Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorder
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Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders Ana R Sepulveda*1, Jenna Whitney2, Matthew Hankins2,3 and Janet Treasure1 Address: 1Department of Psychological Medicine, King's College of London, Institute of Psychiatry, London, UK, 2Department of Psychology, King's College of London, Institute of Psychiatry, London, UK and 3Division of Primary Care & Public Health, Brighton & Sussex Medical School, University of Brighton, Falmer, UK Email: Ana R Sepulveda* - [email protected]; Jenna Whitney - [email protected]; Matthew Hankins - [email protected]; Janet Treasure - [email protected] * Corresponding author
Published: 21 April 2008 Health and Quality of Life Outcomes 2008, 6:28
doi:10.1186/1477-7525-6-28
Received: 18 July 2007 Accepted: 21 April 2008
This article is available from: http://www.hqlo.com/content/6/1/28 © 2008 Sepulveda et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract Background: Family members of relatives with eating disorders experience high levels of distress due to the difficulties in their care giving role. However no measures have been developed to measure the specific impact that an individual with an eating disorder has on family life. The aim of this study was to develop a measure to assess the specific caregiving burden of both anorexia nervosa and bulimia nervosa. A secondary aim was to examine whether this measure was sensitive to change. Methods: A new scale, the Eating Disorders Symptom Impact Scale (EDSIS), was generated by a panel of clinicians and researchers based upon quantitative and qualitative work with carers and reviewed by a panel of "expert carers". A cross-sectional study was conducted among carers of relatives with an eating disorder to examine the properties of the new scale. In addition, participants from an ongoing pre-and-post design study completed several self-report questionnaires to assess the sensitivity of the EDSIS to change. Results: A sample of 196 carers of relatives with an eating disorder aged 25–68 compted the scale. A 24-item EDSIS scale was derived with four factors: nutrition, guilt, dysregulated behaviour and social isolation. These explained 58.4% of the variance in carer distress. Reliability was acceptable (Cronbach's alpha ranged from 0.84 to 0.90). The convergent validity of the EDSIS subscales was moderately supported by correlations with a general caregiving measure (Experience of Caregiving Inventory (ECI), r = 0.42 to 0.60), psychological distress (General Health Questionnaire (GHQ-12), r = 0.33) and perceived functioning of the relative (Children Global Assessment Scale (CGAS), r = -30). A sample of 57 primary caregivers completed pre-post intervention ass
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