Academic journal article Social Work

HIV-Related Stigma in a Sample of HIV-Affected Older Female African American Caregivers

Academic journal article Social Work

HIV-Related Stigma in a Sample of HIV-Affected Older Female African American Caregivers

Article excerpt

People who have HIV disease (refers to the trajectory of the illness that is caused by the retrovirus, whether symptomatic or asymptomatic; symptomatic, or end-stage HIV disease, often is referred to as AIDS) tend to experience a series of unpredictable medical, emotional, and social crises (Poindexter, 1997a); therefore, the trajectory of HIV-affected caregiving also is uncertain and often anxiety provoking (Brown & Powell-Cope, 1991, 1993; Cates, Graham, Boeglin, & Tielker, 1990; Jankowski, Videka-Sherman, & Laquidara-Dickinson, 1996; Land, 1996; Lego, 1994; Lesar, Gerber, & Semmel, 1995). HIV caregiving is an especially salient issue for communities of color, women, and older people for the following reasons. HIV disease has affected children, youths, and adults in racial and ethnic minority groups disproportionately (Anderson, 1990; Brown, Mitchell, & Williams, 1992; Duh, 1991; Jenkins, 1992; Magana & Magana, 1992; Michaels & Levine, 1992, 1993; Thomas & Quinn, 1994). Therefore, when HIV-infected family members return home in the final stages of the disease, or when children who are orphaned by HIV disease need parenting, the older people who become caregivers are likely to be members of an ethnic minority group (Joslin, 1995; Lloyd, 1989). Second, as is the case with informal caregiving in general, caregivers for individuals with HIV are predominately women (Ogu & Wolfe, 1994). Third, many family caregivers to children, youths, and adults with HIV disease are older people, who may be especially unprepared for the burdens of providing care within the context of a highly stigmatized illness (Allers, 1990; Levine, 1993; Linsk, 1994; Muschkin & Ellis, 1993; Ory & Zablotsky, 1993). Older women of color as informal caregivers also face the multiple jeopardies of race or ethnicity, poverty, socioeconomic status, age, and gender (Minkler & Stone, 1985; Okazawa-Rey, 1994), in addition to the difficulties of HIV-related care.

Because HIV-affected older caregivers are understood insufficiently by researchers (Brabant, 1994) and by service providers and advocates in the fields of aging and HIV (Linsk, 1994; Lloyd, 1989), research and service programs are needed to understand and address their needs better (Gutheil & Chichin, 1991; McKinlay, Skinner, Riley, & Zablotsky, 1993; Mellins & Ehrhardt, 1994). The project discussed in this article explored the perceptions and experiences of 19 older female HIV-affected caregivers of color regarding a cluster of relevant variables concerning HIV-related stigma. The purpose of the research was to understand better the effect of anticipated, perceived, and actual discrimination on HIV caregiving.

Background on Stigma

Stigma, defined as "undesired differentness" or "spoiled identity," describes a negative, moral, or judgmental definition of a person or social situation, often connected to discrediting, disgrace, blame, and ascription of responsibility for the condition (Goffman, 1959, 1963). Stigma is part of a cultural system of shared meanings, typologies, or schemas that allow people to interpret the world, control behavior, respond to differences, explain danger or inferiority, or express disapproval (Coleman, 1986; Goffman, 1963; Jones et al., 1984; Page, 1984).

A wide variety of situations, diseases, and social issues include stigma as a concern. Examples of topics seen as stigmatized social problems include criminal behavior (DeVinney & Thomas, 1980), poverty (Alex, 1995), illiteracy (Beder, 1991), receiving public aid (Mills, 1996; Moffitt, 1983; Ranney & Kushman, 1987), suicide (Solomon, 1982), and using alcohol (Rather, 1991) or crack cocaine (Fullilove, Lown, & Fullilove, 1992). A variety of physical or medical states also can be stigmatized, such as involuntary childlessness or infertility (Miall, 1989, 1994; Whiteford & Gonzalez, 1995), epilepsy (Chaplin, Floyd, & Lasso, 1993; Iphofen, 1990; Jacoby, 1994; Schneider, 1988), deafness (Flexer & Wood, 1984), obesity (Robinson & Bacon, 1996), and other physical impairments (Cahill & Eggleston, 1995; Fine & Asch, 1988; Frank, 1988; Hahn, 1988; Royse & Edwards, 1989; Susman, 1994). …

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