I had the honor of presenting a workshop yesterday along with Therese Waterhous, PhD/RDN, CEDRD. and Lisa LaBorde, Outreach Director for Families Empowered and Supporting Treatment of Eating Disorders (FEAST) at the IAEDP Symposium 2016. Our workshop was entitled, From “Worst Attendants” to Partners in Recovery: Empowering Parents as Agents of Change for Children and Adolescents with Eating Disorders.
A growing body of scientific research demonstrates that parents and caregivers can be a powerful support for a child in recovery from an eating disorder. This model of care is a radical shift from the traditional individually focused therapeutic approach and requires significant changes in how patients and families are treated within a clinical practice.
During my section of the presentation, I presented Five Reasons to Include Parents in treatment for youngsters with eating disorders. I share them here:
- The reason to exclude parents was based on theories that have now been debunked.
In the late 1800s Gull suggested that families were “the worst attendants” for their children with anorexia nervosa, and this set the tone for many years. More recent perpetrators of this viewpoint were Hilda Bruch and Salvador Minuchin. In the historical treatment of eating disorders, parents were blamed and the children were taken away to be fixed by professionals. When ultimately sent back home, parents were told, “Step back,” “Don’t get into a battle for independence, “ and “Don’t be the food police.”
These practices were based on early theoretical models for eating disorders that have not been supported by empirical studies. Research has not been able to identify any particular family pattern that contributes to a child’s eating disorder.
- Best practices now state to include parents (and not blame them).
As the following clinical guidelines demonstrate, it is no longer the appropriate standard of care to exclude families from treatment.
The Academy for Eating Disorders’ position paper on The Role of the Family in Eating Disorders:
- The AED stands firmly against any model of eating disorders in which family influences are seen as the primary cause of eating disorders, condemns statements that blame families for their child’s illness, and recommends that families be included in the treatment of younger patients, unless this is clearly ill advised on clinical grounds.
The Nine Truths About Eating Disorders consensus document, produced in collaboration with Dr. Cynthia Bulik, PhD, FAED states:
- Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.
The American Psychiatric Association (APA) Guidelines for Eating Disorders also advises:
- For children and adolescents with anorexia nervosa, family involvement and treatment are essential. For older patients, family assessment and involvement may be useful and should be considered on a case-by-case basis. (p.12)
- Research shows better and faster results when parents are included in mental health treatment for their children.
Randomized controlled trials of adolescents with anorexia nervosa and bulimia nervosa show that adolescents who receive family-based treatment, in which parents play a central role, achieve higher rates of recovery and recover faster than adolescents who receive individual adolescent focused therapy. This result is consistent with findings for other psychological disorders, including Obsessive-Compulsive Disorder (improved outcome is found when families are included in treatment) and schizophrenia (a large scale study found greater improvement when treatment included family education and support as part of more comprehensive care).
- Parents are often good allies in fighting eating disorders.
On the one hand, patients with eating disorders (and especially younger patients) are often significantly impacted by malnutrition. Research shows they commonly have a decrease in brain grey matter, cognitive deficits and anosognosia—a lack of awareness that they are ill. Recovering on one’s own is commonly difficult for an adolescent whose brain is not fully developed and may lack the cognitive ability to challenge negative thoughts, change behavior patterns, and resist urges. Furthermore, they commonly lack the independence adult clients have to purchase and prepare their own food.
On the other hand, parents are there to take care of their children. They can do the heavy lifting. They can be authoritative and require children to eat. It can be difficult for a therapist to develop rapport with a reluctant and resistant adolescent; it is much easier for a therapist to develop a therapeutic alliance with the parents who do want their child to recover. In situations where there are multiple treatment providers, parents can help with the communication between team members as they will likely be seeing them all. Lastly, parents typically buy the food for the household so they have the ability to execute the meal plan.
Eating disorders often take years, not months, to fully resolve. There will rarely be a scenario in which a patient leaves home for a residential setting and comes home “cured.” The reality is that any treatment is only the first stop on the road to recovery–full recovery takes sustained full nutrition and cessation of behaviors for an extended time period and the family, in many cases, can help that happen. So whatever treatment model is used, FBT principles and training are vitally important for families.
- Parents are powerful.
In the past, mental health treatment was primarily private; the internet has changed that. Parent support and activist groups such as FEAST, Eating Disorder Parent Support (EDPS), March Against Eating Disorders, International Eating Disorder Action,and Mothers Against Eating Disorders have connected parents, given them access to scientific information that was not available to parents pre-internet, and given them the tools to organize. Social media has increased the pace of this information. Parents have access to evidence-based information and are demanding treatment that aligns with it. If they are shut out from treatment, they will hear from other parents that this is problematic. They may change providers if they are dissatisfied with the treatment their child is receiving
There is no greater love than the love of a parent for their child. To work with parents and empower them to help their children get well is one of the most rewarding aspects of my work.