A systematic review of family caregiving in eating disorders

doi:10.1016/j.eatbeh.2014.06.001

Eating Behaviors

Volume 15, Issue 3, August 2014, Pages 464-477

https://doi.org/10.1016/j.eatbeh.2014.06.001 Get rights and content

Highlights

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A systematic review on family caregiving in EDs was carried out and new 29 studies were identified.
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Most of the research has focused on mothers and the impact on fathers or others has been less studied.
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Findings found the high impact that living with an ED has on multiple aspects of family functioning.
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Association between the illness duration and caregiving experiences varied by stage of illness.
•
Interesting preliminary cultural and gender differences emerged.

Abstract

The objective of the study was to review systematically the available new evidence on family caregiving in eating disorders (ED), updating the study of Zabala, Macdonald, and Treasure (2009). Electronic databases were searched from October 2008 until May 2013. Selected studies included carers of people with ED and employed one or more measures of caregiving experience, accommodation and enabling behaviours, expressed emotion, and/or psychological distress. Twenty-nine studies were identified. Most of the studies examined these features in mothers of patients with anorexia. Only a few studies included a control group. The majority of studies found high levels of negative aspects of caregiving, accommodation and enabling behaviours, expressed emotion and psychological distress in carers of people with ED, although positive aspects and emotions were also reported. These features varied depending on some sociodemographic and clinical characteristics of carers and patients; moreover, interesting preliminary cultural and gender differences emerged. Progress has been made in research on family caregiving in ED and there is evidence that these factors can be associated with the outcome of ED. Theoretical, research and clinical implications of the findings are discussed.

Section snippets

Background

Caregivers of persons with an eating disorder (ED) usually suffer from mental health difficulties, psychological distress and burden due to their caregiving experiences (Sepulveda, Graell, et al., 2012). In 2009, Zabala, Macdonald and Treasure critically appraised the existing literature with respect to caregiving burden, psychological distress and expressed emotion (EE) in families of people with EDs, and concluded that there were difficulties in all of these domains. Furthermore, these

Search applications

Searches were conducted in the following electronic databases: Psycinfo, Pubmed and the Web of Science. Additional searching through reference lists and relevant journals was also performed.

Journals were searched up from November 2008 to April 2013. Keywords used for searches were: eating disorders, anorexia, anorexia nervosa, bulimia, bulimia nervosa, binge eating disorder, carer, caregiver, caregiving, family, parents, expressed emotion, burden, distress, stress, anxiety, depression,

Characteristics of the samples

Socio-demographic and clinical data of the samples of patients and caregivers from the individual selected studies are shown along Table 1, Table 2, Table 3, Table 4, Table 5 (these have been ordered, first, by instruments used to facilitate comparisons and, second, alphabetically by the first author of the study).

Regarding the samples of ED patients under study, seventeen studies included a mixed diagnostic sample (though AN was the predominant diagnosis in those where percentages were

Conclusions

The aim of the present study was to update the systematic review of Zabala et al. (2009) on caregiving experience, EE and psychological distress among caregivers of ED patients, and to include new measures such as ED specific experiences of caregiving and accommodation to symptoms and enabling behaviours.

After a visual comparison of the results of the different studies, it can be said that all of them continued to confirm that the caregiving experience was problematic. There was a tendency for

Role of funding source

Dr. Anastasiadou received funding by the Autonomous University of Madrid from a Programme distinguished with Mention of Excellence, Dr. Medina-Pradas was supported by the Alianza 4 Universidades postdoctoral scholarship, and Dr. Sepulveda was supported by a Ramon y Cajal contract (RYC-2009-05092) from the Spanish Ministry of Economy and Competitiveness. These organisations had no specific role in the study design, analysis or interpretation of the data, writing the article, or the decision to

Contributors

D.A. and C.M.P. searched for all the papers and revised them independently, contacted with authors for collecting missing data and wrote the draft of the manuscript. A.R.S. revised it, and J.T. supervised the study and synthesised the final manuscript. All authors contributed to and have approved the final manuscript.

Conflict of interest

The authors have no financial disclosures and no conflicts of interest.

Acknowledgements

Special thanks to all the investigators of the reviewed studies who collaborated with us facilitating more concrete data about their works.

