Caring for the Caregivers: Focusing on the Family in Treatment

At a plenary session at the International Conference on Eating Disorders (ICED) in Baltimore in May, a panel of eating disorders experts discussed the many challenges and increasing success of working with families of patients with eating disorders. (For more on the ICED meeting, see the July-August 2007issue of EDR). This was the first time the national meeting has offered a plenary session specifically focusing on issues facing families and friends of eating disorders patients.

Panel members included George Szmukler, MD, and Ivan Isler, PhD, FRCP, Institute of Psychiatry, London, UK; and Janet Treasure, PhD, DRCP, of Maudsley Hospital, also in London. Two parents of children with eating disorders also participated in the session.

Caregivers for People with Mental Health Problems

Dr. Szmukler noted that until recently the role of parents and caregivers has been marginalized. In Great Britain, he explained, caregivers have been given more attention because of community care, where it is recognized that the families are providing care. In that setting, caregivers can ask to be involved, can ask questions, and can express their dissatisfaction with the medical care being given. In addition, he said, there is a sociopolitical edge because parents are finally realizing that they have certain rights as caregivers.

Dr. Szmukler urged audience members to stop using the phrase, “caregiver burden.” It is a very unhelpful concept, he said, first because it is a pejorative phrase that not only isn’t very accurate, but also does not reflect that caregiving has positive elements.

Dr. Szmukler also shared the results of his recent study of 700 caregivers. Some of the important feedback was information about the stigma associated with an eating disorder, problems with services (doctors don’t take the parents seriously), and the degree of loss that some parents feel (‘I think about how she could have been’). Generally, studies have shown that ‘caregiver burden’ does not change over time, he said; however, in one study from the University of Calgary involving a large number of schizophrenic patients, very dramatic changes occurred as a result of better communication between clinicians and families (Qual Heal Res 2004;14:562). Family-led therapy programs have also had some positive results, especially in China, he said.

“Finally, a start has been made in understanding the role of carers,” Dr. Szmukler said, but he also pointed out that little progress has been made in relieving caregivers’ distress. Certain questions also arise, he added, such as, if the patient remains seriously ill, can we improve the condition of the carers? “We have treatment for the person who is ill,” he said, but added, “Shouldn’t we also be focusing more attention on the caregivers?”

Caring for Adolescents with Eating Disorders

There is now a consensus that we have an effective therapy for anorexia nervosa (AN), and that is family therapy, Dr. Ivan Eisler told the audience. “More importantly,” he stressed, “There is now a consensus that family therapy does not mean treating difficult, problematic, pathological families, but instead means working with families. It isn’t treatment of families but treatment with families.”

The idea that parents and siblings are somehow at the heart of the problem behavior may have roots in early research in eating disorders, he said. In 1873 Ernest-Charles Lasègue and Sir William Gull recognized the importance of the family. In the 1940s, the concept of the “parentectomy” emerged, and family therapy was largely neglected for decades. According to Dr. Eisler, Minuchin’s work had a lasting influence because he never said that families caused AN but rather that a certain set of family features had to be changed to help the patient. “We now know that it is not true that a family who has a child who is anorexic has certain characteristics,” Dr. Eisler said. Perhaps we can symbolically cut out these ideas, he added, while continuing to work to understand what causes families to feel paralyzed and hopeless when their child has an eating disorder.

Dr. Eisler suggested that a helpful starting point in thinking about the role of families should be different from the historical model; thus, one should not ask what it is about this family that caused the eating disorder, but what has happened to the family living with an eating disorder. Often the relationship is dominated by what is happening day by day—the child is eating or refusing to eat, the child feels the parents don’t care, and families feel ‘stuck.’ He suggested investigating how the family got to where it is now. It doesn’t mean that things don’t need to change, but that some things originally being done to help the child are not helpful now.

Dr. Eisler noted that outpatient therapy with multi-family work is increasingly being used successfully. Most groups meet weekly and families are often enthusiastic about such programs. One of the most dramatic outcomes of such programs is a sense of hope, he said, where parents now say, ‘I’m not sure how we are going to do it, but we are going to find a way.’

