discussion to make a final determination about the article’s inclusion.

Quality assessment

The McMaster Quantitative and Qualitative Assessment Tools, and the Mixed-Methods Appraisal Tool (MMAT) [ 33 ] were used to appraise the quality of included articles. The MMAT is a 19-item checklist designed to concomitantly appraise the methodological quality of quantitative, qualitative and mixed methods studies. Studies were independently assessed by two raters and the findings were compared. In cases where there was discrepancy, results were discussed until a consensus was reached.

Study selection

14,096 studies were identified through database searching. Once duplicates were removed, the title and abstracts of 5,173 studies were screened, excluding 5,129 studies. Forty-four full-texts were then reviewed for eligibility, resulting in 34 articles being excluded. Reasons for exclusion were that studies were not focused on meal support as a first-line intervention ( n  = 20), were a conference abstract, poster, dissertation or other non-eligible paper type ( n  = 11), included the wrong patient population ( n  = 2), or not available in English ( n  = 1). A PRISMA flowchart of the study screening and selection process is presented in Fig.  1 .

PRISMA flow diagram

Methodological quality of studies

Quality assessment results are displayed in Supplementary Tables 1 , 2 , and 3 . Purpose, background literature, study design and type, results’ statistical significance, analyses clinical importance and conclusions were described well for quantitative studies ( n  = 4) [ 15 , 34 , 35 , 36 ]. Two studies did not include one or more of the following details: sample size justification, validity of outcome measures, description of the intervention, contamination and cointervention avoided, and drop-out reporting [ 35 , 36 ]. Qualitative studies ( n  = 4) [ 37 , 38 , 39 , 40 ] mostly met the quality appraisal criteria except for two studies [ 39 , 40 ] which did not report, or provided inadequate detail, for one or more of the following aspects: theoretical perspective, obtaining informed consent, identifying assumptions and biases of the researcher and reporting on the decision trail. Kells (2013) reported better outcomes in patients who received meal support compared to patients who did not receive meal support; however, it is unclear whether patient characteristics, severity of illness, length of diagnosis, and physical compromise were comparable to the intervention group. Mixed-methods studies ( n  = 2) [ 10 , 41 ] tended to meet the quality appraisal criteria except for not integrating quantitative and qualitative results, and addressing inconsistencies in the results between these two components.

Study characteristics

Quantitative ( n  = 4) [ 15 , 34 , 35 , 36 ], qualitative ( n  = 4) [ 37 , 38 , 39 , 40 ], and mixed-methods design ( n  = 2) [ 10 , 41 ] were identified. Specific methodologies included retrospective chart audits [ 15 , 35 , 36 ], a pre- and post- cohort study [ 34 ], semi-structured interviews [ 10 , 39 , 40 ], video analyses [ 37 , 38 ], and surveys [ 10 , 41 ].

Most studies ( n  = 7) were conducted within an inpatient specialist eating disorders unit [ 10 , 15 , 35 , 36 , 37 , 38 , 40 ]. A private eating disorders clinic [ 34 ], child and adolescent public tertiary mental health community service [ 41 ], and home were also identified [ 34 , 39 ]. The sample size ranged between 9 and 56 participants.

Study participants

Study participants included patients diagnosed with an eating disorder (anorexia nervosa, bulimia nervosa, ARFID, binge eating disorder) ( n  = 5) [ 15 , 34 , 35 , 36 , 40 ] and in two, linked studies, a mixed group of patients with an eating disorder and some patients with a diagnosis of disordered eating not meeting diagnostic threshold [ 35 , 36 ] receiving meal support; clinicians providing meal support ( n  = 4) [ 10 , 37 , 39 , 39 ]; and parents and carers of patients with eating disorders ( n  = 1) [ 41 ].

Patient characteristics

As seen in Table  2 , most studies ( n  = 7) examined patients with a primary diagnosis of anorexia nervosa [ 15 , 35 , 36 , 37 , 38 , 40 , 41 ]. Patients with an eating disorder not otherwise specified (EDNOS) were investigated in two studies [ 36 , 41 ]. Diagnoses of bulimia nervosa [ 41 ] and ARFID [ 34 ] were included in one study each. One study also included in their cohort some patients who did not meet the diagnostic threshold fo an eating disorder diagnosis [ 36 ]. Average Body Mass Index (BMI) ranged between 14 and 16.1 in the three studies that reported BMI [ 35 , 36 , 38 ].

Most ( n  = 6) studies included adolescents between 12 and 18 years old [ 15 , 35 , 36 , 41 ], staff and patients at facilities that catered for adolescents aged 12 to 18 [ 37 ], or staff that treated adolescents 16 and over [ 38 ]. Two studies included patients under 12 years [ 34 , 35 ]. Three studies included patients over the age of 18 [ 35 , 36 , 40 ]. One study included staff members for facilities treating patients of all ages [ 10 ]. Three studies involved exclusively [ 40 ] or predominantly [ 15 , 35 ] female patients, and one study focused on mostly male patients [ 34 ]. Studies that did not specify gender focused on study characteristics and / or included staff members as participants.5)

Clinician characteristics

Three studies, reported on clinicians of varying professional backgrounds delivering meal support: including nursing staff; clinical support staff; consultant psychiatrists; social workers, and; child welfare officers [ 37 , 38 , 39 ].

Intervention characteristics

As seen in Table  3 , staff to patient ratios varied across inpatient units starting from 1:1 [ 10 , 34 , 39 ] and ranging up to 1:10 [ 10 ]. Most ( n  = 9) studies provided meal support by a trained clinician [ 10 , 15 , 34 , 35 , 36 , 37 , 38 , 39 , 40 ].

Two studies examined the practical [ 38 ] or interpersonal [ 37 ] processes of meal support delivered within inpatient units. Practical processes consisted of three phases: preparatory (meals are served, and patients are asked to be seated at the table with their food), eating (patients and inpatient staff sit at the table and eat their meals, with support from the staff), and post-meal (patients finish eating and leave the dining room with the staff) [ 38 ]. Interpersonal aspects of meal support included: monitoring food intake, providing mealtime instruction, motivating and encouraging patients to complete the meal, expressing support and understanding, and providing psychoeducation [ 37 ].

The length of time of mealtimes varied from 30 min [ 34 , 37 , 38 ], to 60 min [ 10 ]. Supervised rest period immediately after the meal ranged from 15 to 60 min [ 10 , 15 , 38 , 39 ]. While it is common practice in eatig disorder treatments (e.g., CBT) to use graduated exposure to ‘fear-foods’ in ARFID and AN, none of the articles described implementing a graduated approach to meal supervision.

Aesthetics of the dining room (e.g., size, shape, and setting of the dining table), timing of the meals to avoid delays, and consistency in approach were important aspects identified to alleviate distress in patients [ 10 , 40 ]. Familiarity with the clinicians and having a standardised training approach were facilitators of meal support effectiveness [ 39 ]. Furthermore, clinicians providing empathic emotional support during mealtimes, such as encouraging patients to continue eating and reducing feelings of anxiety [ 10 , 15 ], whilst also being assertive and firm around food consumption [ 10 , 15 , 37 ] was reported being effective. Distraction techniques utilised and identified as helpful included discussing unrelated topics, employing breathing techniques, playing games, and watching television or listening to radio [ 10 , 15 ]. Staff, however, were uncertain around appropriate topics to discuss [ 10 ] and voiced that distraction could prolong eating time [ 40 ]. Peer support was found to be beneficial to instil hope that recovery was possible [ 37 ]. Interviews relating to patient experience of mealtimes revealed three themes: mealtime delivery (logistical factors influencing meals), individual outcomes (cognitions, emotions, behaviours, and physical sensations during meals), mealtime characteristics disengagement, perceived battlegrounds, and a desire for involvement in more decision making at mealtimes [ 40 ].

