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REASONS FOR NON-ADHERENCE IN CHICAGO |
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FEAR OF REJECTION BY FAMILY AND FRIENDS Adherence to antiretroviral medications continues to be a problem with HIV-infected youth. Why? Adolescents who do test positive for HIV forgo testing most often because they fear disclosure, medical adherence, relationships, and psychological burden (23). For adolescents living with HIV, the issues surrounding taking medication are further compounded by the fear of social isolation and rejection by family and friends when their medications disclose their HIV status. This fear is manifested in the tendency to blame gay and bisexual men for being responsible for their illness (24). Youth may believe that their HIV status will brand them as gay and leave them vulnerable to possible discrimination and harassment within the community. Several of the participants feared social and emotional isolation as a result of disclosure and the potential difficulties of establishing peer, familial and intimate relationships (25). In one Chicago study, many expressed attitudes of fear and efforts to hide their status from friends, family, and doctors by skipping doses (26). One participant states: “I told my grandma only because she’s the person I’m living with…I regret that I told her, because she puts my name on [stuff], my name on cups, utensils, and [stuff].” Another participant describes how she hides her medications in her purse and she sleeps with that purse under her arms. When her friends ask her what is in her bag, she tells them “vitamins” (27). Averaging three doses of medication per day, where each dose consisted of 6 pills a day, (28) the many adolescents find it difficult to take medications discretely in fear that family members or friends would find out they were HIV positive. Adolescents missed doses, were late taking doses, ignored special instructions and missed clinic appointments (29); painstaking efforts to hide their status and medications. DON’T TRUST PERSONS OF HIGHER AUTHORITY Disclosing a positive HIV status leaves an individual vulnerable to social stigma (30), and in light of stigmatizing attitudes held by many of their peers and families, many infected youth believe they cannot trust persons of higher authority (31). Many do not accurately report their adherence consistency in fear of being criticized (32). In another Chicago study, inner-city blacks do not trust authorities because they believe they are responsible for “society’s response to the epidemic” (33). This non-disclosure, in turn, may serve to inhibit the development of social support systems and ensue adolescents avoid health care professionals once they have been tested (34). According to Sarah Schroder (35), vice president of the Interfaith House in Chicago, most of [homeless population] don’t have a doctor with whom they feel comfortable disclosing information. Advice they receive is not always trusted right way. Increased access to health care, not in a hospital setting, is perhaps then the most important step in communication and adherence efforts. NEGATIVE AFFECT Furthermore, the psychological burden of isolation and withdrawal from familial and peer disclosure has severed some the development of social support systems (36) and in turn, led to feelings of loneliness, helplessness and depression. One respondent at a Chicago clinic expresses a new definition of helplessness: "You know, I don't want to stay alone all my life… Yeah, friends or relationship, or somebody. I don't want to stay alone” (37). Such depressive and anxious symptoms act as barriers to consistent adherence to medication (38): one Chicago respondent states: “I was going through a real bad time, a depression. I don’t really care any more if I missed [doses] or not” (39). The vulnerability of this population is in part due to stresses associated with daily survival and a lifestyle characterized by high-risk behavior (40). Stress may increase if individuals lack “social support, have few outlets for their frustration, and feel that their circumstances are worsening” (41). These themes prevalent in poverty-stricken communities lead to a sense of helplessness and indifference to personal health (42). Among homeless youth in Chicago, one in ten of those interviewed reported they felt hopeless or worthless persistently (43). The emotional degradation associated with medication acting as a symbolic reminder of their HIV status may become progressively debilitating over time (44). Descriptions of self-hate, self-blame, and feelings of self-destruction are often the cumulative effects on one’s self esteem (45). Under stress as well as depressive symptoms, youths may turn to substance abuse, which in turn has led individuals to engage in riskier sexual behaviors (46). In Chicago, 87% of homeless youth consumed alcohol. Smaller proportions reported using illicit drugs- 19 percent reported ever using hallucinogens, 15 percent reported using cocaine, and 7 percent reported using methamphetamines (47). A respondent at a Chicago clinic describes: “when I go to a party, I don’t like to bring [medications] along so I leave my medication” (48). Ultimately, the combination of low self-esteem and drug use decreases health-seeking behaviors and acts as a barrier to medication regimen adherence (49).
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