To Örebro University

OBJECTIVE: Approximately 25% of individuals with eating disorders develop severe and enduring eating disorders (SEEDs); yet effective treatments remain limited. This study explored lived experiences of SEEDs, focussing on past treatments, as well as current needs and hopes.

METHOD: Twenty participants with eating disorders of ≥ 7 years and prior treatment engagement were interviewed about treatment experiences and needs. Transcribed interviews were analysed using phenomenologically informed thematic analysis.

RESULTS: Four main themes emerged: (1) treating the weight, the illness or the person; (2) the attitude of the professionals; (3) the need for specialised treatment; and (4) losing control. The first theme comprised sub-themes: (a) too much focus on weight, (b) one size doesn't fit all, and (c) finding and connecting with the person. Participants found individual tailored treatments, multidisciplinary teams, and specialised ED treatments beneficial. Many felt that their unique situation and needs were overshadowed by a predominant emphasis on weight or inflexible treatment protocols.

CONCLUSIONS: The findings support evidence suggesting that treatment should shift from a primary focus in body weight towards more individualised approaches that promote sustainable care and strengthen therapeutic alliances. Future research should examine ways for balancing necessary restrictions with flexibility in inpatient and involuntary care.

PURPOSE: What drives a person towards death and what it entails to try to kill oneself is not fully understood. This study aimed to examine suicidality as a phenomenon, and to elucidate the essential meaning of being suicidal.

METHODS: Applying Reflective Lifeworld Research, the phenomenon of being suicidal was explored through interviews with seven adult suicide attempt survivors (4 men, 3 women; aged 18-54) with various diagnoses. Interviews were analysed using meaning-oriented analysis.

RESULTS: The four essential structures Fragile vitality versus inherent lethality, suicidal isolation, incentive of death and surrendering to death constitutes the essence of being suicidal. Being suicidal is a movement from everyday struggle for meaning and value in a perceived meaningless existence, into a fixed suicidal isolation marked by unbearable psychological pain, conviction of worthlessness and exclusion, paralyzing forces and cognitive-existential shutdown. The transition from thought to action is shaped in silent solitude by the incentive of death rather than will or choice. The inner drive towards death appears as a compelling, liberating, inevitable force impossible to resist on one's own.

CONCLUSION: This study provides deep understanding about the suicidal mind which may be used in development of assessment instruments and interventions for suicide prevention.

OBJECTIVE: Genome-wide association studies (GWAS) implicate psychiatric, metabolic, and anthropometric factors in anorexia nervosa. We developed an 'experiential genetics' design, layering qualitative methodology atop GWAS to capture the subjective experience of anorexia nervosa.

METHOD: We randomly selected GWAS participants with anorexia nervosa from the highest (n = 10) and lowest (n = 10) anorexia nervosa polygenic risk scores (PRS). Clinicians blind to PRS group conducted semi-structured interviews exploring the perception of symptoms, onset, course, and physical and psychological experience of negative energy balance (NEB) (i.e. the pathognomonic anorexia nervosa symptom of expending more energy than one consumes). Blind raters rated transcripts; experiential themes and subthemes were identified through thematic analysis.

RESULTS: Themes indicated that the high-PRS group reported more lifetime psychiatric problems, described the descent into anorexia nervosa as a purposeful progression of preexisting preoccupations, experienced NEB as more positive and energizing, and were more often symptomatic at interview; for them anorexia nervosa seemed to represent the apex of a life trajectory centered on eating disorder traits and symptoms. The low-PRS group reported fewer lifetime psychiatric problems, a more environmentally determined illness onset, fewer extreme symptoms, and were less symptomatic at interview; for them anorexia nervosa seemed to constitute a transient interruption of their life trajectory. Interviewers correctly guessed group membership less frequently than chance (43%), questioning whether the dimensions commonly associated with anorexia nervosa capture the genetic essence of anorexia nervosa.

CONCLUSION: Qualitative research can capture the phenotypic expression of genetic risk, enrich GWAS, characterize heterogeneity, and inform development of genetically informed interventions.

BACKGROUND: Temperament Based Therapy with Support (TBT-S) is an emerging intervention based on empirically supported neurobiological models. Due to its novelty, only a handful of studies to date have examined TBT-S, and none of these previous studies have provided a qualitative evaluation of how TBT-S is perceived by the target population. Therefore, the aim of the current study was to provide an increased understanding of how TBT-S is experienced by patients with an eating disorder and their supports.

METHOD: Forty-six patients with an eating disorder and 63 supports consented to be included in the study. The participants provided written responses to six open-ended questions during the post-treatment assessment, detailing their treatment experiences and offering additional feedback. Thematic analysis (TA) was used to analyze their written responses, aiming for a combination of latent and semantic themes.

