outline for eating disorder research paper

Eating Disorders Research Paper

This sample eating disorders research paper features: 4600 words (approx. 15 pages), an outline, and a bibliography with 8 sources. Browse other research paper examples for more inspiration. If you need a thorough research paper written according to all the academic standards, you can always turn to our experienced writers for help. This is how your paper can get an A! Feel free to contact our writing service for professional assistance. We offer high-quality assignments for reasonable rates.

Academic Writing, Editing, Proofreading, And Problem Solving Services

Get 10% off with 24start discount code.

I. Overview of Eating Disorder Terms

II. Continuum of Health Related to Eating Disorders

III. Diagnostic Criteria

A. anorexia nervosa, b. bulimia nervosa, c. eating disorders not otherwise specified.

IV. Epidemiology

V. Psychological and Social Impairment

VI. Medical Complications

Vii. detection and assessment, viii. treatment, a. psychotherapy, b. medication, c. nutritional counseling, d. hospitalization.

IX. Prevention

I. Overview of Eating Disorder Terms

The word “nervosa” indicates that each of these conditions is a “nervous disorder.” Psychological difficulties are likely to be involved in the development of these disorders, and also are likely to be exacerbated by the eating-disordered behavior. “Anorexia” means “lack of appetite.” The hallmark feature of anorexia nervosa (AN) is failure to maintain a minimally normal body weight. The meaning of the term “bulimia” is “ox hunger,” or “hungry as an ox.” Bulimia nervosa (BN) is characterized by recurrent episodes of binge eating (i.e., eating large amounts of food accompanied by a sense of loss of control) and compensatory behaviors (e.g., purging, fasting, or excessive exercise). Overlap between the symptoms of these disorders occurs in some individuals. Furthermore, individuals may engage in disturbed eating behaviors and/or indicate intense body image disparagement, but not meet full criteria for anorexia nervosa or bulimia nervosa. Detailed information about diagnostic criteria are provided later in this research paper. It is important to note that eating-related behaviors may be best conceptualized as existing along a continuum ranging from “healthy” to “unhealthy” eating-related behaviors and body image.

II. Continuum of Health Related to Eating Disorders

The pursuit of and preoccupation with beauty represent a central feature of the female sex-role stereotype. Therefore, it is possible that attractiveness, and specifically body image, have a greater influence on self-concept for women than for men. Although standards of beauty have varied widely across time and cultures, the mass media have contributed to the development of a more uniform standard of beauty.

Unfortunately, the current images of women that are portrayed in the media often represent unrealistic weights and shapes for most women. In a classic study, Garner and colleagues demonstrated a consistent decrease in body weights and measurements of two (albeit arguable) standards of beauty (e.g., Miss America pageant winners, and Playboy centerfolds) over two decades (1950s to 1970s). Fashion models are now 23 % thinner than average women, compared to 8% thinner than average woman three decades ago. Indeed, models who depict the in-vogue “waif” look are likely to have a body weight consistent with criteria for anorexia nervosa.

Given the preponderance of images of thinness as the ideal for beauty that are depicted in the media, it is not surprising that many females would perceive their bodies as inadequate. Because women naturally have more body fat than men, even those who are of normal body weight may judge themselves as overweight. In a recent national survey, over 40% of females reported having a negative body image. Although almost one half of young girls reported wanting to lose weight in one survey, only 4% actually were found to be overweight. Women are far more likely to rate their ideal figure to be significantly thinner than actual size than are men.

Therefore, perceptions that one is overweight may be potentially more distressing for women and may lead to attempts to control body weight and shape through methods such as dieting. Female college students report dieting at much higher rates than their male counterparts. In a recent large-scale national survey data from the Centers for Disease Control and Prevention, containing a sample of over 60,000 adults, 38% of female and 24% of male adults reported to be trying to lose weight, and 44% of females versus 15 % of males in high school sample of over 11,000 students reported to be trying to lose weight.

The high prevalence rates of negative body image attitudes and dietary behaviors found among females has been referred to as “normative discontent.” Therefore, although not necessarily “healthy,” it may in fact be “normal” for women in Western cultures to hold disparaging views toward their bodies and to engage in activities aimed at modifying their weight and shape. However, body image disparagement and dieting behaviors may pose as risk factors for the development of an eating disorder. Initial degree of body image dissatisfaction has been found to predict increased eating disturbance in longitudinal studies of adolescent girls and to predict eating disordered behavior in adults. Similarly, the interaction between body image and other risk factors (e.g., pressure for thinness) increased probability of reporting eating disturbance in female athletes. In a study of adult ballet students, body dissatisfaction and dietary restriction were found to predict eating-disordered symptoms.

Therefore, individuals who derive self-esteem primarily or exclusively based on the perception of body image may be at increased risk for development of an eating disorder. It has been argued that individuals who develop eating disorders unquestionably accept and internalize societal messages about thinness as the ideal for female attractiveness. Excessive dietary restraint, often used as a means to modify body weight and shape in an attempt to more closely correspond to a thin ideal of beauty, has been posited to increase the potential for development of binge eating. Secondary symptoms of semi-starvation resulting from prolonged dietary restriction or fasting, such as increases in preoccupation with food, urges to binge eat, and depressed mood, may lead to further exacerbation of body image disparagement and disturbed eating. Although body image concerns and dieting practices are commonplace for many women, when body image disparagement and eating disturbances become extreme and begin to interfere with functioning or to compromise health, an eating disorder may be diagnosed.

Although the symptoms of the various eating disorder syndromes overlap considerably and often are characterized as along a continuum, classification of specific eating disorders is based on criteria as outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

The primary distinguishing feature of anorexia nervosa (AN) is the refusal to maintain a minimally normal body weight (i.e., at least 85% of expected body weight considering age and height). Despite their excessively low-weight status, individuals with AN exhibit intense fear of gaining weight. Such individuals experience their body weight or shape in a distorted manner (e.g., size distortion) and often indicate intense distress regarding body image. Body weight or shape unduly influences self-evaluation, often being the primary determinant of self-esteem. Absence of three or more consecutive menstrual cycles (i.e., amenorrhea) is also required to make a diagnosis of AN. Perhaps the feature that presents the greatest challenge in accurately assessing and effectively treating this disorder is the adamant denial of the seriousness of maintaining an excessively low body weight. Individuals with anorexia nervosa may also engage in recurrent binge eating and purging (i.e., self-induced vomiting, abuse of laxatives, or diuretics), which is classified as the binge eating/purging subtype of AN. Absence of recurrent binge eating and purging characterizes the restricting type of AN.

Within the past two decades bulimia nervosa (BN) only has been recognized as a distinct clinical disorder. The primary feature of BN is recurrent binge eating (i.e., eating large amounts of food in a short time period accompanied by a sense of loss of control) followed by methods of inappropriate compensation. Compensatory methods include purging (i.e., self-induced vomiting, or abuse of laxatives, or diuretics), fasting, or excessive exercise. Symptom frequency for a diagnosis of bulimia nervosa entails binge eating and compensatory behavior(s) occurring on average at least twice a week for a 3-month period. Perception of body shape and weight unduly influencing self-evaluation also is required for the diagnosis of BN. A diagnosis of BN is not given to individuals who receive a diagnosis of AN, because that diagnosis takes precedence. Subclassification of BN is based on type of recurrent compensatory methods, referred to as purging and nonpurging types.

A large number of individuals engage in disturbed eating behaviors, but do not meet strict diagnostic criteria for anorexia nervosa or bulimia nervosa, in which case a diagnosis of eating disorder not otherwise specified (ED-NOS) may be appropriate. Examples of symptom constellations that might meet the criteria for ED-NOS include bulimic behavior occuring less frequently than two times per week or purging in the absence of binge eating behavior. Another example of ED-NOS, binge eating disorder (BED), which is characterized by recurrent binge eating in the absence of compensatory behaviors, has been listed in the appendix of DSM-IV as a diagnosis warranting further research.

IV. Epidemiology of Eating Disorders

Although increasing prevalence combined with increased recognition of eating disorder problems for women has contributed to the perception that eating disorders have become an “epidemic,” this is not supported by epidemiological research. However, the high prevalence of eating disorders is well documented, with women representing the majority of those afflicted. Although these disorders are most commonly seen in women, approximately 5% to 10% of individuals who develop anorexia nervosa or bulimia nervosa are men. Research on AN and BN indicate that these disorders are most often found among Caucasian adolescent and young adult females in industrialized countries espousing the ideology of Western culture. The most recent figures indicate that from .10% to 1.0% of young females have AN. Prevalence rates are higher for BN, ranging from 1% to 3% of young women when using stringent diagnostic criteria.

Increased rates of anorexia nervosa and bulimia nervosa have been associated with certain professions (e.g., fashion models, ballet dancers) that emphasize thinness. Elevated rates of eating disorders have also been found among individuals involved in competitive athletics, particularly those in which maintenance of a low body weight is competitively advantageous (e.g., gymnastics, running, wrestling). It is possible that participation in such activities poses as a risk factor in the development of an eating disorder. Alternatively, some individuals with established eating disorders (or body image disparagement) may be drawn to such activities, in order to use compulsive exercise as a socially condoned form of dietary compensation in efforts to maintain or achieve a low body weight.

• Psychological and Social Impairment

Body image disturbance is a central feature of anorexia nervosa and bulimia nervosa. Body size overestimation among individuals with AN and BN has been empirically documented. Among individuals with AN and BN, marked fluctuations of body image disparagement frequently occur, which may precipitate and/or result from intensified eating disordered behavior.

Increased psychological distress often is found among individuals with an eating disorder. Relatively high rates of comorbid psychopathology (especially affective disorders) have been reported for samples of individuals with anorexia nervosa. In addition, problems with past or present substance abuse are not uncommon among eating disordered samples. Individuals with eating disorders also display a pattern of cognitive abnormalities, such as a dichotomous thinking style. Low self-esteem and difficulties in interpersonal relationships are often reported by individuals seeking treatment for eating disorders.

The extent to which these psychological and social difficulties may be involved in the development of eating disorders remains unclear and could be clarified by prospective, longitudinal studies. However, it is important to note that many of these symptoms are ameliorated with treatment that results in reduction or cessation of eating disordered behaviors.

Several thorough reviews are available providing detailed accounts of adverse medical sequale of eating disorders. Although prevalence rates for anorexia nervosa (AN) are relatively low, the medical consequences can be grave. Mortality rates for AN at long-term follow-up range from 6% to 20% and up to one-fourth of anorectic individuals develop severe, chronic disabilities resulting from the disorder. The results of prolonged malnutrition found in AN include certain visibly recognizable symptoms, including obvious weight loss, dry hair and skin, alopecia (i.e., hair loss), and excessive lanugo hair (e.g., fine, downy body hair). Cold intolerance, sleep disturbances, headaches, and fatigue are common among individuals with AN. Prolonged protein depletion resulting from chronic malnutrition results in additional symptoms, detectable through laboratory examinations. Abdominal pain and bloating, and constipation are often reported by individuals with AN, which may be due to delayed gastric emptying. Constipation also may result from laxative abuse and starvation. Among the most serious consequences of AN are osteoporosis, growth stunting, and cardiac complications.

Although mortality rates for bulimia nervosa are low, fatalities have been documented as a result of gastric rupture after binge eating, esophageal perforations (i.e., Boerhooves syndrome), and cardiomyopathy due to chronic ingestion of Ipecac. Fluid loss due to recurrent purging can result in dehydration and electrolyte imbalance, potentially leading to cardiovascular disturbances. Recurrent vomiting may result in esophageal erosion. Constipation and abdominal bloating and pain may result from binge eating.

Several factors contribute to the secretive nature of eating disorders, including denial of the seriousness of symptoms, embarrassment regarding the symptoms, and/or fear of the consequences of relinquishing the disturbed behaviors (i.e., potential weight gain or increased anxiety). Consequently, eating disorders often go unnoticed and can be challenging to assess, although warning signs are often present. Secretive eating, refusal to eat in public, and frequent dieting may be indicative that an individual is struggling with some form of an eating disorder; these symptoms are usually found in individuals with either anorexia nervosa or bulimia nervosa. Behavioral indications of purging behavior include spending excessive amounts of time in bathrooms or frequently going to a bathroom immediately following eating. Excessive or compulsive physical activity may also indicate the use of exercising as a form of dietary compensation. The use of stringent diets or fasting for extended periods of time may signal the presence of an eating disorder. Substantial changes in body weight, including weight fluctuations, or continued weight gain or loss may also be indicative of an eating disorder.

Emaciation is usually the primary physical indication of anorexia nervosa. Measurements of body weight obviously aids in determining if an individual is below 85% of expected weight; however, individuals with AN may drink excessive amounts of fluid or wear concealed weights in an attempt to manipulate assessment of body weight. Overactivity (e.g., continuous body movement or pacing) is often observed among individuals with AN. As described above, some of the additional detectable signs of AN include dry skin and hair, lanugo, and alopecia. Ammenorhea may also indicate the possibility of AN, although the use of oral contraceptives may complicate the detection of this symptom.

Although frequent weight fluctuations may signal the presence of bulimia nervosa (BN), many individuals with BN are of normal weight and appear relatively healthy. Although BN is usually less easily detected than anorexia nervosa, certain signs may aid in its detection. One indication of recurrent self-induced vomiting, sometimes referred to as a “Russell’s sign,” is the development of callouses or scarring on the back of the hand resulting from abrasion during self-induced vomiting. This symptom may not be present in those individuals who primarily use alternative forms of purging (i.e., laxative, diuretic, or enema abuse), who have nonpurging BN, or who after prolonged vomiting have come to do so reflexively. Self-induced vomiting may also contribute to hypertrophy of the salivary glands, creating a swollen appearance of the neck and face (i.e., “puffy cheeks”). Although this symptom may be fairly pronounced in some women, it is not detectable in the majority of individuals with BN. Additional signs include the presence of small skin hemorrhages (i.e., facial petechiae) or conjunctival hemorrhages that may result from forceful vomiting. Dental enamel erosion, most pronounced on the inside surface of the upper teeth, is another indication of purging that may produce protrusion of dental fillings or discoloration (i.e., darkening) of the teeth. This symptom, which is easily detected during dental examinations, may be overlooked during routine physical examinations unless specifically assessed. Edema may be present for those who abuse laxatives or diuretics. Individuals with BN often present with complaints of “bloating,” constipation, or lethargy. Laboratory tests may be used to detect electrolyte imbalance, although such abnormalities are detected in only approximately 40% of individuals with BN.

Psychotherapy is commonly used in the treatment of eating disorders. One form of psychotherapeutic intervention, cognitive behavioral therapy (CBT) has been the most extensively studied. Based on the work of Beck for the treatment of depression, CBT is a time-limited, present-focused, solution-oriented form of therapy. This approach is based on “collaborative empiricism” in which the client and therapist actively work together using an experimental approach to resolve a specified problem. As applied to eating disorders, the primary focus is on modifying disordered eating behaviors and distorted cognitions about food, weight, and shape. A combination of behavioral techniques, cognitive interventions, and emphasis on relapse prevention are integrated in this approach. The efficacy of CBT has been demonstrated in several studies of BN. Favorable reduction rates of binge eating (ranging from 77% to 93%) and purging (74% to 94 %) have been reported for five of the most recent, large studies. Methods used in behavior therapy (BT) also are commonly integrated in CBT treatment for individuals with eating disorders. Studies comparing BT with CBT have generally demonstrated that the addition of cognitive interventions to behavioral methods are associated with similar or greater clinical gains.

The efficacy of an alternative type of psychotherapy, Interpersonal Psychotherapy (IPT), recently has been demonstrated in treating individuals with BN, as well as BED. IPT is time-limited, present-focused, and solution-oriented. IPT differs from CBT in that the emphasis of treatment is on modification of interpersonal interactions, rather than eating disordered behavior or cognitions.

Another therapeutic approach that has been investigated is supportive-expressive therapy, a short-term, nondirective, dynamically informed modality that conceptualizes core conflicts in terms of interpersonal issues. Although supportive-expressive therapy was found to be effective in reducing binge eating in this study, CBT was found to be associated with greater improvements in many aspects of eating disturbance and psychopathology, and a higher rate of remission in bulimic symptoms.

Alternative psychotherapeutic approaches to treating individuals with eating disorders recently have been well articulated, although no controlled outcome studies have yet to be conducted. The relative efficacy of psychodynamic therapy is unclear given the absence of empirical data. However, this approach may be beneficial for clients who have not derived benefit from less intensive interventions, such as CBT. Feminist therapists have convincingly argued for the importance of considering sociocultural and political issues in designing interventions for individuals with eating disorders. The potential efficacy of psychotherapeutic interventions incorporating feminist perspectives warrant future empirical investigation.

Although favorable results have been reported using psychotherapy, particularly CBT and IPT, several limitations of this body of research warrant discussion. Despite the substantial rates of symptom reduction and remission reported in these studies, it is important to note that approximately one-third to one-half of participants remained symptomatic at the end of treatment. Furthermore, strict inclusion criteria utilized in research studies such as these limit the generalizability of the findings, which may not be representative of the majority of individuals seeking treatment for bulimia nervosa. Data are not available regarding the relative efficacy of individual versus group administration of CBT or IPT. Additional research comparing the relative efficacy of alternative psychotherapeutic approaches is warranted. However, this body of literature provides support for the efficacy of using solution-focused psychotherapeutic interventions such as CBT and IPT in treating individuals with BN.

Despite the fact that anorexia nervosa (AN) has received attention from clinical researchers for several decades, little empirical data are available regarding efficacy of psychotherapy for this disorder. To a large extent, the paucity of AN treatment research is attributable to the logistical difficulties involved in implementing controlled studies with this population. Only four outpatient psychotherapy studies of AN have been reported to date, with some suggestions of effectiveness. The potential benefits of using behavioral modification programs (which overlap to a certain extent with CBT interventions) during inpatient hospitalization has received support in several studies. Although limited empirical data are available regarding the relative efficacy of individual versus family therapy in treating individuals with eating disorders, some therapists have convincingly articulated the potential benefits of using family approaches in working with eating disordered individuals. Some empirical support exists for using family therapy for younger individuals with AN. Additional research is needed to investigate various psychotherapeutic interventions for treating individuals with AN, and relapse prevention strategies, given the substantial rate of relapse in those who initially respond to treatment.

Antidepressant medications have been found to effectively reduce binge eating and purging symptoms in several bulimia nervosa studies. Four controlled trials involving outpatient samples have demonstrated the superiority of serotonin-reuptake inhibitors (SRIs) in comparison to placebo in reducing bulimic symptoms, although one impatient trial failed to support added benefit for the drug. These medications generally have been found to be well-tolerated. Therefore, fluoxetine hydrochloride (Prozac) administered at daily doses of 60 mg (higher than the recommended dose of 20 mg used to treat individuals with major depressive disorder) is considered by some the first choice for pharmacotherapy for BN. The use of tricyclic antidepressants or monoamine oxidase inhibitors also is supported by research. Although the side effects of these classes of medications may be more problematic for many individuals than the SRIs, they may be beneficial treatment strategies for those individuals who do not respond to the use of SRIs. In addition, some clinicians prefer the second generation tricyclics, such as despiramine, as the initial intervention owing to the lower cost of the medication.

Despite the relative efficacy of antidepressant medications compared to placebo in reducing bulimic symptoms, it is important to note that rates of bulimic symptom remission at end of treatment range from 4 % to 20% in most studies. These rates of symptom remission are lower than those reported in psychotherapy outcome studies. Augmenting psychotherapy with pharmacotherapy may seem indicated in some cases, although results from research on this are mixed. Three studies have reported no benefit to adding antidepressant treatment regimen to psychotherapy on outcome in eating variables, and the results are equivocal in one study. There is some suggestion that certain other symptoms, such as those of depression, may benefit from the combination of interventions.

Little empirical data are available from investigations of the benefits of pharmacotherapy in promoting weight restoration in individuals with anorexia nervosa. Approximately a dozen controlled trials have been conducted on variety of medications, yielding often ambiguous results. Benefits have been demonstrated for the use of amitriptyline in one study and for cyproheptadine in two studies. However, the majority of placebo-controlled studies, investigiating the efficacy of these and other medications (e.g., antipsychotics, clonidine, cisapride, lithium, and tetrahydrocannabinol) have not demonstrated efficacy in promoting weight restoration.

Nutritional counseling is often regarded as a necessary therapeutic component for treatment of individuals with eating disorders. Healthy meal planning is the cornerstone of this approach, which involves providing objective nutritional information about the types and amounts of food necessary to achieve or maintain adequate nutrition and healthy weight. Behavioral strategies are also employed to increase the likelihood of successfully adhering to nutritional recommendations. Nutritional counseling is essential for the treatment of anorexia nervosa, which requires an increase in caloric intake to promote gradual weight restoration at a rate of I to 3 pounds per week. Nutritional counseling is also useful for treating BN to help stabilize the dietary chaos that often promotes binge eating.

At times sufficient medical danger exists (e.g., dehydration, severe electrolyte imbalance, gastrointestinal bleeding, severe emaciation, suicidal ideation) to require inpatient hospitalization. Goals of hospitalization include interruption of weight loss (usually if less than 70 to 75% of ideal body weight), progress toward restoration of healthy body weight, cessation of binge eating or vomiting, treatment of medical complications, and treatment of comorbid conditions (e.g., depression or substance abuse). Hospitalization also may be indicated if clinical benefits are not obtained from adequate outpatient therapy. This may be required for severely underweight individuals who, evidence starvation-induced impaired cognitive functioning.

Day treatment, or partial hospitalization, may be recommended following inpatient discharge or as an alternative to hospitalization. This type of treatment allows patients to receive therapy during the day without requiring an overnight stay. This type of treatment is more economical than inpatient hospitalization and is less socially disruptive. Additional benefits of this type of treatment include allowing the patient to pursue work or education while obtaining intensive treatment, and providing a structured atmosphere during meal times.

IX. Prevention of Eating Disorders

Given the prevalence of these disorders and the seriousness of the psychological and medical sequelae, the prevention of eating disorders is an important area that requires increased attention. Such efforts often involve providing psychoeducational information in school-based settings aimed at reducing unhealthy dieting behavior and enhancing body acceptance, often involving critical analysis of messages conveyed through mass media. A number of eating disorder studies have been conducted to investigate the effectiveness of primary prevention programs. However, an unfortunately consistent finding across such studies is that although knowledge about eating disorders often increases, behavioral changes (i.e., reductions in unhealthy dietary practices) have not been detected among participants. Failure to observe the desired behavioral outcomes of primary prevention programs may be attributable, in part, to a variety of methodological challenges, including the validity of self-report assessments and the relatively low baseline frequency of eating disordered behaviors (e.g., self-induced vomiting) among the general adolescent population. However, it is also possible that, in order to have a significant impact, prevention efforts may need to be delivered to individuals at a younger age (i.e., elementary school). Increased understanding of the complex etiology of anorexia nervosa and bulimia nervosa may be required in order to develop more comprehensive and effective prevention strategies. In addition, relatively little attention has been devoted to investigating the effectiveness of secondary prevention of eating disorders. As such, effective strategies to assist in identifying individuals who are experiencing initial symptoms of an eating disorder and facilitating appropriate treatment remain an important area to be developed.

Stringent diagnostic criteria show that the prevalence for any single eating disorder is rather low. However, combining prevalence rates across various types of disorders reveals that up to 5 to 10% of women may be afflicted with a diagnosable eating disorder (i.e., AN, BN, or ED-NOS). Serious medical, psychological, and social consequences are associated with these disorders.

