The EDSIS: A New Scale to Measure Caregiver Distress

Reprinted from Eating Disorders Review
July/August 2008 Volume 19, Number 4
©2008 Gürze Books

Family members often have high levels of distress from the demands of caring for a son or daughter with an eating disorder.

Ana R. Sepulveda, MD, and colleagues from the Maudsley Group in the United Kingdom recently developed a symptom impact scale to help measure the specific responsibilities of taking care of patients with anorexia nervosa (AN) and bulimia nervosa (BN). They also investigated whether these stresses were subject to change. One outcome of the study was the revelation that clinicians need to devote more time and effort to strategies to increase social connections for caregivers (Health and Quality of Life Outcomes 2008; 6:28).

Clinicians and caregivers helped develop the scale

The researchers generated the new scale, the Eating Disorders Symptoms Impact Scale, or EDSIS, in cooperation with a panel of clinicians and researchers, and based upon qualitative and quantitative work with caregivers and review by a panel of “expert carers.” A sample of 196 caregivers with a relative with an eating disorder completed the scale. To be included in the study, the caregivers had to be either living with or directly involved in the care of the person with an eating disorder.

The 24-item EDSIS focuses on four factors: nutrition, guilt, “dysregulated behavior,” and social isolation. These four factors explained 58.4% of the variance in caregiver distress.

The items on the EDSIS attempted to measure caregivers’ appraisals of the personal impact that the eating disorder symptoms and behaviors of the patient had upon their own well-being. The participants also reported demographic information for themselves and the patients, and completed the General Health Questionnaire, the Global assessment scale, and the Experience of Caregiving Inventory Questionnaire.

Finally, those who participated in the study were invited to participate in an intervention program that included a workshop and discussion groups that included from 12 to 16 caregivers for patients with AN or BN.

Families dealing with BN have greater stresses

Data from 190 caregivers were included in the validation study, and included information from 139 females (73.2%) and 47 males (24.7%); 4 caregivers did not specify their gender. The mean age of the caregivers was 51 years. The patient group included 6 males (6%) and 150 females, with a mean age of 23.5 years. Ninety-six caregivers participated in the intervention program, and measures were obtained from 66 of the caregivers (68/8%).

One clear-cut finding was that caregivers for people with BN experienced higher levels of general and specific caregiving distress than did those caring for patients with AN. These caregivers dealt with twice as much unregulated behavior and overall caregiving difficulties than did families caring for patients with AN. Only 16 of the 21 patients with BN were currently living at home with the primary caregiver, while 67 of 69 AN patients were living with their primary caregivers. The impact of deregulated behavior and overall caregiving problems were reduced when the individual with an eating disorder was not living at home.

The second goal of the study was to see if intervention would improve any of the four main dimensions measured by the EDSIS scale. The total score and the score for the guilt subscale deceased significantly after a brief group intervention.

Thus, in addition to increasing social interactions and connections with caregivers, the authors reported that a greater emphasis on teaching behavioral techniques, such as functional analysis, to reduce eating symptoms such as dysregulated behaviors and poor nutritional health, might be helpful.

Finally, the EDSIS is the first questionnaire designed specifically to measure the specific caregiving burdens experienced by family members caring for a person with an eating disorder. The authors report that the EDSIS has good psychometric properties and some clinical utility, and that it may be valuable to help highlight the specific needs of families with a member with an eating disorder, and to help tailor family work to specific areas.

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