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A life put on hold: inside and outside perspectives on illness, treatment, and recovery in adolescents with restrictive eating disorders
Örebro University, School of Medical Sciences.ORCID iD: 0000-0002-1068-6929
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Örebro: Örebro University , 2019. , p. 122
Series
Örebro Studies in Medicine, ISSN 1652-4063 ; 187
Keywords [en]
Adolescents, Anorexia Nervosa, restrictive eating disorders, family involvement, treatment outcome, patient perspectives, qualitative research, social contexts, interpersonal relationships
National Category
General Practice Psychiatry
Identifiers
URN: urn:nbn:se:oru:diva-70520ISBN: 978-91-7529-273-1 (print)OAI: oai:DiVA.org:oru-70520DiVA, id: diva2:1268539
Public defence
2019-02-22, Örebro universitet, Campus USÖ, hörsal C1, Södra Grev Rosengatan 32, Örebro, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-12-06 Created: 2018-12-06 Last updated: 2019-01-28Bibliographically approved
List of papers
1. Adolescents with full or subthreshold anorexia nervosa in a naturalistic sample: characteristics and treatment outcome
Open this publication in new window or tab >>Adolescents with full or subthreshold anorexia nervosa in a naturalistic sample: characteristics and treatment outcome
2017 (English)In: Journal of Eating Disorders, E-ISSN 2050-2974, Vol. 5, no 1, article id 4Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BioMed Central, 2017
Keywords
Adolescents, Anorexia nervosa, Eating disorders, Naturalistic sample, Treatment
National Category
Nutrition and Dietetics
Identifiers
urn:nbn:se:oru:diva-57066 (URN)10.1186/s40337-017-0135-5 (DOI)000395733900001 ()28265410 (PubMedID)2-s2.0-85014399551 (Scopus ID)
Note

Funding Agencies:

Region Örebro County

Örebro University

Available from: 2017-04-18 Created: 2017-04-18 Last updated: 2019-01-23Bibliographically approved
2. Adolescents with full or subthreshold anorexia nervosa in a naturalistic sample: treatment interventions and patient satisfaction
Open this publication in new window or tab >>Adolescents with full or subthreshold anorexia nervosa in a naturalistic sample: treatment interventions and patient satisfaction
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Psychiatry
Identifiers
urn:nbn:se:oru:diva-71699 (URN)
Available from: 2019-01-23 Created: 2019-01-23 Last updated: 2019-01-23Bibliographically approved
3. Being me and being us: adolescents' experiences of treatment for eating disorders
Open this publication in new window or tab >>Being me and being us: adolescents' experiences of treatment for eating disorders
2015 (English)In: Journal of eating disorders, ISSN 2050-2974, Vol. 3, no 9Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: This qualitative study addresses adolescents' perception of treatment for eating disorders. The importance of involving parents in treatment of young people with eating disorders, especially young people with Anorexia Nervosa, is emphasized in a number of studies. Even so, this form of treatment does not work for everybody, not even within a limited diagnostic group. Previous research has revealed that many young people are not entirely satisfied with their treatment. However, there is a lack of knowledge concerning the perspectives of adolescents in outpatient treatment, whose treatment often involves family. The aim of the present study was to investigate how young people with experience from adolescent outpatient treatment for eating disorders, involving family-based and individual based interventions, perceive their time in treatment.

METHODS: This study was conducted using a hermeneutic phenomenological approach. Fifteen participants were recruited in collaboration with four specialized eating disorder units and interviewed with the purpose to gather narratives.

RESULTS: The analysis revealed that the adolescents sometimes felt more or less forced into treatment, and strong ambivalent feelings about if and how to participate in treatment permeated the adolescents' narratives. The common factors which emerged in the narratives were assembled under the two major themes: Having to involve family in treatment - in one way or another and Making progress in treatment - a matter of trust.

CONCLUSIONS: It is of great importance to involve family in treatment in order to understand the problems of the adolescents in their context and be able to take advantage of the resource that parents constitute. However, in certain situations, it is necessary to prioritise individual treatment interventions so that instead of sorting out difficult family situations the therapist focuses on enhancing the young people's resilience, thus enabling them to tackle problematic situations in life.

Place, publisher, year, edition, pages
BioMed Central, 2015
Keywords
Eating disorders, adolescents, treatment, qualitative research
National Category
Psychiatry Other Clinical Medicine
Research subject
Medicine
Identifiers
urn:nbn:se:oru:diva-44821 (URN)10.1186/s40337-015-0051-5 (DOI)000214989700042 ()25834734 (PubMedID)2-s2.0-84941146283 (Scopus ID)
Note

Funding agencies:

SwEat-Swedish Eating Disorder Register

Available from: 2015-06-08 Created: 2015-06-03 Last updated: 2019-01-23Bibliographically approved
4. A life put on hold: adolescents' experiences of having an eating disorder in relation to social contexts outside the family
Open this publication in new window or tab >>A life put on hold: adolescents' experiences of having an eating disorder in relation to social contexts outside the family
2018 (English)In: Journal of Multidisciplinary Healthcare, ISSN 1178-2390, E-ISSN 1178-2390, Vol. 11, p. 425-437Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
DOVE Medical Press Ltd., 2018
Keywords
restrictive eating disorder, patients' perspectives, qualitative research, thematic analysis, recovery
National Category
Psychiatry
Identifiers
urn:nbn:se:oru:diva-68969 (URN)10.2147/JMDH.S168133 (DOI)000443480600001 ()
Note

Funding Agencies:

Region Örebro County  

Örebro University 

Available from: 2018-09-19 Created: 2018-09-19 Last updated: 2019-01-23Bibliographically approved

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