The treatment of individuals with eating disorders often requires a multifaceted approach (e.g., psychotherapy, pharmacotherapy, nutritional counseling, medical management) involving members of several professional disciplines (e.g., dieticians, psychologists, psychiatrists, internists) and various settings (e.g., inpatient, outpatient, day treatment, residential).

Literature on the treatment of these disorders indicates that substantial progress has been made in the last few decades. However, a sizable subgroup of individuals with either anorexia nervosa or bulimia nervosa do not adequately respond to established therapies, or do respond but subsequently relapse. Much additional work is needed in predicting treatment response, matching individuals to treatments, and developing relapse prevention strategies. Furthermore, effective primary and secondary prevention strategies remain to be established.

Bibliography:

• Brownell, K. D., & Fairburn, C. G. (Eds.). (1995). Eating disorders and obesity. New York: Guilford Press.
• Fairburn, C. G. & Wilson, G. T. (Eds.). (1993). Binge eating: Nature, assessment and treatment. New York: Guilford Press.
• Fallon, P., Katzman, M. A., & Wolley, S. C. (Eds.). (1994).Feminist perspectives in eating disorders. New York: Guilford Press.
• Garner, D. M. & Garfinkel, P. E. (Eds.). (1997). Handbook of treatment for eating disorders. (2nd ed.). New York: Guilford Press.
• Mitchell, J. E. (Ed.). (1990). Bulimia nervosa. Minneapolis, MN: University of Minnesota Press.
• Smolak, L., Levine, M. P., & Striegel-Moore, R. (Eds.). (1996). The developmental psychopathology of eating disorders: implications for research, prevention and treatment. Mahwah, NJ: Lawrence Erlbaum.
• Striegel-Moore, R.H., Silberstein, L.R., & Rodin, J. (1986). Toward an understanding of risk factors for bulimia. American Psychologist, 41,246-263.
• Thompson, J.K. (Ed.). (1996). Body image, eating disorders, and obesity. Washington, DC: American Psychiatric Association.

ORDER HIGH QUALITY CUSTOM PAPER

• High School
• You don't have any recent items yet.
• You don't have any courses yet.
• You don't have any books yet.
• You don't have any Studylists yet.
• Information

PSY470 RS T3 Outline Template

Abnormal psychology (psy-470), grand canyon university, recommended for you, students also viewed.

• PSY 470 RS T1 Subject Selection
• Case Study abnormal psy
• Bipolar disorder newsletter vreyes
• Abnormal Psychology Final Research Paper - Schizophrenia
• Models of Abnormality Matrix Assignment
• Outline Template

Related documents

• Subject Selection
• Character Analysis Paper
• Abnormal Psychology Research Paper Rough Draft - Schizophrenia
• Benchmark - Anxiety and Phobias Paper
• PSY-470 Topic 1 DQ 1
• PSY-470 Topic 1 DQ 2

Preview text

Psy-470 abnormal psychology research paper outline.

Topic/Proposed Title: Eating Disorders

Introduction: We all know that food is necessary for us to survive, along with water, but what would happen to the body if someone were to eat too much or too little? Eating disorders are classified as mental health disorders where people will have irregular or troubled eating patterns. People who struggle with eating disorders can have different problems like becoming obsessed with their dietary decisions, weight, or looks. Even though there are about 6 types of eating disorders, this paper will only discuss anorexia nervosa, bulimia nervosa, and binge eating disorder (Petre, 2022).

Purpose & Thesis Statement: This paper will have general explanations of what the three types of eating disorders are, what types of diseases or medical conditions can be involved (comorbidity) and will discuss as to why they are included in one or more models of abnormality (DSM-5), or etiology.

1 st Main Point: That Serves to Support Your Thesis:

 Eating disorders are illnesses that can develop into unhealthful eating patterns. They usually begin with an obsession with food, weight, or physical appearance. When eating disorders are severe, they can have a substantial negative impact on health and, if ignored, can even be fatal (Petre, 2022). o This article has explanations of each eating disorder and talks about the symptoms and just how badly it can impact one’s life. It also gives treatment options and tips on how to help others who suffer with eating disorders.

 There are different ways in which someone would eat with one of these disorders. Some will avoid food as in only eating small amounts of certain foods (National Institute of Mental Health, 2021). Other people would lose control over their eating habits and consume large amounts. Some cases this would follow up on the person to have excessive vomiting, fasting, etc. while others would not do those things.

o This article explains what each disorder could cause someone to out of their control. There is treatment options and lifelines in the article. © 2023. Grand Canyon University. All Rights Reserved.

2 nd Main Point: That Serves to Support Your Thesis: what types of diseases or medical conditions can be involved (comorbidity)

 Eating disorders can affect one’s physical health, but when certain disorders have high rates of comorbidity with other types of disorder, it can greatly affect one’s mental health as well (Bridley & Daffin, 2021). o The article has different examples to show which of the disorders have similar disorders and which ones could be worse due to symptoms or the amount of food consumed.

 People with an eating disorder have a higher risk of developing psychiatric, psychological, and medical conditions (National Eating Disorders Collaboration. (n.). o The article explains in separate sections for psychiatric and medical comorbidities. Different types of disorders involved and why they are common within eating disorders.

3 rd Main Point that Serves to Support Your Thesis: why they are included in one or more models of abnormality (DSM-5)

 Eating disorders are multidimensional disorders, meaning that there are different factors that lead to the eating disorder (Bridley & Daffin, 2022). o The article explains the factors as it includes biological, cognitive, sociocultural, and personality traits as some causes for eating disorders.

 Researchers are finding out more about how eating disorders can be caused by interactions of genetic, biological, behavioral, psychological, and social factors (National Institute of Mental Health, 2022). o There are researchers that are still looking into understanding eating disorders and why they have different ways it can be developed.

Conclusion: Write out your plan for how you will conclude. You do not need to submit your actual conclusion since you have not yet completed the rough draft.

© 2023. Grand Canyon University. All Rights Reserved.

• Multiple Choice

Course : Abnormal Psychology (PSY-470)

University : grand canyon university.

• More from: Abnormal Psychology PSY-470 Grand Canyon University 711   Documents Go to course

An official website of the United States government

Official websites use .gov A .gov website belongs to an official government organization in the United States.

Secure .gov websites use HTTPS A lock ( Lock Locked padlock icon ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.

• Publications
• Account settings
• Advanced Search
• Journal List

Experiences of eating disorders from the perspectives of patients, family members and health care professionals: a meta-review of qualitative evidence syntheses

Sanna aila gustafsson, karin stenström, hanna olofsson, agneta pettersson, karin wilbe ramsay.

• Author information
• Article notes
• Copyright and License information

Corresponding author.

Received 2021 Aug 25; Accepted 2021 Nov 7; Collection date 2021.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Eating disorders are serious conditions that cause major suffering for patients and their families. Better knowledge about perceptions of eating disorders and their treatment, and which factors that facilitate or hinder recovery, is desired in order to develop the clinical work. We aimed to explore and synthesise experiences of eating disorders from the perspectives of those suffering from an eating disorder, their family members and health care professionals through an overarching meta-review of systematic reviews in the field.

A systematic literature search was conducted in the databases PubMed, PsycInfo, Scopus, and CINAHL. Inclusion criteria were systematic reviews of qualitative research on experiences, perceptions, needs, or desires related to eating disorders from the perspective of patients, family members or health care professionals. Systematic reviews that fulfilled the inclusion criteria were assessed for relevance and methodological limitations by at least two researchers independently. The key findings were analysed and synthesised into themes.

We identified 17 systematic reviews that met our inclusion criteria. Of these, 13 reviews reported on the patients’ perspective, five on the family members’ perspective, and three on the health care professionals’ perspective. The study population in the reviews was predominantly girls and young women with anorexia nervosa, whilst systematic reviews focusing on other eating disorders were scarce. The findings regarding each of the three perspectives resulted in themes that could be synthesised into three overarching themes: 1) being in control or being controlled, 2) balancing physical recovery and psychological needs, and 3) trusting relationships.

Conclusions

There were several similarities between the views of patients, family members and health care professionals, especially regarding the significance of building trustful therapeutic alliances that also included family members. However, the informants sometimes differed in their views, particularly on the use of the biomedical model, which was seen as helpful by health care professionals, while patients and family members felt that it failed to address their psychological distress. Acknowledging these differences is important for the understanding of anorexia nervosa and other eating disorders, and may help clinicians to broaden treatment approaches to meet the expectations of patients and family members.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40337-021-00507-4.

Keywords: Eating disorders, Anorexia nervosa, Evidence synthesis, Qualitative research, Meta-review, Meta-synthesis

Plain English summary

The current paper brings together existing knowledge on experiences of eating disorders. We were interested in the views of patients, family members and health care professionals. A literature search identified 17 systematic reviews which addressed these questions. The identified research focused mainly on girls and young women with anorexia nervosa, while research on other eating disorders was limited. Overall, this review suggests that it is important to acknowledge that patients, family members and health care professionals may have different experiences and views regarding treatment of eating disorders, and that it is important to consider all these views in the development of the care of eating disorders.

Introduction

Eating disorders (EDs) are serious psychiatric conditions that often have both psychological and physical consequences and significant societal costs [ 1 , 2 ]. An ED can lead to social problems and reduced quality of life for both the victim and his or her family [ 3 ]. The debut is often during adolescence, although in recent years there has been an increase in new-onset EDs in adults [ 4 , 5 ]. The lifetime prevalence of EDs in Western countries has been estimated to 1.89% [ 6 ]. Girls and women are more often affected than men. Previously, it has been estimated that about 90 percent of those affected are women, but new studies estimate that the proportion of men could be around 20 percent [ 7 ].

ED often require multi-disciplinary treatment [ 8 ]. Most patients are treated in outpatient care, but in more serious cases there may be both day care and inpatient medical or psychiatric care. There are also several inpatient units that specialise in treatments for patients with an ED [ 9 ].

The recommended psychological treatment for adult patients is cognitive behavioural therapy (CBT), which has is strongest empirical support for patients with bulimia nervosa (BN) and binge eating disorder (BED), but is also increasingly recommended for patients with anorexia nervosa (AN) [ 8 – 10 ]. Family-based treatment is the treatment method that is primarily recommended for adolescents. The method is mainly adapted for patients with AN or other restrictive conditions but is also considered to have a good effect for adolescents with BN [ 8 , 9 ].

It is estimated that about half of all people with AN are fully recovered after treatment. At ten-year follow-up, about 73 percent are in remission. The short-term effect of treatment is slightly better for other types of EDs, but there is a significant risk of relapse. In ten years' time, there are marginally more people recovering from BN compared with AN [ 11 ].

Health care professionals often describe that patients with an ED are a challenging group of patients and that it can be difficult to establish a good treatment alliance [ 12 ]. Patients, on the other hand, often describe strong feelings of ambivalence and resistance, which of course complicates treatment, and leads to conflicts with family and friends [ 13 , 14 ].

An improved common understanding of EDs from the perspective of those affected, their family members and caregivers can contribute to better care and treatment for those struggling with EDs and help reduce the strain on their relationships.

Against this background, the aim of the present study was to investigate experiences of living with an ED and factors that facilitate or hinder recovery from the perspectives of patients, their family members and health care professionals.

The current meta-review is based on an assessment conducted at The Swedish Agency for Health Technology Assessment and Assessment of Social Services [ 15 ]. The literature overview was undertaken in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement [ 16 ] following an a priori protocol that was registered locally at the agency.

Search strategy

A systematic literature search covering literature published from January 1, 1990 to September 26, 2018, was conducted in the electronic databases PubMed (NLM), PsycInfo (EBSCO), Scopus (Elsevier), and CINAHL (EBSCO). A complementary, multi-database, search was also conducted. The databases Academic Search Elite, ERIC, Psychology and Behavioral Sciences Collection, and SocINDEX, were searched simultaneously through the EBSCO platform. The detailed search strategy is provided in Additional File 1 .

Eligibility criteria

Inclusion and exclusion criteria were specified in advance. We only included systematic reviews of qualitative research that were published in peer reviewed journals in English, Swedish, Norwegian, or Danish within the time period 1990 to 2018. To be included, a systematic review should cover experiences, perceptions, needs or desires related to EDs from at least one of the following perspectives: persons with eating disorders, family members or health care professionals. All types of EDs according to the DSM-5 classification were considered relevant except for pica, rumination disorder and avoidant/restrictive food intake disorder. There were no restrictions regarding the age of the informants. The targeted reviews were required to cover original studies of qualitative research or of mixed methodology. Systematic reviews using both broad and narrow search strategies were accepted. Grey literature, such as theses, book chapters, and conference abstracts, were excluded.

Study selection

The titles and abstracts retrieved from the literature search were examined independently by two of the authors using the web-based screening tool Rayyan[ 17 ]. If at least one author found an abstract potentially relevant, the article was ordered in full text and assessed for eligibility by at least two authors independently. Systematic reviews that fulfilled the eligibility criteria were forwarded to quality assessment.

Assessment of methodological quality, data extraction and analysis

Systematic reviews that fulfilled the eligibility criteria were assessed for quality by at least two authors independently, using a tool developed at the Swedish Agency for Health Technology Assessment and Assessment of Social Services (Additional File 2 ). The tool was developed specifically to assess methodological limitations of qualitative evidence synthesis and consists of 13 questions that were adapted from the ENTREQ recommendations [ 16 ]. The summarised risk of methodological limitations in the systematic reviews was judged as being of minor, moderate or high concern. Any disagreement between assessors was resolved by discussion. Systematic reviews with high concerns of methodological limitations were excluded from the subsequent process.

Relevant data were extracted from eligible systematic reviews with minor to moderate methodological concerns and summarised in tables.

The findings of selected systematic reviews (reviews with a narrow focus were not included in the synthesis) were analysed using the method of thematic analysis described by Braun and Clarke [ 18 ]. For each group of informants (patients, family members and health care professionals), findings were coded through an inductive analysis. Next, the coded findings were structured by subject within each group of informants and synthesised into themes. The themes were reviewed, similarities and disparities between the three groups of informants were analysed and the themes were assembled into main themes. Data extraction and synthesis was carried out by the first author (SAG) who has clinical experience treating EDs as well as expertise in qualitative research. Data extraction and synthesis of themes were carefully read and partly checked against the original data by three other authors who have experience of qualitative (AP) or quantitative research (KS, KWR) and expertise in conducting systematic reviews. The differing backgrounds of the authors presumably reduced the risk of introducing bias in the analysis and presentation of data. Throughout the synthesis, the authors discussed the findings with each other and reflected over how their background and position may have affected the analysis and whether there were other ways to interpret the results.

The literature search identified 3,082 citations, after removal of duplicates (Fig.  1 ). From the screening of title and abstracts, 79 reviews were retrieved and assessed for eligibility in full text, and 25 of these fulfilled our inclusion criteria. Eight reviews were considered to have high concerns of methodological limitations and were excluded from the subsequent process. The remaining 17 reviews were included and described (Table 1 ). Of these, four reviews had a scope that differed substantially from the other reviews (two reviews focused on pregnant women with AN [ 19 , 20 ], one review focused on gender issues [ 21 ] and one focused on treatment seeking [ 22 ], therefore, they were only included in the descriptive summary but not in the thematic analysis. Thus, the thematic analysis included data from 13 systematic reviews.

PRISMA flow chart

Included systematic reviews

Descriptive summary of the systematic reviews

The 17 systematic reviews with minor or moderate concerns of methodological limitations were published between 2009 and 2018 and were based on a total of 255 unique qualitative primary studies. An assessment of study overlap revealed that few of the primary studies were included in more than one review (see Additional File 3 ). The majority of the included reviews were based on studies using qualitative methods only, but three reviews also included studies that used mixed methods [ 22 – 24 ]. Most of the original studies had used interviews as the primary source of data, but some studies were based on focus group discussions, survey responses, or observations of behaviour.

Most reviews carried out synthesis using meta-ethnography [ 19 , 25 – 33 ]. Other synthesis methods were thematic analysis [ 22 , 23 ], qualitative meta-analysis [ 34 ], and various forms of integrative synthesis methods [ 20 , 21 , 24 , 35 ]. Few of the included reviews stated that they had followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement[ 22 , 34 ] or the Enhancing Transparency in Reporting the synthesis of Qualitative research (ENTREQ) system[ 31 , 32 ]. In most reviews, however, the Critical Appraisal Skills Programme (CASP) had been used to assess the quality of the primary studies [ 19 – 21 , 25 – 29 , 31 – 34 ].

A total of 13 systematic reviews described the patients’ perspectives [ 19 – 23 , 25 , 27 , 28 , 30 – 34 ], five concerned the family members’ perspectives [ 24 , 26 , 29 , 31 , 32 ], and three focused on the health care professionals’ perspectives [ 31 , 32 , 35 ]. Most reviews included both men and women with EDs, and only three reviews focused exclusively on women [ 19 , 20 , 33 ]. Most reviews did not specify age under the inclusion criteria, but no review included studies on young children. Five reviews focused on adolescents with EDs but they also included young adults [ 23 , 24 , 30 – 32 ]. Nine reviews focused exclusively on AN [ 23 , 25 , 27 , 28 , 30 – 33 , 35 ], while the remaining reviews included all EDs, or did not specify diagnosis in the inclusion criteria. One of the reviews that covered health care professionals’ perspectives included interviews exclusively with nurses [ 35 ] whereas the other two comprised nurses, therapists, and treatments teams [ 31 , 32 ]. The informants in the reviews that included family members were predominantly parents, but siblings and partners were also included in some of the reviews [ 24 , 26 , 29 , 31 , 32 ].

Thematic analysis of the systematic reviews

In each of the three perspectives we identified three themes that described experiences of the disease, the care provided and the recovery process. When the three perspectives were analysed together, we identified three overarching themes that were shared among all three perspectives (see Table 2 ). The themes are described in the table below and organized by perspective. Illustrative quotes for each theme are provided in Table 3 .

Overview of subthemes and overarching themes from the 13 systematic reviews that were included in the thematic analysis

Themes and quotations from the systematic reviews

The perspective of individuals with ED

Nine systematic reviews describing the patients’ perspectives were included in the thematic analysis [ 23 , 25 , 27 , 28 , 30 – 34 ]. This perspective comprised three themes; a lonely struggle for control (covered by three studies [ 28 , 31 , 33 ]), a wish to be seen as a whole person (covered by four studies [ 23 , 27 , 30 , 32 ]), and finding the keys to recovery (covered by five studies [ 23 , 25 , 27 , 33 , 34 ]).

A lonely struggle for control

Life with an ED was described as a lonely and isolated existence, with health problems and difficulties in relationships [ 28 , 31 , 33 ]. Low self-esteem, a negative body image and perfectionist demands on themselves were seen as underlying factors that led to a difficult adolescence, and uncertainty about who they were.

For those with AN, the disorder was seen as an integral part of their personality and the person they were, which also made them afraid to get well since they feared that it could mean losing their identity [ 28 , 31 , 33 ].

Living with AN was described as a struggle to be in control while simultaneously feeling controlled by the disease. The positive experience of control contributed to feeling special and having power (for example over their treatment) and the ED was described as a "coping strategy" that helped them deal with difficult emotions and events. For the majority of patients, the other side of the coin was a difficult experience of losing, or giving up control, for example when entering treatment, or feeling trapped in their illness and symptoms. The subjects described how their whole life revolved around a compulsive focus on calorie counting and compensatory behaviours and how this resulted in a lonely and isolated existence [ 28 , 31 , 33 ].

A wish to be seen as a whole person

When seeking treatment, patients had often felt ill-treated and misunderstood, especially in general care [ 23 , 27 , 30 , 32 ], and therefore, they stressed the necessity of access to specialised ED care. The patients often felt that the health care focused too much on physical recovery and on normalization of eating and weight. This was perceived as unempathetic and gave patients the impression that the therapists did not understand the patient's real problems. Although patients could see that normalization of weight and eating was an important and necessary part of treatment, they felt that focusing too heavily on physical recovery led to feel that they were being reduced to their disease [ 23 , 27 , 30 , 32 ].

Instead, they emphasised that there must be room for conversation about thoughts and feelings and that the care they received should take their wider life situation into account. It was also felt necessary that the therapistwas able to adapt and change his/her approach during the course of the treatment. Initially, the patients might need a therapist that was proactive and took control. At a later stage when the patient was able to take responsibility, treatment should empower and encourage the patient to take control of his/her own life.

Family-based treatment was common for young patients. These patients often felt considerable guilt towards parents and siblings, and they described that a positive aspect of family treatment was that it could help the whole family to feel better, bring them together, and improve their communication. However, patients also described feeling unable to talk about everything that was important to them in family treatment. This risked the treatment becoming superficial and focused on concrete behavioural changes instead of dealing with the underlying causes of the condition. The young patients therefore felt that it was important that family treatment was combined with individual therapy. Individual therapy was seen as an important forum for motivating, engaging and giving patients hope. Patients perceived that it was important to address issues such as relationships both within and outside the family, and to be seen as a unique individual, rather than simply as a person with AN [ 23 , 27 , 30 , 32 ].

Finding the keys to recovery

In the studies that focused on AN, patients consistently described recovery as something “greater” than the mere absence of an ED diagnosis. An experience of being healthy did not arise automatically once weight and eating were normalized. Patients described recovery as a process of getting to know themselves and daring to admit that the false sense of control that the ED had given them had actually come to control them. Recovery meant being able to stick to healthy behaviors even when it felt difficult [ 23 , 25 , 27 , 33 ].

Four factors were described as central to recovery; to regain control and power over one's own life, changing the anorexic identity and finding and accepting oneself behind the disease; getting in touch with one's true feelings and acknowledging the consequences of the disease for oneself, thereby challenging the anorexic thoughts.

In the systematic review that described recovery more generally for people with an ED, it was found that patients perceived the term "healthy" as including feeling well emotionally, socially and psychologically. It included having strategies for dealing with difficulties that arise in life and feeling a sense of belonging or feeling that life is meaningful.

Recovery was described as a process that took place in stages and sometimes with setbacks. Recovery was facilitated by supportive relationships, such as with family and friends. Trusting relationships with family and friends could have a double impact, both by motivating the ill person to seek treatment [ 25 ] and by providing support during the recovery process. Trusting relationships with health care professionals were also considered important both for the motivations to seek and stay in treatment [ 25 ] and for the recovery process itself [ 34 ].

The health care perspective

Three systematic reviews included the experiences of health care staff [ 31 , 32 , 35 ], and all three focused mainly on AN. Two of them [ 31 , 32 ] examined similarities and differences in perceptions of AN and its treatment among staff, patients and relatives. The third overview [ 35 ] explored the knowledge, attitudes and perceived challenges of health care professionals.

The health care perspective also revealed three themes: a tug of war over control, the necessity of physical recovery, and being let into someone’s world.

A tug of war over control

The health care staff saw control as a central aspect of AN and they felt that besides the need to control their own body, patients also felt a need to control their family through the ED [ 32 ]. The staff perceived that the need for control became a force outside the patient's active choice and that the ED ended up controlling the patient instead. The staff therefore felt that they had to "take over" control from the young person through clear structure and rules regarding treatment [ 32 , 35 ]. This was considered to create security for the young person, and to give them the opportunity to allow themselves to let go of control. However, in one study, nurses also stressed the importance of knowledge and understanding of the disease, and described how a lack of knowledge could lead to staff using control strategies in a repressive and punishing way that could create resentment [ 35 ].

