Today The Redleaf Practice welcomes a guest blogger, Belinda Caldwell, who is a carer consultant and project manager with the Victorian Centre for Excellence in Eating Disorders. Belinda is the mother of a daughter who developed anorexia nervosa in 2011 at the age of 16 and participated in treatment at the Royal Children’s Hospital in Melbourne with FBT. She previously worked as CEO of APNA, the peak professional organisation for nurses in primary health care and has worked in a variety of primary health care organisations over the last 20 years, managing a range of health improvement programs and projects. She is on the board of Families Empowering and Supporting the Treatment of Eating Disorders (FEAST) and is a carer representative on a number of state/national committees. Belinda is passionate about the role of families in early intervention, effective treatment and sustaining recovery.
I know Belinda would like to stimulate some discussion around the ideas in her blog post below. Comments can be left below or on our Facebook Page
Beyond the search for the perfect ‘model’ – Family Led Refeeding and Recovery
Treatments for eating disorders in adolescents and children, in particular Anorexia Nervosa or AN-like eating disorders, have been transformed in the last decade or so with the introduction of family inclusive treatment. We are now able to achieve relatively quick positive outcomes for a significant number of young people through early aggressive focus on refeeding and weight restoration with families driving the process. Family based approaches were initially developed by Russell and associates and were then refined and manualised by Lock and Le Grange. From these beginnings we are now seeing a range of models and adaptations. In many ways we discovered a magic pill in family based approaches to AN. But it is a pill with many ingredients, and we are not especially clear on which ingredients make more or less of a difference.
We are in a situation where research is telling us that there are no models that are providing much better than about 50% success in full reduction of eating disorder symptomology. What concerns me is a focus on finding the ‘new’ model, when I hypothesise that the relatively similar outcomes between all the family involved models (FBT, APT and MFT-AN) derive from two key shared components – family led refeeding, and focus on weight restoration – and that some of their differences may contribute small equal amounts. We do not have any evidence on which modular components within treatment models are more impactful than others e.g. family meal (FBT), phases (FBT), dietician or not (APT), additional psychological interventions (APT), family therapy activities (MFT-AN) etc.
The high rates of relapse and failure to remit we still experience in managing this illness in young people, behove us as a community to urgently work out what these essential ingredients are and build on them, as well as work out missing ingredients not yet fully explored to research and add into the overall recipe. I will use my personal experience as a carer, carer consultant, member of an eating disorders clinical team and informed parent advocate, to posit my own theory of what the essential ingredients are and the missing elements worthy of further exploration and research.
Attending the recent ANZAED 2017 conference, I participated in a workshop on Adolescent Parent Therapy (APT) based on Adolescent Focussed Therapy (AFT). It is a model of treatment which uses individual therapy by a therapist with the adolescent, alongside parent led refeeding with the assistance of a dietician. AFT theory originates from a self-psychological model and views anorexia as a maladaptive coping tool used by the adolescent to manage the complex demands and transitions associated with adolescence. AFT consists of three phases of treatment spread across approximately one year. Although AFT is an individual approach it makes liberal use of separate sessions with parents with the aim of engaging and educating them about anorexia.
In our family we undertook Family Based Treatment (FBT) as part of a research trial at the Royal Children’s Hospital in Melbourne. FBT tasks families with refeeding the young person with AN in weekly sessions with FBT therapist, family and young person; has three phases over 6-12 months; and does not involve individual therapy for the young person. It is agnostic as to cause, focusses on symptoms in a pragmatic way and the therapeutic alliance is primarily between the parents and the therapist. The trial we were involved in also had an arm where the parents and the therapist met without the young person in the room (Parent Focussed Treatment PFT) and the results for this group were mostly better than our arm.
In my work as a Carer Consultant at the Victorian Centre of Excellence in Eating Disorders (CEED), I have had the privilege in being involved tangentially in the roll out of Multifamily therapy for AN (MFT-AN) in CAMHS services. MFT-AN is an intensive group program run by the Maudsley Hospital UK since 2000 for families with a young person experiencing AN. The program we run involves 5-7 families in an intensive 4 day workshop, complemented by more standard FBT in a CAMHS setting. MFT-AN draws on the principles of FBT and consists of structured and guided activities, including active support at meals, group therapy, family therapy and psychoeducation, along with creative and reflective activities. MFT-AN promotes a return to physical wellbeing through weight gain and normal eating, as well as encouraging appropriate adolescent development and strengthening family relationships. MFT-AN provides an intense, collaborative environment for families to share experiences and practice new ways of doing things.
