Development and validation of the Accommodation and Enabling Scale for Eating Disorders (AESED) for caregivers in eating disorders

BACKGROUND: Families 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. METHODS: A 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. RESULTS: A 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. CONCLUSION: Internal 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.