When you help the family, you help the patient
F.E.A.S.T. has been a leader in peer support for parents since 2007 when we were founded. In fact, our origins as an organization were in a peer support community online called “Around The Dinner Table.” Over that time, we have developed a moderator pool and a set of principles around peer support for parents and caregivers that is unique and grounded in many of the best practices in peer support and online communities.
Online peer support is valuable for a range of reasons, and at no time in history has it been so critical that we provide it. Families struggling with caregiving right now are often doing the full range of support for their ill family members without respite or in-person contact with trained professionals.
F.E.A.S.T. was ready, in terms of both technology and a mature and experienced caregiver community, for COVID-19’s unexpected shift for families all over the world to a home-based and isolated treatment and support environment.
COVID was not on our radar when we contracted in 2019 with Project HEAL to collaborate on a comprehensive Primary Caregivers Community of HEALing report. The timing of the publication was coincidence, but the results were particularly poignant as we all locked down in our homes with our families and faced the urgent need to be found by and support the families around the world newly isolated and unsupported in their homes.
“Realizing that life as usual is on a pause,” I wrote, when I submitted the draft report to the Project HEAL team on March 16. Indeed. And it still is for most of us.
By way of background, we received the grant from Project HEAL in 2019 to prepare a report of recommendations for Project Heal based on stakeholder interviews and surveys of a range of stakeholder types as part of their planning for an 18-month pilot program of their Communities of HEALing program for Primary Caregivers.
As part of the project, we distributed a survey in January to both F.E.A.S.T. and Project HEAL communities, and a team from F.E.A.S.T. began one-on-one interviews.
The report, published on June 22, 2020, was based primarily on that survey and those interviews. It represents a snapshot in time of the community’s insights on parent support, skills, and knowledge, as well as existing parent support resources. We consider it the first of its kind in our field, and we hope it will be a snapshot in time that will serve as a benchmark for more research and learning in addition to informing Project HEAL’s Communities of HEALing for primary caregivers.
The major finding and conclusion will be a surprise to no one: that parents and caregivers feel overwhelmed, unprepared, isolated, and afraid. Peer support, in the form of contact with other parents who have “been there” has been an important tool for helping families be better caregivers.
One of our stated Principles at F.E.A.S.T. is “When you help the family, you help the patient.” This was quite clear from the voices we heard.
We were not surprised by the need expressed by caregivers to have contact with others who understood their situation. We were somewhat surprised by the different forms that peer support took, and how peer support for caregivers differs from peer support between those suffering from eating disorders.
Families reported accessing peer support in a wide range of ways: from reading a blog post or book by a fellow parent, to formal in-person meetings moderated by a trained professional. Caregivers reported lasting benefit from a single chat over coffee and from daily participation on an anonymous online forum.
The word “support” took many forms for these caregivers. For some it was simply that they felt someone understood their situation and held them in positive regard, that another person was supportive. Others expressed little interest in emotional support because they were desperate for information and practical strategies they could learn from fellow parents.
Whether the peer support was formal or informal, moderated by a professional or not, there were also concerns about peer support that we are quite familiar with F.E.A.S.T. Not all peer support is helpful, and some peer support can be actively harmful. Given the chance to say so freely and anonymously, many families shared stories of feeling rejected, condescended to, and judged by fellow parents. These encounters caused lasting pain and further isolation for families in deep need of peer contact. Our report gave examples and suggestions based on those insights and more than a decade of moderating peer support forums.
The 71-page report is now available in full to the public, and includes a literature review and comprehensive tables listing all known peer support for caregivers all over the world, both virtual and (before COVID-19) in person.
Statistics on the respondents as well as illustrating quotes throughout offer a view to the spectrum of family experiences.
The survey and interviews were distributed to parents and caregivers but also to all kinds of stakeholders, including people with personal lived experience with an eating disorder and clinicians and advocates. In our report we contrasted the answers and insights of each stakeholder group on the topic of peer support for caregivers. While many non-caregivers were supporters of peer support for caregivers, this enthusiasm was not universal. Suspicion and distrust of parents, especially mothers, was evident in several comments.
To conclude the report, F.E.A.S.T. offered recommendations on the types of support, skills, knowledge, and delivery of peer support for parents and caregivers. Those recommendations included a focus on empowerment over instruction, and the need to meet a family’s needs in the moment rather than a single approach regardless of stage or situation.
The current research on eating disorder treatment supports the idea that those with eating disorders need multidisciplinary approaches and that family members form one of the disciplines on that team. Peer support for caregivers can be compared with the kind of training and mentoring that any treatment professional depends on to perform their jobs. The goal of parent peer support is also the same as for a professional: to support the patient as they move toward recovery. Parent and caregiver support is not to benefit the parent themselves, but the whole family, including the sufferer.
F.E.A.S.T.’s legacy of building a parent and caregiver peer support community put us in an excellent position to do this collaboration and write this report. We were honored to work with Project HEAL on this partnership, and we look forward to how this report is used and in how it is updated over time.