The importance of training parents and carers in providing meal support post-discharge was acknowledged in three studies [ 34 , 39 , 41 ]. Rigorous training of parents and carers of patients with ARFID in the provision of meal support at home was shown to be a successful alternative to long-term eating disorder outpatient treatment. Parental satisfaction and treatment acceptability were reported high and treatment gains were maintained during follow-up at a mean of 2.3 years [ 34 ].. Distribution of a manual and DVD for psychoeducation and meal support training was described as effective and valuable to parents and carers [ 41 ].

Quantitative outcomes

Three studies found positive outcomes with increased weight gain and fewer episodes of bradycardia [ 35 ], shorter hospital stays [ 36 ], reduced incidence of nasogastric feeding [ 15 ], and reduced incidence of inappropriate mealtime behaviours [ 34 ]. However, Kells and colleagues [ 35 ] found that meal supervision was associated with longer hospital stays. Two studies also found no differences between supervised (meal support) and non-supervised meals in terms of weight gain [ 15 , 36 ], electrolytes or vital signs [ 36 ], length of hospital stay [ 15 ], or rate of readmission [ 15 ]. All of these studies were conducted in child, adolescent, and young adult cohorts.

Experiences with meal support

Patients suggested simulating post-discharge meals, and reported that staff who eat alongside them and provide both empathic support and understanding of negative cognitions was important [ 10 ]. Parents and caregivers were satisfied with resources as it empowered them and increased their understanding; however, the stage of readiness of the patient needed to be considered [ 41 ]. Two studies explored clinicians’ experiences and feedback with regards to delivering meal support and supervision, suggesting that training in a uniform approach and debriefing sessions supported patient outcomes [ 37 , 39 ].

This literature review identified ten studies, that examine the role of meal support as a standalone intervention for eating disorders, using quantitative, qualitative and mixed methods approaches. Most studies met quality appraisal criteria with average ratings. Due to small numbers and heterogeneity in design and methodology comparisons between studies was not possible.

Retrospective chart audits, pre and post comparisons, interviews, surveys and video analyses were used to explore the significance of meal support from a patient, clinician and parent / carer perspective. Whilst most studies were conducted in inpatient settings, meal support was also examined in a mental health community service and the home environment. This suggests that a meal support intervention can potentially be used across inpatient and outpatient settings as well as the home environment. Patients predominately had a diagnosis of anorexia nervosa, and were adolescents, however meal support was also utilised forbulimia nervosa and ARFID in children and adults. Meal support intervention is potentially suitable and beneficial for patients of all age groups and can be applied for a range of eating disorder diagnoses. Two studies that included patients who did not meet the diagnostic threshold for a diagnosis, found a beneficial impact of meal support on patient outcomes [ 35 , 36 ], indicating the possible use of meal support as a preventive measure. Meal support was provided by clinicians from multi-professional backgrounds and in one study parents / carers were upskilled to deliver the intervention. Hence meal support could be conceptualised as a generic intervention, i.e., an intervention that could potentially be delivered by anyone, involved in the care of the patient, with adequate training.

In inpatient units, staffing levels available for the delivery of a meal support intervention varied significantly between studies. Practical and interpersonal aspects of the meal support intervention were explored and evaluated. Interpersonal aspects of meal support included: monitoring food intake, providing mealtime instruction, motivating and encouraging patients to complete the meal, expressing support and understanding, and providing psychoeducation [ 37 ].The included studies mainly focused on meal support within an inpatient setting. Supervised meals are assumed to be standard practice within specialised disorder inpatient units, and are considered best practice in facilitating refeeding in patients with eating disorders [ 42 ], however implementation across various settings has not been adequately researched. Our findings identified mixed results in terms of weight gain, length of stay, and future admissions, indicating that further research into this area is necessary. A complete lack of quantitative findings in adult groups means that findings of children and adolescents is potnentially being extrapolated to adult populations that may not be generalisable. Further studies into the benefits of meal support in adult populations is particularly warranted.

There was a lack of literature on provision of meal support in community settings or by parents and carers in the home environment; only three studies were conducted at home [ 34 , 39 , 41 ], with only two of these having meal support provided by the patients’ parents or carers [ 34 , 41 ]. It has been identified as essential that meals should reflect ‘normal’ situations, to facilitate a positive transition back to regular eating habits [ 39 , 40 ] Therefore, further research is needed to understand how meal support can be used in this way and how the intervention can be adapted and used in the transition from inpatient settings to both community and home environments. In the two studies where parents and carers provided meal support at home [ 34 , 41 ], it was emphasised that provision of training and support resources were required for them to be able to adequately deliver meal support. Parents appreciated an intensive, tailored training approach that provided them with the skills needed to support their child [ 43 ]. Similarly, a meal support manual and DVD resource were rated favourably by parents, who reported they provide empowerment and the ability to implement empathic emotional and practical meal support at home [ 41 ]. However, further exploration of access to continued support in their use and implementation, as well as avenues for troubleshooting, would help provide a more robust framework to which the intervention is based and practiced. The review also revealed that each setting delivered meal support differently, however all studies reported that the intervention generally consisted of supervised eating followed by a rest period, with staff providing emotional and practical support throughout.

The evidence examined in this review shows that there is currently no agreed standardised, manualised, consistent approach to meal support available. This has been highlighted as problematic and being distressing for patients, carers and clinicians. Uncertainty and variation in the intervention provided across different environments has the potential to affect treatment outcomes and lead to inconsistencies in approach. It also increases missed opportunities to provide valuable interventions to people across various settings and in some ways could lead to negatives experiences and a change in the trajectory of the participants recovery journey. Developing a manualised meal support approach, co-designed with patients, caregivers, and healthcare clinicians is vital in integrating the experiences of those involved in the intervention.

Furthermore, significant variation in the outcomes measured in each of these studies was observed; including recovery outcomes (e.g., weight gain, length of stay, food consumption), experience outcomes, and satisfaction outcomes. In some studies, these outcomes were measured using non-validated, unstandardised measures. Inconsistency for key recovery outcomes were reported; for instance Kells et al. [ 35 ] reported a mean weight increase following meal support, whilst Couturier et al. [ 15 ] observed no change. Hence the clinical impact of meal support as an intervention is not yet clearly established.

Limitations

This review synthesised the existing literature on meal support as an intervention for those with eating disorders and several limitations could be identified. The included studies were heterogenous in methodology and scope, which prevented the use of a meta-analysis to compare results across studies. Given that the literature on meal support is currently limited, none of the included studies were randomised controlled trials, which are the gold standard in assessing effectiveness of an intervention.

In a limited number of studies, the parent or carer of the patient, delivered the meal support intervention. Given that meal support is aligned with the person’s progress, and not the setting it is delivered in, further research involving caregivers would be beneficial in supporting recovery post-hospital discharge.

