Caring for Caregivers: A Study of Persons Caring for Those with Bulimia

Two previous studies have reported that a family’s burden of caring for a family member with anorexia nervosa (AN) was comparable to caring for someone with psychosis, and AN caregivers also reported high levels of unmet needs (Eat Weight Disord 1997;1:44; Eur Eat Disord Rev 2003;11:125). Is the same true for caregivers of persons with bulimia nervosa (BN)?

Several features of BN make it hard to take care of someone with the disorder. For example, parents may be faced with the expense of repeatedly replacing large quantities of food that disappear from the pantry or dealing with toilets that are often dirty or even blocked from the patient’s frequent purging. Caregivers may also have to deal with comorbid symptoms such as depression and anxiety or impassive behaviors such as substances abuse or self-harm.

An exploratory study

Suzanne Winn, Dr. Ulrike Schmidt and others devised an exploratory study of the mental health and experience of people who care for teens with BN. One-hundred and twelve persons caring for patients with BN (from 1 to 4 persons per patient) and 68 adolescents with BN or an eating disorder not otherwise specified (EDNOS) completed self-report questionnaires, including the General Health Questionnaire, the Experience of Caregiving Inventory, the Level of Expressed Emotion, the Self-Report Family Inventory, and the Inventory of Interpersonal Problems (Int J Eat Disord 2007; 40:171). Caregivers included mothers, fathers, sisters, brothers, partners, friends, or step-parents. Most caregivers (62.5%) were female, and 37.5% were male. Most (87%) of caregivers were currently living with the person who was receiving care.

Results: Two factors that might be changed

More than half of caregivers reported some mental health problems, and a few were in considerable distress. A negative caregiving experience predicted the mental health status of the caregiver. Two relationship-related factors predicted a negative experience, namely expressed emotion (as reported by the patient) and weekly contact hours. Interestingly, there was a clearer relationship between the patients’ as opposed to caregivers’ ratings of a negative experience of caregiving. The authors reported that more information on patient-caregiver contact time will be required to better understand why this factor predicts a more negative experience for the caregiver.

In the current study, levels of difficulties were not lower than in previous studies of caregivers of patients with chronic AN or psychoses. The authors were surprised by this finding, given the fact that the patients were relatively homogenous in terms of having a short duration of symptoms. In addition, the BN patients in this study were local referrals from primary care physicians, and much less highly selected than those in previous studies of caregiving for AN patients (Soc Psychiatry Psychiatr Epidemiol 2001; 36:343).

Selected characteristics did not predict negative experiences

There was no evidence that selected patient and caregiver characteristics predicted negative caregiving experiences. This contrasts with reported evidence that disturbed behavior predicts caregiver distress in those who care for individuals with traumatic brain injury, HIV/AIDS, and cognitively impaired elderly persons. However, individuals with BN often feel ashamed of their binge eating and vomiting and keep these behaviors a secret. Thus, the authors think it’s possible that some caregivers were not aware of the severity of these bulimic behaviors

Though there were certain limitations to the study, such as small size, the authors reported that two steps might help reduce the stress upon the person caring for a patient with BN. The first would be to limit the amount of expressed emotion allowed, and the second would be to shorten the contact hours between patient and caregiver.