Supporting and involving families will help recovery and cut ED treatment costs
Families do not cause an eating disorder (ED). However, the family’s role in treatment and recovery is crucial. This is because the best place to heal from an ED is in the home. However, for this to happen, we need greater support in the home, to enable carers to practise self-care as well as care for the family member with the ED.
So, what kind of support do we need? In this article, a carer volunteer with Eating Disorders Families Australia (EDFA) provides answers garnered the hard way, through lived experience.
When was EDFA formed, and why?
A group of parents, whose children were recovered or recovering from an ED, met at an ED conference and quickly formed a bond. Realising they all had experienced feelings of being under-skilled, alone, frightened, exhausted and overwhelmed following their child’s ED diagnosis, and with little to no support available at the time for carers of individuals with EDs in Australia, the parents formed a face-to-face parent/carer support group in Flemington, Melbourne, in 2016. That same year, these parents joined with other like-minded carers and formed Eating Disorders Families Australia (EDFA). EDFA’s mission, “To facilitate and advocate for families and carers to ensure they are supported, equipped and acknowledged as a central part of optimising the recovery process for the person with the ED,” has not changed.
The organisation has expanded from solely offering support and connection locally to a national support and education program via an online platform. This platform provides families with existing and emerging information about EDs delivered by national and international ED professionals and lived experience carers, siblings and individuals with EDs. EDFA provides more than 70 national support groups and education webinars annually, a library of educational webinar recordings, an in-house 24/7 online peer lived experience support forum and in-house ED digital resources. EDFA has a research team and a committee co-ordinates clinician training for a new US trait and temperament-based treatment model, Temperament Based Therapy with Supports (TBT-S) in Australia.
What aspects of EDFA support are in greatest demand?
Support and education services are in equal demand and since 2020 the number of carers reaching out for help has more than doubled. The COVID-19 pandemic has created a huge increase in both relapses and new cases of Eds and, in response to demand, EDFA has expanded its online support groups to every state and territory in Australia.
The community of carers in EDFA is mainly anorexia nervosa (AN) based but national groups also have been formed for siblings, male carers and those who identify as men, and carers of loved ones with Avoidant Restrictive Food Intake Disorder (ARFID), Binge ED (BED)and Bulimia Nervosa (BN). With more families needing access to information, and education, to support them in their caregiving role, twice-monthly online national education webinars were implemented for members at the start of the pandemic. The education webinars are well attended and continue to grow in popularity.
My experience in needing and accessing support occurred nine years ago when my family was turned upside down following our daughter’s anorexia nervosa diagnosis at age 14. I stumbled across help for my daughter via a trip to emergency and she was referred to the hospital’s Family Based Treatment “FBT” program. The program was in its infancy and we felt frightened and alone. The only help between weekly FBT appointments that I could find in order to understand and upskill myself was an international ED forum. I could find nothing helpful in my local area and no one I knew had any idea of the intensity of what we were experiencing as a family. It was such a lonely, sad, frightening and uncertain time.
Who is seeking support?
EDFA is a lived experience carer organisation. We are carers supporting, upskilling and educating other carers who support loved ones with EDs. Most carers in our community are parents, however some are partners, siblings and grandparents. Carers generally join our community in the initial stages of their loved one’s diagnosis; however, we are beginning to attract more members who are supporting adult loved ones with long term illness or whose loved ones have relapsed and carers need help to manage these changes and their complexities.
In what ways do community health services offer daily help, if at all?
EDFA is not aware of any community health services daily support for carers supporting loved ones with EDs in Australia.
Practical and psychological support for families can be accessed via Carer Gateway Australia and their state-based support organisations. Many carers are exhausted, overwhelmed and often have to give up their jobs or take extended leave in order to care for their loved ones. While Carer Gateway Australia and their state-based community organisations provide family support, to our knowledge, this support does not include specialist ED support in the home for the individual, such as ED trained meal support or support with managing behaviours and/or mental and/or physical health challenges.