Although patients with a variety of eating disorder diagnoses were included in the studies, there is a need for further examination of how meal support intervention could be used and adapted for each diagnosis. In several of the studies, key demographic and clinical information, such as patients’ age and BMI was not reported. Reporting these variables is essential in understanding the patient population for which meal support might be suitable. However, these data were predominantly missing from papers focussed on describing the characteristics of the service, and not on patient outcomes. We therefore did not reach out to individual authors to request missing information. We acknowledge that failing to do so was another limitation of the study.

Clinical implications

Due to the lack of evidence, meal support is rarely referenced in guidelines. More rigorously designed studies are required to ascertain its potential in the field eating disorder treatment. Meal support intervention as a standalone treatment is unique as it is based on a pragmatic, as opposed to a systemic, approach. It focuses solely on practical skills required during mealtime and can potentially be used across all ages. Delivery of the meal support intervention is anticipated to be fluid, and adapted in keeping with the patient’s recovery journey. For instance, the intervention might be directive in the initial phase of recovery, with the person providing meal support taking on a deliberate authoritative approach. However, as recovery progresses the style of support is anticipated to transition to a more collaborative approach in line with the patients increasing ability to make healthy choices over food intake. This is in keeping with existing models, in which advice on meal management is embedded in either systemic or cognitive behavioural concepts. In a family environment, the nature of meal time interactions are reported as imperative to recovery outcomes and family mealtime interactions commonly consist of both direct and indirect eating prompts and the provision of information, incentivising eating [ 44 ]. Training parents and carers in meal support can foster these interactions and provide the practical skills required to enable continued care at home outside of the inpatient setting.

Whilst this intervention might potentially be beneficial in treating eating disorders, it is essential to improve the understanding of individual differences, interpersonal components, environmental factors and how practical support is best delivered. Effectiveness may vary dependent upon where in the recovery process the patient is, as well as the level of family/caregiver support that the patient has, and social influences that are at play [ 41 , 45 ]. Therefore, whilst the proposed manualised approach to meal support should outline a consistent assessment of needs and method for delivering the intervention, meal support approaches also need to be flexible and tailored to the needs of the patient and their available family and personal supports.

It is of note, that meal support is an important aspect of clinical care not only for patients with eating disorders. Meal support models outside the field of eating disorders might provide valuable insights on transferable skills, and concepts to meal support intervention. For instance, research into provision of meal support for patients with dementia identified core attitudes to its delivery that are potentially applicable and valuable for patients with eating disorders: i.e., the support person being able to establish a core connection, tailoring the intervention to the needs of the patient, whilst being receptive to the idea that needs may change [ 46 ] and recognising that good mealtime care helps patients to be empowered, and enables carers to respond in a way that encourages (but does not coerce) the patient to eat more [ 47 ]. However, due to the food-related distress observed in the disordered eating population, mealtime interventions are often seen as coercive, and it is uncertain how non-coercive, encouraging meal support could be implemented or whether it would be useful. This may be a differentiating factor between age cohorts that has not yet been investigated. Another example is the Altered Eating Framework, developed collaboratively with cancer survivors, to support disordered eating in cancer patients. It conceptualises seven core domains for assessment and meal support provision: physical anatomical, physical functional, sensory, behavioural, cognitive, cultural/social and emotional. This framework is an example for engaging in patient co-design to develop a comprehensive approach to meet clinical needs of a specific patient group while the outcome demonstrates potential for broader application. In addition, valuable insights for the development of a standalone meal support intervention could potentially be drawn from learnings and experiences gathered delivering the family meal as part of family therapy.

Suggestions for future research

Most studies were conducted in AN, with only one study in ARFID that did find beneficial results. The differences between these diagnostic groups in terms of their benefit from meal support interventions should be further investigated. Cost effectiveness analyses are also missing from the literature, which may elucidate further evidence to support or rebuke the use of meal support strategies in inpatient settings. We also recommend the development and evaluation of a multidisciplinary and lived experience co-designed framework for a standardised, yet adaptable, manualised approach for meal support interventions.

This systematic review has synthesised the current literature on meal support intervention for eating disorders. Studies have highlighted the benefits of meal support in facilitating recovery, however a number of gaps and opportunities for improvement are noted. The studies examined highlight the need for a framework and manualised approach to meal support intervention.

Data availability

Not applicable.

Abbreviations

Maudsley Family Based Therapy

Family Based Therapy

Multifamily Therapy

Avoidant/restrictive food intake disorder

Mixed-Methods Appraisal Tool

Body Mass Index

Eating Disorder Not Otherwise Specified

Satter E. Secrets of feeding a healthy family: how to eat, how to raise good eaters. How to Cook: Kelcy; 2011.

Google Scholar  

Glanz K, Metcalfe JJ, Folta SC, Brown A, Fiese B. Diet and Health benefits Associated with In-Home eating and sharing meals at home: a systematic review. Int J Environ Res Public Health. 2021;18(4).

Harrison ME, Norris ML, Obeid N, Fu M, Weinstangel H, Sampson M. Systematic review of the effects of family meal frequency on psychosocial outcomes in youth. Can Fam Physician. 2015;61(2):e96–106.

PubMed   PubMed Central   Google Scholar  

Neumark-Sztainer D, Eisenberg ME, Fulkerson JA, Story M, Larson NI. Family meals and disordered eating in adolescents: longitudinal findings from project EAT. Arch Pediatr Adolesc Med. 2008;162(1):17–22.

Article   PubMed   Google Scholar  

Loth K, Wall M, Choi CW, Bucchianeri M, Quick V, Larson N, et al. Family meals and disordered eating in adolescents: are the benefits the same for everyone? Int J Eat Disord. 2015;48(1):100–10.

Russell GF. Anorexia nervosa: its identity as an illness and its treatment. Mod Trends Psychol Med. 1970;2(1):56–62.

Harvey T, Troop NA, Treasure JL, Murphy T. Fear, disgust, and abnormal eating attitudes: a preliminary study. Int J Eat Disord. 2002;32(2):213–8.

Lawson EA, Holsen LM, Santin M, DeSanti R, Meenaghan E, Eddy KT, et al. Postprandial oxytocin secretion is associated with severity of anxiety and depressive symptoms in anorexia nervosa. J Clin Psychiatry. 2013;74(5):e451–7.

Article   PubMed   PubMed Central   Google Scholar  

Tobey JA. The Biology of Human Starvation. Am J Public Health. 1951;41(2):236–7.

Article   Google Scholar  

Long S, Wallis DJ, Leung N, Arcelus J, Meyer C. Mealtimes on eating disorder wards: a two-study investigation. Int J Eat Disord. 2012b;45(2):241–6.

Vanzhula IA, Sala M, Christian C, Hunt RA, Keshishian AC, Wong VZ, et al. Avoidance coping during mealtimes predicts higher eating disorder symptoms. Int J Eat Disord. 2020;53(4):625–30.

Lobera IJ, Estébanez S, Fernández MS, Bautista EA, Garrido O. Coping strategies in eating disorders. Eur Eat Disorders Review: Prof J Eat Disorders Association. 2009;17(3):220–6.

Gowers SG, Edwards VJ, Fleminger S, Massoubre C, Wallin U, Canalda G et al. Treatment aims and philosophy in the treatment of adolescent anorexia nervosa in Europe. 2002;10(4):271–80.