At CEED, I have also been involved tangentially in a project training facilitators to deliver Collaborative Carer Skills Workshops (CCSW) across Victoria. CCSW is an evidence-based carer intervention that has been shown to reduce psychological distress, burden, expressed emotion and emotional over-involvement in carers of people experiencing an eating disorder. It involves 6 weeks of weekly workshops for carers.
The other treatment option often offered is CBT-E for Adolescents which is based on the CBT-E model for adults. It is a behaviourally oriented individual therapy model involving engagement & motivation, formulation and understanding, changing eating behaviour, addressing over-evaluation of weight and shape, problem solving and maintaining change. The same treatment approach is used with adolescents with the only significant difference being the routine involvement of the patient’s parents, although what this looks like is not clearly articulated.
When I reflect on my family’s journey, and the journeys of the many families I have come into contact with since, in my role as Carer Consultant at CEED and as a Board Director/Executive Director of F.E.A.S.T, I see some core components for success no matter the treatment model.
For our family, being integrally involved as a family in the leadership of our daughter’s recovery was both instrumental to both her return to good health, and our families sense of agency in what is frequently a paralysing illness. Being empowered to make the decisions of what to feed and when, how much exercise to allow, strategies for symptom alleviation, was both scary and confidence building. And as families we are required to provide assistance well beyond when most people leave formalised treatment, so our feeling confident and enabled to provide this support is critical to continue the work needed and prevent relapses. When hearing the presentation on Adolescent Focussed/Parent Therapy, my gut response to some of the presentation was strong ambivalence at the sense of the family being somewhat sidelined in terms of leadership, with the stronger therapeutic relationship/alliance being between the therapist and the young person. While I recognise that it is not possible in all family situations for the treatment to be led by the parents, it seems to me this should at least be the first option offered, with the key therapeutic alliance between the therapist and the family.
However, just letting families lead the way is not sufficient. Some families are better resourced internally, professionally and environmentally to be able to embrace this role. Additional skills and knowledge are frequently needed to complement existing strengths. We certainly found we were very reliant on online information sources and informal peer support in the absence of this support in our experience of treatment. In the research trial using manualised FBT, we were more or less told “you know how to feed your child”. We did not know how to feed a malnourished child with an intense phobia of eating. We credit much of our success to our access to online information and peer support. It would seem to me the desirable elements for good treatment could include the additional support provided to families in AFT both in terms of family education and access to a dietician, and the very hands on team support with skill building e.g. meals and peer support provided in MFT.
All of these models, with the possible exception of CBT-E (role of family poorly explained), have families take the lead on refeeding the young person. The focus on family led refeeding is in response to the compromised ability of the young person to understand they are ill or the need for weight gain and the intense fear they experience on eating. This change of focus in treatment over the last 10-20 years to move away from requiring young people to be ‘ready’ for change to tasking families with refeeding has changed the landscape of eating disorder treatment to a more optimistic recovery focussed one.
A challenge I found when listening to the AFT/APT presentation was the theory of causation which is that AN develops as a maladaptive response to the challenges of adolescence. For us, our daughter had always been extremely anxious since a baby but adolescence seemed to pose no particular additional problems. Her rapid plunge into severe AN occurred after a trip to Nepal where she lost a lot of weight in a short period of time, experienced several episodes of hunger whilst trekking which made her feel calm and yet, even beyond that, the behaviours and rapid descent into AN hell was beyond any simple explanation for both her or us – it was a compulsion that took on a life of its own. For me, the neurobiological explanations of AN offer the best framework for explaining this loss of the child I knew and explosion of inexplicable bizarre behaviours. Families wherever I go have completely and utterly different stories of the journey into AN and some can fit theories of bullying, trauma, maladaptive responses to adolescent challenges and others are more like ours, a bolt out of the blue, weight loss for some reasons, either dieting or unintentional. Yet others experience the onset of illness as an extension of OCD or ASD traits. Whenever I hear theories of causation, I get concerned because it is likely to feed into treatment approaches which may or may not fit the individual circumstances. We do not currently have any evidence for what causes AN. Saying things cause AN or AN is a response to x, even with the best of intentions, can lead to families blaming themselves which is a key contributor to families feeling disempowered.
