Here’s part two of my interview with eating disorder advocate Jane Cawley. Jane serves as the co-chair of Maudsley Parents, an organization for parents and families that provides accurate and up-to-date information on eating disorders and their treatment.
One of the greatest gifts, I think, that you can give to a child suffering from an eating disorder is knowledge. Learning about eating disorders and how they’re effectively treated is key to your child’s recovery.
Below, Jane talks all about treatment and how parents can help their child recover. Plus, she includes helpful resources at the end.
If you didn’t read part one of our interview, be sure to check it out here.
What exactly is family-based treatment, also known as the Maudsley approach, and what does the research show?
Family-based treatment for anorexia nervosa empowers parents to help their kids recover. The early part of treatment focuses on bringing weight up to a healthy level and breaking down unhealthy patterns (eating in isolation, cutting out groups of “fear foods,” or excessive exercise, for example) associated with the eating disorder.
Of course, this is very stressful for the patient, since fear of weight gain is a core feature of the illness. Brothers and sisters can be really helpful in offering support. Throughout, there’s no blame or criticism, rather the family pulls together to help.
As a parent, I’m inclined to think that a steady diet of hope, encouragement, and belief that our daughter could really get through this was just as important as the high-calorie milkshakes! Once the grip of the eating disorder loosens, kids are able to gradually take on responsibility for eating, and any remaining issues can be addressed. (Readers can find more info about the three phases of FBT and research support for the approach here.)
Family-based treatment studies show very promising outcomes with most adolescents doing well with the treatment, and maintaining gains at five-year follow-up. Results from a large multi-site study conducted at the University of Chicago and Stanford will be published soon and we’re very excited to hear about that.
Family-based treatment has been adapted for bulimia nervosa (BN), too. It’s similar to treating anorexia nervosa (AN) in many ways, but the focus is on getting a handle on bingeing and purging, rather than weight gain. In addition, kids with bulimia are often able to collaborate in treatment at an earlier stage than kids with AN.
FBT compared favorably to supportive individual psychotherapy in a study at the University of Chicago. A new multi-site study comparing FBT to cognitive-behavioral therapy and supportive individual psychotherapy is currently recruiting at the University of Chicago and Stanford.
What can parents do to help their child recover from an eating disorder in general? What can they do day to day?
Harriet Brown, Maudsley Parents co-chair, puts it this way:
Separate the child from the disease, as Dr. le Grange described. Support your child in weight restoration or stopping the purging cycle as quickly as possible—in other words, help your child back to physical health. Trust your instincts when it comes to your treatment team as well as in dealing with the disease; if something feels wrong to you, it probably is. Remember that as unpleasant as the illness and recovery process is for you and your family, it’s much, much worse for your child who has the eating disorder. Try to stay calm and focused. I like to remind parents to keep their eye on the prize—i.e., the long-term health of their child. So much of what you have to do in the short term is unpleasant and upsetting. But it’s worth it if you consider what’s at stake—your child’s life and/or long-term health and well-being.
I think she’s right on target about keeping a long-range “eyes on the prize” perspective. Recovery can seem like such a long slog, but hanging in there day-to-day can make all the difference. Parents are going to face challenges.
From a practical perspective, helping a child recover may mean doing things differently. Often family members haven’t had every meal together, for example, but having that structure in place can be very helpful in supporting recovery. There’s no getting around parents simply being there as an important first step. Parents might need to change routines, juggle work schedules, or arrange leave to be available for each snack and mealtime.
There are emotional challenges, too. Naturally, parents want to see their child happy and free from anxiety, and eating adequate amounts of food is going to cause a LOT of anxiety in the early stage of recovery. It can be heartbreaking for parents to see their child so scared and distraught at having to eat.
It’s helpful to remember that it’s the eating disorder that is causing this suffering and their efforts to help their child to a healthy weight, difficult as they may be in the short-term, will serve to save her from more suffering in the long-term.
Parents know and love kids, so that puts them in a strong position to help, though they might feel at sea initially. The right professional support–a specialist who understands eating disorders and how to help families fight them– is very important.
A therapist can help parents think of the eating disorder in a helpful light (as something separate from their daughter, not an expression of her will); help families (including siblings) work together to get the job done; help them stay focused and persistent. Later, once the eating disorder has receded, therapy can focus on returning independence and getting back to healthy development.
Family-based treatment is designed to help adolescents. Any advice for parents of young adults (and older) with eating disorders?
Eating disorders often onset during the teenage years, so it makes a lot of sense to address them as soon as we can to minimize suffering and give the best chance for full recovery. Early intervention is important, but that doesn’t mean that adults can’t recover.
In some ways, things change when a son or daughter becomes an adult, but in other important ways, they don’t. Families are still families, no matter what age the kids are, with the same love and connection they have always shared.
And families work on more than just a legal level. I don’t think there’s any reason for parents to give up on helping their kids after they are 18 or 21. (I’m 48 and I still listen to my mom’s advice!) Parents can provide information and resources, encourage treatment, and sometimes play a more active role in promoting recovery.
For adult bulimia nervosa, cognitive-behavioral therapy and medication are often helpful, but research doesn’t give much guidance on the best option for adult anorexia. Treatment guidelines suggest three steps in treatment.
- Weight restoration
- Treating psychological issues related to the eating disorder
- Reducing or eliminating the behaviors and thoughts related to the eating disorder, along with relapse prevention.
Given the nature of the disorder, step one is easier said than done. The hard truth is that people need to eat to recover from anorexia, and the disorder makes that very difficult and frightening. Family support can be really helpful, even for adults. In fact, the University of Chicago recently ran a case series using FBT for young adults with anorexia and results were promising. We have a short video on that here.
I don’t want to minimize the difficulty of recovery from anorexia nervosa, but I always hate to hear people referred to as “chronic cases.” To anyone who is suffering from an eating disorder, I’d say, Don’t give up. Find, and stick with, treatment professionals who are optimistic about recovery. Look for positive support from family and friends. I absolutely believe that recovery is possible, even for people who’ve been sick a long time.
Anything else you’d like to add?
I would tell any parent to hang in there and have hope. Eating disorders are tough, but beatable. Getting good information is an important first step. I’d recommend the book by Dr. Lock and Le Grange, Help Your Teenager Beat an Eating Disorder, to get up to speed.
For clinicians, the treatment manuals, Treatment Manual for Anorexia Nervosa: A Family-Based Approach and Treating Bulimia Nervosa in Adolescents: A Family-based Approach by Drs. Le Grange and Lock are a great resource. Therapists can find information on professional training on the Training Institute for Child and Adolescent Eating Disorders website: train2treat4ed.com.
A wholehearted thank-you to Jane for an incredibly informative interview!
Do you have any questions about helping your child recover from an eating disorder? If you’re a parent who’s helped their child recover, what advice do you have for others?