Severe eating disorders are on the rise among adolescents: How supporting their parents may be the most critical first step

Severe cases of eating disorders requiring hospitalization are on the rise among youth in the United States since the COVID-19 pandemic. Increased isolation, stress and access to social media focused on body image and body composition could be the reason. Anorexia nervosa (AN), an eating disorder characterized by a fear of weight gain and a distorted body image leading to intentional restriction of food intake, is one of the most deadly mental health conditions for adolescents and young adults in the U.S. Not only can it lead to acute life-threatening conditions like atypical heartbeats or electrolyte complications, but it also is associated with chronic mental health symptoms and premature bone loss.

Inpatient hospitalizations are only the first step for treatment, as recovery is an ongoing process requiring intensive interdisciplinary outpatient care, including medical, nutrition and psychological appointments. Many children with anorexia nervosa are at a high risk of not adhering to treatment recommendations, often due to low motivation for recovery. This is frequently compounded by significant parent distress, including feelings of guilt, self-blame and anxiety related to their child’s disease.

Engaging parents in treatment is critical to making sure their child is attending therapy and ensuring parents follow through on the many aspects of treatment that are necessary for recovery, such as meal planning, preparation and supervision. Yet, few interventions to date are providing regular intensive parent-focused support outside of family therapy in the outpatient treatment process.

Parent-focused support is especially powerful for families that may have notable barriers to care such as non-English speaking families, insurance-related barriers to treatment, transportation concerns, etc. Despite the longstanding stereotypes that only white, female, middle-class populations have anorexia nervosa, the rise of AN among males and Latino/a populations is on the rise and may be underreported and undertreated due to biases in diagnosis and access to treatment.

One way to support parents of children with AN is to provide them with a family navigator, or a person trained to provide psychoeducation and support via email, phone or text as needed to a family. Family navigators have been successfully utilized with other chronic illnesses such as autism spectrum disorder and type 1 diabetes. However, their use has not yet been explored in the context of families of children with eating disorders.

To address this gap, we recently conducted the first pilot study evaluating the feasibility and impact of a family navigator model for families of children with AN. This included 46 adolescents who recently were discharged from the inpatient eating disorder unit at Texas Children’s Hospital; 23 were assigned a family navigator and compared to 23 patients without a family navigator.

We found that children of parent’s receiving the family navigator intervention attended more outpatient appointments overall (medical, nutrition, mental health) compared to the historical control group, offering those patients a greater opportunity for recovery and relapse prevention. Parental satisfaction with the family navigator also was rated helpful or higher in the intervention group. Notably, the intervention was just as impactful for publicly insured, non-white and Latino/a patients as it was for white, privately insurance patients.

Every child with a severe eating disorder deserves care, regardless of their race, ethnicity or insurance status, yet many are not able to fully access the level of support they need due to difficulties navigating appointments, transportation issues, insurance coverage, cultural barriers to understanding or parental distress in managing the disease.

This pilot study was the first to better understand how a low-cost intervention like a family navigator may help improve access to care and facilitate recovery in at-risk patient populations. Future research should focus on larger scale randomized controlled trials to evaluate effectiveness. Additionally, policy efforts are needed to integrate family navigator models into standard care pathways and ensure sustainable funding mechanisms. For instance, future research can explore the cost effectiveness of having family navigators as part of the standard interdisciplinary medical team, such as having a nurse or medical assistant serving as a family navigator. The family navigator in this pilot study was communicating daily with the medical team to make sure providers were aware of parent concerns about their child’s behaviors or emotions to better inform treatment planning. Having that daily liaison between the parents and providers ensured that parent perspectives and concerns were addressed appropriately and that all providers were aware and able to use that information to tailor treatment to each individual patient and family.

 

By Dr. Liz Franklin, assistant professor of pediatrics, Baylor College of Medicine, clinical psychologist, Texas Children’s Hospital