Social patterns and pathways of HIV care among HIV-positive transgender women

Abstract

Transgender women have the highest HIV prevalence rates of all gender and sexual minorities, yet are less likely to enter and be retained in HIV care. As a result, they are at high risk for HIV-related morbidity and mortality. This study aimed to describe the illness career of transgender women living with HIV and to describe how interactions with health care providers and important others influenced their illness trajectory. The findings are a theoretical model that includes four stages: Having the world come crashing down, shutting out the world, living in a dark world, and reconstructing the world. Relationships within the social network (family, friends, and romantic partners) and the network of health care providers provided the context of the women's illness careers. Pivotal moments marked movement from one phase to the next. Having the World Crashing Down was the first stage that occurred when the participants were diagnosed with HIV. They felt that their lives as they knew them had been destroyed. They indicated that the "whole world just shattered" the moment they found out they had HIV. Shutting Out the World occurred next. During this stage, many participants experienced withdrawal, denial, social isolation and loneliness. As they struggled with their diagnosis, they often avoided HIV care and avoided contact with important others. During the third stage, Living in a Dark World, participants descended into a dark phase of self-destructive life and health-threatening behaviors following their diagnosis. During the fourth stage, Reconstructing the World, participants began to reestablish themselves in the world and found new ways to reengage with important others and resume meaningful life activities. Findings confirm that the illness careers of HIV-positive transgender women are influenced by the social context of the health care setting and interactions with health care providers and important others.