We’re In This Together: Collaborative Care for Eating Disorders

This week I had the pleasure of attending a workshop with Janet Treasure on collaborative care in eating disorders. Treasure focused her workshop on supporting caregivers of people with eating disorders, offering practical skills for carers and clinicians alike to improve interactions with those with eating disorders. Though I am neither a carer nor a clinicians, I got a lot out of the workshop, and it reminded me of a few of Treasure’s articles I’ve read over the years, and how much I appreciate her strong focus on working collaboratively with patients and families to facilitate recovery.

I especially appreciated how she aims to integrate those with lived experience (of either having an eating disorder or caring for someone with an eating disorder) in research and treatment design. Some of her journal articles, including this article on the potential for harm in existing treatment models, even include former patients as co-authors. As a community-based researcher, I can really appreciate the ethic behind this approach – it speaks to the “nothing about us without us” model that involves consulting those who have “been there” about decisions that will impact them.

I could wax poetic about the amazing article I noted above, but Tetyana beat me to it in this post. So, here, I’d like to comment on Treasure’s article with Rhind, MacDonald & Todd (2015) about the collaborative care model she shared at the mini-conference I attended.

Collaborative Care- “The New Maudsley”

Often, people use “family based treatment” to collapse a number of approaches including the “old” and “new” Maudsley models, not often attending to the differences between family-based interventions. Treasure’s current approach, stemming from work at the Maudsley hospital in London and her research at King’s College London, is referred to here as “the New Maudsley model” or New Maudsley Collaborative Care (NMCC) It is an intervention that targets the person in relation – specifically, in the family – as opposed to treating the person in isolation of their social network.

NMCC is an adaptation of an adaptation, in a sense: it takes as its base an adaptation of an FBT model for adult patients and uses a training model for families of sufferers that is similar to how medical professionals in inpatient units would be trained. A key element of NMCC is an understanding that problematic dynamics between the person with the eating disorder and others occur “in both the home and hospital” (p. 367) and so both clinicians and family members need to be trained in alliance in order to best support recovery.

In a brief quote, the ethic of the program is:

“To equip carers with skills that allow them to best support their loved one in a spirit of collaboration and compassion towards a healthier future” (p. 367)

Assumptions of the model include that:

• Eating disorders don’t happen in isolation, but those with eating disorders can feel very isolated
• Different stages of the illness lead to different issues, and those at different stages need different approaches
• Goals set in treatment should be realistic and attainable
• Carers need to care for themselves in order to be able to care for their loved ones

One of the main differences between the New Maudlsey Collaborative Care Model (NMCC) and FBT as you might know it (i.e. by Lock, LeGrange, Agras & Dare, 2001) is around nutritional goals; in NMCC, there is a more flexible attitude toward food. This is not to be mistaken for a negotiability of eating – that a person in treatment has to eat is not the flexible part. Treasure highlighted the need to replace problematic pathways developed around food with new memories of food (something that takes a good deal of time and repetition). This is achieved by working through an “extinction hierarchy,” which is more gradual than a more sudden parental control over eating. The difference is likely due to the different age group originally targeted- whereas FBT effectiveness studies are mostly with younger adolescents, Treasure has also been working with severe and enduring anorexia and with adults. NMCC is also very theory-driven (the “theory” in question being the cognitive interpersonal model, based on socio-emotional and cognitive maintaining factors for eating disorders – this could be the basis of an entirely different post but for now you can read about it here and here).

One of the core components of the NMCC models is the idea that carer’s ability to cope with the significant stress of assisting a loved one is key to the success of the intervention. This makes sense on a practical level; as Treasure said in the workshop, it’s the “airplane model” in that you should “put on your own oxygen mask before assisting others.” Following self-care, carers are taught to become in tune with how they respond to others.

