Early responses to the call for family stories about experience with Family Based Treatment (FBT) for treatment of anorexia nervosa have been a revelation. I posted the call on my blog in October to invite first-person stories for the Second Edition of My Kid is Back – Empowering Parents to Treat Anorexia Nervosa.
I am co-authoring this book with a pioneer of FBT, Prof. Daniel Le Grange. My vision in the initial call-out was that stories in the Second Edition would be similar to those in the first edition, with updates on resources and so on. Wrong!
Responses from families in five countries reveal two important developments since stories for the first edition of My Kid is Back were gathered in 2008.
One significant early and concerning observation is that many families continue to struggle to find and access the right treatment quickly when a child develops symptoms of an eating disorder.
Against the background of fortunate families who receive a swift diagnosis of anorexia nervosa for their child, and equally swiftly are placed on an FBT regime, with the prompt outcome, within months, of their child getting their life back on track, other desperate families are receiving only piecemeal guidance from health professionals. In such circumstances, unsurprisingly, the application of Family Based Treatment (FBT) in the home often becomes ineffective. Many parents report they have no clear pathway of what to do, or where to go. Sometimes, online carer groups become a main source of information and support.
Prof. Le Grange emphasises that FBT, adherend to the foundation model, contains at least four of these five key therapeutic steps:
Prof. Le Grange strongly recommends that when seeking help and embarking on a course of FBT, parents inquire whether their therapist will adhere to these key therapeutic steps.
The focus of My Kid is Back Second Edition is FBT, and therefore, only the stories of those families whose experience has included at least four of the five therapeutic steps are eligible for inclusion in the new edition.
Importantly, My Kid is Back Second Edition will include cases where a family has experienced FBT failure or less than optimal results, but we have to be sure the family received FBT (not a half-baked quasi FBT lookalike). These unsuccessful stories are important to include because we must learn from such families why they have struggled despite receiving a dose of ‘proper’ FBT. If your family has experienced a less-than-positive result, I encourage you to get in touch and share your story.
My heart goes out to every family who has written about their experience with a partial or “cobbled” version of FBT. Prof. Le Grange and I agree that the situation for families who have been unable to access the correct FBT is of great concern and untenable, but the book we are writing right now is not the appropriate place in which to address this serious issue.
Another significant change that has emerged since the previous book shows great promise. This is the growth of bottom-up carers, that is, some parents who participated in FBT a generation ago have become experts-in-experience carers supporting families in the home.
This growth in parents-mentoring-parents has emerged following a generation of FBT implementation. This is one of those times where a ground-driven, community response has developed to meet a need and is ahead of the science. Some families write that their FBT experience was made possible by the ready support of an experienced carer – usually by email, phone or Zoom call – in their home.
This caregiver development will be explored in our new MKiB edition so that new families with an eating disorder are best informed and aware.
Being informed and aware is vital, as unfortunately, some well-intended people take the carer task on like a know-it-all crusade. Parents may be vulnerable when faced with the frightening experience of an eating disorder invading their peaceful home life. They may be susceptible to accepting help from, and paying, people who say they are ‘lived experience experts’.
Families need to be able to feel confident they have access to the best care at this time of great need. Right now, that is difficult for some families to know. The training factor needs an evidence base but this requires research and takes time to collect and study.
The new edition of MKiB will explore the trend to ‘parent coaches/carers’ in a way that informs and helps new-families-on-the-block to be aware of what help to look for, what to be wary of, and what ‘help’ can be most relied on. We need to help families be aware of the pitfalls and possible predators.
The key members of an FBT team comprise:
The main tenets of FBTt for anorexia are:
(1) the therapist holds an agnostic view of the cause of the illness;
(2) the therapist takes a non-authoritarian stance in treatment;
(3) parents are empowered to bring about the recovery of their child;
(4) the eating disorder is separated from the patient and externalized; and
(5) FBT utilizes a pragmatic approach to treatment*.
If your FBT experience has included at least four of the five therapeutic steps listed above by Prof. Le Grange, and you and your family would like to make your experience count by contributing to the Second Edition of My Kid is Back – Empowering Parents to Treat Anorexia Nervosa, I encourage you to fill out the form below: