It is not just the patient who is weighed down by psychosis, but the caregiver too. Such is the intensity of stigma that it can isolate carers and make them more reluctant to access crucial support. It is much more so in migrant communities.
Research by Professor Terence McCann from Victoria University's School of Nursing and Midwifery explored how caregivers of young people with a first episode of psychosis in 20 Melbourne families coped with the stigma of mental illness.
"For relatives and caregivers of people with mental illness, stigma affects many aspects of their already burdened lives, with friends avoiding not only the person who is ill but also the person's caregivers," Professor McCann said.
The study found some carers, particularly those from migrant backgrounds, chose secrecy and isolation rather than face the rejection, embarrassment or loss of status they feared in the community.
"Some caregivers simply shut themselves off from others," Professor McCann said.
He said this approach could have troubling repercussions.
"Secrecy precludes the caregiver and the young person from receiving crucial support from others, it reinforces their social isolation and alienation from friends and neighbours, and for caregivers in particular, it heightens their overall burden of care," he said. "Secrecy may also mean the caregiver is more reluctant to access timely care for the young person."
He said the secretive approach to mental illness among migrants was consistent with previous research, by Ryder and colleagues in 2000, in which Chinese-Canadian caregivers were more secretive about psychosis than European-Canadian caregivers.
Professor McCann said those who took an open approach with family and friends generally found it lessened their burden.
Family support ranged from discussing how to assist the young person to providing emotional support and sharing responsibility for care, he said.
Openness with friends created a situation where carers felt they were being listened to and cleared the way for emotional and practical support.
Professor McCann said it was not only carers who could benefit from an open approach.
"For young people, openness and contact with others enable them to obtain greater support and acceptance from a wider range of people," he said. "From a community perspective, openness and contact with young people with a first episode of psychosis can help de-stigmatise the illness."
He said casual interactions with young people suffering psychosis or helping them take steps to get back to a relatively normal life were important in reducing the isolating effects of stigma.
The study was published recently in Psychiatry Online
. The co-authors of the study were Professor Dan Lubman from Turning Point Alcohol and Drug Centre and Monash University; and Eileen Clark from Clark's Clerks, Albury.