Health
Australian-first online program for people supporting a loved one with an eating disorder is effective in easing carer burden.
1 Feb, 2024
For people living with an eating disorder, it’s usually those closest to them who take on the responsibility of looking after their complex needs.
Eating disorders are serious mental illnesses affecting approximately 1 million Australians, with carers, families and supports playing an essential part in a loved one’s recovery. Often, it’s parents and other close relatives who are cast in the role of carers, even sometimes taking an active role in providing treatment in the home, often with little training and very little support.
Carers have long expressed the severe impact of this burden and the need for information and strategies to help them. Recognising this need, InsideOut Institute for Eating Disorders, a partnership between the University of Sydney and Sydney Local Health District, launched SupportED in 2020 – Australia’s first online upskilling program aimed at improving carer burden. SupportED was developed in collaboration with carers and people with lived experience, advocates and carer organisations, researchers and clinicians.
Over five modules, SupportED provides users with information about available resources and treatment options, plus practical skills. For example:
- how to provide support around mealtimes
- strategies for avoiding and responding to conflict
- how to care for their own physical and mental health needs.
After three years, the results are encouraging with users finding the program effective feasible and accessible.
InsideOut Institute research lead Dr Jane Miskovic-Wheatley says it was the first evaluation of an educational, skills-based program designed to be inclusive of all carer types, including siblings and partners, and all diagnostic profiles and living experiences of eating disorders:
“We found a large number of carers looking after those with co-occurring conditions which suggests many users of this program are dealing with a heavy burden of potentially very unwell loved ones. Despite our research design and recruitment strategy being very open and flexible, the majority of carers engaging in the program were still parents, identifying as female, and caring for their child. However, evaluation of the SupportED program found it to be an acceptable and feasible program for carers and may improve burden and support skill development regardless of age, gender identification, carer role, or lived experience of the person they are caring for."
Dr Miskovic-Wheatley says there is a need for future research to focus on understanding barriers to using carer support services.
“Our findings highlighted a low reported uptake of carer support services, despite a high reported level of demand for such services, and the availability of some wonderful care-focused organisations in Australia.”
SupportED aims to better support ED carers by understanding their unique circumstances, needs and the contributing factors to their burden.
“Some of the key predictors of carer burden are psychological distress, carer skill and the relationship type. We also found the longer a carer is in their caregiving role, the higher the reported burden.”
As always, InsideOut would like to thank everyone involved in this program development, evaluation study, and most importantly, the carers who tried out SupportED and participated in the research. By hopefully receiving some benefit from the program, your additional feedback will continue to help those on the caring path in the future.
SupportED is available for anyone to access here: https://insideoutinstitute.org.au/resource-library/supported
Declaration: SupportED was developed with funding support from the M.A.S.T Foundation
If at any time you feel distressed, you can call the Butterfly Foundation at 1800 33 4673 to get support from an eating disorder specialist, the Mental Health Access Line for NSW at 1800 011 511, the Carer Gateway at 1800 422 737 for carer specific support or LifeLine at 13 11 14 for crisis support.
References:
Miskovic‐Wheatley, J., Schlage, J., Pehlivan, M.J., Simone, R., Koreshe, E., Hunt, C. and Maguire, S., 2023. Skills‐based online self‐help program for carers of people with an eating disorder (SupportED): A case series evaluation. International Journal of Eating Disorders.
https://onlinelibrary.wiley.com/doi/full/10.1002/eat.24112
Pehlivan, M.J., Rodgers, B., Schlage, J., Maguire, S. and Miskovic‐Wheatley, J., 2023. Characteristics, correlates of burden and support service use of a help‐seeking carers of loved ones with an eating disorder. European Eating Disorders Review.