I feel like a broken record when I say that we continue to lack an evidence base for most “alternative” forms of support for eating disorders. As I’ve noted in prior posts, just because something is not evidence based does not mean it does not work for anyone; often, an evidence base is established when researchers can secure enough funding to run a randomized-controlled trial (RCT) that would act as evidence.
Even when an RCT has been run, it is hard to say that one form of treatment is best for all. People with eating disorders, like people in general, respond to different things, based on personal preference, history, culture, age, gender, and so many other factors. It feels a bit simplistic to write that, but I sometimes think we need a reminder of that fact!
Ultimately, and unsatisfyingly, it can be hard to predict what will work best for someone to support their recovery. This can also change over time, as people’s life circumstances and desires change. Recently, I’ve heard rumblings around the potential to use peer support and self-help groups to support recovery. In my post about the EDAC conference I noted how impressed I was by the presentation by We Bite Back, highlighting an online peer-support program for people in recovery. Then, Tetyana pointed me in the direction of a recent study by Perez, Van Diest & Cutts (2014, Open Access) in the Journal of Eating Disorders exploring MENTORConnect, another peer-based program.
PEER SUPPORT AND MENTAL HEALTH
As the authors explain, peer support is not exactly a new phenomenon in the field of mental health more generally. Interestingly, they also cite many studies from the 1980s when introducing the idea that mentorship and support might be particularly beneficial for eating disorders. This made me wonder, if peer support and mentorship were being investigated in the 80s, what took away the attention in the intervening years until more recently?
There is more research about mentorship and support for other mental health issues, particularly in the addictions literature. When one thinks about peer support, what likely comes to mind is Alcoholics Anonymous, which is explicitly founded on the peer-support model.
Peer mentorship models for individuals in recovery from eating disorders have less often been the focus of research. This may partly be because self-disclosure of recovery when working in a therapeutic capacity is more contested in the eating disorder field (though it happens, and can be seen as a good thing or a bad thing- or a non-issue, for that matter…). Concerns about emotional entanglement and comparisons seem to be especially strong where eating disorders are concerned.
Further, while defining recovery from any mental health issue is no easy task, defining eating disorder recovery has been a particularly difficult nut to crack. People’s definitions of recovery vary enormously, and differences in recovery definitions could make peer support more challenging. For example, what if your mentor’s definition differs from your own? How can we establish benchmarks through which your mentor can guide you if we aren’t exactly sure what we’re aiming for?
There are a few other reasons that peer support for eating disorders is not wholeheartedly embraced. Perez et al. note some concerns raised in the literature, including:
- Emotional entanglement between mentor and mentee
- Mentor dominating the mentee’s process of recovery
- Risk of relapse for the mentor
Despite these concerns, however, the authors suggest that peer-support might help to fill a gap in people’s experiences of treatment and recovery. They note that some of the main roles for social support might include:
- Reducing financial burden
- Providing “emotional support, information, and feedback” (p. 2)
- Role modeling
- Navigating triggers
One of the authors, Shannon Cutts, founded a program called MENTORConnect, which forms the basis of this preliminary, evaluative study.
MENTORConnect matches people who are actively engaged in eating disorder but working toward recovery and people who have been recovered from eating disorders for at least a year. The program is free and is designed to facilitate peer support. In order to be matched, volunteer mentors are screened to ensure that they have been recovered (which is defined here as “largely free from eating disordered thoughts and coping behaviours,” p. 4) for 12 months or longer. Each mentor is able to have up to 3 mentees.
Once they are matched, pairs plan for how their mentoring relationship will play out. The amount, type and method of contact varies depending on the particular pair, as does the length of the mentorship.
Perez et al. wanted to examine whether this free mentorship support program could help in recovery processes. They were quite explicit throughout the article that the aim was not for the program to replace medical/clinical support; in fact, treatment compliance was also one thing that they hoped the program would increase. Additionally, they were looking to determine whether mentorship could increase mentees’:
- Motivation to recover
- Energy and time spent on recovery
- Quality of life
They also looked at the content and frequency of mentor-mentee interactions and whether there were also benefits for mentors’ recovery processes.
This study was one part of a larger evaluation of the content of and satisfaction with MENTORConnect. There were 141 participants in total, mostly (91%) from the US, mostly (81%) White, and aged 15-63 (mean age 31).
34 mentors participated; average length of recovery was 8 years. Importantly (in my opinion) 4 of the mentors had no history of an eating disorder; they were mental health professionals. The others had recovered from eating disorders as follows (note that participants were asked which eating disorders they had experienced, so they could select more than one):
- 56% AN
- 38% BN
- 15% BED
- 38% EDNOS
Mentees were divided into 2 groups (based on ability to find a match, not randomization): matched and unmatched. Average age was 31, and most were women (though I could not find any indication of exactly how many were men or about the gender of the mentors). Matched and unmatched mentees were quite similar in terms of demographics.
