Families on the Frontline: Supporting Young People with Eating Disorders
“When a young person struggles with an eating disorder, their whole family is affected. This research explores how empowering parents with knowledge and emotional support can make a real difference — improving recovery outcomes and easing the strain on our health system. It reinforces EPIC’s belief that parents are not just part of the story, they are key to change.”
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This report aims to understand and address the causes and impacts of various Eating Disorders (‘EDs’) so as to highlight gaps where further research and information is needed in order to effectively mitigate the risks for young Australians battling EDs. Specifically, a literature review was conducted to analyse both the prevalence of EDs in Australia among youth mental health presentations, and to analyse this in the context of service gaps and barriers to accessible care. Following this, it is relevant to review the literature on family involvement in care for youth mental health disorders so as to determine how industry leaders might develop a holistic approach to the battle against EDs. This information will demonstrate that in the context of a disease that kills young Australians every year, organisations like Empowering Parents in Crisis (‘EPIC’) are critical to alleviate the strain on the healthcare system and to mitigate risk factors for mentally at-risk youth.
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Eating disorders have become one of the most pressing youth mental health challenges in Australia over the past two decades, presenting a significant clinical, financial and psychological burden for individuals suffering, their families, and the broader Australian healthcare system (Butterfly Foundation, 2024). Characterised by complex medical and psychosocial factors, EDs notably impact young people, which makes family education and involvement both critical and challenging. The rapid rise in the prevalence of these disorders, together with inequitable access to care demands the evolution of holistic support platforms that provide community based support to face the challenge of EDs, platforms such as EPIC.
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Prevalence
Eating disorders, covering well established disorders such as Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, as well as Other Specified and Unspecified Eating Disorders, are defined in the DSM-5 and tend to be characterised by severe and persistent disturbance in eating behaviours with associated distressing thoughts and emotions (Butterfly Foundation, 2024). The consequences of these disorders are broad and complex, requiring treatment that addresses psychological, behavioural, nutritional and medical implications. These disorders are often chronic in nature and typically have an early age of onset with periods of recovery and relapse throughout the lifetime (Butterfly Foundation, 2024).
As of 2025, about 1.1 million Australians are living with an ED, roughly 4.5% of the entire population (Butterfly Foundation, 2024). Of this population, 27% are under the age of 19. This figure has increased by 15% since 2012 alone (Butterfly Foundation, 2024).
These are not the only distressing statistics. Alarmingly, doctors in a 2023 study found through a systematic literature review that the age of onset for EDs was now as low as 8, and even 5 years old (Hay et al., 2023). In one study alone, one in every four participants between the ages of 13 and 17 were assessed as having disordered eating (Hay et al., 2023). This review identified that Australian youth were experiencing considerably higher rates of disordered eating than comparable countries such as Canada or the Netherlands.
The burden of these disorders is not only affecting the youth, as eating disorders constitute a substantial portion of psychiatric illness burden, and were estimated to cost the government around $66.9 billion in 2023 alone (Butterfly Foundation, 2024).
Gaps in Access to Care
Despite the increasing prevalence of these disorders, which can last a lifetime, only around 30% of individuals who suffer with an ED will seek help (Butterfly Foundation, 2024). This issue is likely due to a number of factors.
Lived experience reports of factors that compound the clinical ED struggle have been described as distress due to restricted access to required care, distress due to cost of required care, and feelings of shame associated with relying on family and friends for support (Butterfly Foundation, 2024).
A 2024 study on the socioeconomic inequity in healthcare access in Australia found that healthcare utilisation, being public and private inpatient admissions, visits to outpatient clinics and emergency department visits were skewed against lower socioeconomic status individuals (Ahmed et al., 2024). While there was no significant inequity found in the probability of public hospital admissions, the study noted that only a minority of individuals will have their ED detected within general practice or healthcare situations. Higher specialists were often required for correct diagnoses, many of which practice in the private healthcare system. The study found that while socioeconomic status had the largest contribution to inequity in private hospital admissions, a more problematic factor was the remoteness of residence, with its contribution as a barrier to healthcare access more than doubling over the course of the study period (Ahmed et al., 2024).
