In 2022 it’s so hard to fathom that regularly family caregivers worldwide (this is not just a USA problem) are still are asking me how other families manage all of the; logistics of getting access to treatment, managing their own fears and distress, helping their loved one manage fears and distress, supporting a loved one through treatment in general and that is just the tip of the iceberg of pain.
Many of you know that one of my goals is to see the field change the Standard of Care for eating disorders to include support for the families.
Those who’ve worked with me 1:1 to help support a loved one to recover, have seen them improve to the point they are not consumed by the eating disorder and most if not all, have a life without their eating disorder. The parallel process you have done as caregivers and the support you have gotten is different than the “Treatment As Usual” in which family caregivers are given education and minimal ongoing support for their own needs.
Years ago a small study was done with The Emily Program in which our programs that we had back then were studied to see the impact on family caregivers. This small study showed that distress was reduced and coping skills increased. Our programs and services have grown since then. Let me know if you’d like to see the paper.
Now I’m thrilled to see this research in Spain on the Family Connections support developed by Dr Alan Fruzzetti and Dr. Perry Hoffman. Initially developed for Borderline Personality Disorder and Emotional Dysregulation and now being studied for use with families of those with eating disorders.
Here is the research information, link to read it and the paragraph that stood out to me:
Family Connections vs Treatment at Usual Optimized in the treatment of relatives of people with eating disorders and personality disorders: Study protocol of a randomized control trial – Verónica Guillén ( veronica.guillen@uv.es ) Universidad de Valencia Sandra Pérez Universidad de Valencia Joaquín Garcia-Alandete Universidad de Valencia Isabel Fernandez-Felipe Universitat Jaume I Castellón Jose Heliodoro Marco Instituto Salud Carlos III
“Psychoeducation groups for relatives of people diagnosed with BPD provide information about the illness and, thus, help them to understand some of the behaviors of their family members, in order to improve the relationship and family coexistence [30–33]. Fruzzetti’s group developed and tested the program Family connections: A program for relatives of persons with Borderline Personality Disorder (FC) [34], which is designed to be delivered either by professionals or by relatives who have previously completed a training course. The FC program contains 12 two-hour weekly sessions. The content of the intervention program is divided into six modules and includes: psychoeducation about BPD, how it affects family functioning, skills adapted from DBT [29] (individual, family, and relational skills, validation exercises, and problem-solving skills), and peer support. All the modules include specific practical exercises and homework assignments. In addition, throughout the FC program, there is a forum where participants can build a support network. To test the efficacy of FC, five uncontrolled clinical trials have been conducted so far, with pre-post evaluation moments and follow-ups [34–38]. The results of these five studies show significant decreases in family members’ subjective experience of illness burden, perceived distress, depression, and grief, as well as improved coping strategies. These changes were maintained at the three month follow-up.”
Together, we can all keep pushing for the field to see the differences in treatment outcomes when family caregivers get the ongoing support needed along with the education about the illness. Please see the research paper here to see the difference this support makes for the entire family.
In the meantime, families seeking support who cannot access 1:1 coaching can access this simple, cost effective way to get the concepts needed into their lives with our HUG Kits. I don’t see the HUG Kits as a replacement for the 1:1 coaching, rather a doorway to beginning the work of doing the parallel process with the intention that the caregiver will be empowered to find that 1:1 support and group support that is needed for the long haul.
You and I together really can make a difference. If you or someone you know has a similar hope of changing the Standard Of Care for treatment of eating disorders to include support for the family caregivers, please reach out.
Take care,
