Academic journal article Scholarly Inquiry for Nursing Practice

Patterns of Resistance: African American Mothers and Adult Children with HIV Illness

Academic journal article Scholarly Inquiry for Nursing Practice

Patterns of Resistance: African American Mothers and Adult Children with HIV Illness

Article excerpt

Although the research on caregiving and caregivers has been extensive, there have been few studies on the cultural context and meaning of African American caregiving in relation to HIV illness. Many Black feminists have argued that African American women experience a world different from those who are not Black and that failure to take account of race, class, and gender is paramount in an attempt to authentically portray the lives of African American women. This study argues that rural African American culture and experiences of racism and discrimination in the rural South shaped the responses of mothers when their adult children developed HIV illness. The study employed the ethnographic techniques of participant observation and in-depth interviews with 14 rural, poor, African American mothers who cared for adult children with HIV illness. Analysis of the data identified patterns of resistance that mothers employed throughout the caregiving experience. Mothers resisted labels and other controlling images that they believed marginalized them and negated what was happening to their children. Mothers used culturally patterned behaviors to protect their families and resist the stigma of HIV/AIDS.

Persons living with HIV (PLWH) are coping with a chronic, fatal disease that requires the support of family and friends, usually over a prolonged period of time. Caregiving constellations have changed since AIDS has become more common, as the disease now affects a much younger and more diverse population. In the beginning of the epidemic, caregivers to persons with HIV/ AIDS were significant others, partners, or close friends of gay men with HIV illness. Mothers and other family members, however, have become more involved as the incidence of HIV has expanded beyond the population of White gay men to include greater numbers of the heterosexual population. Currently, most HIV/AIDS care is provided in the community by informal caregivers in the home (Turner, Catania, & Gagnon, 1994; Ward & Brown, 1994). Furthermore, with the development of newer drug therapies, PLWHs often have a higher quality of life for longer periods of time and are able to participate more actively in their own care, thus influencing the caregiving role.

Brennan and Moore (1994) have postulated that PLWHs require caregivers who can help promote as normal a life as possible. Elder caregiving presents physical and behavioral problems, while PLWH caregiving is more diffuse and less formal. Moreover they have suggested that traditional models of caregiving may be insufficient to characterize and understand the HIV/AIDS caregiving experience, as features specific to HIV/AIDS and its social context pose unique challenges to caregiving. For example, common perceptions of HIV/AIDS as a disease of subgroups-i.e., gays, minorities, drug abusers-have reinforced distorted views that are not helpful in understanding the diverse range of HIV/ AIDS caregiving and the ever changing characteristics of families that are involved. Furthermore, Brennan and Moore (1994) suggested that the social response to the stigma and infectiousness of HIV/AIDS render caregiving less overt and more hidden, as caregivers may not be able to reach out to their own family members and friends for support at a time when they need it the most.

The increasing incidence of infection by the HIV virus means that a wider range of individuals are becoming directly and indirectly affected by the epidemic (Turner et al., 1994). In the southeastern U.S., there has been a substantial increase in the number of AIDS cases among minorities, particularly African Americans. In addition, as the epicenter moves away from urban centers, rural populations are more affected (Centers for Disease Control and Prevention, 1997). Through our clinical experiences at a large health science center and in rural primary care clinics, we became aware of what appeared to be an intriguing phenomenon: young African American men with HIV/AIDS returning to their families of origin in rural areas of the South-"Goin' home to be with my mama," they told us. …

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