Forty years ago, the first cases of HIV/AIDS in the US began to raise public awareness, but new research highlights the struggle people living with the disease still face against stigma, discrimination and negative labelling in their own families, communities and even among healthcare professionals.
A new study published in Frontiers in Medicine by Flinders University researchers interviewed 20 HIV healthcare providers including doctors, nurses, and counsellors in Yogyakarta and Belu districts, Indonesia to examine their experiences when treating patients with HIV. Their responses indicated admission of personal stigma and discrimination towards people living with HIV.
Although there is no significant differences in the number of HIV cases in the two settings, where Yogyakarta reports 1,353 HIV cases and Belu reporting 1,200 cases, Yogyakarta is a traditionally Muslim area with the majority of people following Javanese culture, while Belu is a traditionally Christian area where the majority of people follow Timorese culture.
Nelsensius Fauk, the lead author of the study, says people living with HIV are being significantly discriminated in a wide range of ways. For example, they may be subjected to separation of their personal belongings by family members, be avoided physically by community members, and they may go through a rejection or not being provided treatment by the healthcare providers.
“Due to the lack of knowledge about HIV, there is still a fear in the community about contracting the disease from patients and a reluctance to help because of personal values, religious stances, socio cultural values and norms in these communities, which directly contribute further towards HIV stigma and discrimination of people living with HIV,” Fauk said.
He added that “HIV stigma and discrimination may lead to people living with HIV concealing their condition and self- isolate, potentially hindering their access to important healthcare services.”
The findings indicate the importance of HIV education programs for family and community members and for the healthcare providers to improve their awareness, so they can accept patients living with HIV.
Senior author Associate Professor Lillian Mwanri said that although treatment modalities have improved significantly, and the quality of life improved where HIV patients are treated effectively, HIV stigma and discrimination remain very prevalent, leading to poor access to service by patients and healthcare providers being less familiar with how to manage and interact with HIV patients.
These in turn increase healthcare providers fear of contracting HIV from patients. This vicious cycle of HIV stigma needs to be addressed urgently to improve effective access of service and the quality of life for people living with HIV.
“Negative perceptions and judgements about people living with HIV through unprotected sex or injecting drug use (IDU), and general negative portrayals of them, are also drivers of discriminatory treatment by healthcare providers,” Mwanri said.
Other factors such as healthcare providers’ gender, race and religion have also been reported to play a role in discriminatory attitudes
“Understanding the perspectives and experiences of healthcare providers related to HIV stigma and discrimination will be an important contribution to the current body of knowledge and useful for the improvement of HIV care systems and delivery, and to improve the health outcomes of people living with HIV in Indonesia and globally,” Mwanri said.
A separate study in Ethiopia has evaluated the success of HIV testing as part of UNAID’s first 90 program.