Guarda AS. Treatment of anorexia nervosa: insights and obstacles. Physiol Behav. 2008;94(1):113–20.

Couturier J, Mahmood A. Meal support therapy reduces the use of nasogastric feeding for adolescents hospitalized with anorexia nervosa. Eat Disord. 2009;17(4):327–32.

Psychiatrists RCo. Standards for adult inpatient eating disorder services. In: Improvement RCoPCfQ, editor. London2017.

Hay P, Chinn D, Forbes D, Madden S, Newton R, Sugenor L et al. Clinical practice guidelines for the treatment of eating disorders. In: Psychiatrists RAaNZCo, editor. 2022.

Agras WS, Lock J, Brandt H, Bryson SW, Dodge E, Halmi KA, et al. Comparison of 2 family therapies for adolescent anorexia nervosa: a randomized parallel trial. JAMA Psychiatry. 2014;71(11):1279–86.

Gelin Z, Cook-Darzens S, Simon Y, Hendrick S. Two models of multiple family therapy in the treatment of adolescent anorexia nervosa: a systematic review. Eat Weight Disorders: EWD. 2016;21(1):19–30.

Treasure J. How do families cope when a relative has an eating disorder? The Clinician’s Guide to Collaborative Caring in Eating Disorders. Routledge; 2009. pp. 61–75.

Warren CS, Schafer KJ, Crowley ME, Olivardia R. A qualitative analysis of job burnout in eating disorder treatment providers. Eat Disord. 2012;20(3):175–95.

Thompson-Brenner H, Satir DA, Franko DL, Herzog DB. Clinician reactions to patients with eating disorders: a review of the literature. Psychiatric Serv (Washington DC). 2012;63(1):73–8.

Leichner P, Hall D, Calderon R. Meal support training for friends and families of patients with eating disorders. Eat Disord. 2005;13(4):407–11.

Whitney J, Currin L, Murray J, Treasure J. Family work in anorexia nervosa: a qualitative study of carers’ experiences of two methods of family intervention. Eur Eat Disorders Review: J Eat Disorders Association. 2012;20(2):132–41.

Kosmerly S, Waller G, Lafrance Robinson A. Clinician adherence to guidelines in the delivery of family-based therapy for eating disorders. Int J Eat Disord. 2015;48(2):223–9.

Couturier J, Kimber M, Jack S, Niccols A, Van Blyderveen S, McVey G. Understanding the uptake of family-based treatment for adolescents with anorexia nervosa: therapist perspectives. Int J Eat Disord. 2013;46(2):177–88.

Cook-Darzens S. The role of family meals in the treatment of eating disorders: a scoping review of the literature and implications. Eat Weight Disord. 2016;21(3):383–93.

Hughes EK, Le Grange D, Court A, Yeo MS, Campbell S, Allan E, et al. Parent-focused treatment for adolescent anorexia nervosa: a study protocol of a randomised controlled trial. BMC Psychiatry. 2014;14:105.

Månsson J, Parling T, Swenne I. Favorable effects of clearly defined interventions by parents at the start of treatment of adolescents with restrictive eating disorders. Int J Eat Disord. 2016;49(1):92–7.

Sepulveda AR, Lopez C, Todd G, Whitaker W, Treasure J. An examination of the impact of the Maudsley eating disorder collaborative care skills workshops on the well being of carers: a pilot study. Soc Psychiatry Psychiatr Epidemiol. 2008;43(7):584–91.

Gardner L, Trueman H. Improving mealtimes for patients and staff within an eating disorder unit: understanding of the problem and first intervention during the pandemic-an initial report. BMJ Open Qual. 2021;10(2).

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71.

Pluye P, Hong QN. Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews. Annu Rev Public Health. 2014;35:29–45.

Taylor T, Blampied N, Roglić N. Controlled case series demonstrates how parents can be trained to treat paediatric feeding disorders at home. Acta Paediatr. 2021;110(1):149–57.

Kells M, Davidson K, Hitchko L, O’Neil K, Schubert-Bob P, McCabe M. Examining supervised meals in patients with restrictive eating disorders. Appl Nurs Res. 2013;26(2):76–9.

Kells M, Schubert-Bob P, Nagle K, Hitchko L, O’Neil K, Forbes P, et al. Meal supervision during medical hospitalization for eating disorders. Clin Nurs Res. 2017;26(4):525–37.

Beukers L, Berends T, de Man-van Ginkel JM, van Elburg AA, van Meijel B. Restoring normal eating behaviour in adolescents with anorexia nervosa: a video analysis of nursing interventions. Int J Ment Health Nurs. 2015;24(6):519–26.

Hage TW, Rø Ø, Moen A. Time’s up– staff’s management of mealtimes on inpatient eating disorder units. J Eat Disorders. 2015;3(1):13.

Watt J, Dickens GL. Community-based mealtime management for adolescents with anorexia nervosa: a qualitative study of clinicians’ perspectives and experiences. J Child Adolesc Psychiatr Nurs. 2018;31(1):30–8.

Long S, Wallis D, Leung N, Meyer C. All eyes are on you: anorexia nervosa patient perspectives of in-patient mealtimes. J Health Psychol. 2012a;17(3):419–28.

Cairns JC, Styles LD, Leichner P. Evaluation of meal support training for parents and caregivers using a video and a manual. J Can Acad Child Adolesc Psychiatry. 2007;16(4):164–6.

Hay P, Chinn D, Forbes D, Madden S, Newton R, Sugenor L, et al. Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders. Australian New Z J Psychiatry. 2014;48(11):977–1008.

Leadley S, Taylor T. The distance between empirically-supported treatment and actual practice for paediatric feeding problems: an international clinical perspective. 2021:0–00.

White HJ, Haycraft E, Madden S, Rhodes P, Miskovic-Wheatley J, Wallis A, et al. How do parents of adolescent patients with anorexia nervosa interact with their child at mealtimes? A study of parental strategies used in the family meal session of family‐based treatment. Int J Eat Disord. 2015;48(1):72–80.

Macdonald P, Rhind C, Hibbs R, Goddard E, Raenker S, Todd G, et al. Carers’ assessment, skills and information sharing (CASIS) trial: a qualitative study of the experiential perspective of caregivers and patients. Eur Eat Disorders Rev. 2014;22(6):430–8.

Driessen A, Ibáñez Martín R. Attending to difference: enacting individuals in food provision for residents with dementia. 2020;42(2):247–61.

Liu W, Tripp-Reimer T, Williams K, Shaw C. Facilitators and barriers to optimizing eating performance among cognitively impaired older adults: a qualitative study of nursing assistants’ perspectives. Dement (London England). 2020;19(6):2090–113.

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The study was conceptualised by SW and TM. Study methodology was designed by TM, GB, and SW. Literature searches and screening was conducted by CH, GD, KG, and LM. Formal analysis was performed by GB, CH, and KG. Supervision and resources were provided by GB, SW, and TM. The findings were validated by AE and SW. The original draft manuscript was completed by CH, GB, SW, and AE. Review and editing of the final manuscript was conducted by TM, GD, SW, GB, KG, and LM. All authors read and approved the final manuscript.