The necessity of physical recovery

The health care staff used a biomedical model to understand AN [ 31 , 32 ]. AN was seen as a disease to be treated. This meant that staff emphasised weight rehabilitation and changes in other observable ED symptoms as important parts of treatment. The staff expressed that they were lacking knowledge about ED symptoms and diagnosis, and that they had insufficient skills for dealing with patients' problems [ 35 ]. This led them to feel frustrated and insecure in meeting the patients. Increased knowledge was seen as essentialfor improving staff attitudes towards people with EDs.

The medical view of the ED was perceived as helpful by staff because it was considered to reduce the patient's and their relatives' feelings of guilt. Health care professionals found it helpful to see the disease as a phenomenon separate from the individual. The staff used this "externalisation" to distinguish between disease and patient as a treatment strategy [ 31 , 32 ]. It was considered to reduce the patient's feelings of guilt and increase the patient's motivation.

Even under this theme, a review by Salzman et al. [ 35 ] also emphasised the other side of the coin, meaning.e., that although weight rehabilitation was important, a single-minded focus on physical issues could hamper the relationship with the patient.

Being let in to someone’s world

A good alliance between patient and therapist was considered essential [ 31 , 32 , 35 ]. Honesty, understanding, respect and a non-judgmental and empathetic attitude were important for building an alliance. The staff expressed that patients with EDs were a difficult and demanding patient group with whom it was challenging to form an alliance and who often expressed suspicion and distrust of their caregivers. Staff became frustrated with patients' ambivalence or reluctance to engage in treatment and sometimes perceived patients as manipulative.

One of the systematic reviews examined the health care professionals' experiences of meeting relatives, in this case parents of people with an ED [ 32 ]. The staff emphasised the importance of building a positive alliance with the parents and engaging them in the treatment. This was considered a necessary condition for effective treatment of young patients with AN.

The perspective of family members

Five systematic reviews covered the perspective of family members [ 24 , 26 , 29 , 31 , 32 ]. All of them focused mainly or exclusively on AN. Like the other two perspectives, the perspective of family members also revealed three themes; the balancing act between control and trust, a call for a more holistic approach to treatment, and a wish for a working alliance with the whole family.

The balancing act between control and trust

The family members felt that the whole family was negatively affected by the afflicted person’s illness [ 24 , 26 , 29 , 31 , 32 ]. The family members described the ED as an active choice which the sufferer, at least at some point during the course of the disease, could have refrained from [ 29 ]. The family members felt that controlling eating and weight had, for the ill person, become a way of coping in a life where other things felt uncontrollable, but that the ED had instead taken control of their loved one and changed her personality and behaviour [ 26 , 29 , 31 ]. Family patterns and old roles changed [ 24 , 26 , 29 , 31 , 32 ] and the family members described communication as characterised by conflict, mistrust and uncertainty. It could be perceived that the person with the ED had regressed, which led parents to become more controlling. The opposite sometimes happened with siblings, who would take on a more mature role, becoming a "mediator" in the family and taking greater responsibility.

Family members described a difficult balancing act between adapting to the ill person by, for example changing the family's eating habits and activities, andbeing more demanding. The family members tried to find a balance between controlling and making demands on the ill person, and at the same time reinforcing and encouraging positive steps and showing trust in her/him. To some extent, they felt that it was important to adapt the family's social activities and meals by, for instance, not having certain foods in the house. However, this sometimes resulted in them "walking on eggshells" and accepting behaviours that were counterproductive in the long term. Siblings were often critical of the parents' strategies and thought that they adapted too much.

A common strategy to cope with this balancing act was to distinguish the disease from the individual and to see certain behaviours as “the disease that speaking”. This helped the family members to maintain a supportive attitude, even when they felt that the person with the ED was misbehaving [ 24 , 26 , 29 , 31 , 32 ].

A call for a more holistic approach to treatment

It was stressful to see the person with an ED suffering, and the family members felt anxiety, frustration and guilt. Their everyday lives were affected, both socially and professionally. Many informants reported that the family became more isolated and that they stopped associating with others. Several of the systematic reviews reported that family membersno longer had time for hobbies and that working life was affected [ 24 , 29 ]. Against this background, family members stressed the importance of easier and faster access to specialised care with experienced and committed staff who could give the whole family including siblings information and support, and put them in touch with support networks outside the family to connect with others who were in the same situation. [ 24 , 26 , 29 , 31 , 32 ].

Parents often felt that the health care model was too biomedical and focused too much on physical symptoms such as starvation. They perceived that the unique person behind each patient was not seen [ 24 , 29 , 32 ]. Although the biomedical explanatory model could help to relieve parents' feelings of guilt, it also conveyed a negative image of the patient's chances of recovery [ 29 ]. The family members emphasised that it was important that the therapist saw the patient as an individual and that the therapy did not focus too narrowly on correcting the ED symptoms, but also incorporated other things that were important to the patient [ 24 , 29 , 32 ].

A wish for a working alliance with the whole family

The parents often blamed themselves for their child’s ED [ 24 , 26 , 29 , 31 , 32 ] and they thought a lot about it’s possible origins in the family and the child’s upbringing. The siblings felt severely affected by the situation, something that was also described by their parents [ 24 , 26 , 29 , 32 ]. Siblings became anxious and often took great responsibility for both the afflicted sibling and their parents. At the same time, they often felt angry with their unwell sibling, and sometimes jealous that they were receiving more time and attention from their parents. The healthy siblings sometimes felt a conflict of loyalty and also were compelled to mediate between the afflicted sibling and the parents [ 29 ].

Family members often experienced a lack of support from the health service, especially at the beginning of the illness [ 24 , 26 , 29 , 31 , 32 ]. It was difficult to get a correct diagnosis and adequate help, and family members had to fight to get the right care for the affected person. Family members often felt excluded from care and experienced that health care staff did not support them or listen to them. This exclusion was often attributed to rules or principles that had to do with confidentiality or legislation. Family members also felt that they received conflicting advice and suggestions from the health service or that they were not taken seriously [ 29 ].

The three overarching themes

Our synthesis identified three themes in common among the views of patients, family members and health care professionals (Table 2 ). The first theme pertained to the patients’ need for control, which was seen by the family members and the health care professionals as a false control, where the affected person was in fact controlled and limited by the ED. The second theme was the balancing of physical recovery and psychological needs, where the biomedical model was viewed differently from each of the three perspectives. Health care professionals felt that, if used with the right knowledge and competence, the model gave them the support they needed to define target symptoms and goals for recovery, while patients and family members felt that the model placed too much focus on the somatic aspects of the disorder and failed to address psychological distress. The third theme was the importance of forming trusting relationships for accomplishing a well-functioning therapeutic alliance that recognises the whole individual and not just the disease, and that also involves family members.

This meta-review brings together a substantial amount of qualitative research, including data from 255 unique studies, on the experiences of EDs from the perspectives of patients, family members and health care professionals. Three themes emerged from the synthesis; the patients’ need for control, balancing physical recovery and psychological needs, and the importance of trusting relationships in the treatment of the disorders. Although all three main themes were identified in the views of all three groups of informants, there were some differences in their expression that may be important to acknowledge.

Implications for health care systems

The ED causes a great deal of suffering for both the affected person and the family members, and both parties emphasise the importance of getting the right treatment. From our synthesis, however, there appears to be a divergence between ED patients and their family members on the one hand, and the health care staff on the other, regarding how the ED should be understood and treated. Health care professionals often represent a biomedical explanatory model, while ED patients and their family members feel that this model is not sufficient. These different approaches are not necessarily conflicting, but can potentially complicate the alliance building and pull the treatment in different directions, where the professionals place more emphasis on symptom reduction and weight rehabilitation, while the patients and their family members want a more holistic approach to treatment and recovery. This conflict, and suggestions for how to avoid it, was also emphasised in one of the studies involving health care staff [ 35 ]. The main suggestion from patients, family members and health care staff on how to achieve this holistic approach, while still attending to the physical needs of the patient, was to increase the knowledge. The importance of having access to staff who are knowledgeable in terms of both understanding the disease and attending to the patient’s physical needs, and understanding their psychological struggles, and are able to meet the patient in a respectful way, cannot be overemphasised.

In today's health care, and among policy makers, there is an increasing focus on using manual-based treatments and on measuring the outcomes of treatment. Great emphasis is placed on questions about which treatment method has the best scientific support, and how to make sure that therapists actually deliver the method according to the manual [ 36 ]. These are of course important questions that need to be addressed. However, it is important to acknowledge that these aspects seem to be entirely absent from patients’ and families’ descriptions of what is lacking or what is important in treatment. On the contrary, persons with an ED's desire treatment that is more flexible and individualised, with greater focus on their unique, individual situation. None of the systematic reviews in this study mentioned that patients or family had called for any specific method of treatment, instead they called for a more holistic and individually-adapted care. Since a significant proportion of ED patients discontinue treatment prematurely [ 37 ], and a common reason for this is lack of motivation [ 38 ], it is important that health care providers increase their knowledgeabout how patients and family members perceive the care provided, and what would motivate patients to stay in treatment.

Treatment manuals are a set of principles designed to be applicable to each individual patient. When delivered flexibly and skilfully there is no reason why individualised care should be in conflict with the use of treatment manuals [ 39 ]. However, many clinicians regard treatment manuals as constraining their practice and limiting the individualisation of interventions [ 39 ]. Against this background, and the findings of this study in terms of patients and relatives calling for a more holistic and individualised treatment, it seems that ED treatment faces a great challenge in integrating theory, research, clinical knowledge and the important perspectives of patients and their families in order to improve and adapt ED treatment. For this to be successful, it has been suggested that we need to expand the scope of treatment research and stimulate diversity within ED treatment and research [ 40 ].

Limitations and strengths

One limitation of this meta-review, which is a common problem in qualitative research syntheses, is the considerable variability in research aims, data collection approaches and methods of synthesis that were present in reviews as well as in the primary studies. Another problem that is difficult to avoid in qualitative syntheses is the possibility that the authors’ underlying assumptions may have introduced bias through selection of the experiences and views that are presented in the studies. The risk of overestimating the findings through data redundancy should also be considered, but is probably not a major problem in this meta-review since most of the included reviews had a unique focus and the study overlap was limited (Additional File 3 ).

In our quality assessment, we found that most systematic reviews that fulfilled our inclusion criteria were of high or moderate methodological quality. However, relatively few of the included reviews stated that they had followed the PRISMA or ENTREQ statement, and the compliance with these guidelines can indeed be enhanced – for example, by reporting how many reviewers were involved in the screening of studies and whether they worked independently (PRISMA checklist item 8)[ 41 ]. Other shortcomings in the included reviews were inadequate reporting of when in the progression of the disorder the data was collected, and inadequate information on the study authors’ competence in the field. In most reviews, however, a tool for critical appraisal of the original studies had been used, such as the CASP tool.

The major strengths of this meta-review are its broad scope – including three different perspectives of key informants – and the rigorous methodology of the literature screening, which involves systematic assessment of methodological limitations in the included reviews. The tool that we used for assessment of qualitative systematic reviews was developed in parallel to this meta-review and incorporates elements from the PRISMA guidelines [ 41 ] and the ENTREQ recommendations [ 16 ]. We believe that this tool can also be useful for other authors of qualitative meta-reviews. Another strength of the current study is the adequacy of the data. Most of the findings in our meta-review were based on at least three different systematic reviews and seven to 32 primary studies.

The study population and research needs

The included reviews focused mainly on anorexia nervosa (AN) or on EDs in general, without specifying a particular diagnosis. None of the identified reviews exclusively evaluated individuals with bulimia nervosa (BN) or binge eating disorder (BED), which was somewhat surprising. The possibility to generalise our findings to other EDs than AN is thus limited. To our knowledge, no systematic review that specifically focuses on experiences of BN or BED have been published after our literature search was performed. Considering the high prevalence of BN and BED that have been reported [ 6 ], there is a need to highlight experiences of these disorders in future qualitative systematic reviews.

Most of the included systematic reviews concerned both women and men with EDs, but men were underrepresented relative to their expected incidence, which possibly reflects the proportions of women and men that are studied in the primary qualitative studies of EDs. This is confirmed by a recent systematic review on men’s experiences of ED treatment[ 42 ], which identified only nine primary studies (not included in this review since it was published after our literature search). Since the prevalence of EDs is known to be higher among women, there might be a tendency to overlook the problem in men and boys. However, the prevalence of EDs among men has increased substantially over the last two decades and it is estimated that men and boys constitute 20% of all individuals with EDs [ 7 ]. Thus, there is an increasing need to acknowledge their experiences, which may not necessarily be interchangeable with those of girls and women.

Since our literature search was performed, a few additional systematic reviews have been published on EDs from the patients’, family members’ and/or health care professionals’ views. These mainly confirm our findings [ 43 – 45 ]. However, there are some interesting new results that build on preexisting knowledge and are worth mentioning. For example one systematic review focused exclusively on the experiences of males with an ED, and besides confirming the findings of this study regarding the call for an individual and person centered approach in treatment, it also added interesting results about recognition, help-seeking and treatment from a male perspective [ 42 ].

A systematic review by Johns et al. gave new insights about the perceptions of health care professionals, patients and their family members in terms of meeting professional staff with knowledge about EDs [ 12 ]. Another systematic review by Graham et al. described the dilemma faced by health care professionals using the key concept of “coping with caring without curing”, elegantly illustrating the dissonance between careers’ aspiration to help and the reality of their working situation [ 46 ].

To our knowledge, this is the first meta-review of qualitative systematic reviews focusing on experiences of EDs. The compilation acknowledges some important similarities and differences between the views of the three different informants, where health care professionals felt that the biomedical model was helpful, while patients and family members felt that it was insufficient and failed to address their psychological distress. Viewing these perspectives as complementary rather than conflicting may contribute to a better understanding of the complexity of treating EDs. Acknowledging experiences from various perspectives may eventually lead to adaptations in health care that can hopefully improve treatment compliance and recovery rates for individuals with EDs.

Our meta-review also indicates that there is a need for methodologically well conducted qualitative systematic reviews on EDs in which the population is clearly described regarding age, sex, and diagnosis. In particular, there is a need for systematic reviews on experiences regarding BN and BED.

Additional file 2. Tool for assessment of methodological limitations

Additional file 3. Table of overlapping primary studies

Acknowledgements

Not applicable.

Abbreviations

Anorexia nervosa

Binge eating disorder

Bulimia nervosa

The critical appraisals skills programme

Eating disorders

Enhancing transparency in reporting the synthesis of qualitative research

Authors' contributions

SAG: Study design, screening of full-text articles, data extraction, major contribution in thematic analysis and interpretation of data, major contribution in writing the manuscript. KS: Study design, screening of abstracts and full-text articles, data extraction control, assessment of methodological limitations, analysis and interpretation of data. HO: Design and execution of literature search. AP: Assessment of methodological limitations, analysis and interpretation of data. KWR: Study design, screening of abstracts and full-text articles, data extraction control, analysis and interpretation of data, major contribution in writing the manuscript. All authors have read and approved the final manuscript.

The project was funded by The Swedish Agency for Health Technology Assessment and Assessment of Social Services.

Availability of data and materials

All relevant data and information are provided in figures, tables and additional files. Additional in-depth information on methods etc. can be provided upon request from the authors.

Declarations

Ethics approval and consent to participate, consent for publication, competing interests.

The authors have no competing interests.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Sanna Aila Gustafsson, Email: [email protected].

Karin Stenström, Email: [email protected].

Hanna Olofsson, Email: [email protected].

Agneta Pettersson, Email: [email protected].

Karin Wilbe Ramsay, Email: [email protected], Email: [email protected].

• 1. Ágh T, Kovács G, Supina D, Pawaskar M, Herman BK, Vokó Z, et al. A systematic review of the health-related quality of life and economic burdens of anorexia nervosa, bulimia nervosa, and binge eating disorder. Eat Weight Disord. 2016;21(3):353–364. doi: 10.1007/s40519-016-0264-x. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 2. Hay P, Mitchison D, Collado AEL, González-Chica DA, Stocks N, Touyz S. Burden and health-related quality of life of eating disorders, including avoidant/restrictive food intake disorder (ARFID), in the Australian population. J Eat Disord. 2017;5:21. doi: 10.1186/s40337-017-0149-z. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 3. van Hoeken D, Hoek HW. Review of the burden of eating disorders: mortality, disability, costs, quality of life, and family burden. Curr Opin Psychiatry. 2020;33(6):521–527. doi: 10.1097/YCO.0000000000000641. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 4. Samuels KL, Maine MM, Tantillo M. Disordered eating, eating disorders, and body image in midlife and older women. Curr Psychiatry Rep. 2019;21(8):70. doi: 10.1007/s11920-019-1057-5. [ DOI ] [ PubMed ] [ Google Scholar ]
• 5. Ward ZJ, Rodriguez P, Wright DR, Austin SB, Long MW. Estimation of eating disorders prevalence by age and associations with mortality in a simulated nationally representative US Cohort. JAMA Netw Open. 2019;2(10):e1912925. [ DOI ] [ PMC free article ] [ PubMed ]
• 6. Qian J, Wu Y, Liu F, Zhu Y, Jin H, Zhang H, et al. An update on the prevalence of eating disorders in the general population: a systematic review and meta-analysis. Eat Weight Disord. 2021. [ DOI ] [ PMC free article ] [ PubMed ]
• 7. Qian J, Hu Q, Wan Y, Li T, Wu M, Ren Z, et al. Prevalence of eating disorders in the general population: a systematic review. Shanghai Arch Psychiatry. 2013;25(4):212–223. doi: 10.3969/j.issn.1002-0829.2013.04.003. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 8. National Institute for Health and Care Excellence. Eating Disorders: Recognition and Treatment. NICE guideline 69. London: National Institute for Health and Care Excellence (UK); 2017.
• 9. Hilbert A, Hoek HW, Schmidt R. Evidence-based clinical guidelines for eating disorders: international comparison. Curr Opin Psychiatry. 2017;30(6):423–437. doi: 10.1097/YCO.0000000000000360. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 10. Staples C, Grunewald W, Smith AR, Rancourt D. Advances in psychotherapy for eating disorders. Adv Psychiat Behav Health. 2021;1(1):13–23. doi: 10.1016/j.ypsc.2021.05.007. [ DOI ] [ Google Scholar ]
• 11. Steinhausen HC. Outcome of eating disorders. Child Adolesc Psychiatr Clin N Am. 2009;18(1):225–242. doi: 10.1016/j.chc.2008.07.013. [ DOI ] [ PubMed ] [ Google Scholar ]
• 12. Johns G, Taylor B, John A, Tan J. Current eating disorder healthcare services - the perspectives and experiences of individuals with eating disorders, their families and health professionals: systematic review and thematic synthesis. BJPsych Open. 2019;5(4):e59. [ DOI ] [ PMC free article ] [ PubMed ]
• 13. Lindstedt K, Neander K, Kjellin L, Gustafsson SA. Being me and being us - adolescents' experiences of treatment for eating disorders. J Eat Disord. 2015;3:9. doi: 10.1186/s40337-015-0051-5. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 14. Musolino C, Warin M, Wade T, Gilchrist P. Developing shared understandings of recovery and care: a qualitative study of women with eating disorders who resist therapeutic care. J Eat Disord. 2016;4:36. doi: 10.1186/s40337-016-0114-2. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 15. Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU). Eating disorders. An overview of systematic reviews of qualitative research from the perspectives of patients, health care professionals and family members. Stockholm: SBU; 2019. Report No.: 302.
• 16. Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012;12:181. doi: 10.1186/1471-2288-12-181. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 17. Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A. Rayyan-a web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. doi: 10.1186/s13643-016-0384-4. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 18. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa. [ DOI ] [ Google Scholar ]
• 19. Fogarty S, Elmir R, Hay P, Schmied V. The experience of women with an eating disorder in the perinatal period: a meta-ethnographic study. BMC Pregnancy Childbirth. 2018;18(1):121. doi: 10.1186/s12884-018-1762-9. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 20. Tierney S, McGlone C, Furber C. What can qualitative studies tell us about the experiences of women who are pregnant that have an eating disorder? Midwifery. 2013;29(5):542–549. doi: 10.1016/j.midw.2012.04.013. [ DOI ] [ PubMed ] [ Google Scholar ]
• 21. Thapliyal P, Hay P, Conti J. Role of gender in the treatment experiences of people with an eating disorder: a metasynthesis. J Eat Disord. 2018;6:18. doi: 10.1186/s40337-018-0207-1. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 22. Ali K, Farrer L, Fassnacht DB, Gulliver A, Bauer S, Griffiths KM. Perceived barriers and facilitators towards help-seeking for eating disorders: a systematic review. Int J Eat Disord. 2017;50(1):9–21. doi: 10.1002/eat.22598. [ DOI ] [ PubMed ] [ Google Scholar ]
• 23. Bezance J, Holliday J. Adolescents with anorexia nervosa have their say: a review of qualitative studies on treatment and recovery from anorexia nervosa. Eur Eat Disord Rev. 2013;21(5):352–360. doi: 10.1002/erv.2239. [ DOI ] [ PubMed ] [ Google Scholar ]
• 24. Eklund R, Salzmann-Erikson M. An integrative review of the literature on how eating disorders among adolescents affect the family as a system—complex structures and relational processes. MENT HEALTH REV J. 2016;21(3):213–230. doi: 10.1108/MHRJ-09-2015-0027. [ DOI ] [ Google Scholar ]
• 25. Duncan TK, Sebar B, Lee J. Reclamation of power and self: a meta-synthesis exploring the process of recovery from anorexia nervosa. Adv Eat Disord. 2015;3(2):177–190. doi: 10.1080/21662630.2014.978804. [ DOI ] [ Google Scholar ]
• 26. Espindola CR, Blay SL. Family perception of anorexia and bulimia: a systematic review. Rev Saude Publica. 2009;43(4):707–716. doi: 10.1590/S0034-89102009005000035. [ DOI ] [ PubMed ] [ Google Scholar ]
• 27. Espindola CR, Blay SL. Anorexia nervosa treatment from the patient perspective: a metasynthesis of qualitative studies. Ann Clin Psychiatry. 2009;21(1):38–48. [ PubMed ] [ Google Scholar ]
• 28. Espindola CR, Blay SL. Anorexia nervosa's meaning to patients: a qualitative synthesis. Psychopathology. 2009;42(2):69–80. doi: 10.1159/000203339. [ DOI ] [ PubMed ] [ Google Scholar ]
• 29. Fox JR, Dean M, Whittlesea A. The experience of caring for or living with an individual with an eating disorder: a meta-synthesis of qualitative studies. Clin Psychol Psychother. 2017;24(1):103–125. doi: 10.1002/cpp.1984. [ DOI ] [ PubMed ] [ Google Scholar ]
• 30. Medway M, Rhodes P. Young people’s experience of family therapy for anorexia nervosa: A qualitative meta-synthesis. Advances in Eating Disorders. 2016;4(2).
• 31. Sibeoni J, Orri M, Colin S, Valentin M, Pradere J, Revah-Levy A. The lived experience of anorexia nervosa in adolescence, comparison of the points of view of adolescents, parents, and professionals: A metasynthesis. Int J Nurs Stud. 2017;65:25–34. doi: 10.1016/j.ijnurstu.2016.10.006. [ DOI ] [ PubMed ] [ Google Scholar ]
• 32. Sibeoni J, Orri M, Valentin M, Podlipski MA, Colin S, Pradere J, et al. Metasynthesis of the views about treatment of anorexia nervosa in adolescents: perspectives of adolescents, parents, and professionals. PLoS ONE [Electronic Resource]. 2017;12(1):e0169493. [ DOI ] [ PMC free article ] [ PubMed ]
• 33. Stockford C, Stenfert Kroese B, Beesley A, Leung N. Women's recovery from anorexia nervosa: a systematic review and meta-synthesis of qualitative research. Brunner-Mazel Eating Disorders Monograph Series. 2018:1–26. [ DOI ] [ PubMed ]
• 34. de Vos JA, LaMarre A, Radstaak M, Bijkerk CA, Bohlmeijer ET, Westerhof GJ. Identifying fundamental criteria for eating disorder recovery: a systematic review and qualitative meta-analysis. J Eat Disord. 2017;5:34. doi: 10.1186/s40337-017-0164-0. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 35. Salzmann-Erikson M, Dahlen J. Nurses' establishment of health promoting relationships: a descriptive synthesis of anorexia nervosa research. J. 2017;26(1):1–13. [ DOI ] [ PMC free article ] [ PubMed ]
• 36. McHugh RK, Murray HW, Barlow DH. Balancing fidelity and adaptation in the dissemination of empirically-supported treatments: The promise of transdiagnostic interventions. Behav Res Ther. 2009;47(11):946–953. doi: 10.1016/j.brat.2009.07.005. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 37. Fassino S, Pierò A, Tomba E, Abbate-Daga G. Factors associated with dropout from treatment for eating disorders: a comprehensive literature review. BMC Psychiatry. 2009;9:67. doi: 10.1186/1471-244X-9-67. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 38. Gómez Del Barrio A, Vellisca Gonzalez MY, González Gómez J, Latorre Marín JI, Carral-Fernández L, Orejudo Hernandez S, et al. Characteristics of patients in an eating disorder sample who dropped out: 2-year follow-up. Eat Weight Disord. 2019;24(4):767–775. doi: 10.1007/s40519-017-0416-7. [ DOI ] [ PubMed ] [ Google Scholar ]
• 39. Waller G. Treatment protocols for eating disorders: clinicians' attitudes, concerns, adherence and difficulties delivering evidence-based psychological interventions. Curr Psychiatry Rep. 2016;18(4):36. doi: 10.1007/s11920-016-0679-0. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 40. Clinton D. Towards an ecology of eating disorders: creating sustainability through the integration of scientific research and clinical practice. Eur Eat Disord Rev. 2010;18(1):1–9. doi: 10.1002/erv.986. [ DOI ] [ PubMed ] [ Google Scholar ]
• 41. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J Clin Epidemiol. 2009;62(10):1006–1012. doi: 10.1016/j.jclinepi.2009.06.005. [ DOI ] [ PubMed ] [ Google Scholar ]
• 42. Richardson C, Paslakis G. Men's experiences of eating disorder treatment: A qualitative systematic review of men-only studies. J Psychiatr Ment Health Nurs. 2021;28(2):237–250. doi: 10.1111/jpm.12670. [ DOI ] [ PubMed ] [ Google Scholar ]
• 43. Conti JE, Joyce C, Hay P, Meade T. "Finding my own identity": a qualitative metasynthesis of adult anorexia nervosa treatment experiences. BMC Psychol. 2020;8(1):110. doi: 10.1186/s40359-020-00476-4. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 44. Eaton CM. Eating Disorder Recovery: A Metaethnography. J Am Psychiatr Nurses Assoc. 2020;26(4):373–388. doi: 10.1177/1078390319849106. [ DOI ] [ PubMed ] [ Google Scholar ]
• 45. Wetzler S, Hackmann C, Peryer G, Clayman K, Friedman D, Saffran K, et al. A framework to conceptualize personal recovery from eating disorders: A systematic review and qualitative meta-synthesis of perspectives from individuals with lived experience. Int J Eat Disord. 2020;53(8):1188–1203. doi: 10.1002/eat.23260. [ DOI ] [ PubMed ] [ Google Scholar ]
• 46. Graham MR, Tierney S, Chisholm A, Fox JRE. The lived experience of working with people with eating disorders: a meta-ethnography. Int J Eat Disord. 2020;53(3):422–441. doi: 10.1002/eat.23215. [ DOI ] [ PubMed ] [ Google Scholar ]
• 47. Noblit GWHR. Meta-ethnography: synthesizing qualitative studies. Newbury Park, CA: Sage; 1999. [ Google Scholar ]
• 48. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45. doi: 10.1186/1471-2288-8-45. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ]
• 49. Forsberg C WY. Att göra systematiska litteraturstudier [To conduct systematic literature reviews]. Stockholm: Natur & Kultur. 2013.
• 50. Willman A S, P, Bathsevani C. Evidensbaserad omvårdnad: En bro mellan forskning och klinisk verksamhet [Evidence-based nursing: A bridge between research and clinical practice]. Lund: Studentlitteratur. 2006.
• 51. Ritchie J SL, O’Connor W. Carrying out qualitative analysis. In: Ritchie J, Lewis J. (Eds.), Qualitative Research Practice: A Guide for Social Science Students and Researchers. Sage, London, Thousand Oaks, New Delhi. 2003.
• 52. Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53. [ DOI ] [ PubMed ]
• 53. Evans D. Systematic reviews of interpretive research: interpretive data synthesis of processed data. Aust J Adv Nurs. 2002;20(2):22-6. [ PubMed ]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Data availability statement.

