Using lived experience to help others: the eating disorder peer workforce
There is growing public policy interest in the development of the mental health peer workforce, including in relation to recovery from eating disorders.
Part of the broader category of the mental health lived experience workforce, peer workers are non-clinical practitioners who are informed by personal and collective lived experience. But what are the benefits and potential risks of an eating disorder peer workforce?
Butterfly recently published new research on the benefits of peer work for people with eating disorders and their carers, along with recommendations on how to create a safe, effective and sustainable future workforce.
The below summarises some of the key findings from An eating disorder-focused peer workforce: Needs assessment (2022).
What is a peer worker?
Peer workers are distinguished from other healthcare professionals in that they have lived experience of mental health challenges, either personally or in support of someone close to them such as a family member.
They work directly with people still experiencing mental health challenges to achieve recovery outcomes, as opposed to those with lived experience who perform advocacy or advisory roles. They are distinguished by the formalised nature of their role in the recovery journey and from informal peer work facilitated through social support networks (Slade et. al, 2014).
Peer work is highly effective at promoting hope, empowerment, self-esteem, self-efficacy, social inclusion, and engagement (Repper and Carter, 2011) which are pivotal in improving recovery outcomes, and in the longer term, reducing the burden of disease. Initial evidence indicates that peer work has particular value in supporting the recovery of people with eating disorders.
What the evidence says
Peer work is in its infancy in Australia, and this is particularly the case for eating disorder peer work. Although there is a is broad agreement regarding the value of peer work in the treatment and management of mental ill-health, there is limited research into the best way to develop and grow the eating disorder peer workforce.
To address key gaps in the research, Butterfly commissioned research to explore the current landscape of peer work in the treatment and management of eating disorders. This involved interviews with eating disorder peer workers, people who have accessed eating disorder peer work, industry advocates, academics and facilitators of peer work, and clinical psychologists involved in the treatment and care of individuals with an eating disorder.
Benefits of peer work
Despite over 1 million Australians experiencing an eating disorder in any given year, less than a quarter of those will seek professional help. This is due to a number of barriers, including stigma and shame, denial of their disorder, not recognising how serious their illness is, treatments costs, lack of motivation for recovery, limited encouragement for recovery, and lack of awareness of the different help-seeking options available (Ali et. al., 2016).
Peer workers are well positioned to help people overcome these barriers, given their unique ability to support feelings of hope, empowerment, building self-esteem and demonstrating full recovery is possible.
For the individual affected by an eating disorder, benefits of peer work include:
- Increased empowerment and optimism in the recovery journey
- Greater acceptance and attendance of treatment
- Reduced feelings of social isolation, stigma and shame
- Provides hope and aids the ‘recovery mindset’, because the peer worker is tangible proof that it is possible.
- Establishing a social and relational identity outside of the disorder
- Assists in navigating the pathway out of intensive, clinical treatment
“They gave me a sense of hope towards recovery, I suppose, or that there were things available that I could do to head in the right direction, even if I didn’t want to go in that direction yet. At least I knew that I should.”
– Recipient of peer work, lived experience of an eating disorder
By talking about their experience of their life in recovery, peer workers offer insight into a life that is not defined by an eating disorder. It’s not simply the case that they provide hope of achieving an end goal – they can paint a picture of what that end goal might look like.
“I think that people with eating disorders often have a tendency to say things like, ‘You just don’t understand. You don’t get me. You haven’t been there so how would you know.’ And you can’t do that with someone who’s recovered, they can’t really pull that. It’s a little bit harder in a way to say ‘you don’t get it’ with someone who’s been there, who’s recovered. I think you can be a good role model when you’re doing peer support. Not just a role model for certain behaviours… but you can [also] be a role model for how to get better, you can also be a role model for the fact that being recovered is possible.” – Industry stakeholder – international
A safe space to turn to – with someone who understands
As mentioned, people experiencing an eating disorder often feel high levels of shame around their behaviours, and/or the impact that their eating disorder is having on their families and other people who care for them.
A peer worker is uniquely placed to provide a safe space where someone with an eating disorder can talk about their feelings and behaviours without fear of judgement or stigma, because the peer worker has likely felt or behaved similarly themselves.
Additionally, people may feel isolated when undergoing clinical treatment, with some believing that their clinicians don’t understand them and are ‘not on their side’. Peer workers can help offset these negative feelings as they can empathise with this perspective and provide a safe space for people undergoing treatment to express these feelings and frustrations. At the same time, peer workers can also help to explain the purpose and benefit of the treatment.
“Eating disorders make you withdraw from your life and socially too… I think once everyone got comfortable with each other [in the peer support group] I found it was pretty helpful having people to relate to, with similar shared experiences, and I was like ‘oh my god I thought I was the only weird one’…but then yeah it was quite a common experience, so it was nice having that group dynamic” – Recipient of peer work, lived experience of an eating disorder
Benefits for families
Eating disorders don’t just impact the individual – they’re felt by the entire family and support network. This is particularly so for children and adolescents experiencing eating disorders, with the family usually having responsibility for maintaining treatment within the home environment.
