Disclosure among HIV-positive women: the role of HIV/AIDS support groups in rural Kenya

Abstract

Disclosure by people living with HIV or AIDS is critical for HIV prevention and care. However, many women choose not to disclose their HIV status for fear of negative outcomes, such as blame and rejection. The World Health Organization suggests that HIV/AIDS support groups help to encourage women to disclose their status, but little is known about the role of such groups in Kenya. This study used qualitative research methods to gain insight into rural women's experience of disclosing a positive HIV status and it explores opinions about the role of support groups in relation to disclosure. Focus group discussions and semi-structured interviews were conducted with HIV/AIDS support group members and leaders. Thematic analysis showed that the women felt a sense of duty to inform others of their HIV status, particularly in order to prevent HIV transmission and to encourage sexual partners to be tested. There were multiple problems associated with disclosure, and negative outcomes such as blame and rejection were common. Support groups gave the women confidence and provided emotional support, which may have assisted them with coping with the negative outcomes of disclosure. The findings demonstrate that such support may improve women's experience of HIV-status disclosure and possibly even promote disclosure. However, initiatives such as these must protect those who disclose and therefore should take into account the local cultural and economic context.

Impact of Support Groups for People Living With HIV on Clinical Outcomes

“…Six articles reported on multiple outcomes while 14 addressed one outcome of interest (Table 1). The majority of studies were conducted in sub-Saharan Africa: South Africa, n=7 15, 18, 22, 26, 32, 35, 36 ; Kenya, n=2 23, 30 ; Mozambique, n=2 17, 17 ; and one each from Nigeria 25 , Rwanda 24 , Tanzania 21 , Uganda 31 and Zimbabwe. 27 Two studies were conducted in Vietnam 33, 34 ; the remaining two reported multi-country results.…”

“…Seven studies—five qualitative 30–34 , one quasi experimental 22 and another using mixed methods 18 — reported associations between membership and/or attendance at support groups and several measures of quality of life (QOL) (Table 1). Measures varied by study and included reported improvement in symptoms, improved confidence and self-esteem, better coping skills, and perceived reduction in stigma.…”

“…Four of the studies were qualitative 30, 31, 33, 34 and most had small sample sizes. One reported only on men 32 and three only on women 22, 30, 33 limiting generalizability of the findings. Despite the limitations in some of the studies the expected impact on quality of life was rated as moderate (Table 2) based on consistently positive results on quality of life across studies.…”

“…Seven studies 20, 21, 30, 31, 35–37 reported on outcomes which may directly or indirectly impact HIV transmission, such as risky sexual behaviour and disclosure of HIV-positive status to sex partners. Three of the seven studies were conducted in South Africa 15, 35, 36 (Table 1).…”

“You Comfort Yourself and Believe in Yourself”: Exploring Lived Experiences of Stigma in HIV-Positive Kenyan Women

“…HIV-related stigma can have detrimental effects on women, including deterring them from accessing critical health care for fear of being stigmatized if found to be HIV-infected (Nyblade, Singh, Ashburn, Brady, & Olenja, 2011;Turan, Miller, Bukusi, Sande, & Cohen, 2008). Much of the Kenyan literature describes how people choose to disclose their status (Gillett & Parr, 2010). Some of the literature focuses on the impact of stigma and the need for its reduction without specifically eliciting HIV-positive women's voices on their experiences.…”