• View on publisher site
• PDF (1021.9 KB)
• Collections

Similar articles

Cited by other articles, links to ncbi databases.

• Download .nbib .nbib
• Format: AMA APA MLA NLM

Add to Collections

• Open access
• Published: 15 November 2022

Conceptualizing eating disorder recovery research: Current perspectives and future research directions

• Heather Hower 1 , 2 ,
• Andrea LaMarre 3 ,
• Rachel Bachner-Melman 4 , 5 ,
• Erin N. Harrop 6 ,
• Beth McGilley 7 &
• Therese E. Kenny 8  

Journal of Eating Disorders volume  10 , Article number:  165 ( 2022 ) Cite this article

5545 Accesses

11 Citations

6 Altmetric

Metrics details

How we research eating disorder (ED) recovery impacts what we know (perceive as fact) about it. Traditionally, research has focused more on the “what” of recovery (e.g., establishing criteria for recovery, reaching consensus definitions) than the “how” of recovery research (e.g., type of methodologies, triangulation of perspectives). In this paper we aim to provide an overview of the ED field’s current perspectives on recovery, discuss how our methodologies shape what is known about recovery, and suggest a broadening of our methodological “toolkits” in order to form a more complete picture of recovery.

This paper examines commonly used methodologies in research, and explores how incorporating different perspectives can add to our understanding of the recovery process. To do this, we (1) provide an overview of commonly used methodologies (quantitative, qualitative), (2) consider their benefits and limitations, (3) explore newer approaches, including mixed-methods, creative methods (e.g., Photovoice, digital storytelling), and multi-methods (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), and (4) suggest that broadening our methodological “toolkits” could spur more nuanced and specific insights about ED recoveries. We propose a potential future research model that would ideally have a multi-methods design, incorporate different perspectives (e.g., expanding recruitment of diverse participants, including supportive others, in study co-creation), and a longitudinal course (e.g., capturing cognitive and emotional recovery, which often comes after physical). In this way, we hope to move the field towards different, more comprehensive, perspectives on ED recovery.

Our current perspectives on studying ED recovery leave critical gaps in our knowledge about the process. The traditional research methodologies impact our conceptualization of recovery definitions, and in turn limit our understanding of the phenomenon. We suggest that we expand our range of methodologies, perspectives, and timeframes in research, in order to form a more complete picture of what is possible in recovery; the multiple aspects of an individual’s life that can improve, the greater number of people who can recover than previously believed, and the reaffirmation of hope that, even after decades, individuals can begin, and successfully continue, their ED recovery process.

Plain English summary

How we research eating disorder (ED) recovery impacts what we know (perceive as fact) about it. In this paper we aim to provide an overview of the ED field’s current perspectives on recovery, discuss how our methodologies shape what is known about recovery, and suggest a broadening of our methodological “toolkits” in order to form a more complete picture of recovery. To do this, we (1) provide an overview of commonly used methodologies (quantitative, qualitative), (2) consider their benefits and limitations, (3) explore newer approaches, including mixed-methods, creative methods (e.g., Photovoice, digital storytelling), and multi-methods (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), and (4) propose a potential future research model with a multi-methods design, incorporating different perspectives (e.g., increasing recruitment of diverse participants, including supportive others in study co-creation), and a longitudinal course (e.g., capturing cognitive recovery, which often comes after physical). In this way, we seek to expand our picture of what is possible in recovery; the multiple aspects of an individual’s life that can improve, the greater number of people who can recover than previously believed, and the reaffirmation of hope that, even after decades, individuals can begin and continue their ED recovery process.

How we research the process of eating disorder (ED) recovery impacts what we know (perceive as fact) about this process. Traditionally, research has focused more on the “what” of recovery (e.g., establishing criteria for recovery, connecting research and clinical experiences, reaching consensus definitions) than the “how” of recovery research (e.g., timing and framing of ED recovery items and measures, type of methodologies, triangulation of perspectives). Given that our “ways of looking” are inextricably tied to what we are looking at [ 1 ] it is important to step back and investigate how research methods shape what we can know about a phenomenon of interest. This exploration can offer insight into missing pieces of the analytic puzzle (e.g., the current gaps in our knowledge), and invite novel ways of researching ED recovery (e.g., incorporating different perspectives).

ED recovery research that is published in peer-reviewed journals most frequently uses quantitative (numerical, “objective”) Footnote 1 statistical methods, or qualitative (descriptive, “subjective”) interview methods, in order to convey their findings. In this paper, we provide an overview of commonly used methods and outline key analytic features of various types of analyses that fit within these broader method categories. We also present an examination of these commonly used methods, reflecting on the benefits and limitations of each, and what each allows us to know, or not know, about ED recovery. Following this overview, we explore mixed-methods (quantitative and qualitative), creative methods (e.g., Photovoice, digital storytelling), and multi-methods (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), which may provide directions for future research, and enable new understandings of ED recovery.

Importantly, we are not suggesting that researchers abandon these commonly used quantitative or qualitative methods or that one approach is inherently better than others. Rather, we are recommending a broadening of our methodological “toolkits,” to increase the clarity of purpose of our studies, along with an alignment of the methods used. This may enable the development of more nuanced and specific insights about ED recoveries that take into account context, varied perspectives, and different positionalities. In this paper we thus aim to provide an overview of the ED field’s current perspectives on recovery, illuminate how those perspectives are necessarily informed by our methodological choices, and recommend broadening our methodological “toolkits” in order to form a more complete picture about what can be known as possible in recovery.

Ontological and epistemological stances in ED recovery research

The goal or purpose of ED recovery research depends largely on the ontological (the “what” of research) and the epistemological (the “how” of research) stances endorsed by the researcher [ 2 , 3 ]. This is often considered to be foundational in qualitative research, but is less frequently named in quantitative approaches. We give a brief overview of these stances here, because how a researcher views the world will inevitably impact the goal of the research and the methodological approaches used. In this way, we cannot present a discussion of recovery methodologies without also considering ontology and epistemology.

Ontological stance refers to what we believe can be known [ 4 , 5 ]. From a realist perspective, there is a single objective truth which exists [ 6 ]. On the other side, a relativist perspective suggests that there is no singular reality outside of human practices [ 7 ]. Researchers can therefore vary along this spectrum in terms of their assumptions about what knowledge exists.

Epistemology refers to how we can come to know this information [ 8 ]. For example, positivism argues that we can come to understand or know an objective reality through rigorous scientific practices [ 9 , 10 ]. This is the foundation of the scientific approach and what has often been referred to as the “hard sciences.” Recently, there has been a shift in which individuals from this perspective acknowledge that data collection and interpretation may be imperfect and influenced by researcher characteristics; what is now known as post-positivism [ 11 ].

Many of the quantitative approaches that will be discussed in this paper come from a post-positivist framework in that they assume there is an objective recovery “truth” that can be uncovered if we are rigorous in our approach and seek to minimize bias. On the other side, there are contextualist [ 12 ] and constructionist [ 13 ] epistemologies. Contextualism situates knowledge and the people who create it (e.g., participants, researchers) in a broader context, acknowledging that no one person can know everything. Constructionism argues that meaning is multiple, socially-constructed, and connected to wider systems of power. In this way, there is no one definition or understanding of a phenomenon.

The ontological/epistemological stance and research assumptions that dictate the approaches we take in turn inform debates on recovery. Those coming from different traditions will thus have different views of what can be known about the phenomenon. For example, the frames of (post)positivism typically underlie quantitative research, and researchers coming from this perspective have long been calling for a clear, consistent, and applicable definition of recovery (e.g., [ 14 , 15 , 16 , 17 ]). However, no overall consensus definition has been reached to date, which has several implications from a (post)positivist perspective. This lack of conceptual clarity, and between-study differences in measurement approaches, impact our ability to compare the findings between studies, including reported recovery rates, which can vary dramatically, depending upon the definitions and clinical groups used (e.g., [ 14 , 15 , 18 , 19 ]).

The belief that there is a need for a singular definition is one way of understanding the utility of recovery and may be useful for some groups. The intent of our paper, though, is not to provide a statement about what a consensus definition might be. Rather, we are offering a more diverse view of methodological perspectives (which stem from various ontological and epistemological stances) and ideas that might allow for forward movement in the field. In a dialectal format, this can involve both movement toward and away from consensus, including perspectives which do not seek to identify a single recovery definition. These paths are sometimes polarized, indicating that research aiming for (provisional) consensus is incompatible with research pushing into new areas. We suggest that both can be simultaneously pursued, acknowledging that one does not discount the other.

ED recovery research approaches: A brief overview

Quantitative research stemming from (post)positivist perspectives has tended to emphasize “objective” illness and recovery criteria that can be measured and compared in the lab/treatment, such as body mass index (BMI) (e.g., [ 20 ]), and behavioral/cognitive symptoms (e.g., [ 21 , 22 ]). For example, scores of validated ED measures such as the Eating Attitudes Test (EAT) [ 23 ] are frequently subdivided into “threshold” (criteria met for a probable clinical diagnosis) or “subthreshold” (diagnostic criteria unlikely to be met). Changes in measurable physical, behavioral, and symptomatic criteria are characteristic of the medical model of recovery, with a growing body of research suggesting that such approaches may not fit as well with lived experience perspectives [ 24 , 25 ].

In a systematic review of 126 studies looking at predictors of ED outcomes [ 26 ], symptom remission was used as a key outcome in over 80% of studies. This may differ from the “process” recovery criteria typically used in clinical settings, where the individual’s progress in therapy (e.g., how they navigate their recovery, showing improvements in not only symptoms, but also psychosocial functioning) may affect the extent to which they are deemed “recovered.”

A key element of these different definitions hinges on the extent to which symptom remission is considered an important first step in recovery. This point has often been promoted as self-evident, but is inconsistent with some orientations to recovery. For instance, a recovery model orientation, which has been noted to be potentially resonant with EDs (e.g., [ 27 ]) starts with an emphasis on a person’s goals and contexts, rather than assuming that symptom remission is a first step. This does not mean that “anything goes"; a recovery model promotes collaboration and discussion in exploring what recovery means and does for the person seeking it [ 28 , 29 ].

More recently, researchers have suggested that in alignment with this recovery model, it may be possible to continue to exhibit some symptoms (e.g., behaviors), but have improvement in other areas (e.g., improved psychosocial functioning, QOL), and still feel that one is in ED recovery (e.g., [ 27 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ]). ED advocacy groups led by people with lived experience are also beginning to support approaches to harm reduction within ED recovery circles, such as those promoted by Nalgona Positivity Pride. Indeed, there are now several ED-specific, standardized measures of functioning and QOL that can provide more insight in this area, including the Eating Disorders Quality of Life (EDQOL) [ 36 ], Quality of Life for Eating Disorders (QOL ED) [ 37 ], Health-Related Quality of Life in Eating Disorders Questionnaire (HeRQoLED) [ 38 ], Eating Disorders Quality of Life Scale (EDQLS) [ 39 ], and, more recently, the Eating Disorders Recovery Questionnaire (EDRQ) [ 40 ]. In addition to assessing QOL from a quantitative perspective, QOL can also be explored qualitatively, allowing it to be contextualized against the landscape of participants’ lives.

What is considered to “matter” in ED recovery definitions thus far also differs to some extent according to who is asked. Researchers, clinicians, and people with lived experience (individuals and supportive others such as parents, family, partners, friends, mentors) may emphasize different criteria for ED recovery [ 41 ]. Further, these categories are not distinct; people may simultaneously occupy multiple positionalities at once, such as researchers and/or clinicians who also have lived experience of ED. While a consensus definition among clinicians is arguably becoming a more plausible goal [ 16 ], there may still be significant divergence of opinion between the larger clinical, research, and lived experience spaces [ 18 ]. Nevertheless, Bachner-Melman et al. [ 42 ] also found a broad area of overlap in the perspectives of people with lived experience of an ED, family members, and ED therapists, on what recovery encompasses. They proposed a questionnaire to measure four aspects of ED recovery that were agreed on by these overlapping perspectives: lack of symptoms, acceptance of self and body, social and emotional connection, and physical health [ 20 ].

Lived experience, including personally having lived with an ED, as well as being a “support” for someone with an ED (e.g., parents, family, partners, friends, mentors), necessarily informs a particular person’s ED recovery definition and provides an additional lens on the same construct. Thus, individuals who have lived through an ED may have a different view of recovery to that of their “supports” (e.g., improved psychosocial functioning, QOL, vs. medical stability, decreases in behaviors, and vice versa). However, the recovery priorities of individuals and “supports” may also align. For example, recent studies have indicated that both individuals and parents/families place high value on increased body acceptance and independence in the individual’s recovery process [ 43 , 44 ]. In addition, there is a relatively new resource for partners of those with ED, which focuses on understanding, supporting, and connecting with the partner on shared recovery goals [ 45 ]. In the book “Loving Someone with an Eating Disorder,” Dana Harron includes perspective-taking exercises to help the person understand their partner’s struggle, strategies for dealing with mealtime challenges, up-to-date facts about EDs, and self-care tips to help the person maintain healthy boundaries [ 45 ].

Conceptual and methodological challenges in ED recovery research

Related to the above, researchers face a number of conceptual and methodological questions when exploring ED recovery. For example, whether or not recovery should be considered per individual ED, or trans-diagnostically, is an important question in the recovery definition literature. Bardone-Cone et al. [ 15 ] suggest that a transdiagnostic approach is most appropriate, given that diagnoses can shift, and symptoms can fluctuate over time. Indeed, longitudinal studies have indicated that participants report receiving a single ED diagnosis at one point in time, however, over their lifetime, they would have met criteria for two, three, or four “different” ED diagnoses at different times (e.g., [ 46 ]). Anecdotally, our co-authors have also noted this when recruiting participants for research. Instead of necessitating an overall cessation of ED symptoms within one diagnostic category in the traditional categorical approach, a transdiagnostic approach could rather focus on improving the status of individual symptoms (e.g., frequency of restricting, binging) as a marker of individual “recovery.”

Beyond differences in being able to compare clinical groups across research findings, we might also consider who is most commonly included in these recovery studies (and who is not). There are many significant logistical barriers to receiving an ED diagnosis and related treatment worldwide. Indeed, practical barriers include: cost, insurance coverage, rurality, transportation, work or education schedules, and lack of available childcare, which disproportionately affects people from potentially disadvantaged groups (e.g., [ 47 , 48 , 49 , 50 ]). The process of recovery itself invokes privilege (e.g., who is able to be diagnosed, who has access to formal treatment, and who is recovering in the “right way”). For example, EDs may be missed, or diagnoses delayed, in those who do not fit the stereotypical picture of a person with an ED, including those in larger, or non-emaciated, bodies [ 51 , 52 ].

The majority of the studies thus far on ED recovery definitions are therefore composed predominantly of non-diverse participant samples who have the means to overcome the barriers to treatment access (i.e., predominantly White, thin, socioeconomically privileged, cisgender women, drawn primarily from clinical settings). Indeed, there has been comparatively little research on other populations with EDs (e.g., cis men, trans and nonbinary people, children, elders, higher weight individuals, individuals with binge eating disorder [BED], comorbidities, or late onset), as these groups often do not have access to the diagnoses and treatments that are the gateway to research study participation. These limitations determine whose recoveries we can learn about, and excludes other experiences [ 18 , 53 , 54 ].

Traditionally, those with lived experience have not been invited to co-design recovery research, limiting study participation and the diversity of representation. Even when recovery research includes non-clinical samples, methodology choices impact who is selected for participation. For example, studies that exclude potential participants with BMIs above certain levels (e.g., BMIs that are considered “overweight” or “obese”) exclude many ED recovery experiences automatically, limiting the view of what “recovery” looks like.

Additionally, the specific terminology of “recovery” may not resonate with all people experiencing life beyond an ED [ 55 ], causing some potential participants to self-select out of such studies. Some people with lived experience note that the term “recovery” is prescribed and carries preconceptions [ 56 , 57 ]. Indeed, there are nuances and connotations involved with the use of the word “recovery.” Some individuals may consider themselves “in recovery” (on a continuous journey), while others may consider themselves “recovered” (having moved past the ED completely). In this way, the meaning of “recovery” can indicate both a process and a state [ 58 ]. Stringent criteria for including people in studies as “recovered” may pre-define the group with whom recovery is being explored. Other terminology, such as severe and enduring anorexia nervosa (SEAN), and severe and enduring eating disorders (SEED), emphasize more chronic conditions. However, these terms are not always helpful for people experiencing longer-lasting ED, as they may insinuate that healthcare providers (or the patient) have given up hope for recovery [ 59 , 60 , 61 , 62 ].

Given that “recovery” as a term does not resonate with all [ 55 , 63 , 64 , 65 ], using other terms, including non-clinical ones (e.g., “getting better”, “healing”) to refer to these experiences may increase the diversity of experiences in the literature. As we will explain, these methodological features matter in recovery research because they significantly impact what we can know about ED recovery, and for whom.

Positioning ourselves

We come into this work from various vantage points; we name our positionalities here, since researchers’ subjectivity inevitably shapes their research and interpretations [ 66 ]. Engaging with the subjective, rather than presuming objectivity is the most ethical and effective stance in research, and can invite opportunities to uncover new and different knowledge [ 67 ]. The authors bring research and clinical lenses to bear on this work; some of us are primarily or exclusively researchers in the ED field, whereas others also practice clinically. We come from Global North countries, and all of us are White. We were thus trained in scientific traditions that privilege certain ways of knowing and doing that reflect the English and White dominant landscape of academia. While most of us benefit from thin privilege, able-bodied privilege, and cis-hetero privilege, our authorship team also includes those with non-binary, queer, fat, and chronically ill identities. Some of us have lived experience with ED, and have used this to inform our research and clinical practice. Some of us are newer to the ED field, whereas others have been working in the field for over 30 years. While we are different in some ways, our sameness centers around the academic privilege we have to access, interpret and navigate these literatures and their methodologies.

Overview and analysis of ED research methods

Below we provide an overview of the commonly used quantitative and qualitative research methods, along with tables that illustrate examples of the different types of analyses that fit within these broader methodological categories. We also analyze the benefits and limitations of each method, focusing on what we can learn from them and identifying relevant gaps in the literature.

