Marginalised HIV positive drug users felt that an HIV diagnosis created benefits as well as losses
60 patients who were 27–60 years of age (mean age 41 y, 68% men, 48% Puerto Rican, 45% African-American), had HIV, and were illicit drug users living in poverty. 78% were unemployed, and 90% had no health insurance. Duration of HIV ranged from 0 to15 years (median 7 y).
Patients were asked the following questions: what does HIV mean to you? How does HIV affect you? Why do some people get HIV but others (engaging in similarly risky behaviours) do not? How has HIV affected how you see yourself? They were also asked about treatment compliance, disclosure, and disease related discrimination. Interviews were audiotaped, transcribed, and analysed for themes.
3 distinct orientations were found. (1) Benefit orientation.Restoration of health. Many patients described a movement from illness to health. Their diagnosis caused them to take better care of themselves than they did before. Some patients felt physically stronger and that drug abuse and addiction were a greater threat than HIV. Participants often described HIV as a battle to be fought. Because they felt healthier than before, they described themselves as being lucky and unique compared with other people who were living with HIV. Personal growth. Participants felt that HIV helped them attain emotional and spiritual growth, enabling them to become better people. Some reported making up for past mistakes and connecting with family, friends, or strangers. (2) Loss orientation.Symptom awareness. Patients had various symptom experiences. A few did not have any symptoms, others felt better after a period of illness (with or without medication), some had side effects from antiretroviral treatment, and some had HIV related symptoms. Participants were concerned about physical deterioration and having the appearance of someone who was sick with HIV. They were worried about not being able to hide their status if their symptoms became severe. Psychological distress. The physical appearance of having HIV caused psychological distress. Other psychological concerns included fear about causing pain to others; losses that the illness represented (eg, not seeing grandchildren get married); and feelings of despondency, depression, and suicidality. A common (although not universal) theme was the desire to avoid thinking about their illness. (3) Status quo orientation. Some patients had a laissez-faire attitude toward their illness and death. They expressed calm resignation about the inevitability of death. Religious faith seemed to play an important part in accepting the inevitability of death, although ambivalence was also expressed. Many patients had witnessed the deaths of relatives, friends, and community members; often poverty, illness, and violence were more immediate threats than AIDS related death.
People who were street drug users and contracted HIV found that the diagnosis was a wake-up call to take better care of themselves. They feared physical deterioration and having the appearance of being ill with HIV because of the stigma. Their daily lives in the midst of poverty, illness, violence, and death meant that an AIDS related death was not an immediate threat. Others saw death as an inevitable part of life.
- Irene Goldstone, RN, MSc
- British Columbia Centre for Excellence in HIV/AIDS St Paul’s Hospital, Providence Health Care Vancouver, British Columbia, Canada
Since injection drug use is driving the HIV epidemic in the US and Eastern Europe and is a critical factor in Canada and Asia,1 the study by Mosack et al is an important contribution, with several caveats.
The study population was living in the only industrialised country without universal health insurance or an adequate social safety net and in the midst of the most oppressive application of prohibition in their country’s history. Universal access to health insurance and to highly active antiretroviral therapy in less oppressive environments do alleviate key barriers but do not ensure that clinically eligible patients access and adhere to therapy.2 The study population was recruited through street outreach. This is not the same as a population of public drug users.3 Given the degree of poverty reported, the study population meets the United Nations’ definition of homelessness. New York City drug users describe homelessness as hierarchical (where the best is secure rented/owned housing and the most severe is sewers/tunnels).4 No mention was made of mental illness and its relation to injection drug users. These caveats may influence the illness narrative. Nurse researchers should take up the challenge of replicating this study in populations with different demographics and in different political environments.
With these caveats in mind, the 3 orientations illustrated serve as guide posts for nurses in the provision of harm reduction, treatment, and care of HIV positive drug users.
For correspondence: Dr K E Mosack, Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
Source of funding: National Institute on Drug Abuse.