Guest post by:
Andrea B. Goldschmidt, Ph.D., Eva-Molly Petitto Dunbar, M.A., Abigail Donaldson, M.D., & Christina Tortolani, Ph.D.
Imagine that you are a single mother who emigrated to the US from the Dominican Republic and English is your second language. For the past several months, your 14-year old daughter has been steadily losing weight and withdrawing from her friends and activities. She is not her usual self, but you haven’t been able to figure out what’s wrong. You’ve taken her to her pediatrician who believes she may have an eating disorder, but the doctor politely tells you this is not their area of expertise and refers you to the nearest eating disorder clinic (if you are lucky enough to have one nearby). You’ve been told that it will be 3 months before you can be seen, but in the meantime you should seek psychotherapy.
From a brief internet search, you’ve learned that anorexia nervosa is a deadly psychiatric disorder, often grossly misunderstood and under-diagnosed, but that if treated within two years of diagnosis, 50-60% of adolescents recover with family-based treatment (FBT). There is hope! However, after calling 10 local therapists, you’ve learned that three take your insurance, but of those, none speak Spanish and none of them are trained in FBT. You would need to travel 100 miles each way to the nearest city to receive FBT. Unfortunately, between working two jobs, the cost of gas, and insurance barriers, this is not feasible. You find yourself taking your daughter to a non-eating disorder specialist who is doing the best they can, but she is continuing to lose weight and you feel helpless.
What do you do next?
Since you are visiting this website, some aspects of this story are probably very familiar to you: perhaps feelings of helplessness about your child’s rapid weight loss, scrambling to find a provider who is trained in FBT and takes your insurance, a sense that there are no supports you can access that will be effective. While some of the details may vary, the overall picture is often the same. Although it is well known that the majority of individuals with an eating disorder struggle to access treatment (with some never accessing treatment at all—just see the blog post from August 2), these difficulties are compounded for individuals from lower socioeconomic and/or racial/ethnic minority backgrounds.
Providers trained in FBT are few and far between, and if you are fortunate enough to have a provider in your area, they probably don’t accept public insurance or offer treatment in a language other than English. Furthermore, many socially disadvantaged families face additional challenges—for example, working two jobs, working long and/or irregular hours, language barriers, taking care of multiple children and other family members living in the household, and facing cultural stigma around seeking mental health treatment—and you can see how families from these backgrounds could easily not make it to their first FBT appointment, should they even get far enough in the process to make one.
For the past two years, our team in Rhode Island have been systematically working to improve the outlook for families like the one we described above. Although we all know that FBT is the first-line treatment for adolescents with anorexia nervosa, and can be a godsend for those who are able to implement it, the treatment is not available to many families.
We believe this is simply unacceptable.
Additionally, many families do not have the resources or support to monitor their child’s behavior in the ways asked of them in standard FBT. One way we’re trying to improve the reach of FBT is by bringing it to families rather than expecting families to come to us—quite literally. Our team has been developing and pilot testing a protocol to adapt FBT for the home setting. Home-based FBT looks a little different than traditional FBT—obviously it takes place in the home rather than the office or clinic, but it is also offered in a short, intense format (3-6 hours per week over 12-16 weeks), may include multiple family meals at home, school, and in the community, and allows for the therapist to take on a broader role as an additional support person for the family. Yet the basic tenets are the same: Parents are the key to recovery, some may just need a bit more help than others.
Some key things we’ve learned along the way:
- Home-based treatment presents a host of opportunities to enrich the experience of FBT. For example, providers can better assess for appropriate and culturally sensitive food selection, and observe familial interactions in the setting in which family members are likely most comfortable.
- Providers can be creative about the ways in which they use their time. Since home-based services are designed for individuals with psychological difficulties that are too acute and/or severe for traditional outpatient treatment, insurance companies typically require a minimum number of contact hours per week in order to provide coverage (3-6 hours per week, on average, as mentioned above). This means that providers can intervene in many ways outside of the actual family therapy session—like supervising the adolescent’s meals at school, assisting caregivers with meal preparation and grocery shopping, and accompanying the family to medical appointments to facilitate continuity of care and communication within a multidisciplinary team.
- At the same time, home-based treatment presents many challenges that don’t really need to be considered in office-based settings. For example, providers need to be mindful of safety-related and ethical issues when entering a family’s home, especially for the first time. How can confidentiality be preserved if there are people living in the home who will not be involved in treatment? What if the home is in an unsafe neighborhood, or there are concerns about violence among household members?
- In the home-based setting, providers need to be particularly careful to observe boundaries that will support and empower parents, without overstepping their role in the difficult task of nourishing their child with an eating disorder. What are the interventions that will be most helpful to the family at a given moment in time, but won’t leave caregivers feeling like they are unable to continue the hard work of FBT on their own?
- Families that present for home-based treatment may have more complex needs than those that have the resources to attend office-based treatment. These families are often from diverse sociodemographic backgrounds, as mentioned above, but may also have previous or current social services involvement, have recently immigrated (with or without documentation), and lack time, finances, and social support to implement FBT “by the book.” In addition, many of the adolescents presenting for home-based treatment have severe comorbidities that often interfere with treatment—e.g., reactive attachment disorder, conduct disorder, and disruptive behaviors such as frequent running away or truancy. Providers need to be particularly sensitive to cultural issues that come up in the context of treatment, and to the possibility that families may not immediately trust a new provider.
- Clinicians who provide home-based treatment may be at higher risk for burnout. The treatment itself is time-intensive, not even accounting for time (and money) spent traveling to and from the home and other community settings. The usual challenges treating eating disorder patients are often compounded in the home and with the complexity of families that typically present for home-based treatment. It is critical that providers consult with colleagues about the effects of implementing home-based FBT on their own mental health, and carefully consider the boundaries of their competence. It may be helpful to include a mixture of office-based and home-based families on one’s caseload to ease some of this burden, especially when starting out.
We have been offering home-based FBT to families in Rhode Island since 2017, and so far, we’ve had an amazing response rate with 96% of families who are offered the treatment eventually enrolling. Many of the families we’ve treated are doing remarkably well—and these are families that would otherwise probably have had limited access to quality treatment, and in all likelihood zero access to FBT.
We encourage providers to consider adapting FBT for families that qualify for home-based treatment, and add to our “tips of the trade” above–we are continuing to refine the home-based adaptations to improve the treatment for stakeholders, and we hope to formally test the effectiveness of home-based FBT in the coming years. Our ultimate hope is that, should the treatment prove effective, it would open up a new avenue for families who struggle to find quality care for eating disorders. This is something we can all get on board with! Stay tuned…