By Janet Sassi
Merle Keitel, Ph.D., says that most research on parents who have children with AN have been conducted in Europe and Australia.
Photo by Janet Sassi
“Our goal was to get the voices of parents out there so that treatment professionals could hear the struggles they face.”
Studies shows that anorexia nervosa (AN) and bulimia nervosa (BN) affect between five and 10 million girls and women and about one million boys and men in the United States. In fact, AN has the highest death rate of all of mental disorders.
Moreover, Merle Keitel, Ph.D., will tell you that the effects of self-imposed starvation don’t begin and end with those diagnosed with AN.
The professor of counseling psychology in the Graduate School of Education (GSE) has administered two qualitative studies on parents of children who suffer from AN. A 2007 study focused on mothers, and her latest study, the data from which is being analyzed, focuses on fathers.
What she has found is that parents, confronted with a child’s irrational and self-destructive fear of becoming fat, often don’t know what to do or where to turn.
“Parents experience a range of emotions in response to the diagnosis and treatment of their child’s AN, including concern about their child’s future, confusion, frustration, anger, helplessness and sadness. Very often there is insufficient support for them in the mental health system,” Keitel said. That may be, in part, because some members of the health community fall back on blaming the parents for their child’s AN.
“Parents no more cause AN than they cause autism, schizophrenia, bipolar disorders, epilepsy or any other brain disorder,” Keitel said. She added that genetic factors significantly contribute to the development of AN, though most experts agree that multiple factors are likely to maintain the disorder.
Keitel’s team analyzed 10 interviews with mothers of an AN child between the ages of 11 and 21, and nine interviews with fathers. The team examined responses as they related to three time periods: when participants first suspected their child had AN through the time it was diagnosed; in-patient treatment; and post in-patient treatment.
One of the biggest stress factors among mothers was their perceived inability to find professional guidance or be included in the treatment procedures. Moreover, recommendations offered to parents from different sources often conflict. Quoted one mother, Linda: “I knew I had the intelligence to do it. I had the money to do it. I had the intention to do it. But I didn’t have the information.”
Mothers directly communicated their concerns to front-line health providers such as pediatricians, and many were distressed that their fears about their children were minimized.
Mothers were further distressed by the way AN affected siblings and by what they described as having made “significant personal sacrifices” for their children. One professional mother, Susan, described her difficulty in maintaining a career that involved seeing clients because she couldn’t leave the house until her daughter had eaten—a task that sometimes took hours and forced repeated last-minute cancellations.
A unanimous stressor, said Keitel, was the financial burden placed on families due to inadequate or absent health insurance coverage. While the average insurance policy will cover up to 60 days of inpatient mental health treatment, AN often requires much more, Keitel said.
Even upper-middle class families were forced to use savings, borrow from relatives or take money from retirement and college accounts to help their children.
“AN has tremendous physical ramifications and consequences that other mental disorders may not have, and yet it is still treated like a mental disorder when it comes to insurance coverage,” Keitel said. “Treatment for AN can be quite prolonged, and families may be in a bind, needing to wait for next year’s insurance to kick in before their child can resume treatment.”
Although Keitel has finished collecting preliminary data on her study of fathers of AN children, she said the Fordham-funded study is still undergoing a second round of analysis. One common thread that stands out already, however, is the wide variation of fathers’ reactions to having a child with AN.
Although Keitel cautioned that these two studies are qualitative, her report offers recommendations to health professionals who deal with families of AN sufferers. They are:
• pay attention to early warning signs;
• share your approach to treatment with parents, and include them in the planning;
• coordinate treatment with other health providers of the child; and
• don’t blame the patient or the family.
“Our goal was to get the voices of parents out there so that treatment professionals could hear the struggles they face,” Keitel said. “We hope that listening to those voices raises consciousness among health professionals, nutritionists, physicians and others who deal with AN families. We also advocate for better insurance.”
Keitel became interested in caregiver’s distress as a graduate student working in a Buffalo, N.Y., hospital with families of cancer patients. A few years later, caring for her own dying mother solidified her interest in studying the relationship between family members and patients with debilitating diseases.
“Often the loved ones have more difficulty coping than the patients themselves,” she said.
This semester, Keitel is taking a sabbatical to embark on a third study of AN, a quantitative study examining the psychosocial impact of caring for a child with AN as well as coping strategies. That study, she said, should help identify appropriate support services for parents so they can better help their children.
“Having more empathetic health professionals will be more effective, because less-distressed parents are better able to support their child’s recovery.”