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Ellis, A., Gillespie, K., McCosker, L. et al. Meal support intervention for eating disorders: a mixed-methods systematic review. J Eat Disord 12 , 47 (2024). https://doi.org/10.1186/s40337-024-01002-2

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Anorexia nervosa: a case study

• PMID: 1052188
• DOI: 10.1159/000286995

D.R., a single 19-year-old female experiencing anorexia nervosa, was admitted to a mental health center inpatient unit weighing 64 lb, approximately 54 lb underweight, with liver, kidney, and pancreas damage. D.R. was hospitalized for 59 days. Treatment consisted of utilizing a hierarchy of reinforcements in the form of privileges mutually agreed upon between patient and therapist, psychodynamic and supportive psychotherapy, and involvement in the ward milieu therapeutic program. All privileges had to be earned. Access to food was controlled by the staff. For pounds gained privileges were granted, for pounds lost privileges were curtailed. Dynamically, D.R.'s eating behavior was viewed as an unconscious spite and revenge reaction toward her parents as well as an attempt to elicit attention. At the time of discharge D.R. weighed 104.5 lb. Prior to discharge D.R. agreed that if her weight dropped below 100 lb she would return for readmission. Five months later D.R.'s weight stabilized between 102 and 104 lb. Two years later, D.R.'s weight remains at that level. The study cautions against using solely a behavior modification approach in the treatment of anorexia nervosa.

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Care experiences of young people with eating disorders and their parents: qualitative study

Oana mitrofan.

Academic Clinical Lecturer in Child and Adolescent Psychiatry, University of Exeter College of Medicine and Health, University of Exeter, UK

Hristina Petkova

Health Economist, King's Health Economics, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK

Astrid Janssens

Senior Research Fellow, University of Exeter College of Medicine and Health, University of Exeter, UK

Jonathan Kelly

Policy Officer, Beat, UK

Eve Edwards

Research Officer, Beat, UK

Dasha Nicholls

Reader in Child Psychiatry, Imperial College London, UK

Fiona McNicholas

Professor of Child and Adolescent Psychiatry, School of Medicine, University College Dublin, Ireland

Consultant Child and Adolescent Psychiatrist, Child and Adolescent Eating Disorders Service, South London and Maudsley NHS Trust, UK

Ivan Eisler

Professor of Family Psychology and Family Therapy, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK

Tamsin Ford

Professor of Child and Adolescent Psychiatry, University of Exeter College of Medicine and Health, University of Exeter, UK

Sarah Byford

Professor of Health Economics, King's Health Economics, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK

Associated Data

For supplementary material accompanying this paper visit http://dx.doi.org/10.1192/bjo.2018.78.

Perspectives of young people with eating disorders and their parents on helpful aspects of care should be incorporated into evidence-based practice and service design, but data are limited.

To explore patient and parent perspectives on positive and negative aspects of care for young people with eating disorders.

Six online focus groups with 19 young people aged 16–25 years with existing or past eating disorders and 11 parents.

Thematic analysis identified three key themes: the need to (a) shift from a weight-focused to a more holistic, individualised and consistent care approach, with a better balance in targeting psychological and physical problems from an early stage; (b) improve professionals' knowledge and attitude towards patients and their families at all levels of care from primary to ‘truly specialist’; (c) enhance peer and family support.

Conclusions

Young people and parents identified an array of limitations in approaches to care for young people with eating disorders and raised the need for change, particularly a move away from a primarily weight-focused treatment and a stronger emphasis on psychological needs and individualised care.

Declaration of interest

Eating disorders are serious conditions of increasing prevalence among young people. 1 In the UK, out-patient treatment 2 was historically delivered in generic child and adolescent mental health services (CAMHS) or highly specialised eating disorder services, with significant regional variation in provision. 3 Although there is growing evidence about the efficacy of particular treatments, 2 our knowledge about the impact of different clinical settings on treatment outcomes is limited. Studies suggested that specialist service provision may lead to better case identification, greater consistency of care and be more cost-effective, 4 – 7 but the data are limited. In England, there has been recent investment in specialist community eating disorder services for young people in all regions, 8 the impact of which is unknown. These developments are contemporaneous with increasing emphasis on patient-led recovery approaches to eating disorders as well as patient and carer participation in service design, for which data on patient and carer perspectives are important.

Qualitative research can facilitate a better understanding of what patients perceive as optimum care. 9 In the field of eating disorders such understanding mostly comes from qualitative studies in adults, with research on adolescents' perspectives of treatment and recovery more recently emerging. Previously identified themes highlighted the role of family, peers and professionals, family therapy, the in-patient setting, emphasis on physical versus psychological aspects and conceptualisation of recovery among adolescents with anorexia nervosa. 10 Most previous qualitative research has focused on anorexia nervosa rather than broader eating disorder diagnoses. 11 However, current service provision does not typically provide distinctive care pathways or services for different types of eating disorders. Research also focused on experiences of specific treatment settings, particularly in-patient care and parallel exploration of young people's and parents' perspectives is limited. Greater satisfaction with treatment and more positive experiences of family therapy have been reported by parents compared with adolescents with anorexia nervosa. 12 Our study aimed to explore young people's and parents' experiences of care for eating disorders, both positive and negative, across various treatment settings and the ways care could be improved by using thematic analysis. We hypothesised that, despite the ego-syntonic features often encountered in eating disorders, young people want good care towards recovery, and their views would be similar to those of parents on what constitutes good healthcare.

Participants

A purposive, non-probability sampling method was used to identify individuals who were likely to have experience of a range of different eating disorder service provisions. Young people aged 16–25 years who had an ongoing or past eating disorder and had contact with healthcare services in relation to their eating disorder, and parents of young people in the same situation, were recruited through Beat using an online advertisement. Beat is the UK national eating disorder charity, which has supported extensive research in this field by facilitating recruitment ( http://www.beateatingdisorders.org.uk ). Attention was drawn to the advertisement via Beat's email database and its Facebook and Twitter profiles. Responders to the study advertisement were provided with further information about the study via email. Recruitment continued until saturation of themes was reached (i.e. the point at which no new ideas emerge from additional data collection). 13 All participants gave written consent to take part via email. Ethical approval was granted by the University of Exeter Medical School Research Ethics Committee (REC REF Apr15/B/062).

Data collection

Participants completed a baseline questionnaire covering demographic information, details of healthcare services used in relation to their eating disorder, or, in the case of parent participants, those of their child's eating disorder. Focus groups for young people and parents were facilitated separately. In order to provide a balance of experience of different service provision in each group (out-patient and in-patient, generic and specialist, child and adult services), we drew on the baseline questionnaire data on type of healthcare services they had used for eating disorders to allocate participants, as much as possible, given the response rate and participant availability. Each of the four online focus groups with young people included a mixture of younger and older participants (i.e. below and above the mean age for the sample), also of mixed diagnosis and treatment status (except for one group where by chance all participants had anorexia nervosa and were no longer receiving treatment). Each parental group included a participating father; one group included parents of a child with anorexia nervosa and mixed treatment status, and the second group included parents reporting more than one diagnostic category and whose children were no longer in treatment for their eating disorders.