Quantitative methods

As noted above, quantitative methods typically stem from a (post)positivist ontological/epistemological stance, which inherently affects how data are interpreted and understood. This is a core consideration of how we in turn can view the findings. This approach aims to provide “objective” results [ 68 ]; in this case, it is “recovery by the numbers.” It allows for the measurement of results through data, relying on a systematic approach of empirical investigation, and based on the assumption that there is a singular recovery definition which can be known. Researchers use statistical models, computational techniques, and mathematics to develop and test specific hypotheses. The types of quantitative analyses range from relatively simple descriptive/comparative measures to more complex multivariate measures and multi-level designs (which are all influenced by their study samples, assessments, and testable hypotheses). Data can be collected from the traditional in-person research study (or through video conferencing), or alternatively, from participant surveys (e.g., online, phone, mail, text).

Different types of quantitative methods have been employed in ED recovery research (see Table  1 ). Descriptive studies focus on the “how/what/when/where,” rather than the “why” (e.g., examining aspects of recovery definitions [ 69 ]), and comparative studies have a procedure to conclude that one variable is better than another (e.g., comparing different recovery definitions for agreement [ 70 ]). Univariate analyses examine the statistical characteristics of a single variable (e.g., dichotomous yes/no variable differences between recovery groups on a single measure [ 33 ], continuous range variable differences between recovery groups on multiple measures [ 71 ]), while bivariate analyses determine the empirical relationship between two variables (X and Y) (e.g., relationships between recovery attitudes and related variables [ 72 ]). Multivariate analyses aim to determine the best combination of all possible variables to test the study hypothesis (e.g., comparing recovery and healthy control groups across different recovery scores [ 73 ]).

According to (post)positivist stances, these quantitative methods have the anticipated or theoretical benefits of enabling researchers to reach higher sample sizes (increases generalizability), randomize participants (reduces bias), and replicate results (validates data). In practice, though, generalizability extends only to the sample that is recruited (as noted above, in most cases, thin, White women), and randomization within that sample thus does not increase the diversity of results. The relative focus on “novel” research means that replication studies are not conducted to the degree we would hope or expect.

In addition, quantitative methods limit what can be known about any particular individual. For example, numbers can tell us a person’s standardized assessment scores, but they do not include the detailed descriptions of the individual’s experiences. They also reduce recovery to a single experience which may overlook the tremendous diversity in lived experiences. Similarly, while statistical analyses can account for contextual confounding variables, they cannot tell us the broader factors which influence the delivery and the function of interventions.

Qualitative methods

Overall, qualitative methods offer the potential to engage deeply with phenomenon of interest, often stemming from non-positivist epistemological stances (e.g., constructionist, feminist). While qualitative methods are commonly critiqued for small sample sizes, in a qualitative paradigm, small samples allow researchers to dig into the nuances illustrated in participants’ stories, strengthening study findings. The aim of qualitative research is in-depth, contextualized analysis, rather than generalizations. Qualitative methods often, but not always, involve interacting directly with participants in the form of interviews or focus groups. However, qualitative research can also involve analyses of existing textual or image data, such as blog or social media posts, or news articles. A core feature of qualitative research is the researchers’ focus on exploring meaning in voiced or textual data, vs. using only quantitative measures.

Despite shared features, qualitative methods vary enormously in terms of data collection and analysis types. This is due in part to the differences in theoretical basis, epistemologies, ontologies, and paradigms that inform what meaning researchers perceive as possible to achieve. Some (e.g., [ 74 ]) draw on the concepts of “big Q” and “small q” to differentiate in broad terms between the qualitative methods [ 75 ]. Briefly, “big Q” methods invite and acknowledge researcher subjectivity, whereas “small q” approaches attempt to aim at more “objective interpretation,” [ 76 ], which is more similar to (post)positivist approaches. Further, “big Q” approaches tend to delve into the connections between knowledge production, analysis, and sociocultural contexts in which research takes place, whereas “small q” approaches tend to focus more on descriptive, groundwork-laying analysis for quantitative methods to provide generalizability [ 76 ]. Neither approach is inherently “better;” they are designed to achieve distinct findings.

Some of the qualitative methods that have been commonly used to explore ED recovery experiences are summarized in Table  2 . Note that these are not the only methods used. Some (particularly earlier) studies, describe their methods as “qualitative,” without specifying the exact type(s) of analysis. The differences between these various types of methods are at times subtle.

Discourse Analysis (DA) focuses on language not as just a route to content, but as powerful in and of itself (e.g., analysis of talk about recovery) [ 77 , 78 ]. Within DA, Linguistic Analysis adds a focus on language present in the text, with more of an emphasis on terms used, and their connotations (e.g., explorations of Internet message board communications about recovery) [ 79 ]. Also within DA, Narrative-Discursive Analysis adds a focus on social power (e.g., analysis of recovery interviews with a gender lens [ 80 ]), alongside an emphasis on stories (individual and broader, social stories). Narrative Approaches emphasize the story (e.g., analyses of participant writing, life-history), and situates recovery within the broader culture [ 31 , 81 , 82 , 83 , 84 ]). Phenomenological and Phenomenographic Approaches, including Interpretive Phenomenological Analysis (IPA) aim to get in “close” to participant embodied experiences (e.g., focus on recovery self-process in specific groups such as men, former patients, people in recovery from AN specifically [ 85 , 86 , 87 ]). Grounded Theory emphasizes context-specific “ground-up” theory developed from participant responses (e.g., development of cyclical, phase, and process models of recovery in/outside of treatment contexts [ 65 , 88 , 89 , 90 , 91 ]). Thematic Analysis (TA) is aimed at developing patterns/themes based on data (e.g., exploring patterns in experiences of recovery [ 92 , 93 , 94 ]) and can look quite different depending on the type of thematic analysis employed, ranging from more descriptive to more analytical. Content Analysis summarizes and organizes experiences amongst a particular group in a particular context (e.g., describing the content of interviews with specific groups, for example, athletes, or exploring the content of a particular stage of recovery, such as late-stage recovery [ 95 , 96 , 97 , 98 , 99 ]).

It is also possible to use different qualitative methods to explore similar phenomenon. For example, a constructivist grounded theory exploration of people who have received treatment for AN may focus on theorizing what ED recovery processes are occurring for this particular group [ 99 , 100 ]. An IPA of this same group, meanwhile, may emphasize the development of a set of themes relating to shared perspectives on what the experience felt like [ 101 , 102 ].

Qualitative methods can thus provide detailed descriptions of a wide diversity of lived experiences. This enables us to have a broader perspective of what is possible in recovery. Additionally, these methods allow us to consider the contextual factors which influence the delivery and the function of interventions. A potential further benefit is the individual’s own process of reflecting on their changes in recovery (via study participation), which may provide insight and encouragement for continuing on their path.

Critiques of qualitative methods tend to center around the concept of generalizability, though as noted this is not typically the goal of qualitative approaches. As noted above, quantitative studies, which typically focus on a person’s ED standardized assessment scores, and account for contextual confounding variables through statistical analyses, theoretically generate findings which can be applied to other populations from the study sample. However, as we have indicated, extrapolation of the results of mostly homogenous groups (e.g., predominantly White, thin, socioeconomically privileged, cisgender women, drawn primarily from clinical settings) falsely assumes that the course and outcomes will be the same for all.

Exploration of mixed-methods, creative methods, and multi-methods research

While ED recovery researchers have primarily conducted either quantitative or qualitative studies, some have integrated alternative or multiple methods in their designs. Below we explore some of these methods, which may enable new understandings of ED recovery. These include mixed-methods (usually a weaving of quantitative and qualitative), creative methods (e.g., Photovoice, digital storytelling), and multi-methods (e.g., complementary combinations of quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations).

Mixed-methods (weaving of quantitative and qualitative)

It has been argued that mixed-methods allow us to weave together our quantitative and qualitative insights by acknowledging the benefits and limits of both designs. Cluster analysis intends to combine these methods with the goal of maximizing benefits [ 103 ]. For the qualitative aspects of the analysis, data is coded to themes using one of the qualitative methods, and each individual unit of data (e.g., person) is coded for the presence or absence of each theme. For the quantitative aspects of the analysis, data is plotted to identify different clusters of individuals, and then these clusters are interpreted via statistical methods. Cluster analysis aims to provide greater insight into groups of individuals, and potentially elucidate different clusters of “recovery definitions.” However, the qualitative analysis in this approach is inherently reductionistic (e.g., people are coded to create a quantitative measure), which aligns with the post-positivist stance associated with quantitative analyses. From this view, the approaches are not actually integrated; rather they are complimentary. Indeed, it may not be possible to truly integrate them when they emerge from different epistemological stances. We suggest, however, that integration is not needed.

Bachner-Melman et al. [ 42 ] used exploratory factor analysis to identify four factors that mapped onto ED recovery which had general agreement between participants with a lifetime ED diagnosis, healthy family members, and ED clinicians; (1) lack of symptomatic behavior, (2) acceptance of self and body, (3) social and emotional connection, and (4) physical health. These factors were then confirmed using confirmatory factor analysis. Utilizing more than one method thus expands our perspectives of ED recovery, allowing us to broaden our understanding of what can be known about recovery. Yet as noted above, we caution readers in viewing mixed-method approaches as an overall panacea; the approach tends to be more (post)positivist, and aims to quantify experiences, which may not be the goal for researchers from other stances. Again, this is not to say that the approach is without merit, but that it is important to acknowledge what it aims to do (or know).

Creative methods (photovoice, digital/verbal storytelling, collages, drawings)

Quantitative and qualitative methods are, of course, not the only options at the disposal of researchers interested in exploring ED recovery. Some researchers have elected to take creative approaches to research, seeking to explore recovery in different ways. Potentially, such methods enable researchers to “see” facets of recovery phenomenon that are less evident in methods that primarily hinge on either words or numbers [ 57 ]. To date, ED recovery researchers have used creative methods such as Photovoice [ 104 , 105 ], which aims to involve participants in the process of generating and analyzing research data [ 106 ]. This method may be particularly useful for generating disseminable results, with a view towards change in policy settings for the benefit of people in recovery [ 104 ].

Another creative method, digital storytelling [ 57 , 107 ], encourages participants to “story themselves” at a particular moment in time. This may enable the creation of more nuanced, rich, and person-centered depictions of recovery; the participant’s voice is centered in a way that may be less feasible in research that seeks to generate patterns across several participants’ accounts [ 107 ]. Like Photovoice, digital stories can also be used to work toward enhancing understandings of recovery amongst people who do not have lived experience (e.g., healthcare providers) [ 57 ].

Other creative methods include the use of collages, verbal storytelling, drawing,and more [ 108 , 109 , 110 ]. Placing the decision about which creative method to use in the hands of research participants may also enable a redressing of traditional power dynamics in research that position the researcher as the ultimate decision-maker [ 57 ].

Multi-methods (complimentary use of multiple methods)

Given that ED recovery is a complex phenomenon, one approach to exploring it is the use of a multi-method research design, including different complimentary types of analyses (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), and ideally from different perspectives (e.g., individuals, “supports,” clinicians, researchers, policy makers, and other stakeholders). Broadening our methodological “toolkits” may allow for more nuanced and specific insights about ED recoveries, taking into account context, varied perspectives, and positionalities.

Several studies of ED symptom assessment have employed multi-method designs thus far, and each of these has the potential to contribute a piece of the “ED recovery puzzle.” For example, Stewart et al. [ 111 ] conducted a mixed method investigation of the experiences young people, parents, and clinicians had of online ED treatment during COVID-19. They used a mixed quantitative (Likert scale rating questions) and qualitative (free text entry questions) survey which they analyzed using a summary approach (quantitative) and reflexive thematic analysis (qualitative). Leehr and colleagues [ 112 ] analyzed binge eating episodes under negative mood conditions via electroencephalography (EEG) and eye tracking (ET) in a laboratory.

Bartholome et al. [ 113 ] combined standardized instrument interviews, laboratory investigations, and ecological momentary assessment (EMA) to collect data on binge eating episodes in participants with BED. In order to examine underlying mechanisms of the somatic sensation of “feeling fat,” Mehak and Racine [ 114 ] used multiple methods of self-reports, EMA, heart rate variability, laboratory measurements of BMI, dual energy X-ray absorptiometry (DEXA) scans, and clothing sizes.

Technological advances can offer more in-depth information about the recovery process, and could be utilized further in research studies. For example, EMA allows for moment by moment collection of data on phenomenon of interest. This can include biological functions (e.g., heart rate), as well as feelings and behaviors in an individual’s daily life. This approach provides a more “real time” look into experiences (versus having to recall such experiences later on in a survey, or in an interview). In the case of ED recovery, future research can explore the answer to the question of what “active” recovery looks like on a daily basis for individuals via EMA (e.g., what challenges do individuals encounter; how does it impact their behavior/feelings?).

Other technological laboratory tools, such as fMRI, DEXA, and other scanning techniques, can add visual information about the current physical state of recovery (and any related functional “scars” from the ED). It may be helpful in future studies to provide this feedback so individuals can have an accurate picture of the medical status of their body, and make adjustments (e.g., take Vitamin D to increase bone density).

Additional methodological approaches/considerations

Co-design with different perspectives in ed recovery research.

We believe it will be helpful to incorporate different perspectives in ED recovery research for many reasons. For example, expanding who is included in our studies, what identities are represented, and those with both formal and informal treatment, will increase the participant representation, relevance, and generalizability of the findings [ 53 ]. This in turn will allow us to know more about the process of recovery for different individuals and groups, and will broaden our conceptualization of the phenomenon. Ideally, future research will include individuals with lived experiences and their “supports” (e.g., parents, families, partners, friends, mentors), as well as clinicians and researchers, in co-designing studies that could identify and assess aspects of ED recovery that are important to all of the constituents.

Longitudinal research design

We also underscore the need for an extended duration of studies in order to better understand the longitudinal course and outcome of individuals in ED recovery. This design will allow us to compare recovery operalizations vs. subsequent relapse rates, to track how perspectives of recovery develop and change over time (via quantitative, qualitative and mixed-method measures), and how these in turn affect an individual’s identity (e.g., [ 15 ]).

There are several areas of potential future longitudinal research. For example, follow-up on cognitive recovery (which we know tends to occur later (e.g., [ 43 ]), and how related timelines for this may impact subsequent relapse rates, tracking recovery changes over time with mixed or multi-methods designs in underrepresented populations (e.g., Atypical Anorexia (AAN) [ 115 ]), and holding on to hope, with more longitudinal data indicating that recovery is possible, even after decades (e.g., [ 59 ]).

Future research directions

Based on the above studies, we suggest some potential areas for future research, ideally incorporating multi-method designs to provide different perspectives on ED recovery. Recently, several themes have been identified in the literature as promising lines of research that may improve our understanding of ED, and increase the clinical application of findings.

Predictors of outcomes

Within quantitative research, Bardone-Cone et al. [ 15 ] note that predictors of outcomes, biological/neuropsychological techniques, and a focus on the SEAN population are newer, more nuanced, areas of investigation. In their systematic review and meta-analysis of predictors of ED treatment outcomes (at end of treatment [EoT], and follow-up), Vall and Wade [ 26 ] reported that the most robust predictor at both time frames was greater symptom change earlier in treatment. Other baseline predictors of better outcomes included: higher BMI, fewer binge/purge behaviors, more functional relationships (e.g., with family, friends), and greater motivation to recover. Of note, it is important to understand that higher BMI is in the context of a “higher” thin BMI, as most people with BMI > 25 are not included in studies of recovery. This is another example of how our methods and design choices impact what we can know.

Relatedly, one potential area for future ED quantitative predictor research is to build a Risk Calculator (RC), which is a statistical tool that identifies risk factors, and determines how likely an event is to happen for a particular person [ 116 ]. Physicians have used RCs clinically across an array of medical conditions, including stroke [ 117 ] and cancer [ 118 ]. There has been a recent turn toward integrating RCs into charting psychiatric disorder outcomes and treatment approaches; they have been used for psychosis [ 116 ], depression [ 119 ], and bipolar disorder [ 120 , 121 , 122 , 123 ]. This same technique could be applied to build a RC for personalized risk of ED onset/relapse, utilizing variables collected in research/treatment. A statistical combination of factors that reliably predict the non-occurrence of ED relapse could be a valuable addition to, predictor of, or even criterion, for full recovery. As part of these research initiatives, it will be important for researchers to employ diverse and longitudinal methods in order to obtain long-term, dynamic data.

In line with this, narrative qualitative analysis may be useful in elucidating predictors/risk factors for individuals. In this way, the (narrative) story that the person tells themselves about their recovery, and what was helpful to them, also has importance alongside any quantitative measures. Indeed, this perspective perhaps has more personal meaning, especially in contexts where minute changes identifiable through quantitative studies may be less relevant in the daily lives of their ED recovery.

Biological and neurological markers

Recent developments in the understanding of biological and neurological markers have enabled us to parse out what features may be involved with the ED “state” (which resolves with recovery), what features may onset premorbid to the ED (and will potentially continue after recovery), and what features may be “scars” (consequences of the ED). In their functional Magnetic Resonance Imaging (fMRI) study on participants who had recovered from AN, Fuglset et al. [ 124 ] reported increased activation in visual processing regions in anticipation of seeing images of food, with corresponding reduced activation in decision-making regions. While they found some normalization of the brain regions during recovery, other differences related to longer periods of starvation that appear later in life remained (residual “scars”).

Future quantitative research which incorporates longitudinal designs following the same participant cohort may elucidate more closely the timepoints during which the “state” and “scar” markers begin to emerge, in order to provide earlier interventions. In this instance, qualitative longitudinal studies could be beneficial here too. For example, participant narrative descriptions of ongoing biological changes in their recovery (e.g., feeling hungrier, not being able to tolerate hunger as well) not only reaffirm that people are noticing these internal bio markers, but provide the opportunity for them to discuss their day to day experiences of these lasting changes.

Recovery criteria

From a post-positivist perspective, there has been a longstanding call for standardized ED recovery criteria, typically involving weight, behavioral, and cognitive criteria (e.g., [ 14 , 15 , 16 , 17 ]). Drawing from the above, we suggest that research looking into recovery criteria may benefit from more diverse methodological approaches which pull from a variety of sources (e.g., clinicians, researchers, individuals with lived experience). For example, BMI has historically been used as an indicator of recovery status because it is readily obtained by ED researchers (and clinicians). While weight monitoring can be helpful in specific cases (e.g., those who are severely underweight or have lost a lot of weight in a short period of time), it is limited in use. Namely, BMI is insufficient to determine medical stabilization, it fails to take into account individual differences, and it can have negative impacts on treatment when individuals are discharged on the basis of weight alone [ 125 ]. Given these concerns, future research could discontinue the use of BMI as the “core” recovery criterion, as suggested by Kenny and Lewis [ 126 ], and instead focus on other variables that are more indicative of recovery over follow-up (e.g., Vall and Wade’s systematic review and meta-analysis findings of early symptom change during treatment as the most robust predictor of outcomes) [ 26 ].

Similarly, standardized assessments (e.g., EDE-Q, EDE, ED-LIFE) have been the “go-to” for assessing recovery outcomes in comparison to statistical norms. However, these measures are often developed by clinicians/researchers (thus reflecting what they feel is important in recovery) and in line with particular therapeutic modalities (e.g., the EDE-Q has a cognitive orientation). Thus, scores on these measures may not always match the person’s particular recovery aims and goals, nor the relative importance of particular behaviors in their lives. Employing these measures as a part of multi-methods designs with other types of assessments for comparison may offer the potential to think differently about these measures, and their role in assessing outcomes. We also suggest the need for measures co-designed with folks with lived experience and which reflect the diverse recovery elements described in qualitative studies (e.g., [ 33 ]).

The recovery process

Future research could compile more comprehensive lived experience narratives of changes in thought patterns through the recovery journeys (e.g., descriptions of how the “ED” voice began to leave, if ED voice is a relevant construct for the person), which could provide a more realistic timeline of this portion of the process for individuals and their “supports.” To begin to employ these kinds of measures in a way that opens up new possibilities, it would also be important to explore whether the ED-related ideas being measured resonate with the person whose recovery is being explored. Co-design processes may also be particularly relevant here, inviting people in recovery to be a part of research teams and take a role in determining the kinds of measures that could be used to assess recovery.

As years of ED behaviors and thoughts tend to impair different areas of psychosocial functioning (e.g., relationships, school/work, recreation, household duties), improvement in these areas, along with related QOL, tends to also lag behind physical recovery (e.g., [ 43 ]). Future research could further elaborate the timelines for which recovery in the different areas occurs, both from a group (e.g., through life story, narrative, or thematic analysis), and an individual (e.g., personal recording of recovery progress, case study approach) level. This approach offers a shift in methodological perspective, providing opportunity to conceptualize recovery differently.

Other areas for future consideration

Several studies (and informal support groups) have successfully employed recovered mentors, providing hope in recovery (e.g., [ 127 ]). Future research could examine more of the nuances of the mentorship role, including the characteristics of the mentor, the stage of recovery that the individual is in, and the dynamics of the mentor relationship. Further, taking a truly co-designed approach and, in particular, working with those who have not been included and heard in either treatment or research (not only more diverse participants, but their “supports,” including mentors), could offer new insight into recovery processes. Indeed, going forwards, we need to conduct our research differently if we want to incorporate the perspectives of those that we do not usually hear from.

Another area of study has developed around online (e.g., social media) use among those who are at risk for developing an ED, struggling with an ED, and those who are on the path to ED recovery. Analyses of online websites, blogs, and social media posts, along with their related potentially triggering content, have been conducted (e.g., [ 128 ]). However, on a positive note, this medium allows us to explore other methodological possibilities, including potentially focusing on reducing participant burden, and engaging with content from spaces where people are more “organically” describing these experiences, to get a sense of recovery outside of a clinical perspective. One possibility for future research is to combine the use of EMA with exposure to a range of different ED blog content (e.g., from triggering to supportive posts), in order to provide more proximal individual reaction information (e.g., EMA before exposure, EMA at exposure time, EMA after exposure time).

Proposed future research model: Dialectical movement towards and away from a consensus

The aim of this paper is to offer a more diverse view of methodological perspectives (which stem from various ontological and epistemological stances) and ideas that might allow for forward movement in the field. As noted above, in a dialectal format, this can involve both movement toward and away from a consensus, including perspectives which do not seek to identify a single recovery definition. We believe that both can be simultaneously pursued, acknowledging that one does not discount the other. We have outlined several potential areas to explore which do not necessarily depend upon a consensus definition. Here, for balance, we would like to propose a future research model that could guide us in a direction that may eventually lead to a consensus definition–or definition s . In effect, we are advocating for: (1) transparency in researchers’ epistemological stances; (2) more varied approaches to research in order to “see” different aspects of recovery experiences; and (3) collaboration between researchers and other stakeholders to generate new methodological approaches and insights about recovery.

Our proposed future research model is detailed in Table  3 . Based upon the studies we cited above, we suggest a multi-methods design (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), which incorporates different perspectives (e.g., expanding recruitment of participants that have been less represented in the literature, including “supportive” others), and extends the duration of studies to provide a more longitudinal outlook (e.g., capturing cognitive recovery, and improvement in psychosocial functioning/QOL, which often comes later, and noting how definitions of recovery may change over time for people). In this way, we hope to move the field towards different, more nuanced, and comprehensive perspectives on ED recovery.

In conclusion, we would like to encourage a creative, transparent, and thoughtful approach to ED recovery methodology, that considers what each of the methods allows us to engage with, or not, as the case may be. What we can (and do) know about recovery is intricately tied to our methodological and study design choices, which all have limits. Within this context, while there is a benefit to current pushes in the field to “come to consensus,“ these consensus definitions will necessarily leave out some people and experiences. This is especially the case for those who have not been meaningfully included in the research we have conducted to reach this consensus (e.g., people with lived experience, “non-traditional” patients, patients without access to treatment). Since there are so many different facets of recovery experiences, using different methodologies is imperative to develop a more complete understanding.