One of the difficulties we experienced in manualised FBT was a lack of attention on our daughter’s pre-existing comorbidities during FBT. We never made it to Phase 3 of FBT, where some of this discussion occurs, due to the timelines of the research trial. Even those who do get to the end of treatment, often experience a lack of priority on the often extensive work that may need to be done individually with our young people after weight restoration and cessation of ED symptoms. The actual journey of having an eating disorder seems to exacerbate pre-existing anxiety, depression, and body image concerns or lead to their development when they may not have existed before onset. Whether they predated the illness or arose out of the illness, not addressing comorbidities and giving our young people the skills to manage them, can leave them vulnerable to relapses because they have now learnt that restriction, exercise or purging are soothing. CBT (along with Acceptance Commitment Therapy, Dialectical Behavioural Treatment and more) provide very useful strategies for our young people to adopt.
Finally, the journey for families is long and traumatic. Much of it occurs outside of formalised treatment settings. Phase 2 in FBT for many families, including ours, is a long dance of allowing the child some independence in eating and taking back food decisions when they struggle. Family dynamics change and orient around the child with the illness. Siblings get sidelined. The number of therapist sessions at the end of treatment are frequently insufficient to return the adolescent to his/her normal trajectory and the family back to a normal functioning family. This can have ramifications for years with families overreacting to wobbles in our young people or not reacting fast enough, siblings disengaging from the family or having their own mental health struggles. And families who are compromised as a result of the first episode of AN, really struggle to provide the care needed in subsequent relapses should they occur. To improve outcomes in adults with AN, we need strong, supportive and empowered families not shattered ones.
What has been key to my own family’s journey has been access to a wide range of peer support. I sought out online peer support in the form of the Around the Dinner Table online forum, and through that developed friendships with some key families in my home town. These connections gave me hope that recovery is possible, ideas for strategies, confidence when I was feeling defeated, and general support from people who ‘got it’. It normalised our experiences and made us feel more able to see a way out. In an illness which deeply challenges one’s own resilience, can be pretty traumatic and tends to isolate families within in their own communities, peer support is critical. I now provide carer consultations to families undertaking treatment (FBT) in our CAMHS services and we frequently see startling shifts in family approaches and successful refeeding when having access to a fellow ‘expert’ parent, even if for just one visit.
If I had to design my ideal mix of ingredients, it would have elements of all the models discussed above plus a few more. It would include:
- Support of family leadership in the treatment team
- Key therapeutic alliance for refeeding and recovery is between the therapist and the family, unless contraindicated
- Provision of significant knowledge and skill building programs for families
- Provision of peer support from time of diagnosis, preferably formalised
- Care to take place as close to home as possible to enable continued community support for families and engagement of young person in normal daily life as soon as able to.
- Refeeding to a healthy weight as a critical non-negotiable element of treatment
- Avoidance of causation based theories until we have any strong evidence to support them
- Focus on treatment of comorbidities as part of treatment
- Stronger support for families in the recovery phase to return to normal functioning with regular ongoing checking in
I would call this set of principles “Family Led Refeeding and Recovery” to reflect both the refeeding/weight restoration ingredients but also include all the other ingredients needed for full recovery of both the young person and the family.
- Russell GFM, Szmukler GI, Dare C et al. An evaluation of family therapy in anorexia nervosa and bulimia nervosa. Arch Gen Psychiatry 1987;44: 1047-56
- LE GRANGE D. The Maudsley family-based treatment for adolescent anorexia nervosa. World Psychiatry. 2005;4(3):142-146
- Eisler I, Simic M, Hodsoll J, et al. A pragmatic randomised multi-centre trial of multifamily and single family therapy for adolescent anorexia nervosa. BMC Psychiatry. 2016;16:422. doi:10.1186/s12888-016-1129-6.
- Lock J, Le Grange D, Agras WS, Moye A, Bryson SW, Jo B. Randomized Clinical Trial Comparing Family-Based Treatment With Adolescent-Focused Individual Therapy for Adolescents With Anorexia Nervosa. Arch Gen Psychiatry. 2010;67(10):1025–1032. doi:10.1001/archgenpsychiatry.2010.128
- Dalle Grave R, Calugi S, Doll HA, Fairburn CG. Enhanced cognitive behaviour therapy for adolescents with anorexia nervosa: An alternative to family therapy? Behaviour Research and Therapy. 2013;51(1):R9-R12. doi:10.1016/j.brat.2012.09.008.