Caring for Adults with Eating Disorders

Dr. Janet Treasure described a workshop her group conducts for caregivers with adult children with long-term eating disorders. Family members of adult patients experience general distress, anxiety, and a diminished quality of life as they deal with overwhelming stress and anxiety, she said. These adults live with the shadow of death in their peripheral vision all the time, she added.

Dr. Treasure and her colleagues have developed a self-help guide and workshops for parents, to try to make the caring experience easier. They used animal models to illustrate how parents express their emotions and behaviors; for example, a rhino might represent a teen’s hostility, a kangaroo, to exemplify a parent who drops everything for a child, an ostrich, who ignores the problems, and a jellyfish for a parent who is wrapped around the child and feels the sting of shame (‘If I were a better parent, this wouldn’t have happened’).

“To change these behaviors, we believe that family members need to be helped in better ways of working with loved ones, to be heard, and helped to change the behavior,” said Dr. Treasure. Parents find the tools and techniques of motivational interviewing and learning about the theoretical elements of change, for example, are helpful.

She added that sometimes understanding the eating disorder can be very difficult for families, who may isolate themselves and refuse to talk about the problem. Also, it is often difficult for parents to understand at the beginning if the behavior is just normal teenage behavior to excess or an addiction, or the beginnings of an eating disorder. Educating parents about the illnesses and using group therapy can also help them feel less guilt and shame.

Dr. Treasure pointed out that a major obstacle to changing behavior is the fact that parents or family members may be trying to keep the peace in the family but actually are enabling the destructive or negative behaviors. “In your own practices, how many times has a parent described driving 10 more miles to get a particular food the patient wants, or who turns a blind eye to certain antisocial behaviors, such as stealing money or leaving a toilet filthy after purging?” she asked. She added that parents may do this because they don’t want the rest of the family to have to confront these behaviors. With their workshops and manuals, Dr. Treasure and her colleagues try to teach parents practical management skills and to help learn how to remove the negative consequences and establish boundaries in an assertive but positive way.

The workshops use a small-group approach, with training, motivational interviewing, and targeted changes. The researchers have seen some reduction in the level of distress and in negative caregiving experiences, and parents also report some changes in their daughters, including some desire to enter treatment again.

None of this is easy for caregivers who have been taking care of an anorexic family member for 20 years, she said. However, workshops for parents and caregivers can moderate some of the difficulties for those who have “been there, done that” and who are burned out and discouraged.

Voices of Parents

The final session included Washington, DC freelance writer Laura Collins, author of Eating with Your Anorexic (McGraw-Hill, 2005), and Joan Riederer, both of whom are members of the Eating Disorders Family Support Network. This part of the session was moderated by Susan Ringwold, Chief Executive of beat™ (Beating Eating Disorders) in Great Britain.

Collins and Riederer both have daughters with eating disorders. Collins’ daughter became anorexic after a bout with intestinal flu and lost 10 lb within a week and failed to regain the weight. Their pediatrician advised them not to worry. However, the illness eventually led to 14 years of treatment for AN. She noted that her daughter wanted her parents to have more control but met resistance from clinicians. For example, when the child was first hospitalized, the 11-year-old was not allowed to have any contact with her parents. As a result she felt abandoned and developed posttraumatic stress syndrome.

Joan Riederer’s daughter developed AN while the family was on vacation, and the disease developed rapidly. Her eating pattern was obviously strange and was noticed immediately by the family, said her mother. For example, her daughter ate an apple and was frightened that it was making her fat—she said she could see it in her arm. Although the true diagnosis wasn’t made for a long time in spite of all the family’s efforts, she eventually found good care.

Reiderer said she has seen positive changes in the attitudes toward parents in recent years. If she had a single wish, she said she would wish for humility on the part of clinicians who treat children with eating disorders and, and hoped that clinicians will get rid of the idea that parents have to ‘be managed.’ Many parents are still too humble and need to step up and make their wishes known, and will do so if clinicians ask them to, she said.

Collins said her single wish would be a call to action to reduce the death rate in eating disorders, and to set a date for this to happen. She said, “We can do it—we know that the eating disorders organizations are on the same page. These girls are dying,” Collins said.