A new study has shone a light on the significant financial impact on carers of people eating disorders.
The Otago University study surveyed 137 carers most of whom were parents of someone affected by anorexia nervosa.
Nearly a quarter of carers reported that they were unable to work or study at all due to caring for the person with the eating disorder.
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The average income for carers in the study reduced by 27 percent, and three quarters reported their productivity was half what it was prior to caring for their family member.
Clinical Psychologist and Otago University Associate Professor in the Department of Psychological Medicine, Jenny Jordan, tells Nine to Noon it’s the first time the impact on carers has been evaluated.
Jordan says she was surprised by the extent of the impact.
“We just didn’t know what the situation was in New Zealand, so it’s been quite important in that way – we’ve made visible what’s been happening but hasn’t been recognised.”
The team took similar surveys from the United Kingdom and Australia and adapted questions for a New Zealand health care context.
“We were using existing questions which asked people things like, how’s your productivity compared to before the eating disorder happened to your offspring, have you had to give up work.”
She says almost all respondents were parents and most were mothers.
Many parents were taking around 61 days off work per year to care for their child with an eating disorder.
“Most of that was sick leave where they had it, some took annual leave, and some took unpaid leave. A quarter of them had to stop working because of the demands.”
Around 29 percent of the respondents had paid for private treatment after receiving treatment in the public system.
“Around half had in-patient treatment and that treatment was around 41 days, so quite a long in-patient stay. Typically, people go on to have out-patient treatment and, if they’re under 18, it’s family-based treatment that lasted around 35 sessions.”
Some parents travelled overseas for treatment at considerably high cost and time.
“It’s an incredibly complex disorder. It affects people with psychological co-morbidities and the physiological impacts are very serious and can be fatal.”
Jordan hopes the study sheds a light on what can be a very isolating experience for carers.
“You can imagine if they’re doing family-based treatment and they have to supervise every meal for the person with anorexia nervosa, it really interferes with their social life and people lose contact with supports. We even had one person say, if my child had cancer people would be rallying around and helping but, with eating disorders there’s often still a stigma and people are often left struggling on their own.”
She says there not yet sure why so many families went to private healthcare, but it suggests there might be more treatment needed than what’s offered in the public system.
“What we also know from the study is that carers actually need personal support. This is a big drain on their emotional reserves. What we need is more availability of support for carers in their own right.”
