A Female Perspective on Living with HIV Disease
Goggin, Kathy, Catley, Delwyn, Brisco, Susie T., Engelson, Ellen S., Rabkin, Judith G., Kotler, Donald P., Health and Social Work
The study discussed in this article explored women's views of the positive and negative aspects of life with HIV. Even in the face of a stigmatizing physical illness and with elevated levels of depression and anxiety the 55 women interviewed for the study were able to identify a large number of positive events; for many, HIV served as a motivating force for positive change. Common negative experiences included physical symptoms, a limited lift span, alienation, and stigma. Results suggest that whereas women demonstrate a remarkable capacity to adapt, there are a number of specific areas where social services and community interventions can be targeted.
people of color women
Women are 17 percent of all people with AIDS and 27 percent of HIV-positive individuals in the United States (Centers for Disease Control and Prevention [CDC], 1999a). AIDS is now the fourth leading cause of death among U.S. women ages 25 to 44 (CDC, 1999b). Although women's experience of HIV disease was largely ignored during the early days of the epidemic (Stevens, 1995), much has been learned about the psychosocial effect of HIV disease on women in recent years (for example, Katz, 1997; Moneyham et al., 1997; Nannis, Patterson, & Semple, 1997; Sowell et al., 1997; Wiener, 1991).
Many of the studies that have explored psychological issues among HIV positive women examined women's distress levels and psychosocial needs. High levels of depression and anxiety have been observed consistently (Catalan et al., 1996; Chung & Magraw, 1992; Cochran & Mays, 1994; Commerford, Gular, Orr, Reznikoff, & O'Dowd, 1994; Goggin, Engelson, Rabkin, & Kotler, 1998; Pergami et al., 1993; Semple et al., 1996), especially among substance-abusing women (James, 1988; James, Rubin, & Willis, 1991; Lipsitz et al., 1994). Other reports have documented women's need for access to appropriate health care, assistance with disclosure-related issues, financial assistance, information regarding vertical transmission and pregnancy, aid with establishing guardianship plans, and support for dealing with multiple caregiving responsibilities (for example, Armistead & Forehand, 1995; Goggin & Rabkin, 1997; Hackl, Somlai, Kelly, & Kalichman, 1997; Ickovics & Rodin, 1992; Meilins, 1995; Montoya, Richard, Bell, &Atkinson, 1997; Smith & Rapkin, 1996; Zuckermann & Gordon, 1988).
Although earlier work has documented psychological distress levels and service needs of HIV positive women, less attention has been paid to the positive effect that HIV disease can have on women's lives. Several book chapters (ACTUP/NY Women and AIDS Book Group, 1990; O'Sullivan & Thomson, 1992; Rieder & Ruppelt, 1989; Rudd & Taylor, 1992; Squire, 1993) have explored the life-transforming effects that HIV disease can have.
Furthermore, a few articles have attempted to understand how women's views of their disease may affect their ability to cope (Moneyham et al., 1997; Nannis et al., 1997). These articles have provided some evidence that how HIV-positive women think about HIV-related stressors is an important factor that may account for the individual variability in the ability to maintain a sense of subjective well-being in the face of a devastating fatal disease. However, there are few empirical investigations into this phenomenon that seek to qualitatively describe the experience of HIV-positive women. Understanding what women view as the positive aspects of their experience with HIV disease may provide valuable information. Furthermore, documenting women's negative experiences along with the positives can aid in the development of social services programs and effective treatments that are useful and meaningful to HIV-positive women.
Two recent empirical studies have used a qualitative approach to explore women's experiences of the positive and negative aspects of their lives with HIV disease (Dunbar, Mueller, Medina, & Wolf, 1998; Hackl et al. …