The Lived Experience of HIV-Positive Nurses

Research Abstract: I Am Still A Nurse: The Lived Experience of HIV-Positive Nurses

Jones, Sande Gracia

Although much has been written about nursing care of people who are HIV-infected, less is known about the experience of nurses who are HIV-positive. A secondary analysis was done on interviews from HIV-positive nurses conducted as a part of a qualitative study on HIV medication adherence funded by the Florida Nurses Foundation (Jones, 2002; Jones, 2001). The study participants were nine HIV-positive nurses, six men and three women ranging in age from 28 to 52 years old. The participants were from New England, the Southeast, Southwest, and the Midwest. At the time of the study, four participants were working full-time as nurses, one participant was on medical leave and looking for new employment, and the remaining four participants were on disability and not working.

The secondary analysis was done to help understand the experience of being a nurse who is HIV-positive. The metaphor that emerged from the data was I Am Still A Nurse, which described the experience of trying to maintain a nursing identity while dealing with HIV as a chronic illness. Three themes comprised the experience: Keeping the secret, Serving as an advocate; and Taking care of myself.

Keeping the secret described keeping the HIV-positive status as private as possible, until the nurse felt comfortable and able to publicly reveal his/her HIV-positive status. The experience involved keeping the medications secret, to keep the HIV status confidential, and avoid potential stigma. This meant taking pills in private, and hiding them in lockers and – behind closed cupboard doors, so that no one would know. It meant deciding in the work setting who could be trusted to know. It included worry about filling out health forms that asked if the person was HIV-positive. It meant worry when having medications filled at the pharmacy, because the pharmacy staff would realize who and what the prescription was for. Keeping the secret acknowledge the continued stigma of AIDs, and stigmatizing behaviors performed by some nurses when asked to care for HIV-positive patients.

One nurse had not disclosed his HIV+ status at work, even though he worked for a physician group that specialized in HIV/AIDS care, because he was concerned about the possible reactions of some of the physicians. Another nurse did not reveal her status when she applied for a nursing job. She considered it like the military-“Don’t ask, don’t tell.” A male nurse explained that he kept his HIV-positive status a secret because he did not want to be defined by that status, “Being HIV does not define who I am, it is only a part of who I am.” An ICU nurse discussed his dismay and concern at how some of his fellow nurses treated patients once they knew that the patient was HIV-positive, “AIDS patients are still considered pariahs by some nurses. Those nurses still have that nontouehing behavior, and they say things like “I don’t want to go near that patient,” “Can somebody else take my turn with that patient?” or “Can someone else handle that patient?”

Serving as an advocate involves the nurses using their professional skills and training to help others. This includes educating nurses about new HIV therapies and setting up support groups for people with HIV. It also entails taking leadership positions in professional or advocacy organizations. Some nurses became involved in HIV/AIDS nursing activities at either the local or national level. Although one nurse’s health was not good, he continued keeping busy with a local AIDS nursing group, “because right now I have a profession, but I don’t have a working profession, so this keeps me involved and in the center of everything related to AIDS and networking and health care providers and all.” Two nurses became involved in advocating at the national level for mandatory regulations for safety needle devices in all health care settings. Several nurses had become involved as HIV educators, while another nurse described becoming a patient advocate in the work setting. As one nurse noted, “I figured if I could help myself, I could help somebody else. I educated myself on HIV/AIDS, and now I share what I have learned with others. I guess you can say I’m a patient advocate.”

Taking care of myself involved the nurses using their nursing skills to learn more about HIV, in order to care for themselves. It also, however, involves the need for the nurses to be supported, particularly by their nursing colleagues. Taking care of myself describes the needs of HIV-positive nurses to receive and benefit from the same support that their patients receive. Like wounded healers, the HIV-positive nurses continue to provide care to those infected and affected by HIV. But who cared for them? Where did they go for the support that they needed, in order to heal themselves and continue onward with their work? When one nurse was asked if there was anything he would like to share with nurses and health care providers, his answer was simple yet poignant, “Realize that your colleagues and peers who are in the health profession and who are battling this disease, need the same love, care and support that we give our clients.”

The study finding that AIDS continues to be perceived as a stigmatizing disease has been noteJrfiy other researchers and other nurses. The International Council of Nurses (ICN) selected “Nurses: Fighting AIDS stigma, caring for all” as the 2003 theme for International Nurses Day. ICN noted that “stigma and discrimination block the march forward against HIV/AIDS, fueling the HIV/AIDS epidemic by creating a culture of secrecy, silence, ignorance, blame, shame and victimization.” The 2003 theme denotes that by continuing to fight AIDS stigma and providing care for all, nurses will lead the way in breaking down the walls of stigma and silence.

The study findings have several implications for practice. A priority implication is the need for assistance and support in the work place for HIV-positive nurses. The American Nurses Association (1993) states that HIV-infected nurses who continue working deserve support and confidentiality. Strategies need to be developed to assist working nurses to take their HIV medication, and continue their HIV-related treatments, without breaching their confidentiality and right to privacy. A second implication for practice is the need for HIV-positive nurses to have their own support group or referral service, while protecting their confidentiality. At this time, there is nothing in the literature that addresses social support in relation to HIV-positive nurses, and there are no known services available exclusively for HIV-positive nurses. Additionally, further study is needed to explore the experience of nurses who have other chronic infections, such as hepatitis, and nurses who suffer from other types of chronic medical conditions, to determine if they also have workplace issues and concerns.

Lastly, an important implication for practice is the need for nurses to help combat the stigma of AIDS. As noted by ICN, nurses must continue to fight AIDS stigma. Nurses must also look within themselves and explore their personal values and beliefs regarding caring for people with AIDS. Nurses can then help to combat the stigma of AIDS by serving as role models when caring for those infected and affected by AIDS.


International Council of Nurses. (2003). Nurses: Fighting AIDS stigma, caring for all. Available at

Jones, S.G. (2002). The other side of the pill bottle: The lived experience of HIV+ nurses on HIV combination drug therapy. JANAC, Journal of the Association of Nurses in AIDS Care, 13(3), 22-36.

Jones, S.G. (2001). Taking HAART: How to support patients with HIV/AIDS. Nursing 2001, 31(12), 36-41.

Reprinted with permission from Paula Massey, Executive Director, Florida Nurses Association.

by Sande Gracia Jones, PhD, ARNP, ACRN, CS, C, BC, Assistant Professor, School of Nursing, College of Health & Urban Affairs, Florida International University, Miami

Copyright Alabama State Nurses’ Association Dec 2003-Feb 2004

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