How can support for families be improved?
Skilled in-home meal and behavioural management ED support is lacking in Australia and should be available:
- on first diagnosis to support and upskill parents
- for carers who are finding behaviours difficult to manage
- for carers who work
- for individuals with EDs living out of home
- for single parents who are sole carers
- for elderly carers or carers with disabilities
- for sibling, child and partner carers.
More ED hospital beds are desperately needed and emergency hospital staff need to be trained to manage those who present with EDs. Because of the shortage of beds, many very unwell individuals are sent home without a medical plan in place or a follow up plan. Families are left to deal with the consequences of this lack of support as well as the person with the ED believing they do not deserve help or are not sick enough…which strengthens the mindset of the illness.
National Disability Insurance Scheme (NDIS) funding should be available for support for the ED as a stand-alone illness. Support is needed for applying for and managing NDIS requirements to achieve the best outcomes for carers and their loved ones with EDs.
It would have been helpful for our daughter to be screened for Autism Spectre Disorder (ASD) on diagnosis of her ED. Following an autism diagnosis, we would have loved the opportunity to attend an educational program to upskill ourselves as carers about how to support her in a more effective way throughout her treatment. Treatment for those with the ASD/ED overlap needs to be adapted.
Lack of support causes a deterioration in the mental health of carers who never or rarely have a day off and are expected to manage all aspects of their loved one’s ED on their own. Not only are they expected to supervise refeeding, maintain safety and support their unwell loved one (often 24/7 for many years), but also, they have to care for other family members, work, and/or run the home. Many carers feel alone and frightened for their loved ones, who are often experiencing severe and complex illnesses. Many carers report their loved ones being deemed too complex and some are turned away from professionals for these reasons. Another significant impact of lack of support is the financial pressure around providing a strong support team for the loved one. A person with an ED may need a support team for many years which is financially impossible for many families. Without this ongoing support and commitment, the illness can become further entrenched.
Online support groups as a self-help tool for carers
Carers feel confused, isolated, unEDucated and alone and seek a community of carers who are going through similar journeys and therefore understand. Caring for a loved one with an ED is one the hardest things carers will ever do and they need upskilling, education and support in order to be an effective support for their loved ones. Many carers feel shame, or blame themselves for their loved one’s ED, and seek a private, validating space to share these feelings. As supportive and caring as friends or family may be, they do not understand the lived experience of caring for a loved one with ED, leaving carers feeling very alone and often lost. The EDFA strive Australia Facebook forum is a private, closed page for privacy and security of our members.
Cost can be a factor in seeking support. Many carers are doing it alone on one or no income. EDFA’s daily online carer lived experience platform is accessible at any time of the day, seven days a week, free of charge. This is very helpful for understanding the reality of caring for a loved one day in, day out and provides valuable lived experience information and resources. Shared knowledge, cost saving tips, direction to carer support resources and instant answers to questions are all benefits of being part of our online carer community.
The EDFA strive online FB forum can be an SOS (wanting help urgently) platform and a place to find grounding in those moments that are frightening and uncertain and happen in the moment. ED care can change minute by minute. There is always someone online to respond to a question or an urgent support request. It may be an answer to questions such as, “What do I do when my child has refused intake for two days?” or, “What do I say/do that will be helpful when my child is in distress?”. It is important to note that this is a support platform, not a treatment or emergency response platform.
The benefit of online support is that it is an accessible and immediate support system for families in metropolitan, regional, rural and remote communities 24/7. The connection with others who truly understand is reassuring and reminds carers that they are not alone.
Regarding stages of an ED, is online group/in-home support crucial/useful?