Further, although care is available in public hospitals, limited availability of beds means that admissions are reserved for the most acute cases. This data had researchers suggesting that evidence points towards community based treatment being critical for ED care, both for intervention and in addressing the service gap for Australians that live remotely and those who do not have access to private avenues of healthcare (Ahmed et al., 2024). This hypothesis is bolstered by evidence of the increasing risk of comorbidities as EDs continue to go undetected. This is due to the epidemiology of EDs, which often impacts multiple organ systems alongside their psychological comorbidities. The critically important result of this is that only half of individuals who suffer from an ED will make a full recovery (Ahmed et al., 2024).
Due to the complex clinical nature of both diagnosing EDs, as well as barriers to access to care, it becomes crucial to consider what avenues can be considered both as preventative and protective solutions against the plethora of risks associated with the manifestation of EDs in society. This is especially important in New South Wales, where more than a third of Australians with an ED reside (Ahmed et al., 2024).
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Family involvement
Where individuals are not seeking clinical help, it has been estimated that informal care is one of the six productivity costs that form part of the economic burden of EDs (Butterfly Foundation, 2024). This informal care refers to time off work or reduced productivity where parents and families caring for an individual with an ED may have a reduced capacity to contribute in the workplace. Family involvement though, particularly for younger people suffering, can be the most accessible support network both financially and geographically. If this support network is trained to provide functional and evidence-based support, it can alleviate the strain on the healthcare system.
Benefits
In support of the theory that funding commitments to family involvement in care is beneficial is evidence that points to EDs having the highest incidence of therapeutic alliance as a key improvement indicator (Roles, 2005). Strategies to involve families in care of individuals suffering with EDs are many and well established, acknowledging that these challenges occur in the context of a family home and not in isolation (Roles, 2005).
The first strategy that promotes the involvement of families in care and has demonstrated the benefits this can provide is establishing a therapeutic alliance between healthcare professionals taking care of an individual, and their families. Aside from creating trust and transparency, as well as improving treatment outcomes, this process can alleviate family guilt. Parents of youth with mental health challenges have been found to experience guilt, with some describing feeling judged or blamed by healthcare professionals - which can subsequently translate into misconceptions about what causes and maintains EDs (Roles, 2005). Parents who suffer from these feelings are likely to be more distanced from the treatment and recovery process, weakening its effects (Roles, 2005). Where these families are actively involved in the therapeutic process through integration with the individual’s healthcare professionals and the development of relationships, they are more likely to take an active and educated role in recovery.
Critical to active participation in this process is the demystification of EDs among the general population. Studies have shown that many parents in these situations are consumed by their child being ‘abnormal’ due to psychiatric problems requiring professional interference (Roles, 2005). Educating parents on the nature of EDs, for example that they can develop as a response to different life stressors, can then allow them to consider what these factors might be in order to address it where possible. In doing so, parents are able to see themselves as part of a solution to the illness, rather than it being entirely out of their control.
This education and communication between parents and healthcare professionals can also be critical due to the reliability of parent knowledge of the recovery process. Given that children, and many of those who suffer EDs, can be unreliable narrators of their recovery process, where parents have a relationship with the healthcare professional they can avoid secrecy and provide accurate recovery updates to ensure consistency in treatment (Roles, 2005). This can be critical in ensuring compliance with treatment plans, which can be a particularly problematic area for ED sufferers (Roles, 2005).
This is supported by evidence that nutritional restoration is a key part of improving patient physical health, much of which occurs in the context of family meals (National Institute for Health and Care Excellence, 2017). The onus in this particular area for out-patient care falls on the family to provide this practical support in order to restore biological, cognitive, emotional and physical health. This is evidence of what is referred to as ‘least-restrictive’ care, being that which is conducted in a safe environment outside of clinical settings (Hay et al., 2023).