Indeed, it is important to acknowledge how the centrality of the method that is chosen to define ED recovery in turn influences how researchers and clinicians understand recovery, and how one moves towards it. New insights into recovery processes may depend on new methods of investigation. Thus, we suggest that some potential areas for future research ideally employ multi-method designs (e.g., quantitative, qualitative, creative methods, psycho/physiological, behavioral, laboratory, online observations), incorporate different perspectives (e.g., expanding recruitment of participants that have been less represented in the literature, including supportive others) and extend the duration of studies to provide a more longitudinal outlook (e.g., capturing cognitive recovery, which often comes later, and noting how definitions of recovery may change over time for people). In this way, we hope to move the field towards different, more nuanced, and comprehensive perspectives on ED recovery.

Availability of data and materials

Not applicable.

There are debates about the degree to which research can ever be truly objective or whether this is desirable. Here, we use objective and subjective in quotation marks to signal broader perceptions about these processes.

Abbreviations

Anorexia nervosa

Binge eating disorder

Body mass index

Bulimia Nervosa

Connectedness, hope and optimism, identity, meaning in life, empowerment

Dual energy X-ray absorptiometry

Eating attitudes test

• Eating disorders

Eating Disorders Recovery Endorsement Questionnaire

Eating Disorders Recovery Questionnaire

Eating Disorders Quality of Life Scale

Eating Disorders Quality of Life

Electroencephalography

Ecological momentary assessment

Eye tracking

Functional magnetic resonance imaging

Generalized estimating equations

Health-Related Quality of Life in Eating Disorders Questionnaire

Hierarchical linear models

Interpretive phenomenological analysis

Multivariate analysis of variance

National Institutes of Health

Risk calculator

Substance Abuse and Mental Health Services Administration

Severe and enduring anorexia nervosa

Severe and enduring eating disorder

Quality of life for eating disorders

Barad K. Meeting the Universe Halfway. Durham: Duke University Press; 2007.

Book   Google Scholar  

Slevitch L. Qualitative and quantitative methodologies compared: ontological and epistemological perspective. J Qual Assur Hosp Tour. 2011;12(1):73–81.

Article   Google Scholar  

Tuli F. The basis of distinction between qualitative and quantitative research in social science: reflection on ontological, epistemological and methodological perspectives. Ethiop J Educ Sci. 2010;6(1).

Duncan C, Cloutier JD, Bailey PH. Concept analysis: the importance of differentiating the ontological focus. J Adv Nurs. 2007;58(3):293–300.

Article   PubMed   Google Scholar  

Hofweber T. Logic and ontology. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. Stanford: The Metaphysics Research Lab, Center for the Study of Language and Information; 2021.

Google Scholar  

Hupcey JE, Penrod J. Concept analysis: examining the state of the science. Res Theory Nurs Pract. 2005;19(2):197–208.

Wilson J. Thinking with concepts. Cambridge: Cambridge University Press; 1963.

Setup M, Ram N. Epistemology. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. Stanford: The Metaphysics Research Lab, Center for the Study of Language and Information; 2020.

Macionis JJ, Gerber LM, Sociology (7th Canadian). Pearson, Canada: Pearson Canada; 2011.

Larrain J. The concept of ideology. London: Hutchison; 1979.

Phillips DC, Burbules NC. Postpositivism and educational research. Lanham & Boulder: Rowman & LIttlefield Publishers; 2000.

Stanley J. Knowledge and practical interests. New York: Oxford University Press; 2005.

Cakir M. Constructivist approaches to learning in science and their implications for science pedagogy: a literature review. Int J Environ Sci Educ. 2008;3(4):193–206.

Bardone-Cone AM, Harney MB, Maldonado CR, Lawson MA, Robinson DP, Smith R, et al. Defining recovery from an eating disorder: conceptualization, validation, and examination of psychosocial functioning and psychiatric comorbidity. Behav Res Ther. 2010;48(3):194–202.

Bardone-Cone AM, Hunt RA, Watson HJ. An overview of conceptualizations of eating disorder recovery, recent findings, and future directions. Curr Psychiatry Rep. 2018;20(9):79.

Wade TD, Lock J. Developing consensus on the definition of remission and recovery for research. Int J Eat Disord. 2020;53(8):1204–8.

Attia E, Blackwood KL, Guarda AS, Marcus MD, Rothman DJ. Marketing residential treatment programs for eating disorders: a call for transparency. Psychiatr serv. 2016;67(6):664–6.

McGilley BS.  J. Recipe for recovery: necessary ingredients for the client’s and clinician’s Success. In: Maine M, Bunnell, editors. New York: Elsevier; 2010.

Noordenbos G. Which criteria for recovery are relevant according to eating disorder patients and therapists? Eat Disord. 2011;19(5):441–51.

Solmi M, Wade TD, Byrne S, Del Giovane C, Fairburn CG, Ostinelli EG, et al. Comparative efficacy and acceptability of psychological interventions for the treatment of adult outpatients with anorexia nervosa: a systematic review and network meta-analysis. Lancet Psychiatry. 2021;8(3):215–24.

Treasure J, Duarte TA, Schmidt U. Eating disorders. Lancet. 2020;395(10227):899–911.

Waller G, Raykos B. Behavioral interventions in the treatment of eating disorders. Psychiatr Clin North Am. 2019;42(2):181–91.

Garner DM, Garfinkel PE. The eating attitudes test: an index of the symptoms of anorexia nervosa. Psychol Med. 1979;9(2):273–9.

Kenny TE, Trottier K, Lewis S. Lived experience perspectives on a model of eating disorder recovery in a sample of predominantly white women: a mixed method study. J Eat Disord. 2022;10(1):1–19.

McDonald S, Williams AJ, Barr P, McNamara N, Marriott M. Service user and eating disorder therapist views on anorexia nervosa recovery criteria. Psychol Psychother. 2021;94(3):721–36.

Article   PubMed   PubMed Central   Google Scholar  

Vall E, Wade TD. Predictors of treatment outcome in individuals with eating disorders: a systematic review and meta-analysis. Int J Eat Disord. 2015;48(7):946–71.

Dawson L, Rhodes P, Touyz S. “Doing the impossible”: the process of recovery from chronic anorexia nervosa. Qual Health Res. 2014;24(4):494–505.

Anthony WA. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehabilit J. 1993;24(9):159–68.

Wetzler S, Hackmann C, Peryer G, Clayman K, Friedman D, Saffran K, et al. A framework to conceptualize personal recovery from eating disorders: a systematic review and qualitative meta-synthesis of perspectives from individuals with lived experience. Int J Eat Disord. 2020;53(8):1188–203.

Jarman M, Walsh S. Evaluating recovery from anorexia nervosa and bulimia nervosa: integrating lessons learned from research and clinical practice. Clin Psychol Rev. 1999;19(7):773–88.

Dawson L, Rhodes P, Touyz S. Defining recovery from anorexia nervosa: a Delphi study to determine expert practitioners’ views. Adv Eat Disord: Theory Res Pract. 2015;3:165–76.

’t Slof-OpLandt MCT, Dingemans AE, de la Torre YRJ, van Furth EF. Self-assessment of eating disorder recovery: absence of eating disorder psychopathology is not essential. Int J Eat Disord. 2019;52(8):956–61.

de Vos JA, Radstaak M, Bohlmeijer ET, Westerhof GJ. Having an eating disorder and still being able to flourish? Examination of pathological symptoms and well-being as two continua of mental health in a clinical sample. Front Psychol. 2018;9:2145.

Emanuelli F, Waller G, Jones-Chester M, Ostuzzi R. Recovery from disordered eating: sufferers’ and clinicians’ perspectives. Eur Eat Disord Rev. 2012;20(5):363–72.

Noordenbos G, Seubring A. Criteria for recovery from eating disorders according to patients and therapists. Eat Disord. 2006;14(1):41–54.

Engel SG, Wittrock DA, Crosby RD, Wonderlich SA, Mitchell JE, Kolotkin RL. Development and psychometric validation of an eating disorder-specific health-related quality of life instrument. Int J Eat Disord. 2006;39(1):62–71.

Abraham SF, Brown T, Boyd C, Luscombe G, Russell J. Quality of life: eating disorders. Aust N Z J Psychiatry. 2006;40(2):150–5.

Las Hayas C, Quintana JM, Padierna A, Bilbao A, Munoz P, Madrazo A, et al. The new questionnaire health-related quality of life for eating disorders showed good validity and reliability. J Clin Epidemiol. 2006;59(2):192–200.

Adair CE, Marcoux GC, Cram BS, Ewashen CJ, Chafe J, Cassin SE, et al. Development and multi-site validation of a new condition-specific quality of life measure for eating disorders. Health Qual Life Outcomes. 2007;5:23.

Bachner-Melman R, Lev-Ari L, Zohar AH, Linketsky M. The Eating Disorders Recovery Questionnaire: psychometric properties and validity. Eat Weight Disord. 2021;26(8):2633–43.

Noordenbos G. When have eating disordered patients recovered and what do the DSM-IV criteria tell about recovery? Eat Disord. 2011;19(3):234–45.

Bachner-Melman R, Lev-Ari L, Zohar AH, Lev SL. Can recovery from an eating disorder be measured? Toward a standardized questionnaire. Front Psychol. 2018;9:2456.

Accurso EC, Sim L, Muhlheim L, Lebow J. Parents know best: caregiver perspectives on eating disorder recovery. Int J Eat Disord. 2020;53(8):1252–60.

Richmond TK, Woolverton GA, Mammel K, Ornstein RM, Spalding A, Woods ER, et al. How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians. Int J Eat Disord. 2020;53(8):1209–18.

Harron D. Loving Someone with an Eating Disorder. Oakland: New Harbinger Publications, Inc.; 2019.

Milos G, Spindler A, Schnyder U, Fairburn CG. Instability of eating disorder diagnoses: prospective study. Br J Psychiatry. 2005;187:573–8.

Becker AE, Franko DL, Speck A, Herzog DB. Ethnicity and differential access to care for eating disorder symptoms. Int J Eat Disord. 2003;33(2):205–12.

Cachelin FM, Rebeck R, Veisel C, Striegel-Moore RH. Barriers to treatment for eating disorders among ethnically diverse women. Int J Eat Disord. 2001;30(3):269–78.

Cachelin FM, Striegel-Moore RH. Help seeking and barriers to treatment in a community sample of Mexican American and European American women with eating disorders. Int J Eat Disord. 2006;39(2):154–61.

Ali K, Farrer L, Fassnacht DB, Gulliver A, Bauer S, Griffiths KM. Perceived barriers and facilitators towards help-seeking for eating disorders: a systematic review. Int J Eat Disord. 2017;50(1):9–21.

Lebow J, Sim LA, Kransdorf LN. Prevalence of a history of overweight and obesity in adolescents with restrictive eating disorders. J Adolesc Health. 2015;56(1):19–24.

Harrop EN, Mensinger JL, Moore M, Lindhorst T. Restrictive eating disorders in higher weight persons: a systematic review of atypical anorexia nervosa prevalence and consecutive admission literature. Int J Eat Disord. 2021;54(8):1328–57.

Egbert AH, Hunt RA, Williams KL, Burke NL, Mathis KJ. Reporting racial and ethnic diversity in eating disorder research over the past 20 years. Int J Eat Disord. 2022;55(4):455–62.

Mikhail ME, Klump KL. A virtual issue highlighting eating disorders in people of black/African and indigenous heritage. Int J Eat Disord. 2021;54(3):459–67.

Conti JE. Recovering identity from anorexia nervosa: women’s constructions of their experiences of recovery from anorexia nervosa over 10 years. J Constructivist Psychol. 2018;31(1):72–94.

Kenny TE, Thomassin K, Trottier K, Lewis SP. Views on the term ‘recovery’ in a sample of primarily white treatment-experienced women with lived eating disorder experience. Int J Eat Disord. Under Review.

LaMarre A, Rice C. Healthcare providers’ engagement with eating disorder recovery narratives: opening to complexity and diversity. Med Humanit. 2020;47:78–86.

Fava GA. The concept of recovery in affective disorders. Psychother Psychosom. 1996;65(1):2–13.

Eddy KT, Tabri N, Thomas JJ, Murray HB, Keshaviah A, Hastings E, et al. Recovery from anorexia nervosa and bulimia nervosa at 22-year follow-up. J Clin Psychiatry. 2017;78(2):184–9.

Dawson L, Rhodes P, Touyz S. The recovery model and anorexia nervosa. Aust N Z J Psychiatry. 2014;48(11):1009–16.

Touyz S, Hay P. Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm. J Eat Disord. 2015;3:26.

Calugi S, Milanese C, Sartirana M, El Ghoch M, Sartori F, Geccherle E, et al. The eating disorder examination questionnaire: reliability and validity of the Italian version. Eat Weight Disord. 2017;22(3):509–14.

LaMarre A, Rice C, Rinaldi J tracing fatness through the eating disorder assemblage. Thickening fat, 1st Edition: Routledge; 2019. pp. 64–76.

Shohet MN, Anorexia. “Full” and “struggling.” Genres  Recover Ethos. 2008;35(3):344–82.

Musolino C, Warin M, Wade T, Gilchrist P. Developing shared understandings of recovery and care: a qualitative study of women with eating disorders who resist therapeutic care. J Eat Disord. 2016;4:36.

Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001;358(9280):483–8.

Gough B, Madill A. Subjectivity in psychological science: from problem to prospect. Psychol Methods. 2012;17(3):374–84.

Matthews B, Ross L. Research methods. a practical guide for the social sciences. Harlow: Pearson Education; 2010.

Couturier J, Lock J. What is recovery in adolescent anorexia nervosa? Int J Eat Disord. 2006;39(7):550–5.

Ackard DM, Richter SA, Egan AM, Cronemeyer CL. What does remission tell us about women with eating disorders? Investigating applications of various remission definitions and their associations with quality of life. J Psychosom Res. 2014;76(1):12–8.

Cogley CB, Keel PK. Requiring remission of undue influence of weight and shape on self-evaluation in the definition of recovery for bulimia nervosa. Int J Eat Disord. 2003;34(2):200–10.

Dimitropoulos G, McCallum L, Colasanto M, Freeman VE, Gadalla T. The effects of stigma on recovery attitudes in people with anorexia nervosa in intensive treatment. J Nerv Ment Dis. 2016;204(5):370–80.

Bachner-Melman R, Zohar AH, Ebstein RP. An examination of cognitive versus behavioral components of recovery from anorexia nervosa. J Nerv Ment Dis. 2006;194(9):697–703.

Braun VC, Can V. I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Couns Psychother Res. 2021;21(1):37–47.

Kidder LH, Fine M. Qualitative and quantitative methods: when stories converge. Eval Policy. 1987;1987(35):57–75.

Clarke V. Navigating the messy swamp of qualitative research: are generic reporting standards the answer? In: Levitt HM, editor. Reporting qualitative research in psychology: how to meet APA Style journal article reporting standards, revised edition. Washington: American Psychological Association; 2020.

Hardin PK. Social and cultural considerations in recovery from anorexia nervosa: a critical poststructuralist analysis. ANS Adv Nurs Sci. 2003;26(1):5–16.

Keski-Rahkonen A, Tozzi F. The process of recovery in eating disorder sufferers’ own words: an Internet-based study. Int J Eat Disord. 2005;37(Suppl):S80-6 discussion S7-9.

Maison H, Bailey L, Clarke S, Treasure J, Anderson G, Kohn M. Un/imaginable future selves: a discourse analysis of in-patients’ talk about recovery from an eating disorder. Eur Eat Disord Rev. 2011;19(a):25–36.

Moulding N. Gendered intersubjectivities in narratives of recovery from an eating disorder. J Women Soc Work. 2016;31(1):70–83.

LaMarre A, Rice C. Normal eating is counter-cultural: embodied experiences of eating disorder recovery. J Commun Appl Soc Psychol. 2016;26:136–49.

Matusek JA, Knudson RM. Rethinking recovery from eating disorders: spiritual and political dimensions. Qual Health Res. 2009;19(5):697–707.

Patching J, Lawler J. Understanding women’s experiences of developing an ED and recovery: a life-history approach. Nurs Inq. 2009;12(1):10–21.

Redenbach J, Lawler J. Recovery from disordered eating: what life histories reveal. Contemp Nurse. 2003;15(1–2):148–56.

Bjork T, Wallin K, Pettersen G. Male experiences of life after recovery from an eating disorder. Eat Disord. 2012;20(5):460–8.

Bjork T, Ahlstrom G. The patient’s perception of having recovered from an eating disorder. Health Care Women Int. 2008;29(8):926–44.

Jenkins J, Ogden J. Becoming ‘whole’ again: a qualitative study of women’s views of recovering from anorexia nervosa. Eur Eat Disord Rev. 2012;20(1):e23–31.

D’Abundo M, Chally P. Struggling with recovery: participant perspectives on battling an eating disorder. Qual Health Res. 2004;14(8):1094–106.

Krentz A, Chew J, Arthur N. Can J Couns. 2005;39(2):118–35.

Lamoureux MMH, Bottorff JL. “Becoming the real me”: Recovering from anorexia nervosa. Heatlh Care for Women International. 2005;26:170–88.

Woods S. Untreated recovery from eating disorders. Adolescence. 2004;39(154):361–71.

PubMed   Google Scholar  

Hay PJ, Cho K. A qualitative exploration of influences on the process of recovery from personal written accounts of people with anorexia nervosa. Women Health. 2013;53(7):730–40.

LaMarre A, Rice C. Hashtag recovery: #eating disorder recovery on instagram. Soc Sci. 2017;6(3):68.

Lord VM, Reiboldt W, Gonitzke D, Parker E, Peterson C. Experiences of recovery in binge-eating disorder: a qualitative approach using online message boards. Eat Weight Disord. 2018;23(1):95–105.

Arthur-Cameselle JN, Quatromoni PA. A qualitative analysis of female college athletes’ eating disorder recovery experiences. Sport Psychol. 2014;28:334–46.

Lindgren BM, Enmark A, Bohman A, Lundstrom M. A qualitative study of young women’s experiences of recovery from bulimia nervosa. J Adv Nurs. 2015;71(4):860–9.

Nilsson K, Hagglof B. Patient perspectives of recovery in adolescent onset anorexia nervosa. Eat Disord. 2006;14(4):305–11.

Pettersen G, Thune-Larsen KB, Wynn R, Rosenvinge JH. Eating disorders: challenges in the later phases of the recovery process: a qualitative study of patients’ experiences. Scand J Caring Sci. 2013;27(1):92–8.

Charmaz K. The power of constructivist grounded theory for critical inquiry. Res Methods Eval. 2016;23(1):34–45.

Williams K, King J, Fox JR. Sense of self and anorexia nervosa: a grounded theory. Psychol Psychother. 2016;89(2):211–28.

Smith JA. Reflecting on the development of interpretive phenomenological analysis and its contribution to qualitative research in psychology. Qual Res Psychol. 2008;1(1):39–54.

Fox AP, Larkin M, Leung N. The personal meaning of eating disorder symptoms: an interpretative phenomenological analysis. J Health Psychol. 2011;16(1):116–25.

Henry D, Dymnicki AB, Mohatt N, Allen J, Kelly JG. Clustering methods with qualitative data: a mixed-methods approach for prevention research with small samples. Prev Sci. 2015;16(7):1007–16.

Saunders JF, Eaton AA. Social comparisons in eating disorder recovery: using photovoice to capture the sociocultural influences on women’s recovery. Int J Eat Disord. 2018;51(12):1361–6.

Saunders JF, Eaton AA, Aguilar S. From self(ie)-objectification to self-empowerment: the meaning of selfies on social media in eating disorder recovery. Comput Human Beh. 2020;111:106420.

Wang C, Burris MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health Educ Behav. 1997;24(3):369–87.

LaMarre A, Rice C. Embodying critical and corporeal methodology: digital storytelling With young women in eating disorder recovery. Forum Qual Soc Res. 2016;17:2.

Bartel H. A ‘Girls’ Illness?’ Using narratives of eating disorders in men and boys in healthcare education and research. In: Arts based health care research: a multidisciplinary perspective. Cham: Springer; 2022. p. 69-84.

Proszynski J. Interior designs: demolition and reconstruction of the self in eating disorder recovery through transformable collage book making (Doctoral dissertation, Pratt Institute). 2022.

Marzola E, Abbate-Daga G, Gramaglia C, Amianto F, Fassino S, Mobini S (ReviewingEditor). A qualitative investigation into anorexia nervosa: The inner perspective. Cogent Psychol 2015;2:1. https://doi.org/10.1080/23311908.2015.1032493 .

Stewart C, Konstantellou A, Kassamali F, McLaughlin N, Cutinha D, Bryant-Waugh R, et al. Is this the ‘new normal’? A mixed method investigation of young person, parent and clinician experience of online eating disorder treatment during the COVID-19 pandemic. J Eat Disord. 2021;9(1):78.

Leehr EJ, Schag K, Dresler T, Grosse-Wentrup M, Hautzinger M, Fallgatter AJ, et al. Food specific inhibitory control under negative mood in binge-eating disorder: Evidence from a multimethod approach. Int J Eat Disord. 2018;51(2):112–23.

Bartholome LT, Raymond NC, Lee SS, Peterson CB, Warren CS. Detailed analysis of binges in obese women with binge eating disorder: Comparisons using multiple methods of data collection. Int J Eat Disord. 2006;39(8):685–93.

Mehak A, Racine SE. Understanding “feeling fat” and its underlying mechanisms: the importance of multimethod measurement. Int J Eat Disord. 2020;53(9):1400–4.

Harrop E. “Maybe i really am too fat to have an eating disorder”: A mixed methods study of weight stigma and healthcare experiences in a diverse sample of patients with atypical anorexia (Doctoral dissertation). Seattle: University of Washington; 2020.

Fusar-Poli P, Rutigliano G, Stahl D, Davies C, Bonoldi I, Reilly T, et al. Development and validation of a clinically based risk calculator for the transdiagnostic prediction of psychosis. JAMA Psychiatry. 2017;74(5):493–500.

Nobel L, Mayo NE, Hanley J, Nadeau L, Daskalopoulou SS. MyRisk_stroke calculator: a personalized stroke risk assessment tool for the general population. J Clin Neurol. 2014;10(1):1–9.

Gail MH, Brinton LA, Byar DP, Corle DK, Green SB, Schairer C, et al. Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. J Natl Cancer Inst. 1989;81(24):1879–86.

Perlis RH. Pharmacogenomic testing and personalized treatment of depression. Clin Chem. 2014;60(1):53–9.

Hafeman DM, Merranko J, Goldstein TR, Axelson D, Goldstein BI, Monk K, et al. Assessment of a person-level risk calculator to predict new-onset bipolar spectrum disorder in youth at familial risk. JAMA Psychiatry. 2017;74(8):841–7.

Birmaher B, Merranko JA, Goldstein TR, Gill MK, Goldstein BI, Hower H, et al. A risk calculator to predict the individual risk of conversion from subthreshold bipolar symptoms to bipolar disorder I or II in youth. J Am Acad Child Adolesc Psychiatry. 2018;57(10):755–63 e4.

Birmaher B, Merranko JA, Gill MK, Hafeman D, Goldstein T, Goldstein B, et al. Predicting personalized risk of mood recurrences in youths and young adults with bipolar spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2020;59(10):1156–64.