RESULTS: The results reveal a substantial overlap between patients' and supports' experiences with TBT-S. In both groups, identified themes suggest increased knowledge and hopefulness as key benefits of the intervention. While both patients and support persons considered TBT-S to be worthwhile, patients also reported finding the intervention quite challenging. Additionally, both groups emphasized the neurobiological rationale as an essential component of TBT-S.

CONCLUSIONS: The qualitative evaluations from this study offer new insights into how TBT-S is experienced by the target population. The findings provide an opportunity to incorporate participant suggestions for improving the treatment, and serve as an important building block for future studies aimed at assessing the effectiveness of TBT-S as an augmentation to treatment-as-usual.

BACKGROUND: Compulsive exercise is common in eating disorders (EDs), but a systematic treatment model is lacking. The CompuLsive Exercise Activity TheraPy (LEAP) is a cognitive behavioral therapy treatment for compulsive exercise in EDs, delivered by trained therapists in groups over four consecutive weeks (8 groupsessions and 1 individual session), aiming to promote healthy physical activity. LEAP is currently evaluated in a randomized efficacy trial. In parallel, it is crucial to learn more about how it is perceived by qualitatively investigating participants' subjective experiences.

METHODS: Nine patients with various EDs participating in the LEAP trial were interviewed about their experiences of taking part in LEAP and about compulsive exercise as an ED symptom using a semi-structured interview guide. The interview transcripts were analyzed according to thematic analysis.

RESULTS: The informants expressed that compulsive exercise had not been addressed in their standard ED treatment and that LEAP as such provided an important complement, spurring reflection, awareness, and changed feelings and behaviors in relation to compulsive exercise. Initially, increased PA was triggered for some, but this side effect was transitory. A wish for more treatment time, in terms of longer or additional sessions, was expressed.

CONCLUSIONS: Overall, LEAP seemed to fill an important treatment need and seemed both acceptable and feasible to patients. However, treatment time and the initial increase in PA may need further investigation and attention in order to optimize this treatment.

TRIAL REGISTRATION: The trial is registered with the ISRCTN registry (registration date 20200325), trial ID ISRCTN80711391.

Recent genome-wide association studies (GWAS) suggest that genetic factors play a key role in its development and expression and that anorexia nervosa (AN) might have both psychiatric and metabolic underpinnings. One hypothesis is that those with high genetic vulnerability to AN may experience negative energy balance (NEB) (i.e., expending more energy than you consume) in a positive manner, rendering self-starvation and excessive exercise exceptionally reinforcing. This “paradoxical” response to NEB may also complicate recovery. In the Polygenic risk of Anorexia nervosa and its Clinical Expression (PACE) study, we explored differences in clinical and phenomenological/experiential phenotypes (i.e., how patients reported their experience of illness) in 10 individuals with AN who were in the top decile of AN polygenic risk (PRS) and 10 individuals with AN who were in the lowest decile in the Swedish subsample of the Anorexia Nervosa Genetics Initiative (ANGI) study. We interviewed the participants in a double-blind study design using a structured interview guide focusing on the experience of AN, including experiences of NEB (e.g., hunger, satiety, dietary restriction), the development of symptoms, as well as the reactions of others including family members and treatment providers to patients’ experiences of NEB. All interviews have been coded and the blind will be broken in May 2023 at which point group comparisons will be analyzed. This is the first study, to our knowledge, to explore experiential impact of genetic risk. Findings may aid in understanding risk, clinical course, and individual experience of AN and contribute suggestions for tailoring interventions with input from genetic risk profiles.

Background: Despite major research efforts, current recommendations of treatment interventions for adolescents with anorexia nervosa are scarce, and the importance of patient satisfaction for treatment outcome is yet to be established. The overall aim of the present study was to examine treatment interventions and patient satisfaction in a naturalistic sample of adolescents with anorexia nervosa or subthreshold anorexia nervosa and possible associations to outcome defined as being in remission or not at treatment follow-up.

Methods: Participants were identified through the Swedish national quality register for eating disorder treatment (SwEat). The samples consisted of 1899 patients who were follow-up registered 1 year after entering treatment and 474 patients who had completed a 1-year patient satisfaction questionnaire. A two-step cluster analysis was used for identifying subgroups of patients who received certain combinations and various amounts of treatment forms.

Results: Patients who received mainly family-based treatment and/or inpatient care were most likely to achieve remission at 1-year follow-up, compared to patients in the other clusters. They were also younger, in general. Individual therapy was the most common treatment form, and was most appreciated among the adolescents. At 1-year follow-up, many patients reported improvements in eating habits, but far fewer reported improvements regarding cognitive symptoms. Overall, the patients rated the therapist relationship in a rather positive way, but they gave quite low ratings to statements associated with their own participation in treatment.

