A mixed-methods assessment of disclosure of HIV status among expert mothers living with HIV in rural Nigeria

BACKGROUND: Peer support provided by experienced and/or trained “expert” women living with HIV has been adopted by prevention of mother-to-child transmission of HIV (PMTCT) programs across sub-Saharan Africa. While there is ample data on HIV status disclosure among non-expert women, there is little data on disclosure among such expert women, who support other women living with HIV. OBJECTIVE: This study compared HIV disclosure rates between expert and non-expert mothers living with HIV, and contextualized quantitative findings with qualitative data from expert women. METHODS: We compared survey data on HIV disclosure to male partners and family/friends from 37 expert and 100 non-expert mothers living with HIV in rural North-Central Nigeria. Four focus group discussions with expert mothers provided further context on disclosure to male partners, extended family and peers. Chi square and Fisher’s exact tests were applied to quantitative data. Qualitative data were manually analyzed using a Grounded Theory approach. RESULTS: Two-thirds of the 137 participants were 21–30 years old; 89.8% were married, and 52.3% had secondary-level education. Disclosure to male partners was higher among expert (100.0%) versus non-expert mothers (85.0%), p = 0.035. Disclosure to anyone (93.1% vs 80.8%, p = 0.156), and knowledge of male partners’ HIV status were similar (75.7% versus 66.7%, p = 0.324) between expert and non-expert mothers, respectively. With respect to male partners, HIV serodiscordance rates were also similar (46.4% vs 55.6%, p = 0.433). Group discussions indicated that expert mothers did not consistently disclose to their mentored clients, with community-level stigma and discrimination stated as major reasons for this non-disclosure. CONCLUSIONS: Expert mothers experience similar disclosure barriers as their non-expert peers, especially regarding disclosure outside of intimate relationships. Thus, attention to expert mothers’ coping skills and disclosure status, particularly to mentored clients is important to maximize the impact of peer support in PMTCT. CLINICAL TRIALS REGISTRATION: Clinicaltrials.gov registration number NCT 01936753 (retrospective), September 3, 2013.