Each focus group was convened as a synchronous ‘chatroom’ for a maximum of seven individuals in the Chat Blazer software ( www.chatblazer.com ). Each participant was provided with a unique, non-identifying username and password. Participants had no access to others' personal information except for their chosen usernames. Each group was run by an experienced Beat moderator and a group facilitator from the research team. The facilitator led the group by introducing the topics of the semi-structured guide, which included open questions and prompts. The topics were identified through a review of the existing literature. 10 , 14 , 15 and from the authors' clinical experience and covered the following areas: overall experience of services including accessibility, flexibility, medical assistance, professional encounters, key professional qualities/skills, individual and family support and important treatments; helpful aspects of care; unhelpful aspects of care, potential changes to these and desired impact of change; views on specialist services versus generic CAMHS; views on community versus in-patient services; views on age division within services and experience of adult services; and suggestions for service improvement (see Supplementary Material, available at https://doi.org/10.1192/bjo.2018.78 ).

The moderator was responsible for setting the ‘ground rules’, monitoring for any sensitive issues and rejecting any unsuitable comments prior to them being shared. Each participant typed their answers, which, after being approved by the moderator, were displayed on screen for others to read and respond to. Each group had a chat supervisor (member of the research team) who provided support to distressed participants through private online communication (separate closed chatroom). This included the recommendation to contact a healthcare professional such as their general practitioner (GP) (the research team did not have participants' consent to make contact directly on their behalf) and signposting to other support services (only one participant required this). Each group lasted between 60 and 90 min. All participants were invited to comment on the transcript of the group they participated in and on a summary of findings.

Data analysis

Focus group transcripts were generated automatically by participants' typed responses (mean word count 6043, s.d. = 1351.8, range 3587–7258 words). All transcripts were analysed in NVivo software ( http://www.qsrinternational.com/nvivo/nvivo-products ) using thematic analysis. 16 This involved a detailed reading and re-reading of the transcripts, identifying and labelling codes in each transcript, arranging the codes into themes and summarising the themes. This process was carried out iteratively with the team of researchers moving back and forth between transcripts and emerging themes. In order to address potential preconceptions of the main rater, three transcripts of two groups with young people and one with parents were independently coded and extracted themes were subsequently compared and discussed until full agreement on final themes was reached.

Characteristics of the young people who participated in the study are described in Table 1 . A total of 19 females aged 16–25 years (mean age 20.7, s.d. = 3.3) took part in four online focus groups. Only one participant was from an ethnic minority. Nearly two-thirds had or were recovering from anorexia nervosa and the remainder had or were recovering from bulimia nervosa, ‘other/atypical eating disorders’ or a combination of these. Mean illness duration was 6 years (s.d. = 3.6, range 15 months to 13 years).

Information about the young people who participated

CAMHS, child and adolescent mental health services; AMHS, adult mental health services; CYP-EDS, child and adolescent (specialist) eating disorder services; AEDS, adult (specialist) eating disorder services; CBT, cognitive–behavioural therapy.

Eleven parents took part in two online focus groups. Most were mothers ( n  = 9), none were from an ethnic minority and the majority had a daughter ( n  = 9) rather than a son ( n  = 2) with an eating disorder, mostly anorexia nervosa. One participant reported a combination of anorexia nervosa and binge-eating disorder ( Table 2 ). Mean age of their child at the point of diagnosis was 14.7 years (s.d. = 2.1, range 11–17). Mean duration of their child's illness was 5 years (s.d. = 4.1, range 12 months to 15 years). As a result of the anonymity assured by our protocol, we were not able to establish the overlap between the young people and parent samples (although three participants disclosed this).

Information about the parents who participated

CAMHS, Child and Adolescent Mental Health Services; CYP-EDS, Child and Adolescent (Specialist) Eating Disorder Services; AEDS, Adult (Specialist) Eating Disorder Services; AMHS, Adult Mental Health Services.

Most young people had used a mixture of healthcare services. Use of private healthcare was scarce (young people 16%, n  = 3; parents 18%, n  = 2). For both samples, nearly two-thirds of young people were no longer in treatment (young people 63%, n  = 12; parents 64%, n  = 7).

Three main themes emerged from participating young people's and parents' accounts of their experiences of care. Each main theme and its subthemes are discussed in turn and illustrated by participants' first-hand quotations. The source of each quotation is indicated by the participant's study ID number (YP ,young person; PA, parent). Three secondary themes and supporting quotes are presented in Table 3 .

Secondary themes

A&E, accident and emergency department; CAMHS, child and adolescent mental health services; GP, general practitioner.

Early, holistic, individualised and consistent care

All participants' accounts (young people and parents) suggest an imbalance between physical and psychological aspects of care. Most participants described good experiences of the care addressing physical health needs, but reported that there was too much focus on patient's weight while neglecting psychological aspects and more personalised, life-long skills.

Early intervention

Participants viewed referral to services and admission for treatment as largely dictated by the patient's weight, setting a threshold that appeared to promote weight loss as a means of accessing support. Delaying intervention as the patient was ‘not ill enough’ was seen as likely to hinder recovery, as opposed to early consideration of relevant emotional and behavioural symptoms:

‘…specialist services are simply brought in too late. They're supposed to catch you, but often you have to fall quite a way to get there.’ (YP9)

‘One of the main challenges is getting help early enough. There is too much attention paid to weight loss and not enough to the behaviour patterns and so they are dangerously low in weight before you get referred…It is the strange behaviour around food and rituals that indicate a problem. They may not be dangerously low in weight at this stage but far more retrievable.’ (PA9)

‘Seeing the whole person’

Most participants experienced professional help as being targeted towards reaching a ‘minimum healthy weight’ with limited psychological input. This often led to deterioration and relapse as their underlying difficulties of how to ‘deal with emotion and lack of control’ persisted. They advocated a holistic approach aiming towards ‘recovery in body and mind’:

‘I recovered physically and got back to a healthy weight, but then with that recovery comes a huge psychological struggle and thus high risk of relapse, which certainly wasn't addressed at the time…’ (YP3)

‘Really what you need is someone who sees the whole person – the link between the medical and psychological condition and treats both together.’ (PA1)

Many young people described upsetting sessions that revolved around ‘the number on the scale’ and frequent weighing ‘like a pig at the fair’, while their thoughts and emotions were ‘brushed off’. One recalled:

‘…I was feeling really positive about my recovery after reading a book about someone who had recovered and “seeing the light” a bit but when I arrived at my session, stepped on the scales and had lost weight the whole session turned to be about food. I never even got to mention the book and how it made me feel.’ (YP6)

The interplay between a weight-driven approach to treatment and the ‘competitive nature’ of eating disorders could create a vicious cycle. One participant felt she was ‘taken more seriously’ the lower her weight was, which ‘fed the illness itself’ as her eating disorder would see this as being ‘successful’. Another felt she needed to make herself worse to ensure support:

‘I spoke to my psychiatrist once I got to a healthy weight and she said there isn't much they can do if I'm not ill which really upset me…Just focus more on the emotional side…I still don't really know how to get better. I wish she hadn't said there was nothing she could do because I wasn't ill physically because that makes you think you need to make yourself ill to get help which shouldn't be the case!’ (YP14)

Young people talked about the complex nature of their condition that ‘consumes every single aspect’ of their lives. They felt that treatment should address ‘how to live long term’ and ways of ‘keeping the eating disorder at bay’:

‘…anorexics think about their condition every second of the day…even in my dreams I still have the condition…Recovery shouldn't be just meal times and weight focused.’ (YP12)