Conclusions: The results indicate that young adolescents who receive mainly family-based treatment and/or inpatient care respond more rapidly to treatment compared to older adolescents who receive mainly individual therapy or mixed treatment interventions. At 1-year follow-up, the adolescents reported improvements in behavioral symptoms and seemed quite satisfied with the therapist relationship.

The overall aim of this thesis was to study adolescents with restrictive eating disorders in relation to illness, treatment, and recovery from an inside and outside perspective. Studies I and II are based on data from a national quality register for eating-disorder treatment. Studies III and IV are based on interviews with adolescents previously treated in outpatient care for a restrictive eating disorder. The results showed that 55% of the adolescents were in remission at the end of treatment, and 85% were within a healthy weight range. The average treatment duration was 15 months. Over the years 1999–2014, remission rates and weight recovery increased, whereas treatment duration decreased. Young patients who received mainly family-based treatment had the highest probability of achieving remission at one-year followup, but the patients themselves were most satisfied with individual therapy. The interviews with the adolescents revealed that they often felt a strong ambivalence during the first treatment sessions, both regarding being defined as sick and the involvement of their parents. In retrospect they believed that family involvement was important, but that individual treatment sessions were crucial. The informants highlighted that trust in the therapist was the key to successful treatment. The adolescents’ narratives drew a picture of a life that was “put on hold” during the time of illness, as their involvement in social contexts outside the family was strongly influenced. It was in these contexts that their problems first became visible, and the quality of their interpersonal relationships played a great role in the recovery process. The results suggest that treatment for adolescents with restrictive eating disorders should be better adapted to changed social structures and patients’ individual contexts – a relevant area for future research.

Background: As suffering from an eating disorder often entails restrictions on a person's everyday life, one can imagine that it is an important aspect of recovery to help young people learn to balance stressful demands and expectations in areas like the school environment and spare-time activities that include different forms of interpersonal relationships.

Purpose: The aim of the present study was to investigate how adolescents with experience from a restrictive eating disorder describe their illness and their time in treatment in relation to social contexts outside the family.

Patients and methods: This qualitative study is based on narratives of 15 adolescents with experience from outpatient treatment for eating disorders with a predominately restrictive symptomatology, recruited in collaboration with four specialized eating-disorder units. Data were explored through inductive thematic analysis.

Results: The adolescents' descriptions of their illness in relation to their social contexts outside the family follow a clear timeline that includes narratives about when and how the problem arose, time in treatment, and the process that led to recovery. Three main themes were found: 1) the problems emerging in everyday life (outside the family); 2) a life put on hold and 3) creating a new life context.

Conclusion: Young people with eating disorders need to learn how to balance demands and stressful situations in life, and to grasp the confusion that often preceded their illness. How recovery progresses, and how the young people experience their life contexts after recovery, depends largely on the magnitude and quality of peer support and on how school and sports activities affect and are affected by the eating disorder.

Background: Anorexia Nervosa (AN) destroys developmentally important early years of many young people and knowledge is insufficient regarding course, treatment outcome and prognosis. Only a few naturalistic studies have been conducted within the field of eating disorder (ED) research. In this naturalistic study we included adolescents with AN or subthreshold AN treated in outpatient care, and the overall aim was to examine sample characteristics and treatment outcome. Additional aims were to examine potential factors associated with remission as an outcome variable, and possible differences between three time periods for treatment onset.

Methods: Participants were identified through the Swedish national quality register for eating disorder treatment (SwEat), in which patients are registered at treatment onset and followed up once a year until end of treatment (EOT). Inclusion criteria were: medical or self-referral to one of the participating treatment units between 1999 and 2014, 13-19 years of age at initial entry into SwEat and diagnosed with AN or subthreshold AN. The total sample consisted of 3997 patient from 83 different treatment units.

Results: The results show that 55% of the participants were in remission and approximately 85% were within a healthy weight range at EOT. Of those who ended treatment according to plan, 70% were in remission and 90% within a healthy weight range. The average treatment duration was approximately 15 months. About one third of the patients terminated treatment prematurely, which was associated with a decreased chance of achieving remission. Remission rates and weight recovery increased over time, while treatment duration decreased. Considering treatment outcome, the results did not show any differences between patients with AN or subthreshold AN.

Conclusions: The present study shows a relatively good prognosis for adolescent patients with AN or subthreshold AN in routine care and the results indicate that treatment for adolescents with ED in Sweden has become more effective over the past 15 years. The results of the present study contribute to the scope of treatment research and the large-scale naturalistic setting secures the generalizability to a clinical environment. However, more research is needed into different forms of evidence, new research strategies and diversity of treatment approaches.