“I Should Know Better”: The Roles of Relationships, Spirituality, Disclosure, Stigma, and Shame for Older Women Living With HIV Seeking Support in the South

Abstract

The population of older people living with HIV in the United States is growing. Little is known about specific challenges older HIV-infected women face in coping with the disease and its attendant stressors. To understand these issues for older women, we conducted semi-structured in-depth interviews with 15 women (13 African American, 2 Caucasian) 50 years of age and older (range 50–79) in HIV care in the Southeastern United States, and coded transcripts for salient themes. Many women felt isolated and inhibited from seeking social connection due to reluctance to disclose their HIV status, which they viewed as more shameful at their older ages. Those receiving social support did so mainly through relationships with family and friends, rather than romantic relationships. Spirituality provided great support for all participants, although fear of disclosure led several to restrict connections with a church community. Community-level stigma-reduction programs may help older HIV-infected women receive support.

Sexuality and childbearing as it is experienced by women living with HIV in Sweden: a lifeworld phenomenological study

“…Stigmatization can also increase medication adherence issues (Li, Murray, K., Suwanteerangkul, & Wiwatanadate, 2014), and can increase sexual risk behaviour among people living with HIV (Teti, Bowleg, & Lloyd, 2010; Wingood et al, 2007). In our findings, HIV is described as something that complicates, which is in line with the findings of previous research (Cuca & Rose, 2016; Grodensky et al, 2015; Ho, Goh, & L., 2017). …”

Healthy Aging in Older Women Living with HIV Infection: a Systematic Review of Psychosocial Factors

“…Grodensky et al [25] interviewed 15 OWLH to explore their experiences living with HIV and found that only four participants reported SA. Those participants without sexual partners either had ended past relationships by choice or were abandoned, or their partner died.…”

“…Grodensky et al [25] described family (especially daughters) and platonic relationships as the main sources of social support. Spirituality and private relationship with God also emerged as an important coping strategy, even though women did not rely much on church for social support and rarely disclosed their HIV status within their congregations.…”

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“…Whatever the source, stigma affects disclosure patterns, health outcomes, and quality of life for those living with HIV [43,[60][61][62]. Social support has been identified as a facilitator of self-management of HIV and significantly associated with positive coping for women living with HIV [16,63]. African American women who encounter and/or anticipate stigma related to HIV, may infer that engaging in HIV self-management might disclose their serostatus directly or indirectly-thus, jeopardizing their actual or potential social support networks.…”