Some parents highlighted the absence of the recovery topic in professional contacts and their struggles to find ‘actual evidence that people could recover’. For others, the recovery message was conveyed in unhelpful ways:

‘Our initial treatment didn't promise “recovery” but…they did…stress that full recovery was possible…It just seemed that they sort of blamed the parents before 18 and the patient after 18 if that didn't happen!’ (PA10)

Individualised approach

Many participants experienced a ‘one size fits all’ approach, where professionals were ‘treating the condition not the person’ and evidence-based interventions were applied with ‘little understanding of individuals recovering differently’. They recommended a more personalised approach that would help them find their ‘own positive reasons to recover’:

‘I disagree with the homogeneity of treatment methods. Where I am at the moment, they are very good at tailoring recovery to the individuals' needs…my therapist…has a way of putting my recovery in my hands.’ (YP1)

Consistency and continuity

Several participants experienced frequent, disruptive changes in professionals and ‘re-telling the same story’ at each new clinical encounter:

‘…building up relationships with individual counsellors, etc. takes time, and having to cut and change as the services chop and change has been quite unsettling.’ (YP17)

A key issue was the gap in treatment provision when young people made the transition from child and adolescent to adult services, which often triggered clinical deterioration:

‘CAMHS gave up on me when I was about 17 and 2 months and I couldn't start adult treatment until 18 – that gap was when I made the biggest decline.’ (YP6)

This transition takes place ‘right in the middle of the struggle years’ and the disconnection between services was described as an ‘artificial divide’. Suggested alternatives were changing the age boundary to 25 years, a flexible approach ‘dictated by needs rather than age’ or an ‘integrated 8–80 specialist eating disorder team’.

Knowledge of eating disorders at all levels of care

A salient issue in both young people' and parents' accounts concerned the insufficient knowledge of the nature and clinical management of eating disorders among various professionals working across all levels of care.

Knowledge at primary care level

Primary care practitioners have a gatekeeping role, crucial for early identification and referral. Although willing to help, they often lacked knowledge in the identification of eating disorders and when and where to refer:

‘The general opinion of the GP when I first visited was to go away for a month and come back if there was still a problem. For an eating disorder, I think this is very poor considering how much weight you can lose in a month…’ (YP17)

‘If I were to express any misgivings, it will be about the time it took to get a referral from her GP to CAMHS…there is a huge variety of awareness on eating disorders among GPs, some of the responses given to my daughter were appalling and wouldn't even have registered with the Ladybird book on eating disorders.’ (PA8)

‘True’ specialist services

Many participants experienced ‘an extreme lack of experience and knowledge in eating disorders’ among various professionals working in general hospitals, emergency services, generic mental health and more specialist eating disorder services:

‘…the NHS mental health service I was with had seemed to take people who had jobs as counsellors, physios, dieticians…they thought that they would be helpful but because they are not specialists it made it ten times worse.’ (YP5)

‘…you get referred for “more specialist” advice to someone who knows a LOT less about the subject than the nurses doing the referring.’ (PA10)

Professionals who ‘know their stuff about eating disorders’ and have ‘real hands-on experience of eating disorders’ were ‘invaluable’. These skills were not necessarily linked to service type: specialist eating disorder services were seen as beneficial as long as they were ‘truly specialist not just in name only’:

‘We reacted best to people who had experience of eating disorders, who calmly said yes, we will help you get out of this.’ (PA4)

Professionals' knowledge appears key in avoiding inconsistent or incorrect information being given to families. Several participants recalled feeling ‘bewildered’ and having to make ‘the first move in every direction’. Many participants highlighted the need for early psychoeducation including clear information about standard and crisis care:

‘I think giving families information around the causes of eating disorders and also how to act/miss a crisis. How to talk about things and strategies to plan for stressful times.’ (YP16)

‘There is no clear route to treatment in the early weeks. CAMHS was unable/unwilling to lay out the possible treatment pathways, so every family would start the long education process right from scratch.’ (PA4)

Professionals’ attitude

Many participants described professionals who were ‘far too judgemental’ and made ‘devaluing’ comments, that hindered help-seeking and therapeutic engagement. They sometimes felt openly criticised for ‘misbehaving’, ‘making a fuss’ and ‘choosing a career’ of having an eating disorder. Parents felt blamed for their child's condition and their ‘inappropriate use of resources’ when seeking help:

‘… personal treatment can make a big impact…Even just sort of a helping hand to doctors to sometimes be a bit more sensitive with the stuff they say, for instance comments regarding “superficial self-harm” or that a weight loss/weight gain isn't “serious” just ways of phrasing stuff that can be quite triggering.’ (YP18)

‘I do think that many clinicians (not necessarily eating disorder specialists, we haven't had this from them) genuinely believe that parents cause eating disorders.’ (PA10)

Professionals' attitude was linked to their misunderstanding of eating disorders, inexperience, focus on patient's weight and tendency to compare the patient to others with a similar condition or to healthy individuals:

‘…when eating snacks my psychiatrist would talk non-stop about the calories and how she was eating more than me and had already finished hers…not helpful!’ (YP9)

Peer and family support

Talking to someone with a similar experience seemed vital as it gave participants a better understanding of eating disorders, motivation and hope:

‘I did like all the people that were trying to help me, they did their best. I just didn't feel like they ever completely got me. In fact the people who did make me feel that way were often people that had experienced an eating disorder as well.’ (YP2)

‘A lot of support has come from recovered anorexics telling her the struggle to recover is worth it and to keep going. They have helped her through some of her blackest days.’ (PA9)

Peer support was often unavailable locally, contributing to a sense of isolation:

‘It's funny they tell you about the amount of people suffering with it but I didn't know anyone.’ (YP13)

Parents described a similar need for talking to others with related experience:

‘I couldn't have got through without being able to discuss the worst aspects with another mum who'd been through it. Some things you can only talk about with others who've experienced it.’ (PA1)

Many participants highlighted the need for young people and parent support groups and respite care. Support for family members would relieve some of the burden so that ‘in turn they can support the patient’:

‘I think allowing my family to breathe and have a break away from me, maybe a chance to meet others supporting patients would have been helpful…Especially for my brothers.’ (YP17) ‘We had no family support…The professionals only offer care for a short time. Remember the families support the sufferer the rest of the week. Also it impacts on the whole family.’ (PA9)

Participants' experiences of type, availability and quality of care were mixed. Positive experiences often concerned care addressing physical health needs, alongside sporadic reports of treatment tailored to individual needs, consistency from keyworkers, a good therapeutic relationship, contact with eating disorder specialists and peer support. Common negative experiences, however, suggest a raft of limitations with service provision and the need for change. It is clear that some participants were not offered or accessing an evidence-based psychological intervention. Identification and clinical management appeared dominated by a young person's weight, linked in some cases to professionals' understanding of eating disorders and service thresholds for referral and treatment. Clinical practice thus seemed to contradict the advice some professionals gave to participating young people to stop thinking about diet and weight.

