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From silencing the self to action: experiences of women living with HIV/AIDS.

Feminist literature has demonstrated that women often maintain behaviors that support silencing of their voices. The critical issue is whether the silencing experience is (a) a destructive process of burying feelings and needs, (b) a protective strategy to preserve personal and professional relationships which they value, (c) a coping mechanism to divorce themselves from an androcentric/ethnocentric health care culture, or all of these. The transition from silence to action may be a process of reacting to a threat to self (i.e., HIV/AIDS diagnosis) where gender normative behaviors become irrelevant and self-advocacy becomes paramount for survival. Alternatively, the transition may be a conscious process of gaining insight into past behaviors that have been learned and culturally supported and making purposeful changes. Data for this study were extracted for secondary analysis from data from a larger study on experiences and needs of persons living with HIV/AIDS. Data were obtained from transcripts from three focus groups (N = 14 women) and six individual interviews. Women ranged in age from 21 to 55; 9 were European American, 7 were African American, and 4 were Latina American. Data were content analyzed and organized using four categories proposed by Jack (1991): (a) externalized self-perception, (b) care as self-sacrifice, (c) silencing the self, and (d) the divided self. Data supported that women with HIV/AIDS reported all four categories of silencing behaviors, particularly early in the HIV trajectory. For some women, an HIV/AIDS diagnosis ignited them to speak for themselves and to shape their own lives based on feelings and needs. For others, peer or professional support or both was the catalyst for the transition from silence to action. Findings suggest interventions that would assist women in judging themselves by internal versus external standards, putting their own needs before the perceived needs of others, expressing themselves toward action rather than avoidance, and feeling comfortable expressing anger.