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In order to evaluate the convergent validity of the German EDSIS questionnaire, we additionally obtained measures which were used in previous studies assessing caregiver skills and expressed emotion on the one hand and with psychopathological symptoms such as depression and anxiety on the other hand. These have shown substantial associations with caregiving burden (Anastasiadou et al., 2014; Rhind et al., 2016). Specifically, we obtained the following questionnaires: (1) Caregiver Skills Scale (CASK) (Hibbs, Rhind, Salerno, et al., 2015; Zeiler et al., 2021) assessing core skills related to care for a close-other diagnosed with an ED (e.g., managing negative emotions and feelings, frustration tolerance, self-care behavior, avoiding nagging conversations).
The aim of this study was to explore the factor structure, scale characteristics and convergent validity of a German version of the Eating Disorder Symptom Impact Scale (EDSIS). A total of 335 parents of adolescents and young adults with anorexia nervosa in inpatient or outpatient treatment completed the 24-item German translation of the EDSIS and other measures of caregiving burden and psychological distress. We tested a 4 vs. 6-factor model of the EDSIS using confirmatory factor analyses. The 6-factor model treating items as ordinal variables showed the best fit to the data (CFI = 0.949, RMSEA = 0.064). Strong invariance of this model was shown between the sample of mothers and fathers. Internal consistencies of the EDSIS scales were in the acceptable-to-good range. Bottom effects were observed for the ‘Binge-Purge-Impacts’ subscale only. Mothers had significantly higher EDSIS scores compared to fathers. The EDSIS total score and most of the subscores showed substantial positive correlations with caregivers' psychological distress, level of depression, anxiety and expressed emotion as well as negative associations with the level of perceived caregiving skills. The German version of the EDSIS is a useful tool to assess caregiving burden in mothers and fathers of patients with anorexia nervosa.
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L’implication de l’entourage dans la décision d’hospitalisation en psychiatrie, via des soins à la demande d’un tiers (SDT), a pu être remise en question ces dernières années, notamment pour limiter l’impact émotionnel chez le tiers. L’objectif principal de cette étude était d’évaluer si le fait d’apporter au tiers des informations sur les soins sans consentement (SSC) avait un impact sur son vécu de la SDT. Les objectifs secondaires étaient les suivants : identifier d’autres facteurs pouvant impacter le vécu du tiers lors de la mise en place de SDT, et évaluer l’impact de celle-ci sur la relation entre le tiers et son proche hospitalisé, ainsi que les facteurs pouvant l’influencer.
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In France, the family and friends of a patient with a psychiatric disorder can legally be involved in the decision to involuntary admission to psychiatry through care at the request of a third party. This involvement has been questioned in recent years, notably to protect this third party. The main objective of this work was to assess whether providing the third party with information on care without consent when providing care at the request of a third party (SDT) had an impact on the third party's experience. The secondary objectives were to identify other factors that might impact the third party's experience of the SDT, and to assess the impact of the SDT on the relationship between the third party and his or her hospitalized relative, as well as the factors that might influence it.
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View full text

A systematic review of family caregiving in eating disorders

Highlights

Abstract

Section snippets

Background

Search applications

Characteristics of the samples

Conclusions

Role of funding source

Contributors

Conflict of interest

Acknowledgements

Psyquiatry Research

Journal of Affective Disorders

Psychiatry Research

Psychiatry Research

Appetite

Cognitive and Behavioral Practice

Journal of Clinical Epidemiology

Comprehensive Psychiatry

Psychiatry Research

The relationship between dysfunctional patterns of families´ response to the illness and symptom severity in adolescent patients with anorexia nervosa at illness onset: A gender-specific approach, Women´s Health Issues

Revista de Psicopatología y Psicología Clínica

Internet-based chat support groups for parents in family-based treatment for adolescent eating disorders: a pilot study

European Eating Disorders Review

The Level of Expressed Emotion Scale: A new measure of expressed emotion

Journal of Clinical Psychology

Predictive validity of the Level of Expressed Emotion (LEE) Scale: Readmission follow-up data for 1, 2, and 5-year periods

Journal of Clinical Psychology

Coping strategies and social support as predictors and mediators of eating disorder carer burden and psychological distress

Social Psychiatry and Psychiatric Epidemiology

Perceptions of carer burden: Differences between individuals with an eating disorder and their carer

Eating Disorders

A longitudinal examination of burden and psychological distress in carers of people with an eating disorder

Social Psychiatry and Psychiatric Epidemiology

The SCL-90 Manual I: Scoring, administration, and procedures for the SCL-9

Predictors of family functioning in carers of individuals with anorexia nervosa

International Journal of Eating Disorders

Bonding and expressed emotion: two interlinked concepts?

Psychopathology

Expressed Emotion in Families of Patients with Eating Disorders: A Review of the Literature

Current Psychiatry Reviews

Adapting family-based therapy to a day hospital programme for adolescents with eating disorders: preliminary outcomes and trajectories of change

Journal of Family Therapy

Educational and support intervention to help families assist in the recovery of relatives with eating disorders

Journal of Psychiatric and Mental Health Nursing

Cognitive interpersonal maintenance model of eating disorders: Intervention for carers

British Journal of Psychiatry

Carers' assessment, skills and information sharing: theoretical framework and trial protocol for a randomised controlled trial evaluating the efficacy of a complex intervention for carers of inpatients with anorexia nervosa

European Eating Disorders Review

Anxiety and Social-Emotional Processing in Eating Disorders: Examination of Family Trios

Cognitive Therapy and Research

User's Guide to the General Health Questionnaire

A randomized controlled trial of an Internet-based cognitive-behavioural skills package for carers of people with anorexia nervosa

Psychological Medicine

An off-line pilot evaluation of a web-based systemic cognitive-behavioral intervention for carers of people with anorexia nervosa

International Journal of Eating Disorders

Psychoeducational Family Program for Eating Disorders: A Pilot Study with 3 months follow-up [Programa Psicoeducativo Familiar para Trastornos del Comportamiento Alimentario: Estudio Piloto con 3 meses de Seguimiento]

Behavioral Psychology

Investigating the Needs of Carers in the Area of Eating Disorders: Development of the Carers' Needs Assessment Measure (CaNAM)

European Eating Disorders Review

Cultural variability in Expressed Emotion among families of adolescents with anorexia nervosa

International Journal of Eating Disorders

Anorexia nervosa trios: behavioral profiles of individuals with anorexia nervosa and their parents

Psychological Medicine