It was found that peer workers could help relieve some of the pressure and stress families feel, by being an additional person who can provide non-judgemental support to the individual with the eating disorder and helping them to understand the parent/carer’s perspective.
“I realised how powerful my story was because other parents who are deep in the trenches and feeling like they’re drowning needed to hear some positive news that you can get through this. And despite how bad it is and how terrible you’re feeling, there will be better days ahead.”
– Carer/family member with experience of peer work
Peer workers can also educate parents about eating disorders, explaining the rationale behind treatments in a way that they can understand, drawing on their own experience. They can directly relate to the fear, confusion and wealth of emotion parents, family members and other carers report experiencing thereby giving greater insight into the rationale and nuance behind treatment options. They can also help families navigate the eating disorder treatment pathway, which can reduce feelings of isolation and confusion.
Benefits for the peer worker
From the perspective of the peer worker, benefits include:
- Increased levels of self-awareness which aide positive personal recovery reflections
- Solidifying the peer workers’ recovery
- Various forms of upskilling
Peer workers who were interviewed for the research felt that discussing their own recovery journey, reflecting on how much they achieved, and how their life had changed for the better, helped to solidify and strengthen their own recovery and in some cases progress them even further along that journey.
“It feels like a privilege to have gotten through my own recovery and to be able to help others grow and develop and get through recovery. Also it reinforces my own recovery, when I talk about things that were helpful for me it also reminds me and stay accountable for my own recovery.” Peer worker, lived experience of an eating disorder
However, some evidence also questions the safety of peer work for recovered individuals, highlighting the potential for relapse. Peer work can be a mutually beneficial relationship, but appropriate safeguards and support need to be in place to manage risks. It is widely agreed that to mitigate relapse risk, eating disorder peer workers must be sufficiently recovered before trying to support others.
There are also concerns about the potential for eating disorder peer workers to become overloaded and ‘burn out’ if appropriate boundaries like frequency of contact were not maintained. Training, supervision and robust frameworks are essential for helping to reduce these risks.
Developing the peer workforce
There are indications that expanding a peer workforce to support treatment and management of eating disorders would yield significant positive outcomes. However, there are several constraints that need to be addressed. Like many other eating disorder services and programs, there is limited funding available for eating disorder peer workers.
While there are funded programs that provide access to peer workers in public hospital settings and some eating disorder services, such as Eating Disorders Victoria, peer work is not currently listed on the Medicare Benefits Scheme (MBS). This means that many people must pay to access peer workers in the community – a significant barrier to accessing care. Robust evaluations and research of large-scale peer work programs are also required, yet there is limited funding to not only conduct testing, but to establish these programs in the first place.
“I guess you know in thinking about safety, I’m thinking about safety for our clients, but safety for the peer support worker as well. I think we are so desperate for resources in the eating disorder space there is a risk of bringing people on quickly because they might add value and ease the burden, but we need to make sure that the peer support workers aren’t going to be triggered”. -Clinician
Currently, there is also no centralised body to oversee or guide service delivery of peer work in Australia, and this means that the way in which peer workers are recruited, supervised, and trained is determined by each individual provider leading to significant variations in service delivery.
To develop the eating disorder peer workforce, it is imperative that the optimal type of peer work is understood, and that the ideal investment required of the peer worker to maximise clinical outcomes, whilst also maintaining their own mental health and wellbeing, is defined.
In the 2022-23 Federal Budget Butterfly received funding from the Commonwealth Department of Health and Aged Care to build on the research findings by developing Eating Disorder Peer Workforce Guidelines. A Working Group made of up sector representatives and people with lived experience (including experience as providers of peer work and as recipients of peer work) has been formed to develop the guidelines.
We have also been engaging in co-creation workshops with people with lived experience, with more lived experience engagement opportunities to come which will be advertised through the Butterfly Collective.
To read the full report, head to: https://butterfly.org.au/wp-content/uploads/2023/02/158_B_Peer-Workforce.pdf
If you’re experiencing an eating disorder, disordered eating, body image concern, or are worried about someone you care about, reach out for support as soon as you think something might be wrong. Early intervention can have a marked difference on an eating disorder’s severity and duration. Eating disorders do not discriminate; no matter your appearance, body size, gender, sexuality, ethnicity or economic status, you are worthy of recovery and support.
Butterfly’s National Helpline
Connect with Butterfly’s compassionate and expert counsellors by calling 1800 ED HOPE (1800 33 4673), chat online or email firstname.lastname@example.org Confidential and free support is available 7 days a week, 8am-midnight (AEDT).