BackgroundThe provision of effective health care to people with HIV and those from usually marginalised backgrounds, such as drug users and sex workers is a growing concern in Nepal, because these populations often do not seek health care, as willingly as the general population. Exploration of the factors, which hinder them seeking health care is crucial. The 'lived' experiences of the usually marginalized participants in this research will reflect on the constraining factors, and contribute to the development of appropriate strategies, which will facilitate people with HIV and other marginal populations to seek more readily appropriate health services.MethodsThis study explored the healthcare-seeking experiences of 20 HIV-positive participants in Nepal, as well as 10 drug-using participants who had never had an HIV test and did not know their HIV status. Using grounded theory, this study investigated the perceptions and experiences of HIV-positive persons, or those perceived to be at risk for HIV, as they sought health care services in locations around Kathmandu Valley.ResultsHealth professionals were perceived to lack knowledge and sensitivity in providing health care to often marginalized and stigmatized injecting drug users, sex workers and HIV-positive people. Stigma and marginalization seem to interfere with doctors' and other health professionals' decisions to voluntarily treat persons who they perceive to be at high risk for HIV infections. Doctors and other health professionals appear suspicious, even unaware, of contemporary biomedical knowledge as it relates to HIV. The fear that certain marginalized groups, such as injecting drug users and sex workers, would be infected with HIV has further intensified stigma against these groups.ConclusionThe study identified the beginning of a change in the experiences of HIV-positive people, or those at risk of HIV, in their seeking of health care. With focused, contemporary HIV education and training, the beginning of positive changes in the knowledge base and attitude of health providers seemed to be apparent to some participants of this study.

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The number of people living with HIV is increasing in Nepal. While efforts have been made to measure the number of people affected by HIV and trends in the epidemic, little is known about how people with HIV perceive their disease, and how they cope on a day-to-day basis. The study also highlights the role of counselling and a variety of support systems. A grounded theory approach was used to explore the life experiences of people living with HIV in Nepal. A detailed study of 20 participants was undertaken. The participants experienced immediate and long-lasting psychosocial effects of HIV which included a prolonged 'death phobia' and heavy burdens of care. Particularly for women, the issues associated with decreasing health and fear of death was severe. A HIV positive diagnosis led some men to take fatalistic approaches, such as using drugs and alcohol to cope with HIV, whereas some women attempted suicide. Counselling and interactions between people with HIV and their HIV positive peers helped to overcome adverse psychosocial consequences and to cope with HIV.

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Keeping substance abusers in prison does not appear to be an effective strategy, as many participants relapse after release from prison. However, a prison-based educational and health promotion strategy would be beneficial for drug users to develop knowledge and skills on staying drug-free. However, to date, no effort has been made to provide such services to drug users and develop their coping strategy after release.