SUMMARY OF MAIN FINDINGS
The authors looked at:
- Quality of Life (using the Eating Disorder Quality of Life Scale)
- Motivation, energy and confidence toward recovery (using 3 questions)
- Treatment compliance (using 1 item about how many appointments the person had missed over the past 30 days)
- Time and frequency of communication
- The mentoring process (including what pairs talked about, based on a 27 item checklist)
- Unmet needs (using an open-ended question)
- Impact on mentors (using an open-ended, 250-word response question)
Over all, mentees who had been matched noted a better quality of life than those who had not been matched. They also missed fewer appointments (an average of 0.98, ranging from 0-4) than unmatched mentees, who missed an average of 2.14 (ranging from 0-5). However, there were no major differences between the groups in terms of motivation, energy, or confidence about recovery.
As expected, there were wide variations in how often mentees and mentors connected, and how long they had been in their mentorships. It seems that over time, certain areas of quality of life improved for mentees, including:
- Family and close relationships
- Future outlook
- Values and beliefs
At least some participants talked about each of the 27 items on the list of focus areas, though some were more popular than others. Most discussed were how to (adapted from a table on p. 8):
- Manage/reduce thoughts and behaviours related to the eating disorder
- Stay motivated and committed in recovery
- Manage relapses
- Choose recovery
- Set, work toward, recovery goals
- Deal with triggers (e.g. family, environment)
Those who weren’t matched shared that they wanted support in dealing with emotions and with comorbidities, including depression, anxiety, and self harm. Some noted wanting help with practical needs like grocery shopping and other food-related parts of life including sticking to a meal plan, and managing body changes that often come along with recovery.
Interestingly, 91% of the mentors noted that they found that the program was helpful to them, saying that mentoring was a positive force in their recovery and reminded them of the strides they had made in their own journeys.
WHAT DOES IT MEAN?
Perez et al. suggest that their study provides some preliminary support for the idea that mentorship programs like MENTORConnect can be a positive force in the lives of both mentees and mentors in recovery. Again, they are not suggesting that the program can replace medical or clinical support in recovery, but that it may be a helpful addition. This might be particularly relevant given the lengthy wait lists and difficulty securing insurance for eating disorder treatment.
So, what do I think? I’m on the fence. If you’ve read my posts in the past, that might not surprise you. I continually toe the line between openness to new and innovative approaches to providing support to people with eating disorders and concerns about how to make sure people are getting the best kind of care possible to help them in recovery.
I firmly stand by my opening paragraph noting that the absence of a randomized controlled trial does not mean that this mode of support is not helpful. I think it is wonderful that people are trying new things to support the difficult process of recovery. With this in mind, a potential role for this program not explored in depth in the article is actually helping to navigate the process of finding the kind of clinical/therapeutic treatment that works best for the person (e.g. is culturally, age, etc. appropriate), as opposed to just encouraging treatment compliance.
When you are struggling, it can be incredibly difficult to figure out who you need to ask and for what. Things like locating treatment programs that fit with your personal needs and/or securing insurance coverage can be extremely time consuming and difficult- could it be helpful to have help from some who has been there to help you in this process?
One question I had about the design of the program (and, subsequently, the study) was that a few of the mentors did not have a history of an eating disorder. The kind of support and mentorship provided by these people might be quite different, and it might be a different kind of mentor-mentee relationship. I found it a bit odd that the authors did not comment more on this.
I agree with the authors that peer support and mentorship could be beneficial for both mentors and mentees, something that least warrants more research and I do find this study a great start. I think it would be interesting to ask an open-ended question or interview mentors and mentees about what they talked about instead of providing a checklist of potential topics–the authors note that all of the 27 items they listed were chosen by at least some of the pairs, which is unsurprising (i.e., when something is listed, you’re likely to think about it).
I would be quite curious to look at similarities and differences between this and other similar programs. I am also curious about how different definitions of recovery might change the process and results. I continue to go back to the question of who defines recovery, and what the impact of individual differences between mentors, mentees, and clinicians might be on these relationships. Could this be a place for one of the authors’ suggestions, that new mentors be mentored themselves by mentors with more experience providing support? At the same time, this does not alleviate my concerns about whose version of recovery dominates.
Tetyana also mentioned the idea of informal mentorship and peer support being helpful. In order to quit my rambling before you all fall asleep, I’d be curious to discuss in the comments. What do you think?
Perez, M., Van Diest, A.K., & Cutts, S. (2014). Preliminary examination of a mentor-based program for eating disorders. Journal of Eating Disorders, 2 (1) PMID: 25426293