Dataset Information

Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders.

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 assessments and the overall scale (t = 2.3, p < 0.05) and guilt subscale (t = 3.4, p < 0.01) were sensitive to change following a skills training workshop.

Conclusion

The EDSIS instrument has good psychometric properties and may be of value to assess the impact of eating disorder symptoms on family members. It may be of value to highlight carers' needs and to monitor the effectiveness of family based interventions.

SUBMITTER: Sepulveda AR

PROVIDER: S-EPMC2365933 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundFamilies of people with eating disorders are often caught up in rule bound eating and safety behaviours that characterise the illness. The main aim of this study was to develop a valid and specific scale to measure family accommodation in the context of having a relative with an eating disorder.MethodsA new scale, the Accommodation and Enabling Scale for Eating Disorders (AESED), was jointly generated by professionals and expert carers through qualitative analysis. In the first stage, this instrument was given to 201 family members of relatives diagnosed with an eating disorder, with additional self-report measures including the Experience of Caregiving Inventory (ECI), the Hospital Anxiety and Depression Scale (HADS) and the Family Questionnaire (FQ). In the second stage, the sensitivity of the AESED to change was tested in a pre-and-post design study with a new sample of 116 caregivers, using a DVDs-distance skills training for caregivers.ResultsA 33 item instrument was derived consisting of five factors: Avoidance and Modifying Routine, Reassurance Seeking, Meal Ritual, Control of Family and Turning a Blind Eye, which together explained 60.1% of the variance. This scale had good psychometric properties in terms of Cronbach's alpha which ranged from 0.77 to 0.92. Regarding the convergent validity, most of the AESED subscales was moderately supported by correlations with anxiety (HADS; r = 0.24 to 0.48) and depression levels (HADS; r = 0.17 to 0.47), negative caregiving (ECI; r = 0.18 to 0.45), and expressed emotion levels (FQ; r = 0.17 to 0.51). Pre-post intervention assessments showed that the overall AESED scale (d = 0.38) and the avoidance and modifying routine (d = 0.52), meal ritual (d = 0.27) and control of the family (d = 0.49) subscales were sensitive to change.ConclusionInternal consistency was good and initial validity of the scale was adequate, it was able to discriminate differences between clinical variables, however, further work is needed to confirm the factor structure and validity of the AESED. Nevertheless, this scale may be of value in exploring and helping to improve carers' coping strategies and in examining the effectiveness of family based interventions.

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