EDFA is definitely beneficial upon first diagnosis. Parents and carers don’t join the group unless their loved one is diagnosed with an ED. Most carers come into the ED world with little or no understanding of what an ED is or how to manage the ups and downs of their loved ones’ daily struggles. This is a frightening and confusing time. We point newcomers to ED resources and provide support and education. The EDFA is a caring community with long term carers connecting and finding comfort in knowing others are going through the same experiences. It is also a place for hope as many of our carers stay on and share their journeys to bring hope to all our community. Our educational program is progressive and brings existing, new and novel treatments and therapies to the fore to keep our community informed. We know the key to a shorter duration of illness and best chance of a full recovery is diagnosing the ED early and taking urgent action to treat, so it is imperative to upskill and educate the carers as soon as possible.
Effectiveness of online support/in-home engagement as carer resources
On first diagnosis, it would be helpful for many families to have a trained, lived experience carer come into their home to help start and set the meal plan in place. Two days minimum. And for that person to be on call as a carer mentor online/via phone call/text for a period thereafter. The cost of funding this type of support would be astronomical but would assist the goals of the treatment team and would give carers the confidence and strength to begin treatment at home. Queensland and Victoria have a peer mentor carer service but with limited contact, i.e., once a week in Victoria (online appointment).
The importance of feeling like you are part of the treatment team
EDFA believes that EDs must be treated as family based illnesses because of their nature. It is very important to not only feel like, but be, a part of the treatment team. Sadly, some professionals still believe that parents and carers are the problem rather than an important ally and a strong key to the solution. Parents and carers are generally living with their loved ones 24/7, are deeply invested in their life and wellbeing, because of the neurological bond they share, and have a solid understanding of “how they tick”. They can help the treatment team understand what’s happening in the home and can advocate for their child, knowing their traits and temperament and what support they need in order to help them feel safe and confident to make changes.
Given that anosognosia is a prominent feature of the illness, the treatment team ideally will encourage their patient/client to include their carer/s in the care team. If carer inclusion is denied by the individual with the ED, then carers should be included outside of this process by other means, i.e., online. Miscommunication and no communication among the ED team members is common, particularly in older adolescents and adults, and can be detrimental to the physical and mental wellbeing of the individual with the ED. Many carers express frustration because of the lack of communication and the exclusion from the treatment team, and the inability to connect with the team to disseminate, or have access to, pertinent information.
Time and time again professionals miss out on vital feedback and information (including factual knowledge), because they are unwilling to engage with their patient’s carers. This is a distressing situation for a parent and carer; being unable to help your child or loved one because of privacy laws rather than seeing the illness for what it is – a life threatening mental illness in which the person afflicted generally does not want to engage in recovery.
Qualities for an in-home/online mentor/support worker for carers
EDFA believes it is vital that the in-home/online carer mentor has either lived experience of being a 24/7 carer of a person with an ED and/or has a professional background in mental health and EDs. Both lived experience and professional experience need formal training before undertaking this role, particularly in respect to risk, managing behaviours, boundaries and evidence-based treatment protocols.
Funding/training required to provide more support in the home/online 24/7
- Understanding the ED mindset
- Risk, boundaries and behaviours
- Evidence based treatment
Government. Funding for EDs in Australia falls short. Compared with mental disorders of comparable clinical impairment, government funding for EDs is historically “starkly lower,” the international experts say in a new article in the Australian and New Zealand Journal of Psychiatry.
For example, research funding in Australia equates to $1.10 per individual with an ED compared with $32.62 and $67.36 per person with autism or schizophrenia. See this article.
Benefits of having experienced in-home/online support
Mentor support for families is one way to keep loved ones at home and out of hospital, and to preserve the mental and physical well-being of the carers. Many families are waiting several weeks or more for access to evidence-based treatment upon their loved one’s diagnosis. Even if not waiting for treatment, to begin re-feeding in the home is an overwhelming task. A mentor would make a huge contribution to giving carers confidence and skills; and ultimately a shorter recovery time for the person with the ED. Having the knowledge about how to communicate with the person with the ED and helping them to manage anxiety and distress around re-feeding is vital.
