Children's Hospital Colorado Eating Disorders Program: A Family-Centered Approach to Care
Jennifer Hagman, MD
Eating Disorders Program Director, Children's Hospital Colorado
Associate Professor, Pediatrics, University of Colorado
The Eating Disorders Program at Children's Hospital Colorado has been growing and changing since 1988 when David Kaplan, MD, and a multidisciplinary team first came together to organize services for this unique patient population. Jennifer Hagman, MD, has been the program director since 1993. Amy Sass, MD, oversees the adolescent medicine care in the program; Jim Masterson, LCSW, is the director of therapeutic services; and Margaret Kelley, RN, MA, is the clinical nurse manager of the program. Today, the Eating Disorders Team continues to provide specialized care on the inpatient medical floor in the main hospital, while the Eating Disorders Program, housed in the Gary Pavilion, includes a day treatment program, outpatient services and seven inpatient beds.
Our unique approach to treatment, described later, emphasizes providing families with the support and education they need to manage eating disorder symptoms at home to minimize time out of school and being away from their normal routine. The program treats children, adolescents and young adults through age 21. The program also has specialized services for Spanish-speaking families, providing services for more than 250 families a year. Over the past five years, we have experienced a significant increase in younger children, boys and families from more diverse cultural backgrounds presenting for treatment. The program is nationally recognized and close to 45 percent of families come from states beyond Colorado for care.
Family involvement in care
Children and adolescents with anorexia nervosa, bulimia nervosa and related feeding disorders need a family-centered care approach to interrupt life-threatening behaviors and restore them to optimal emotional and physical health. Focus on the importance of family involvement in the treatment of adolescent eating disorders dates back to the mid-1970s. Family therapy research at the Maudsley Clinic in London during the late 1980s and, more recently, Lock and LeGrange's Family Based Treatment Model (FBT), has strengthened and highlighted the importance of the family's role in treatment with impressive data supporting its efficacy. This body of work has been the primary driving force behind the development of the unique Parent Supported Nutrition (PSN) approach in the Eating Disorder Program at Children's Hospital Colorado. The development of this approach represents an extension and modification of FBT, outpatient treatment intervention, so that it is applicable at any level of care including inpatient and day treatment. For patients with an eating disorder, food is medicine, and successful outcomes are dependent upon families being able to interrupt the behaviors that interfere with health.
Every family has a "team," which includes a child psychiatrist, adolescent medicine specialist, therapist and registered dietitian. Adolescent medicine provides ongoing medical monitoring, including evaluation of growth curves to set a target weight range and assessment of potential medical complications. Also included is consultation around the child's gradual return to more normalized activity as their medical situation improves as well as providing management of comorbid medical conditions and the patient's overall health and well being. The child psychiatrist evaluates the overall severity of the eating disorder and the intensity of co-existing anxiety, depression and obsessional symptoms. In addition to the group therapy program for children and parents, therapists provide individual and family therapy sessions each week. Therapists from the Ponzio Creative Art Therapy Program provide yoga, movement, art and music therapy for children and in multi-family group activities.
A multidisciplinary approach to treatment
The core elements of PSN include a multidisciplinary approach to treatment, with parents working closely with the team, learning how to plan meals commensurate with their child's nutrition and medical needs and building skills to provide effective supervision to interrupt eating disorder behaviors. A key component of this approach is parental involvement in the daily nutritional needs of their child in all levels of care. Parents work closely with the program dietitians and patients are aware that food choices are being provided by parents, not program staff. For most families, this represents a major shift in the management of daily nutrition for a child or adolescent with an eating disorder, in that prior to entry into our program the patient and their eating disorder symptoms are typically controlling daily nutrition intake and too often, daily family life. Parental anxiety often leads parents, with the best of intentions, to accommodate eating disorder-driven food preferences which become progressively more limited in variety and nutritional value. The resulting cycle of parental frustration and resistance from their child inevitably leads to a decline in health and the persistence of eating disorder symptoms. Placing parents in charge of daily nutrition then becomes an initial requisite treatment intervention for all families in our program.
