The study, carried out by Magdalena Harris of the University ™s Department of Sociology, involved interviews with 20 individuals living with Hepatitis C in the Auckland region. The results were presented for the first time last month to the Australasian Hepatitis C Conference in Canberra.
Almost all the people interviewed in the study reported at least one, and often multiple, negative encounters with doctors, nurses and dentists, according to Ms Harris. Common were experiences of discrimination, ignorance and manipulation in their interactions, she says.
Many felt that the medical profession has a one-dimensional treatment based approach, whereas what is also needed is information about methods for managing the illness such as changes to diet.
Most research participants had consequently conducted their own research, looking to books and the Internet for methods to cope with the illness.
The research also found that people living with Hepatitis C feel isolated and lack social support. Furthermore, public ignorance of the illness in New Zealand exacerbated the difficulties for people living with the disease.
Participants said they felt there was a distinct stigma and silence about Hepatitis C in our society, Ms Harris says. This, together with a perceived social pressure to cope with the illness, resulted in people feeling uneasy about seeking support from others and ultimately choosing to hide the disease.
Over 60 percent of people interviewed also said they had suffered significant bouts of depression.
Hepatitis C is a virus which affects the liver and is transmitted by blood to blood contact. It primarily affects intravenous drug users or people who have had blood transfusions prior to July 1992.
Ms Harris says there are an estimated 30,000- 40,000 people living with Hepatitis C in this country. Symptoms are varied, but many sufferers experience fatigue, nausea, depression, irritability and sensitivity to light, noise and certain foods. Serious cases of Hepatitis C can result in cirrhosis or liver cancer.
Ms Harris says her study found that participants who were actively involved in support networks exhibited lower levels of distress and isolation. An increase in peer support networks is desirable as this is an important factor in maintaining the physical and mental well-being of people with hepatitis C.
I also believe that drug use needs to move from being seen as a criminal activity to a health issue. In my view this would lessen the stigma associated with Hepatitis C and encourage help-seeking behaviour.
The participants in the study were randomly selected from Narcotics Anonymous and the HCV Resource Centre, a Ministry of Health funded resource centre for information about Hepatitis C.
Ms Harris acknowledges that a larger representative study is needed in New Zealand.
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