Goldstein TR, Merranko J, Hafeman D, Gill MK, Liao F, Sewall C, et al. A risk calculator to predict suicide attempts among individuals with early-onset bipolar disorder. Bipolar Disord. 2022.

Fuglset TS, Landro NI, Reas DL, Ro O. Functional brain alterations in anorexia nervosa: a scoping review. J Eat Disord. 2016;4:32.

Phillipou A, Beilharz F. Should we shed the weight criterion for anorexia nervosa? Aust N Z J Psychiatry. 2019;53(6):501–2.

Kenny TE, Lewis SP. Reconceptualizing recovery: integrating lived experience perspectives into traditional eating disorder recovery frameworks. Psychiatr Serv. 2021;72(8):966–8.

Ramjan LM, Hay P, Fogarty S. Benefits of a mentoring support program for individuals with an eating disorder: a proof of concept pilot program. BMC Res Notes. 2017;10(1):709.

Wolf M, Thies F, Kordy H. Language use in eating disorder blogs: psychological implications of social online activity. J Lang Soc Psychol. 2013;32(2):212–26.

Download references

Acknowledgements

The authors wish to thank our colleagues in ED recovery.

None received.

Author information

Authors and affiliations.

Department of Psychiatry, Eating Disorders Center for Treatment and Research, University of California at San Diego School of Medicine, 4510 Executive Drive, San Diego, CA, 92121, USA

Heather Hower

Department of Health Services, Policy, and Practice, Hassenfeld Child Innovation Institute, Brown University School of Public Health, 121 South Main Street, Providence, RI, 02903, USA

School of Psychology, Massey University, North Shore, Private Bag 102-904, Auckland, 0632, New Zealand

Andrea LaMarre

Clinical Psychology Graduate Program, Ruppin Academic Center, 4025000, Emek-Hefer, Israel

Rachel Bachner-Melman

School of Social Work, Hebrew University of Jerusalem, Mt. Scopus, 9190501, Jerusalem, Israel

Graduate School of Social Work, University of Denver, 2148 S High Street, Denver, CO, 80208, USA

Erin N. Harrop

University of Kansas School of Medicine, 1010 N Kansas St, Wichita, KS, 67214, USA

Beth McGilley

Department of Psychology, Clinical Child and Adolescent Psychology, University of Guelph, 50 Stone Road East, Guelph, ON, N1G 2W1, Canada

Therese E. Kenny

You can also search for this author in PubMed   Google Scholar

Contributions

HH contributed to the conceptualization of the manuscript, the writing and editing of the abstract, introduction, quantitative text and table, mixed-methods, creative methods, multi-methods, future research, and conclusions sections, EndNote reference library/citations, formatting of the manuscript, and overall final revisions. AL contributed to the conceptualization of the manuscript, the writing and editing of the abstract, introduction, qualitative text and table, mixed-methods, creative methods, and conclusion sections, and overall final revisions. RBM contributed to the conceptualization of the manuscript, the writing and editing of the abstract, introduction, quantitative, and qualitative sections, and overall final revisions. EH contributed to the conceptualization of the manuscript, the writing and editing of the abstract, introduction, qualitative text and table sections, and overall final revisions. BM contributed to the conceptualization of the manuscript, the writing and editing of the abstract, introduction, qualitative, and mixed-methods sections, and overall final revisions. TK contributed to the conceptualization of the manuscript, the writing and editing of the epistemology and ontology sections, and discussion of these concepts through other sections, as well as overall final revisions. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Heather Hower .

Ethics declarations

Ethics approval and consent to participate, consent for publication, competing interests.

RBM is a Senior Editor of this Journal. All other authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Hower, H., LaMarre, A., Bachner-Melman, R. et al. Conceptualizing eating disorder recovery research: Current perspectives and future research directions. J Eat Disord 10 , 165 (2022). https://doi.org/10.1186/s40337-022-00678-8

Download citation

Received : 05 September 2022

Accepted : 25 October 2022

Published : 15 November 2022

DOI : https://doi.org/10.1186/s40337-022-00678-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Quantitative research
• Qualitative research
• Multi-methods research

Journal of Eating Disorders

ISSN: 2050-2974

• General enquiries: [email protected]

Click through the PLOS taxonomy to find articles in your field.

For more information about PLOS Subject Areas, click here .

Loading metrics

Open Access

Peer-reviewed

Research Article

40 years of research on eating disorders in domain-specific journals: Bibliometrics, network analysis, and topic modeling

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Software, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation School of Health Sciences, Universidad Peruana de Ciencias Aplicadas, Lima, Perú

• Carlos A. Almenara

• Published: December 15, 2022
• https://doi.org/10.1371/journal.pone.0278981
• Peer Review
• Reader Comments

Previous studies have used a query-based approach to search and gather scientific literature. Instead, the current study focused on domain-specific journals in the field of eating disorders. A total of 8651 documents (since 1981 to 2020), from which 7899 had an abstract, were retrieved from: International Journal of Eating Disorders (n = 4185, 48.38%), Eating and Weight Disorders (n = 1540, 17.80%), European Eating Disorders Review (n = 1461, 16.88%), Eating Disorders (n = 1072, 12.39%), and Journal of Eating Disorders (n = 393, 4.54%). To analyze these data, diverse methodologies were employed: bibliometrics (to identify top cited documents), network analysis (to identify the most representative scholars and collaboration networks), and topic modeling (to retrieve major topics using text mining, natural language processing, and machine learning algorithms). The results showed that the most cited documents were related to instruments used for the screening and evaluation of eating disorders, followed by review articles related to the epidemiology, course and outcome of eating disorders. Network analysis identified well-known scholars in the field, as well as their collaboration networks. Finally, topic modeling identified 10 major topics whereas a time series analysis of these topics identified relevant historical shifts. This study discusses the results in terms of future opportunities in the field of eating disorders.

Citation: Almenara CA (2022) 40 years of research on eating disorders in domain-specific journals: Bibliometrics, network analysis, and topic modeling. PLoS ONE 17(12): e0278981. https://doi.org/10.1371/journal.pone.0278981

Editor: Alberto Baccini, University of Siena, Italy, ITALY

Received: February 5, 2021; Accepted: November 27, 2022; Published: December 15, 2022

Copyright: © 2022 Carlos A. Almenara. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The data that support the findings of this study are publicly available from the OSF repository: https://osf.io/5yzvd/ (DOI: 10.17605/OSF.IO/5YZVD ).

Funding: Funding for this study was obtained from Universidad Peruana de Ciencias Aplicadas (A-006-2021).

Competing interests: The author has no competing interest to declare.

Introduction

There are a large and growing number of scientific publications on eating disorders (ED) [ 1 – 3 ]. ED are mental disorders characterized by a continuous disturbance in eating behavior, such as Anorexia Nervosa [ 4 ]. ED are usually defined according to manuals like the Diagnostic and Statistical Manual of Mental Disorders (DSM) [ 4 ]. The spectrum of ED can share some symptoms (e.g., fear of fatness ), and these symptoms negatively impact psychosocial functioning and physical health. Due to the complexity of ED like Anorexia Nervosa, scholar literature about them covers different disciplines, such as ED related to: visual arts (e.g., art history) [ 5 ], sociology (e.g., social history) [ 6 ] and even dentistry (e.g., oral health) [ 7 ]. Thus, ED literature has a broad diversity.

Previous bibliometric studies about ED have focused on: identifying the distribution by language, region and country, as well as topics and their trends [ 1 ], productivity trends and collaboration patterns [ 2 ], most cited works in Anorexia Nervosa research [ 8 ], cross-cultural aspects of ED [ 3 ], comparison of citations between types of journals [ 9 ], female authorship [ 10 ], secular trends in the scientific terminology [ 11 , 12 ], the gap between scientific research and clinical practice [ 13 ], the use of keywords [ 14 ], and network analyses of common terms used in the field [ 15 ]. In particular, the current study complements the work by He et al. [ 1 ].

A standard practice of these studies is to retrieve the literature by performing a systematic search in databases like Web of Science or Scopus (i.e., employing a query-based approach), although there are some caveats worth mentioning. As noted elsewhere [ 16 , 17 ], those two databases differ in journal coverage and their use can introduce bias favoring science publications (e.g., biomedicine) in detriment of arts and humanities, other than overrepresenting English-language journals. Second, databases in general (including others like PubMed, Dimensions, JSTOR), differ in their search engine functionality and information retrieval capabilities.

For example, some databases offer a controlled vocabulary like a thesaurus or taxonomy from which to choose the search terms (e.g., the Medical Subject Headings [MeSH] in PubMed), whereas others offer a full text search. Regarding the latter, indexing scanned documents to offer a full text search, requires pre-processing methods like optical character recognition (OCR), known to include typos, and post-OCR processing, both affecting information retrieval accuracy [ 18 – 23 ].

In other words, a query-based approach, although widely used, can be affected by several factors, including: domain expertise to design the most appropriate search strategy, the characteristics of the selected database(s), including indexation accuracy (e.g., due to OCR typos). The former is particularly important because scholars are not always consistent in using the terminology [ 24 ]. In fact, their selection of keywords is not systematic, but rather influenced by factors like their background knowledge and previous experience [ 25 ]. In this regard, within the field of ED, scholars are encouraged to use appropriate terminology [ 26 , 27 ], usually a controlled vocabulary such as the Thesaurus of Psychological Index Terms. This helps to optimize the Knowledge Organization Systems (KOS) of journals and databases, such as a controlled vocabulary for information retrieval [ 14 , 28 ].

In sum, most previous studies have employed a query-based search, being compelled to choose among different databases, search terms, and search strategies [ 29 ]. Nevertheless, this approach not necessarily recognizes the boundaries and limitations of both databases and we as humans interacting with machines, using diverse information retrieval strategies, and dealing with information overload [ 30 , 31 ].

An alternative to the query-based approach is the one proposed in this study: to select a set of specialty journals exclusively devoted to the study of ED. Although this sampling could seem arbitrary, it was adopted: (1) to complement the findings of previous studies [ 1 , 2 ] and (2) because it has in fact a sound base: the intellectual and social structure of knowledge [ 32 – 36 ]. We must recognize that documents need to be understood with regard to "the broader contexts in which they are produced, used, and cited" [ 37 , p. 42]. Thus, the following sections will explain how domain-specific journals are tightly tied to an organized social and disciplinary structure. Moreover, I will explain how this approach does not necessarily exclude all ED literature from non-domain-specific journals, but rather incorporates part of it into their citations. Finally, from a complex systems perspective, I will show how domain-specific journals can be conceived as a specialized subset from the larger and more complex network comprising all ED literature.

Domain-specific journals and its social structure

From a scientometric perspective, science, metaphorically conceived as a knowledge space or knowledge landscapes , can be defined in terms of a network of scholars that produce a network of knowledge [ 35 ]. In the former case, the social function of science has long been recognized (e.g., by Thomas Kuhn): scholars produce and communicate scientific knowledge and this organized activity has the characteristics of a social process [ 36 , 38 ]. More importantly, the patterns of interactions and communication within this social organization are tightly tied, rather than isolated, to the knowledge they produce [ 36 ].

An exemplary case is the role of journal editors as gatekeepers, with studies identifying editorial gatekeeping patterns [ 39 , 40 ]. According with the Network Gatekeeping Theory, inspired by the work of Kurt Lewin, gatekeeping refers to the control in the flow of information [ 41 , 42 ]. In the field of ED, this intellectual and social organization of knowledge can be seen in professional societies like the Academy of Eating Disorder, which since 1981 publishes the most renowned scientific journal: The International Journal of Eating Disorders. Within its editorial board, there are distinguished scholars that can act as gatekeepers to ensure quality control and that manuscripts published by the journal are in line with the aims and scope of it.

In sum, domain-specific journals have the goal of publishing information within the boundaries of their aims and scope, allowing the diffusion of specialized knowledge.

Domain-specific journals and its disciplinary organization

From a network perspective, specialty journals are also indicators of disciplinary organization [ 43 ], which exerts a non-trivial influence at both the global and local level of the network. To be more precise, if we visualize a network [e.g., 2 , 44 , 45 ], the local density of specialty journals evidence emerging patterns such as citation patterns by articles from the same journal or group of journals [ 43 ]. At the author level, these patterns reflect the local influence of specialty journals on scholars who adhere to their research tradition and their contributions help to advance a research agenda [ 46 ].

For example, domain-specific journals on ED often publish curated information from conferences [e.g., 47 ] or special issues about a specialized topic [e.g., 48 ], which commonly include a research agenda [ 48 ], setting the stage for future research. As we mentioned above, similar literature, such as special issues about ED published in other journals [e.g., 49 ], is not necessarily excluded in the analysis of domain-specific journals. Rather, such literature is commonly cited in documents from domain-specific journals and can be included in a citation analysis. Importantly, these citation patterns suggest that the former intellectual and social structure of knowledge constrains what is being studied in the future [ 46 ]. Thus, in the upcoming years, most of this specialized literature is expected to become an active research front [ 32 ], as evidenced by its high number of citations.

Finally, it is worth mentioning that the analysis of these patterns can reveal latent hierarchies and topological properties of journal networks. In fact, domain-specific journals can be identified through the study of the hierarchical organization of journal networks. When hierarchical network analysis is used to identify the capability of journals to spread scientific ideas, multidisciplinary journals are found at the top of the hierarchy, whereas more specialized journals are found at the bottom [ 50 , 51 ]. Similarly, significant articles from a specific domain have unique topological properties that can affect the dynamic evolution of the network [ 52 ]. In sum, it is important to recognize the topological properties of networks and their latent hierarchies, both at the journal level and document level. In our case, focusing on domain-specific journals, it would be like zooming into the most central part (core) of the network topology to analyze its organization and distinctive features. Indeed, this approach is commonly employed, for example, when studying network subsets such as niches or communities in complex systems.

Domain-specific journals and complex adaptive systems

Domain-specific journals can also be comprehended from a complex systems standpoint, as the aggregation of the intellectual, social, and citation patterns outlined above. According to the Structural Variation Theory [ 53 ], the body of scientific knowledge can be conceived as a complex adaptive system (CAS). As such, it can be described and studied as a complex network with a series of characteristics like non-linearity, emergence, and self-organization; and a series of social, conceptual, and material elements that evolve over time [ 46 ]. Ideally, we must study CAS holistically to understand the properties of the system at the macrolevel [ 54 ]. In our case, this would require including all scholar literature on ED, which could be attempted using a query-based approach and employing ad hoc methodologies (e.g., iterative citation expansion) [ 45 ]. However, complex systems emerge from rules and behavior of lower-level components, and there is growing interest in understanding complexity from its simplest and fundamental elements and patterns [ 55 , 56 ]. In our case, this can be accomplished by zooming into domain-specific patterns that emerge from the relational structure and organization of journals and papers [ 46 ], rather than focusing on the whole system which comprises all the scientific literature on ED.

This approach can be described in terms of modularity , a structural property of systems: the local density of specialty journals is indicative of a structural module or subsystem [ 57 ]. This property of complex systems is important because it recognizes, as we did above, the existence of subsets within networks. Indeed, scientometric studies usually attempt to detect communities based on the principle of modularity by grouping similar literature (i.e., clustering) [ 44 , 58 ]. However, in the approach used in this study, rather than using bibliographic connections (e.g., through co-citation analysis) to detect domain-specific literature, we can use logical connections [ 59 ], to identify modules that operate as domain-specific representations [ 60 ]. In other words, domain-specific journals can be seen as clusters of articles that are logically linked because they all pertain to a given domain, which is explicitly stated in the aims and scope of the journals.

This modular organization has some advantages over others such as a hierarchy (e.g., Scimago categorization of journals) or a cluster obtained by literature partitioning algorithms. First, it has the advantage of reducing both complexity bias and hierarchical bias . The former is the tendency to assume and adopt a more complex system (the opposite to Occam’s Razor: prefer the simplest explanation), which means to analyze all ED literature. The latter assumes that behavior is directed in a hierarchical fashion, where a central authority passes instructions to all agents in the system [ 54 ]. Second, although it still recognizes a hierarchical structure composed by diverse classes of subsystems, it assumes heterarchy [ 43 , 61 ], which means that both hierarchical and nonhierarchical elements can be present in a system; holarchy , which means that systems are composed of components that can be recognized as subsystems [ 62 ]; and glocal control , which means that local and global phenomena in a system are achieved by local actions [ 63 ]. In simple words, sampling a set of domain-specific journals reduces complexity without affecting assumptions such as a categorical hierarchy of journals.

The current study

To expand on previous studies [ 1 , 2 ], the current study aims to answer the following research questions:

Which are the most cited documents in this domain-specific corpus of articles?

Which are the most important authors and their collaboration networks?

Which are the most relevant topics in this domain-specific corpus of articles?

How have the identified topics evolved over time (since 1981 to 2020)?

To answer these questions, this study employs a hybrid methodology. First, basic bibliometrics will be performed to identify the most cited documents. Second, network analysis will be employed to identify the most important authors and their networks of collaboration. Third, text mining, natural language processing, and machine learning algorithms will be used to identify the most relevant topics (i.e., topic modeling). Finally, a simple time series analysis will be performed to examine the evolution of these topics over time. The procedure employed for the analyses is detailed in the methods section below (and S5 File ), whereas the dataset and the code to perform the analyses are shared in a public repository ( https://doi.org/10.17605/OSF.IO/5YZVD ), allowing the reproducibility of results [ 64 ].

Data collection

The methodology workflow is presented in Fig 1 .

• PPT PowerPoint slide
• PNG larger image
• TIFF original image

https://doi.org/10.1371/journal.pone.0278981.g001

First, in May 2020, a search of journals was performed in Scimago Journal Reports (SJR, https://www.scimagojr.com/ ), using the term “eating disorders”. In this step, the following five journals were identified: International Journal of Eating Disorders (ISSNs: 0276–3478, 1098-108X), European Eating Disorders Review (ISSNs: 1072–4133, 1099–0968), Eating Disorders (ISSNs: 1064–0266, 1532-530X), Eating and Weight Disorders (ISSNs: 1124–4909, 1590–1262), and Journal of Eating Disorders (ISSN: 2050-2974). The official website of each journal was then visited to confirm that the scope of the journal specifically includes the publication of research articles on eating disorders. It should be noted that the journal Advances in Eating Disorders (ISSNs: 2166–2630, 2166–2649) was not included because it was not found in SJR, it was published only between 2013 and 2016, it was incorporated into the journal Eating Disorders , and by the time of writing this article, it was not indexed neither in Scopus ( https://www.scopus.com ) nor in Web of Science ( https://www.webofknowledge.com ).

Next, also in May 2020, the Scopus database was chosen to retrieve the document records from the aforementioned journals. The election was made for no other reason than the capability of Scopus to retrieve several structured information (metadata, such as the abstract), and the file types for download are easy to manage, such as comma-separated values (CSV). Therefore, all document records published by these journals were searched in Scopus using the ISSN as the search term (e.g., ISSN (0276–3478) OR ISSN (02763478) OR ISSN (1098-108X) OR ISSN (1098108X) ). A total of 8651 documents between 1981 and 2020 were retrieved (of which 7899 had an abstract): 4185 (48.38%) from the International Journal of Eating Disorders, 1540 (17.80%) from Eating and Weight Disorders, 1461 (16.88%) from the European Eating Disorders Review, 1072 (12.39%) from Eating Disorders, and 393 (4.54%) from the Journal of Eating Disorders. These 8651 documents included a total of 213,744 references. It should be noted that the International Journal of Eating Disorders is the oldest of these journals, established in 1981. The S7 and S8 Files provide the number of documents per year and per journal. The document records were downloaded from Scopus both as comma separated values (CSV) and as BibTex ( http://www.bibtex.org/ ), and selecting all fields available (i.e., title, author, abstract, etc.). Due to copyright, the full text of all documents was not retrieved but rather their metadata (i.e, title, author, date, abstract), whilst the dataset shared online ( https://doi.org/10.17605/OSF.IO/5YZVD ) is the one obtained after the preprocessing procedures detailed below.

Analyses were performed using open software: R Statistical Software 4.0.3 (Bunny-Wunnies Freak Out) [ 65 ], and Python programming language version 3.9.1 ( https://www.python.org/ ).

Bibliometric analysis and network analysis in R

The biblioshiny application from the R package bibliometrix [ 66 ] was used to preprocess the CSV file. Next, it was used to identify the most cited documents. Local citations (i.e., citations only from documents whithin the dataset), and global citations (i.e., citations made by any document from the whole Scopus database), were computed. Biblioshiny was also used for network analysis as described by Batagelj & Cerinšek [ 67 ], and Aria & Cuccurullo [ 66 ]. Regarding the network, it is defined as a pair of sets: a set of nodes or vertices and a set of edges (link between nodes) [ 68 ]. In this study, when authors were treated as nodes, a link would represent co-authorship or collaboration [see 69 ]. More precisely, the Louvain algorithm for community detection [ 70 ] was used to identify communities within the collaboration network. This algorithm identifies densely connected nodes within the network (i.e., communities) [e.g., 71 ]. It works unconstrained to automatically extract a number of clusters although it requires basic network parameters as input. These network parameters were: up to 100 nodes, a minimum of two edges by node, and the removal of isolated nodes. For network layout visualization, the Fruchterman & Reingold [ 72 ] algorithm was chosen. Finally, common centrality measures were calculated: betweenness, closeness, and PageRank. Betweenness centrality refers to “the frequency that a node is located in the shortest path between other nodes” [ 73 , p. 772]. Closeness centrality refers to nodes that can easily reach others in the network, whilst PageRank , originally created to rank websites [ 74 ], has been used to rank authors because it takes into account the weight of influential nodes [ 75 ].

Topic modeling: Dimensionality reduction and matrix factorization

As can be seen in the workflow ( Fig 1 ), once network analysis was finished, a series of steps (detailed in S5 File ) were necessary to preprocess the dataset prior to topic modeling. Topic modeling refers to applying machine learning techniques to find topics by extracting semantic information from unstructured text in a corpus [ 76 ]. As we explain in S5 File , to this point we end up with a high-dimensional and sparse document-term matrix. In other words, we have many features (columns) each corresponding to a term in our corpus, and for a given document (rows) we have many columns with zero values meaning the term of that column is not in the given document. To deal with sparsity, we can perform dimensionality reduction to obtain a representation that effectively captures the variability in the data. In summary, dimensionality reduction can be categorized in feature extraction and feature selection ; the former combines the original feature space into a new one, whereas the latter selects a subset of features [ 77 ].

As explained in S5 File , the term frequency (TF) and the term frequency-inverse document frequency (TF-IDF) were used as feature extraction for vectorization. Then, the following machine learning algorithms were applied for topic modeling: Latent Dirichlet Allocation (LDA) [ 78 ], Latent Semantic Analysis (LSA or Latent Semantic Indexing) [ 79 ], Hierarchical Dirichlet Process (HDP) [ 80 ], and Non-negative Matrix Factorization (NMF) [ 81 ]. LDA is a generative probabilistic model that decomposes the document-term matrix into a topic-term matrix and a document-topic matrix, and it is commonly used for topic discovering from a corpus [e.g., 82 ]. LSA utilizes a truncated Singular Value Decomposition for decomposition and can work efficiently on TF or TF-IDF sparse matrices. In a fully unsupervised framework, the HDP model is characterized by inferring the number of topics on its own. Finally, NMF is an alternative approach that implements the Nonnegative Double Singular Value Decomposition, an algorithm suitable for sparse factorization [ 83 ].