The importance of education and support around how EDs can present around mealtimes, but also in other facets of life, is not restricted to recovery-based care, but can also be critical in preventative care. Given many ED patients have poor insight into their conditions and do not think they are ill, symptoms must be recognised in order to encourage the individual to seek help (National Institute for Health and Care Excellence, 2017). This is particularly important in the context of medical evidence that shows delayed treatment can increase risks of comorbidities (National Institute for Health and Care Excellence, 2017). If parents and family members are educated in noticing weight loss, personality withdrawals and unusual behaviors around mealtimes which can be indicative of early stage EDs, they can then encourage treatment sooner.
In light of the benefits that can come from family awareness around warning signs and recovery processes of EDs, it becomes evident that educating families on the non-clinical aspects of treatment and care could be critical to improving ED experiences and therefore reducing the strain they place on the healthcare system. In saying this however, there are wellbeing needs of families to consider if they are to be a central point of care.
Limitations
Before examining how to integrate better family-centred care and awareness approaches, it is relevant to consider the limitations of this form of care. These limitations can come in the form of practical limitations as well as the emotional repercussions it can have on proximate family members who do not have sufficient psychological support themselves.
Firstly, it is relevant that families are not clinically trained to diagnose and treat EDs, and placing a clinical burden on these support systems without proper structures in place can give rise to risks (Gísladóttir & Svavarsdóttir, 2010). This is compounded by the reticence of many individuals with an ED to seek help, which can cause them to isolate themselves from family members if they feel they are being observed or judged (Roles, 2005). The possibility of this risk though only further highlights the need for parent education around approaching sensitive issues such as psychological challenges so as to maintain a sense of trust in the parent-child relationship.
A further limitation of this approach could be that mental health challenges among youth can be triggered by various forms of domestic abuse (Roles, 2005). Despite this risk factor, the majority of people experiencing an ED have not experienced abuse, minimising the need for healthcare professionals to consider this as a factor in involving the family in patient care.
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In light of the research, it becomes obvious that parent literacy, communication and support systems around those who suffer with youth mental health challenges can be an effective method in improving patient outcomes while alleviating the strain on the healthcare system. To do so it is necessary to have adequate subclinical support for these family members, in order to effectively manage the psychological impacts and questions they too will have as a result of being involved in this process.
Empowering Parents in Crisis is an organisation committed to supporting parents and carers of youth in crisis. Critically, EPIC recognises parents as first responders to their children, noting that they need to be provided with knowledge, skills and confidence to enable them to best support their young person, their family and themselves. EPIC does this through collaborations with schools, police, hospitals, family support organisations and the communities to promote community based assistance in fighting those battles. This is achieved through peer phone support, walk/coffee events, forums, meetings, parent programs and training sessions.
In June 2025, 15% of EPIC peer support reach outs were from parents concerned about their teen potentially suffering an ED. Reach out rates relating to EDs had not been this high since July 2024. Critically though, noting the prevalence of EDs, this reach out rate is lower than other mental health challenges, supporting the idea that EDs can go unnoticed until serious intervention is required. Nonetheless, the existence of parent reach out demonstrates the gap that EPIC fills in the subclinical market for psychosocial support and guidance around what EDs look like, what they mean, and how parents can help.
This type of platform does not just help the parent however, as a study in Iceland indicates that if families receive adequate help in the recovery process of a relative with an ED, the prognosis of that relative is better (Gísladóttir & Svavarsdóttir, 2010). The study highlighted that families of individuals that suffer from EDs are known to suffer major stress and have various psychological and education needs that are not catered for by the healthcare system. The study trialled interventions to help families learn how to assist their relatives in recovery. In doing so, it found that regression was shown to slow and the risk of patient relapse was reduced when the family assisted in the recovery process. These benefits however needed to be balanced against the wellbeing needs of the family members being exposed to feelings of frustration or helplessness that can come with watching an individual with an ED suffer. The researchers used discussions around emotional responses as well as beliefs to challenge misconceptions around EDs, noting that the most profound change that could be sustained was within the family belief system. They found that when change occurred in the cognitive, affective or behavioural domain it had a profound effect on the family’s internal relationships (Wright & Leahey, 2005). The results of the study showed that family members reported positive improvements in understanding of their relative as well as EDs in general, finding it was most useful to educate on the best way to adopt a supportive role rather than to try to control the disease, while helping them to see that they are helping (Gísladóttir & Svavarsdóttir, 2010).
