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Article Excerpt
Women, particularly minority women, are becoming infected with HIV in increasing numbers. Women report feeling socially isolated and have a greater caregiving burden than do men. Rural women in particular may face greater stigma and a more limited accessibility to health services. This study examined rural women with HIV and AIDS and the staff members who work with them, using a qualitative design. Interviews and observations were conducted, and documents were collected as well. Results of the study revealed (a) barriers to these women regarding the accessibility of services, including mental health counseling; (b) a need to empower these women to be proactive in their health care; (c) a stronger social support system and sense of hope in women identified as doing well; (d) a better quality of life may be obtained with protease inhibitors; and (e) empowerment may accrue through support groups.
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Human Immunodeficiency Virus (HIV), originally identified in the United States in 1981, was thought to exclusively affect gay men. Since that time, women have contracted HIV and AIDS in ever increasing numbers. Minority women appear to be especially vulnerable; for instance, 45% of women infected with HIV are women of color, primarily African American and Hispanic (Centers for Disease Control, 1998; Kaplan, Marks, & Mertens, 1997); and 57% of all women infected with AIDS are African American (CDC, 1999). Moreover, women die sooner after an AIDS diagnosis than do men (Lea, 1994; Rothenberg et al., 1987). In a disturbing finding, though overall AIDS deaths in the United States in 1996 declined by 15% for men, they increased by 3% for women (Waters, 1997).
The gender differential in AIDS deaths can be attributed to several factors. The decrease in deaths seen in men with AIDS may be due to the advent of antiretroviral medication, which includes protease inhibitors and reverse transcriptase inhibitors. This drug cocktail decreases the HIV viral load in both genders (Morbidity and Mortality Weekly Report, 1998; Notermans et al., 1998). However, U.S. studies indicate that antiretroviral medications are not fully used by HIV-positive women because of limited access, patient or provider knowledge, or attitudes about the treatment (Duerr, 1997). In addition, feminist research suggests that women with HIV/AIDS may use silence as a way to cope when they feel disempowered (DeMarco, Miller, Patsdaughter, Chisolm, & Grindel, 1998). For these women, silence and a lack of self-advocacy could lead to a poor quality of life or early death from the illness. For mothers with HIV/AIDS, this silence can be compounded if they are driven by gender role expectations dictating that they sacrifice their own needs for their children. A mother with HIV/AIDS who ignores her own health to care for her family may very well be hastening an early death from the disease. Miller (1991) noted that if a woman tries to empower herself, she is viewed as selfish, because she is not enhancing the power of others. Travers and Bennett (1996) stated that the lack of power in many areas for women with HIV/AIDS has resulted in isolation, discrimination, and neglect. For some women, however, "a life threatening diagnosis may be the catalyst for rejection of gender-specific norms and thus increased assertiveness" (DeMarco et al., p. 541). One focus of the current study was to examine resiliency in women with HIV/AIDS who seem to cope effectively.
Research relating to women with HIV/AIDS has focused primarily on urban samples. Although a paucity of HIV/AIDS research has been conducted outside of urban settings, recent studies demonstrate an alarming increase in HIV infection rates in rural areas (Heckman, Kelly, Somlai, Kalichman, & Heckman, 1999; McCoy, Metsch, McCoy, & Weatherby, 1999; Zagumny & Holt, 1999). Women in rural areas are becoming HIV infected at higher rates than men, and their willingness to engage in risky sexual behavior underscores the need for prevention efforts. Moreover, women with HIV/AIDS living in rural areas may have even less access to health services than those in urban areas. Individuals living with HIV/AIDS in rural areas may face greater stigma than their urban counterparts, which could result in a reluctance to disclose, and less social support (Heckman, Somlai, Otto-Salaj, & Davantes, 1998; McCoy et al., 1999). In the 1980s, a special population of people with AIDS who tended to be more resilient and live longer was identified as long-term survivors. Barroso (1997) noted that long-term AIDS survivors do not make AIDS the sole focus of their lives, tend to re-prioritize their lives and goals, have a positive attitude, and derive satisfaction from helping others with HIV/AIDS. It is important to examine resiliency in women in order to understand how to focus interventions to augment more effective coping. In addition, women with HIV/AIDS who demonstrate resiliency in the face of AIDS can serve as positive role models in support groups.
The purpose for this study was to examine the perceptions of (a) rural women with HIV/AIDS; (b) employees at HIV/AIDS service organizations related to barriers to services and mental health counseling; and (c) characteristics of infected women who are more resilient. This study contributes to the existing HIV/AIDS research by focusing on how women with HIV/AIDS and service personnel view obstacles and ways to empower women in obtaining support, services, and mental health counseling. The obstacles could contribute to the alarming increases in infection rates and early death due to AIDS in women. Finally, this study is unique in that it focuses on women from rural areas. The vast majority of AIDS research has examined urban populations.
METHOD
Design and Research Materials
Qualitative research employing grounded theory was used in this study. Qualitative research seeks to study phenomena in depth rather than using statistical significance and large sample sizes. Participants are studied in naturalistic settings, and the researcher becomes the instrument through which data is filtered. With qualitative research, the emphasis is on depth rather than breadth.
For this study, the directors of two AIDS agencies servicing rural areas were contacted and informed about the purpose of the study. After receiving approval from the Institutional Review Board, the researcher employed multiple sources of data including interviews with women diagnosed with HIV/AIDS and professional staff, observations in naturalistic settings such as one woman interacting with her family at home, and information from documents (e.g., newspaper articles). Sample interview questions included: (a) What obstacles do you perceive, if any, in accessing services at this agency? (b) What is your experience with counseling, including group counseling, at this agency? These multiple sources of data produced a triangulation of findings, because the data collected by the researcher were confirmed through other sources. This procedure strengthens the design (because more objective sources such as newspaper articles are integrated with participants' perceptions, which provide a richer data base) and mitigates against possible distortions in the interpretations gleaned from the data. Analysis of the data involved breaking down and coding elements, then comparing, conceptualizing, and categorizing data from...
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