Participating young people and parents' negative experiences are consistent with the findings of an cross-national (USA, UK) survey in adults with eating disorders highlighting the limited availability and inequity in geographical distribution of services, lack of knowledge of eating disorders among GPs, limited access to care unless severely underweight and long waiting lists in the UK sample. 14 Qualitative exploration among adult patients portrays recovery from eating disorders as a wider phenomenon that goes beyond weight restoration. 17 Suggested strategies to address control issues and ambivalence towards treatment in adult patients include consideration of wider psychological issues and a sensitive approach, linked to specialist expertise. 18 Similarly, issues around priority given to physical over psychological recovery, lack of individualised care and need for sensitivity from healthcare staff were noted in a number of qualitative studies of adolescents' experiences of in-patient treatment (as well as out-patient treatment in one study) for anorexia nervosa. 19 – 24 Both a positive and a negative impact of peers on adolescents' recovery from anorexia nervosa in an in-patient context has been described. 12 , 19 , 20 , 24 , 25 It is worth noting that almost all of these studies were published more than 10 years ago. Qualitative explorations of parents' experiences of their child's care for eating disorder, also dating back 10 years or more for most studies, highlighted the importance of personalised intervention 26 and specialist knowledge in eating disorders. 12 , 27 Peer support for parents has been supported in the literature, sometimes reported as one of the most helpful aspect of care. 27 , 28

The main contributions of our study stem from bringing together the combined experiences of young people and parents of treatment in multiple services, and the emerging emphasis on psychological aspects of eating disorders from very early stages and having appropriately trained professionals working across a wide range of services rather than a single specialist service. Qualitative investigations into the meaning of anorexia nervosa to adolescent and adult patients support psychodynamic and cognitive theories of its connection with the development of individuals' own identity and control systems, with a subsequent impact on their help-seeking behaviour and treatment outcome. 29

Furthermore, a recent qualitative synthesis into the perspective of recovered adult patients suggested four dimensions of psychological well-being – positive relationships with others, self-acceptance, autonomy and personal growth – and self-adaptability/resilience as fundamental criteria for eating disorder recovery in addition to symptom remission. 30 In a study using a multidimensional recovery model, adults with eating disorders placed more emphasis on the combined psychological, emotional and social functioning and evaluation of one's own appearance criteria compared with clinicians. 31 In line with these findings from the adult literature, our study highlights two important aspects in addressing the psychological well-being criteria for recovery and the development of a ‘healthy’ identity in young people with eating disorders, according to both patients and parents: an earlier consideration of psychological aspects of these conditions that should start at identification in primary care and referral to specialist treatment, as well as enhanced professionals' knowledge of eating disorders and attitude towards patients and families across all levels of care.

Eating disorder services for children and adolescents in England have received a significant investment, and are undergoing major restructuring, 8 which should address many of these concerns, in particular timely access to psychological interventions independent of weight status. Our findings support the importance of these changes to improve the quality of patient and parent experience, regardless of the cost-effectiveness arguments. However, these standards are not yet applicable to adult eating disorder services, which remain patchy and underresourced. Eating disorder services in Wales are currently subject to a major review for which this study provides timely evidence.

Gaps in health professionals' ability to recognise and treat eating disorders and the negative attitude that some express towards individuals with eating disorders have been previously highlighted as more prevalent compared with other mental or physical illnesses. 32 , 33 Our findings are in line with a recently published report highlighting the poor experience of mental health services often encountered by children and young people in the UK. 34 Others have reported short comings in service provision and suggested strategies for a more consistent and smooth transition to adult mental health services, tailored to the young person's needs and taking into account other simultaneous life changes. 35 , 36

Strengths and limitations

This study recruited a national sample of young people and parents not bound by setting or treatment group. It used synchronous online discussion (i.e. all focus group members temporally co-present) that has recognised similarity to a traditional, face-to-face focus group, 37 but has the advantage of providing an anonymous online environment. This has previously been identified as preferable by young people when discussing sensitive topics because of its private and less judgemental nature. 38 The young people's age range ensured access to experiences of both child/adolescent and adult services as well as the transition.

The gender imbalance and preponderance of anorexia nervosa are a likely effect of the means of recruitment and self-reported diagnosis, although it is consistent with anorexia nervosa being the dominant presentation of eating disorders to CAMHS services. The recruitment and data collection methods limited participation to consenting older young people and also meant that individuals with easier access to and familiarity with internet use were more likely to participate. Findings may therefore not pertain to all young people with eating disorders and their carers, particularly younger children, males and those from ethnic minorities, and may not generalise to non-UK healthcare settings. Methodological issues around gender and ethnicity imbalance in this field have been previously reported. 19 , 20 , 23

Our recruitment may have skewed the perspective towards negative experiences. Most participating young people were over 18 years of age at the time of the study, had relatively long illness durations and experienced treatment in multiple services, often in-patient or day services, with likely poor initial response to treatment. More than half of them were no longer receiving treatment at the time of the study. Although potentially allowing for more reflective accounts, our sample characteristics may explain the differences between our findings and those of Roots et al , 12 which were more positive, particularly regarding specialist services. Their study included adolescents with an average duration of illness of just over 1 year, thus perhaps better representing the patient population in child/adolescent services with relatively short illness duration, good response to out-patient treatment and no need of in-patient care or transfer to adult services. The two studies thus provide different, complementary perspectives on treatment experiences and suggest the likelihood of more positive experiences if receiving early, specialist intervention. Our findings do echo other similar studies and, rather than the experiences of a dissatisfied minority, they replicate and add to the existing evidence of shortcomings and needed changes in care provision for young people with eating disorders.

Implications

There was a strong consensus that treatment should not just focus on weight but also address psychological and relational aspects from an early stage. An individualised treatment approach that addresses physical and psychological recovery in parallel, from an individual's first contact with health services throughout their therapeutic journey, is more likely to lead to full recovery and minimise the risk of relapse. Carefully planned peer support for young people, as well as support for parents and siblings would be highly beneficial. Although such changes in care provision may be challenging for many overstretched services, they seem essential in the long term by preventing delayed intervention and longer illness duration, both well recognised predictors of poor clinical outcome. 39

The role of professionals' knowledge of eating disorders and treatment pathways was perceived as crucial at all levels of care, from primary to ‘truly specialist’. Specialty training, such as general practice and core psychiatry training should provide more opportunities to enhance eating disorder knowledge and understanding of patient and family experience of eating disorders among junior doctors. This should particularly target misconceptions around weight loss as a sole or primary factor in the referral and treatment process.

Improving professionals' knowledge at all levels is clearly key to achieving early diagnosis and intervention, 40 but equally important is to ensure that treatments have a better balance between the necessary focus on restoring nutrition and physical health and psychological well-being. In England, this has been extensively highlighted in the literature and recently brought forward by the new commissioning guidance for children and young people with eating disorders 8 and advocacy efforts to increase awareness among GPs of the clinical, particularly psychological, indicators of eating disorders and importance of early referral for specialist assessment. However, these efforts will only be effective where specialist services exist and have the capacity to respond. Further research is needed to assess the potential positive impact of these initiatives. The historical nature of retrospective accounts means that some of the issues raised here may have already been addressed in national guidance and service provision. Nonetheless, qualitative data supporting these changes adds impetus to these priorities.

Acknowledgements

We would like to thank all participating young people and parents, Beat, Adrienne Rennie, Amanda Woodrow, Caroline Kalorkoti (Beat Ambassadors), Leoni Randall, Susan Howson and Barbara Barrett who assisted with data collection and manuscript preparation. Work was carried out at the University of Exeter Medical School.

O.M. was supported by a NIHR Academic Clinical Lectureship.

Supplementary material