In applying this study to EPIC’s mission, it demonstrates the power of education and support for those who are supporting ill loved ones, showing that this can have a genuinely beneficial impact on the prognosis of the disorder. It is further promising in that it shows reflection and community centred discussion can enable families to feel they are helping even if they cannot control the clinical aspects of the disorder, reducing frustration and feelings of helplessness.
As EPIC continues to grow, it will therefore be able to facilitate both more advertising that the services they offer are available for parents who are struggling, as well as provide those services on a larger scale. This can make a monumental difference in both the early identification and prevention of EDs, as well as providing education and emotional support during the recovery and possible relapse process.
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It becomes obvious that where there is an urgent need to reduce the prevalence of EDs among young Australians, various avenues need to be assessed and committed to in order to do so. While there are clinical supports and training improvements that are relevant, the evidence base demonstrates that community based and often family centred support is one of the key tools that can be utilised to improve both the prognosis of EDs as well as the overall diagnostic rates. In order to do so, it is necessary to fund and foundationally support organisations that provide peer support for the first responders, being parents and carers, so that they can effectively mitigate the clinical burden of ED suffering and the individual burden on the youth facing this challenge. By supporting organisations like EPIC, it will enable their reach to go beyond locally based supports, extending both regionally (noting the geographic barriers to care) as well as into various socio-economic and cultural demographics in order to break down barriers to care for both youths and their carers.
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Ahmed, M., Maguire, S., Dann, K. M., Scheneuer, F., Kim, M., Miskovic-Wheatley, J., Maloney, D., Nassar, N., & Cunich, M. (2024). Socioeconomic inequity in the utilization of healthcare among people with eating disorders in Australia. Psychological Medicine, 1–13. https://doi.org/10.1017/s0033291724002290
Deloitte Access Economics. (2024). Paying the Price, Second Edition: The economic and social impact of eating disorders in Australia. Report commissioned for Butterfly Foundation. Sydney: Butterfly Foundation.
Gísladóttir, M., & Svavarsdóttir, E. K. (2010). Educational and support intervention to help families assist in the recovery of relatives with eating disorders. Journal of Psychiatric and Mental Health Nursing, 18(2), 122–130. https://doi.org/10.1111/j.1365-2850.2010.01637.
Hay, P., Aouad, P., Le, A., Marks, P., Maloney, D., National Eating Disorder Research Consortium, Touyz, S., & Maguire, S. (2023). Epidemiology of eating disorders: population, prevalence, disease burden and quality of life informing public policy in Australia—a rapid review. Journal of Eating Disorders, 11(1). https://doi.org/10.1186/s40337-023-00738-7
Hay, P., Rankin, R., Ramjan, L., & Conti, J. (2023). Current approaches in the recognition and management of eating disorders. Medical Journal of Australia, 219(3). https://doi.org/10.5694/mja2.52008
National Institute for Health and Care Excellence. (2017). National Institute for Health and Care Excellence Eating Disorders: recognition and treatment: Full guideline Clinical Guideline Methods, evidence and recommendations. https://www.nice.org.uk/guidance/ng69/evidence/full-guideline-pdf-161214767896
Roles, P. (2005). Working with families of youth with eating disorders. BCMJ, 47(1), 44-48.
Wright, L.M. & Leahey, M. (2005). Nurses and families: a guide to family
assessment and intervention. (4th ed.) Philadelphia: F. A. Davis.
With gratitude
EPIC thanks the author, Ella Garling, who provided this research essay as part of her internship through the Macquarie University PACE Program, for her thoughtful contribution and dedication. Ella’s work shines a light on the importance of empowering parents and families to play an active role in supporting young people living with eating disorders.
Go to the EPIC Resources Body Image page for the following information:
Organisations that support young people and their families
Websites with useful information and strategies to support young people
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Support groups for parents/carers caring for young people
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