Those using the NMCC model take the term “family” in a broad sense- it may include parents, but could also be a partner or a friend. Carers are not expected to be perfect; this is actually one of my favourite things about this model- as Treasure et al. write, “we explore the need for tolerating compromise, not perfection, and also instill a sense of hope, by ‘seeing the bigger picture” (p. 370). Importantly, this goes for clinicians as well as carers. However, I’d be surprised if all clinicians would be quick to admit to sometimes messing things up, or not being perfect- I think there is a huge expectation that clinicians be “perfect,” which could be problematic… but again, that could be the subject of an entirely different post.

Carer training involves role play, observation, and reflection around their:

• Communication skills
• Emotional regulation skills, using animal metaphors, where a “dolphin” is the “ideal”- for more on the animal model see this post on NEDIC’s blog)
• Accommodation and enabling, by using gradual goal setting with their loved one

I’ve written about outcomes elsewhere; a brief comment on the evidence base is included in this article and Treasure reflected on the growing evidence base in person. At the very least, people (both patients and families) in trials seem to like the approach and find it helpful.

Some Critique

Of course, I wouldn’t be me if I wholeheartedly accepted something, would I? All in the spirit of moving things forward, I do have a few questions about the model and its effectiveness, acceptability, and generalizability.

In the workshop, we watched a number of films that are shown to families themselves. They tended to show one scenario where a family was engaging in negative communication patterns, such as one parent being a “rhino” or essentially trying to force change or, on the flip side, being a “kangaroo” and over-protecting. Then we would watch a version where parents acted as “dolphins” (gently guiding) or “St. Bernards” (calmly authoritative). In each of these scenarios, the dialogue seemed quite stiff and stilted, and I couldn’t see things going that way in real life.

Treasure, to her credit, reflected on how it can seem this way to sufferers,especially at first, and they might say things like “which page of the manual are you reading from now?” or be otherwise angry about the approach. Still, I was curious about whether all families could completely rearrange their communications style (or wanted to) to adopt this approach. In general, I worried about the “cutesy” factor of the approach- I’m not sure I’d take to the animal metaphors, to be honest. I think it could feel somewhat patronizing. Then again, several studies have demonstrated that families do tend to like the approach, so perhaps I’m speaking from a place of personal dislike of the more “rah rah” elements of therapy, here.

Another concern I had was around the accessibility of this very family-involved form of treatment to diverse folks. This is a general critique of very family-involved treatments in general: what if mental health is not an acceptable topic within your culture? What if supporters can’t get time off work/afford to take the time to deeply engage? What if there are significant mental illnesses within the family besides the loved one’s eating disorder? This is especially concerning in light of the lack of insurance coverage for eating disorders; not to mention, I’m fairly sure few workplaces would be accommodating enough to allow a parent to take paid leave to take care of a child. Don’t get me wrong, I think it would be excellent if all families could access this level of care and be so involved in facilitating recovery, but I’m skeptical about it actually happening.

Finally, despite the very family-oriented (and so, environment-inclusive) approach, I am curious about the extent to which the approach hinges on changes happening within the individuals involved. Basically, the expectation is that people change their communication styles and behaviours to inhibit the illness. It makes sense on a logic level, but then when you think about the person out in the rest of the world, I wonder if it is setting up a different kind of “false reality” than other treatment settings (i.e. the hospital) might. In broader society, people don’t tend to “dolphin” – I see a lot of “rhinos” on a daily basis. Of course, this is more of a general issue with all therapy- as amazing and beneficial as it is, individual changes leave the problematic elements of society unchanged. Perhaps the key is to keep working at the individual level while also pushing for broader societal change.

Overall, I think this model holds a lot of potential- as I noted before, I particularly appreciate the collaborative side of Treasure’s work. It is so incredibly important to involve those who will be receiving care (including patients and others in their lives) in developing treatment and research. After all, if research and treatment are not working for those experiencing it, should we say they are in the wrong, or re-evaluate our methods? I think it is critically important to listen to the wisdom of lived experience and honour it in our approaches to treatment and research alike.

Reference

Treasure, J., Rhind, C., Macdonald, P., & Todd, G. (2015). Collaborative Care: The New Maudsley Model Eating Disorders, 23 (4), 366-376 DOI: 10.1080/10640266.2015.1044351