A mentor would also be particularly helpful for adults living out of home, or without carer or family support, and who can’t re-feed themselves. This would be a longer mentorship. Reducing the number of admissions and pressures on the health system would lead to a huge ongoing cost saving to the Government and ease long wait lists for clinical support. Not only the individual with the ED, but also the entire family, can need mental health support over many years, so upskilling, educating and providing coping strategies can be extremely beneficial.
Do EDs need to be listed on the NDIS as criteria for support?
The average length of an ED is up to eight years. EDs often require 24/7 care and many carers have to give up their jobs to care for their loved ones, often for years. The current NDIS stance is that because EDs are not considered a life-long disability they are not eligible for funding, i.e., no matter how chronic and enduring an ED is, there is always the possibility of recovery. However, the expense of treatment, often involving a sizeable team, and sometimes for years, decades and for some, a life-time, is debilitating financially for many families and the individuals themselves, making treatment unaffordable for many.
NDIS is only accessible for those with comorbidities such as Obsessive-Compulsive Disorder, Post Traumatic Stress Disorder, anxiety, autism and depression. Unfortunately, this also often gives the wrong message to the person about the severity of their ED (that is, the ED is not serious).
EDFA supports EDs being made a part of the NDIS. Reducing financial burden and allowing all families access to the treatment their loved one needs gives the best chance of managing these illnesses. EDs are complex, life-threatening illnesses. They have one of the highest mortality rates of all mental illnesses, with up to 20 per cent dying if not treated effectively and one third go on to have the condition for life. More support is needed to give those affected the best chance at leading a long and fulfilling life.
Main lessons/truths learnt as a result of caring for a loved one with an ED
I have learned that no matter how hard I try, I cannot ‘fix’ my loved one. I have learned to step back, with loving boundaries, to allow my loved one space to navigate her own recovery journey. I have learned that my timeline for her is not the same as her timeline. I’ve realised that I am a vital part of the care team… I’ve challenged my own thoughts and feelings and learnt to do things differently, providing safe boundaries, accepting what is without judgment, meeting my child where she’s at and always holding hope for her.
The major impact on my family is that all of us, and particularly my younger children, have experienced the times of underlying sadness that come with this illness and have missed out on what it’s like to grow up without the constraints of mental illness. There is less spontaneity, there is inability to go out for family dinners, or with friends, and holidays are difficult and few because of the rigidity with food, meltdowns and so on.
On the flipside, we have had to dig deep within ourselves and make it work to get through years of heightened emotion and distress. As a result of what we have been through together, we understand how much we love each other, we cherish the good times we have together and we have developed a genuine empathy and understanding for each other’s individual needs. We are strong. We are one. No matter what comes, we are there for each other.
Where do we find the answers?
The answers to overcoming an ED and regaining authentic self can be hard to locate and measure. They hide in the mind, enveloped in layers of secrets, as Dr Ciaran Newell describes in this quote from Using Writing as Therapy for Eating Disorders – The Diary Healer:
Sometimes evidence-base is more like evidence-bias. Sometimes everyone is looking for the evidence where the light is, where the quantitative science indicates, rather than in the dark, where it is most likely to be. Sometimes things can get lost in the process of researching for answers. We need to look in the obvious place – it just seems dark because we are not looking in it, because we have not bothered to look there, because we have thought that area has nothing to offer us – and this is the area of patients and carers.
I agree. EDs are not about food. EDs are a biopsychosocial illness, often with deep, underlying emotional underpinnings that need understanding, unpacking, nurture, love, gentleness, compassion, kindness and acceptance. By recognising that carers are deeply invested in delivering this care and support 24/7, it makes sense that, because of their neurological bond, they are fundamental to reaching into the ‘self’ to support the wellbeing and healing of their loved ones.
Leaving parents and carers out of the care team is doing a great disservice to the recovery of the person with the ED and their family. No matter how difficult, long, exhausting or complex, carers and parents are almost always deeply invested in learning to understand how to care for and support their loved ones through the toughest journey of their lives and to offer their unconditional love and encourage self-belief.
Contact Eating Disorders Families Australia