The shift to parental control of daily nutrition and the elevation of the parents' role in treatment occurs immediately in our program and remains embedded in every parent-staff interaction. The shift of nutrition decisions to the parents often causes a pronounced reaction from the patient and some parental anxiety. However, these reactions and their resolution are an initial therapy focus. Parents know their child's food preferences better than anyone and learn how to incorporate these foods into the structure of a well-balanced meal plan. Meal plans can then be adjusted to support weight restoration or maintenance in a thoughtful and effective manner. This process empowers parents as they work closely with the dietitian, learning meal planning during the first week of treatment and writing meal plans individualized for their child throughout the episode of care. Program staff work with parents to support this new sense of empowerment and confidence in their ability to feed their child in a manner commensurate with treatment goals. Interestingly most patients accept this shift without much difficulty initially, but the tenacity of eating disorders often finds the patient intermittently challenging parental control. The process of helping parents meet these challenges then becomes a key component of therapy, and staff will often defer to the parent as "nutrition expert." It is explained to the kids that this shift is temporary and that age appropriate control of daily nutrition will be handed back as the patient is able to handle this responsibility. It is also emphasized that this return of control will occur gradually and with input from the treatment team as well as parental assessment. Learn more about our treatment philosophy.
Extra support during meal times
Not surprisingly, meal times can be quite stressful for families with a child or adolescent suffering from an eating disorder. When patients are in the day treatment or inpatient program, parents come for dinner every night and families eat together in the cafeteria, with staff support for coaching and assistance during the meal. This helps families gain confidence and build skills to manage difficult emotions which meal times often trigger for both kids and parents. In addition to Family Rounds with the treatment team and two multi-family groups a week, the program includes two groups a week just for parents, where they have the opportunity to interact and share their experience with other parents struggling with similar challenges. Parents have the opportunity to learn in a non-judgmental atmosphere how they may have inadvertently accommodated or helped to maintain the eating disorder and how they can better support recovery.
As parents' confidence in their ability to manage meals and maintain control of daily nutrition and activity progresses, patient motivation for recovery becomes a less critical variable in treatment. Parents learn the communication and therapeutic approaches utilized by the team, and build understanding about how different interactions with their child can either facilitate or impede motivation for recovery. While this remains an important focus of individual work with the patient, parent education and confidence allows less than motivated patients to transition more quickly to lower levels of care, including returning to school.
While eating disorders continue to be very challenging illnesses to treat, one dominant factor emerges: the importance of family involvement in treatment. Our family-centered approach to care, with parent-supported nutrition, has decreased lengths of stay, improved family satisfaction and resulted in quicker return to home and school settings. While family-based treatment was designed as a child and adolescent intervention, our experience is that modifications of this approach can be quite effective with older adolescents (ages 18-21) as well.
In addition to providing evidence-based clinical care, the Eating Disorder Program mission includes a focus on advancing our understanding of these illnesses and improving treatment interventions. Active research in the Eating Disorders Program includes a study to identify factors present at the time of admission which contribute to response to treatment, studies of medications for the treatment of eating disorders and a translational research study in collaboration with the Clinical Trials Research Center and the Center for Nutrition, which seeks to understand the impact of progressive dietary depletion and increased activity in onset of anorexia nervosa and the potential for alternative approaches to refeeding and weight restoration.
Associated with the Eating Disorders Program is the Developmental Brain Research Program (DBRP), headed by Guido K.W. Frank, MD, Assistant Professor of Psychiatry. The DBRP, through NIMH and Foundation grants, explores biological and psychological factors that may contribute to eating disorders, and develops novel methods for treatment and assessment of individuals afflicted with eating disorders, as well as other psychological and psychiatric illnesses. Research currently underway includes state-of-the-art brain imaging methods such as functional magnetic resonance imaging (fMRI). Those techniques allow us to study how the brain works while the study participant performs a task that tests reward to food or fears related to shape and weight. The goal of those studies is to identify brain pathways that may be altered and contribute to development and or maintenance of the illness, and that could become a target for treatment interventions.
To refer a family to the Eating Disorder Program or for additional information about the clinical or research programs, please call (720) 777-6452, or (800) 624-6553.