First, the GENSIM library [ 84 ] was used for topic modeling because it provides a way to calculate topic coherence , an index to compare models based on measures of segmentation, probability estimation, confirmation measure, and aggregation [see 85 ]. Therefore, based on a TF matrix, HDP, LSA, NMF, and LDA were performed in GENSIM and compared in topic coherence. Once identified the topic modeling algorithms with the highest topic coherence, scikit-learn [ 86 ] was used because it provides an Exhaustive Grid Search option for ensemble learning the models (i.e., automatically fine-tuning the parameters to find the most optimal). Finally, once the topics were extracted, a simple time series analysis was performed to visualize the changes over time in the topics found. This analysis consisted of simply plotting the number of documents for each topic across years, from 1981 to 2020.

First, bibliometric analyses were performed to identify the most cited documents. Local citations are presented in Table 1 (and the S1 File ), whereas global citations are in Table 2 (and the S2 File ).

https://doi.org/10.1371/journal.pone.0278981.t001

https://doi.org/10.1371/journal.pone.0278981.t002

Next, a network analysis was performed to identify the most important authors ( Table 3 ) and their collaboration networks ( Fig 2 , see also S3 File , a dataset, and S4 File , an interactive visualization in HTML and JavaScript, also available online: https://osf.io/5yzvd/ ). This collaboration network analysis identified eight clusters with 96 authors: (1) red color, 4 authors; (2) blue, 15 authors; (3) green, 17 authors; (4) purple 21 authors; (5) orange, 2 authors; (6) brown, 18 authors; (7) pink, 2 authors; (8) grey, 17 authors.

https://doi.org/10.1371/journal.pone.0278981.g002

https://doi.org/10.1371/journal.pone.0278981.t003

Regarding the most relevant topics, LDA and NMF were superior to HDP and LSA in topic coherence. Then, when ensemble learning was used for LDA (based on TF) and NMF (based on TF-IDF), NMF provided the most meaningful results, and 10 topics were identified ( Table 4 ).

https://doi.org/10.1371/journal.pone.0278981.t004

The labels for the topics were manually added based on the top 10 keywords and their respective weights. Thus, each topic was manually labeled as follows: (1) risk factors for eating disorders, (2) body image dissatisfaction, (3) Binge Eating Disorder diagnosis, (4) weight loss, weight control, and diet, (5) clinical groups, (6) treatment outcome, (7) family and parent-child, (8) binge and purge episodes, (9) gender and subgroups, (10) EDNOS.

To examine how these topics have evolved over time, a simple time series analysis plot was created ( Fig 3 and S6 File ).

Note . Values in the y-axis are the sum of the weight values from the NMF analysis for topic dominance, per year and per topic. Values go from minimum 0 to maximum 11.2 (see S6 File ).

https://doi.org/10.1371/journal.pone.0278981.g003

This study analyzed 8651 documents between 1981 and 2020 from domain-specific journals in the field of eating disorders. The aims were: to identify the most cited documents, the most important authors and their collaboration networks, and the most relevant topics and their evolution over time. The results expand previous findings of studies that employed a query-based approach and included articles dating back as far as 1900 [ 13 ]. In particular the results expand the studies by Jinbo He et al. (2022) and Juan-Carlos Valderrama-Zurián, et al. (2017), which employed a similar methodology [ 1 , 2 ]. For example, He et al. (2022) created a collaboration network, although it was based on countries rather than authors [ 1 ]. Therefore, the results obtained here (e.g., author centrality measures, author clusters) provide a more fine grained understanding of the relevance and contribution of individual authors and their collaboration networks. Furthermore, He et al. (2022) [ 1 ] identified top authors based on traditional performance metrics (e.g., h-index), and it should be noted that there is some criticism towards their use and a claim to shift towards more responsible metrics of research excellence [ 87 ]. Then, He et al. (2022) [ 1 ] employed LDA for topic modeling, whilst this study employed NMF. Although LDA is largely used, in this study NMF outperformed LDA in interpretability, reproducibility, and as we said above, it suits better for short texts, as is the case of article abstracts used here. Finally, the top journals identified by He et al. (2022) confirmed that the five journals selected for this study are in fact among the most important in the field of eating disorders [ 1 ]. In the case of Valderrama-Zurián, et al. (2017) [ 2 ], they also focused on authors’ productivity trends whereas their social network analysis was focused on network metrics such as the number of nodes and edges over time, which precludes to inspect the social network at the author level. Therefore, this study also expands on the findings of Valderrama-Zurián, et al. (2017) [ 2 ].

Below, we discuss in more detail the results of the analysis employed to answer the four research questions outlined in the introduction.

Bibliometric analysis

The top cited documents were all from the International Journal of Eating Disorders. As noted above, this journal is the oldest one (it started in 1981), and it has the largest number of articles per year, with the exception of the year 2019 when it was outperformed by the Eating and Weight Disorders journal (see S7 and S8 Files). The majority of top cited documents were related to the development of instruments for the assessment of eating disorders or the course and outcome of eating disorders. For example, we can see in the results the most common instruments used for the screening of eating disorders, as well as the evaluation of its core symptoms: Eating Disorder Inventory (EDI), Body Shape Questionnaire (BSQ), Dutch Eating Behavior Questionnaire (DEBQ), and Eating Disorder Examination Questionnaire (EDE-Q). These instruments are widely used to screen the general population, as well as in clinical settings, together with more recent instruments [ 88 ]. It should be noted, however, that in clinical practice settings the use of instruments for the diagnosis and the different phases of the treatment process is not necessarily widespread [ 89 , 90 ]. To reduce this gap, some authors suggest to provide assessment training and/or assessment guidelines for mental health professionals and general practitioners in primary health care [ 91 , 92 ]. This can help obtain a comprehensive clinical assessment, particularly of individuals with higher risk such as young adolescents with restrictive Anorexia Nervosa [ 93 ]. The instruments mentioned above are reliable measures, and they could be used online for a quick screening or session by session for ongoing monitoring, although further research is necessary [e.g., 94 – 96 ].

The rest of most cited documents include important review articles on epidemiology (Hoek & van Hoeken, 2003, in Table 1 ); the course and outcome of eating disorders (Berkman, Lohr & Bulik, 2007; Strober, Freeman & Morrell, 1997; in Table 1 ); and the diagnosis of Binge Eating Disorder (Spitzer et al., 1992, 1993, in Table 1 ). These results are similar to previous studies in which measurement methods (including instrument development), epidemiology, and review articles were the most common type of document [ 8 , 9 ].

Finally, the large number of articles on the diagnosis of Binge Eating Disorder, which was not fully recognized as a mental disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until its fifth edition [ 4 ], reveal that the recognition of Binge Eating Disorder as an own disorder took several years. To reach expert consensus in a shorter time, eating disorder professionals should pay special attention to emerging eating problems, such as Orthorexia Nervosa [ 97 ].

Network analysis

The network analysis identified eight clusters with 96 authors. Previous studies have examined the network of authors in the field in terms of network statistics such as number of edges or network density [ 2 ]. By contrast, this study provides a more fine-grained network analysis, identifying experts and group of experts in the field of eating disorders. As seen in the results section, the majority are distinguished authors with contributions dating back to the early 1980s.

The author with the largest betweenness centrality was Ross D Crosby (Sanford Center for Biobehavioral Research, United States), followed by James E Mitchell (University of North Dakota, United States) which has the largest value in PageRank. Authors with high betweenness centrality can act as both enablers and gatekeepers of information flow between communities [ 75 ]. Moreover, it has been found that authors with high betweenness centrality establish more collaborations than those high in closeness centrality [ 75 ]. In summary, the results of centrality measures can help to identify experts in the field of eating disorders, particularly authors that can quickly reach other authors in the network (high in closeness), act as gatekeepers (high in betweenness), or relate to influential others (high in PageRank).

Regarding the clusters identified by the network analysis, in the same cluster of Ross D Crosby and James E Mitchell are found other renowned authors like Daniel Le Grange (University of California, San Francisco, United States), Stephen A Wonderlich (Sanford Center for Biobehavioral Research, United States), and Carol B Peterson (University of Minnesota, United States). Among the most relevant results of collaboration of this cluster we can find studies on the ecological momentary assessment of eating disorders [ 98 ], the psychometric properties of the EDE-Q [ 99 ], and the diagnosis of Binge Eating Disorder [ 100 ].

The second largest cluster includes authors like Cynthia M Bulik (University of North Carolina at Chapel Hill, United States), Walter H Kaye (University of California, San Diego, United States), and Katherine A Halmi (Weill Cornell Medical College, United States). The results of their collaboration include studies related to the phenotypic characterization of eating disorders, such as the International Price Foundation Genetic Study, a multisite study that included a large sample of patients with eating disorders and their families [e.g., 101 ].

Finally, the third largest cluster includes authors like Janet Treasure (King’s College London, England), Ulrike Schmidt (King’s College London, England), and Tracey D Wade (Flinders University, Australia), which are widely recognized by the Maudsley Model for Treatment of Adults with Anorexia Nervosa (MANTRA) [ 102 , 103 ]. Interestingly, this is the only cluster that includes collaborations with authors from non-English speaking countries, more specifically from Spain. Examples of these collaborations include studies resulting from the Wellcome Trust Case Control Consortium 3 (WTCCC3) and the Genetic Consortium for AN (GCAN) [ 104 ], and other studies with clinical samples in Spain [e.g., 105 ].

On the other hand, the results reveal the importance of multisite studies that strengthen collaboration and originate in relevant outcomes for the prevention and treatment of eating disorders. Research groups could look for opportunities to collaborate in multisite studies and strengthen both their interdisciplinary and transdisciplinary collaboration, and their collaboration with less common partners such as stakeholders and policy makers [ 106 , 107 ]. By establishing these integrative and strategic collaborations we can promote translational research, and thus helping to reach broader public health goals [ 108 ].

Topic modeling

The combination of TF-IDF and NMF provided meaningful results, identifying 10 topics. After labeling these topics based on the first 10 keywords and their respective weights, we can see that most of the research on eating disorders done in the past 40 years has focused on their prevention and treatment. Interestingly, the time trend analysis of these topics revealed a noticeable change in the first lustrum of the 1990s. Whereas during the early 1980s the study of clinical groups (topic 5) was the most dominant topic, from the mid-1990s, this topic was surpassed by the study of risk factors of eating disorders (topic 1). This indicates an increasing interest for the prevention rather than solely the treatment of eating disorders. This result is consistent with the historical shift that occurred in the United States when in 1992 the Institute of Medicine (IOM) Committee on Prevention of Mental Disorders was created [ 109 ]. Then two years later, a report on reducing risk factors for mental disorders and promoting a preventive approach in research was published [ 110 ]. As expected, this shift had echo in several scholars at the time, became a research front, and relevant publications started to include more information on the prevention of eating disorders, including a special issue [ 111 ], book chapters [ 112 ], and progressively entire books [ 113 ]. It is important to note that this historical shift, as well as later others like in 2017 [ 114 ], were favorable, because in other cases like obesity, it took more time to focus on its prevention due to different issues, including the pressure of the weight loss industry and its commercial interest [ 115 ].

Another interesting finding was that the outcome of the treatment of eating disorders (topic 6), is the second most important topic of 2013, and this finding has important aspects to discuss. First, the surge of state-of-the-art machine learning algorithms provide several opportunities to build intelligent systems for precision medicine. Thus, the treatment course and outcome of eating disorders can be more personalized, guided, and enhanced with the help of predictive technologies and intelligent systems [e.g., 116 ]. Second, as suggested elsewhere [ 117 ], the advantages of technology can be particularly relevant for certain age groups like adolescents, and when a digital intervention is employed [ 118 ]. In summary, treatment outcome is currently an important topic, and future studies can deploy digital interventions and machine learning algorithms for a more precise treatment planning.

Limitations and conclusions

Although this study has strengths, such as using data and code that allows the reproducibility of the results, readers should consider some limitations. First, the analysis of most cited documents is for all the time span, and more recent highly cited documents are underrepresented. Moreover, the journal Advances in Eating Disorders was not included due to indexing issues. Nevertheless, this study provides the code and a detailed procedure to allow researcher to perform further analyses, such as document co-citation analysis. Future studies can also evaluate the Mexican Journal of Eating Disorders ( Revista Mexicana de Trastornos Alimentarios , ISSN 2007-1523), which has published articles primarily in Spanish [ 119 ]. Second, the network analysis included close to 100 scholars mostly with a long trajectory in the field, and this can be a limitation in representing more younger scientists or newcomers [ 2 ]. Future studies can focus on a larger number of scholars and apply different techniques in network analysis, such as other community detection techniques [e.g., 120 ]. Finally, the results of topic modeling suggested a solution of 10 topics out of up to 30 topics solution models tested. Although there is not a universally accepted approach to establish the number of topics, this study relied on several strategies, including ensemble learning, to automatically fine-tune the parameters of the machine learning algorithms, stability, and heuristic approaches [ 121 ]. Future studies can try other machine learning algorithms and techniques to retrieve topics [ 121 ].

In conclusion, this study analyzed 40 years of research on eating disorders, identified the most cited articles, networks of collaboration, experts in the field, and the 10 major topics in the field.

Supporting information

S1 file. most local cited documents..

https://doi.org/10.1371/journal.pone.0278981.s001

S2 File. Most global cited documents.

https://doi.org/10.1371/journal.pone.0278981.s002

S3 File. Network statistics.

https://doi.org/10.1371/journal.pone.0278981.s003

S4 File. Network of collaboration including close to one hundred authors.

https://doi.org/10.1371/journal.pone.0278981.s004

S5 File. Data preprocessing and text representation in Python.

https://doi.org/10.1371/journal.pone.0278981.s005

S6 File. Sum of NMF results for topic dominance per year and per topic.

https://doi.org/10.1371/journal.pone.0278981.s006

S7 File. Number of documents per year and per journal.

https://doi.org/10.1371/journal.pone.0278981.s007

S8 File. Trends over time in number of documents per journal.

https://doi.org/10.1371/journal.pone.0278981.s008

• View Article
• PubMed/NCBI
• Google Scholar
• 4. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
• 6. Mennell S. All manners of food: Eating and taste in England and France from the Middle Ages to the present. Oxford, UK: Basil Blackwell; 1985.
• 21. Savoy J, Naji N. Comparative information retrieval evaluation for scanned documents. In: Proceedings of the 15th WSEAS International Conference on Computers. Stevens Point, Wisconsin, USA: World Scientific and Engineering Academy and Society (WSEAS); 2011. p. 527–534. https://doi.org/10.5555/2028299.2028394
• 23. De S, Stanley RJ, Cheng B, Antani S, Long R, Thoma G. Automated text detection and recognition in annotated biomedical publication images. Information Resources Management Association, editor. Medical Imaging: Concepts, Methodologies, Tools, and Applications. Hershey, PA: IGI Global; 2017. p. 457–489. https://doi.org/10.4018/978-1-5225-0571-6.ch018
• 28. Hlava MMK. The taxobook: Principles and practices of building taxonomies. Morgan & Claypool; 2015. (Synthesis Lectures on Information Concepts, Retrieval, and Services). https://doi.org/10.2200/S00603ED1V02Y201410ICR036
• 33. Crane D. Invisible colleges: Diffusion of knowledge in scientific communities. University of Chicago Press; 1972.
• 34. Merton RK. The sociology of science: Theoretical and empirical investigations. University of Chicago Press; 1973.
• 35. Börner K, Boyack KW, Milojević S, Morris S. An introduction to modeling science: Basic model types, key definitions, and a general framework for the comparison of process models. In: Scharnhorst A, Börner K, van den Besselaar P, editors. Models of science dynamics: Encounters between complexity theory and information sciences. Berlin: Springer; 2012. p. 3–22. (Understanding Complex Systems). https://doi.org/10.1007/978-3-642-23068-4
• 36. Whitley R. The intellectual and social organization of the sciences. 2nd ed. Oxford University Press; 2000.
• 37. Hjørland B. Informetrics needs a foundation in the theory of science. In: Sugimoto CR, editor. Theories of informetrics and scholarly communication. De Gruyter; 2016. p. 20–46. https://doi.org/10.1515/9783110308464-005
• 38. Vitanov NK. Science and society: Assessment of research. In: Vitanov NK, editor. Science dynamics and research production: Qualitative and quantitative analysis of scientific and scholarly communication. Cham: Springer International Publishing; 2016. p. 3–52. (Qualitative and Quantitative Analysis of Scientific and Scholarly Communication). https://doi.org/10.1007/978-3-319-41631-1_1
• 40. McGinty S. Gatekeepers of knowledge: Journal editors in the sciences and the social sciences. Westport, CT: Bergin & Garvey; 1999.
• 53. Chen C, Song M. Representing scientific knowledge: The role of uncertainty. New York, NY:Springer; 2017. https://doi.org/10.1007/978-3-319-62543-0
• 54. Carmichael T, Hadžikadić M. The fundamentals of complex adaptive systems. In: Carmichael T, Collins AJ, Hadžikadić M, editors. Complex adaptive systems: Views from the physical, natural, and social sciences. New York, NY: Springer; 2019. p. 1–16. (Understanding Complex Systems). https://doi.org/10.1007/978-3-030-20309-2_1
• 55. Wolfram S. Complex systems theory. In: Pines D, editor. Emerging syntheses in science: Proceeding of the founding workshops of the Santa Fe Institute. Santa Fe, NM: Santa Fe Institute; 2019. p. 299–307. https://doi.org/10.1201/9780429492594-18
• 56. Wolfram S. A project to find the fundamental theory of physics. Manitoba, Canada: Wolfram Media, Inc.; 2020.
• 57. Northrop RB. Introduction to complexity and complex systems. Boca Raton, FL: CRC Press; 2011. https://doi.org/10.1201/9781439894989
• 62. Mobus GE, Kalton MC. Principles of systems science. Springer; 2015. (Understanding Complex Systems). https://doi.org/10.1007/978-1-4939-1920-8
• 63. Hara S, Imura J, Tsumura K, Ishizaki T, Sadamoto T. Glocal (global/local) control synthesis for hierarchical networked systems. In: 2015 IEEE Conference on Control Applications (CCA). Sydney, Australia: IEEE; 2015. p. 107–12. https://doi.org/10.1109/CCA.2015.7320618
• 65. R Core Team. R: A language and environment for statistical computing. Vienna, Austria; 2020.
• 68. Menche J, Barabási A-L. Introduction to network analysis. In: Loscalzo J, Barabási A-L, Silverman EK, editors. Network medicine: Complex systems in human disease and therapeutics. Cambridge, MA: Harvard University Press; 2017. p. 17–43. https://doi.org/10.4159/9780674545533-003
• 75. Milojević S. Network analysis and indicators. In: Ding Y, Rousseau R, Wolfram D, editors. Measuring scholarly impact: Methods and practice. Cham: Springer International Publishing; 2014. p. 57–82. https://doi.org/10.1007/978-3-319-10377-8_3
• 76. Chen Z, Liu B. Topic models for NLP applications. In: Sammut C, Webb GI, editors. Encyclopedia of machine learning and data mining. 2nd ed. New York, NY: Springer; 2017. p. 1276–80. https://doi.org/10.1007/978-1-4899-7687-1_906
• 77. Alelyani S, Tang J, Liu H. Feature selection for clustering: A review. In: Aggarwal CC, Reddy CK, editors. Data clustering: Algorithms and applications. Boca Raton, FL: CRC Press; 2014. p. 29–60. (Data Mining and Knowledge Discovery Series). https://doi.org/10.1201/9781315373515-2
• 79. Landauer TK. LSA as a theory of meaning. In: Landauer TK, McNamara DS, Dennis S, Kintsch W, editors. Handbook of latent semantic analysis. Mahwah, NJ: Lawrence Erlbaum Associates; 2011. p. 3–34. https://doi.org/10.4324/9780203936399-5
• 80. Wang C, Paisley J, Blei DM. Online variational inference for the Hierarchical Dirichlet Process. In: Gordon G, Dunson D, Dudík M, editors. Proceedings of the Fourteenth International Conference on Artificial Intelligence and Statistics (PMLR). PMLR; 2011. p. 752–60.
• 84. Řehůřek R, Sojka P. Software framework for topic modelling with large corpora. In: Proceedings of the LREC 2010 Workshop on New Challenges for NLP Frameworks. Valletta, Malta: ELRA; 2010. p. 45–50. Available from: http://www.fi.muni.cz/usr/sojka/presentations/lrec2010-poster-rehurek-sojka.pdf
• 85. Röder M, Both A, Hinneburg A. Exploring the space of topic coherence measures. In: Proceedings of the Eighth ACM International Conference on Web Search and Data Mining. New York, NY, USA: Association for Computing Machinery; 2015. p. 399–408. (WSDM ‘15). https://doi.org/10.1145/2684822.2685324
• 87. Tijssen R. Re-valuing research excellence: From excellentism to responsible assessment. In: Kraemer-Mbula E, Tijssen R, Wallace ML, McLean R, editors. Transforming research excellence: New ideas from the global south. Cape Town, South Africa: African Minds; 2020. pp. 59–78.
• 88. Thomas JJ, Roberto CA, Berg KC. Assessment measures, then and now: A look back at seminal measures and a look forward to the brave new world. In: Walsh BT, Attia E, Glasofer DR, Sysko R, editors. Handbook of assessment and treatment of eating disorders. Arlington, VA: American Psychiatric Publishing; 2016.
• 109. Levine MP, Smolak L. Introduction to prevention. In: Levine MP, Smolak L, editors. The prevention of eating problems and eating disorders: Theories, research, and applications. 2nd ed. New York, NY: Routledge; 2020. p. 3–16. https://doi.org/10.4324/9781315401065-2
• 110. Mrazek PJ, Haggerty RJ. Reducing risks for mental disorders: Frontiers for preventive intervention research. Washington, DC: National Academy Press; 1994.
• 111. Piran N, Levine MP. Introduction. Eat Disord. 1996 Dec 1;4(4):291–3. https://doi.org/10.1080/10640269608249189
• 112. Smolak L, Levine MP, Striegel-Moore RH. The developmental psychopathology of eating disorders: Implications for research, prevention, and treatment. Mahwah, NJ: Lawrence Erlbaum Associates; 1996. https://doi.org/10.4324/9780203763506
• 113. Piran N, Levine MP, Steiner-Adair C. Preventing eating disorders: A handbook of interventions and special challenges. Ann Arbor, MI: Brunner/Mazel; 1999. https://doi.org/10.4324/9780203778081
• 115. Ulijaszek SJ. Models of obesity: From ecology to complexity in science and policy. Cambridge, UK: Cambridge University Press; 2017. https://doi.org/10.1017/9781316338650
• 117. Attia E, Becker AE, Bulik CM, Field AE, Golden NH, Kreipe RE, et al. Research agenda for eating disorders. In: Evans DL, Foa EB, Gur RE, Hendin H, O’Brien CP, Romer D, et al., editors. Treating and preventing adolescent mental health disorders: What we know and what we don’t know. 2nd ed. New York, NY: Oxford University Press; 2017. p. 363–7. https://doi.org/10.1093/med-psych/9780199928163.003.0016
• 121. Greene D, O’Callaghan D, Cunningham P. How many topics? Stability analysis for topic models. In: Calders T, Esposito F, Hüllermeier E, Meo R, editors. Machine learning and knowledge discovery in databases. Berlin, Heidelberg: Springer Berlin Heidelberg; 2014. p. 498–513. https://doi.org/10.1007/978-3-662-44848-9_32