Acceptability of mentor mother peer support for women living with HIV in North-Central Nigeria: a qualitative study.

BACKGROUND: Mentor mothers provide psychosocial and other support to pregnant and post-partum women living with HIV (WLHIV), which has been shown to enhance maternal-infant outcomes in the prevention of mother-to-child transmission of HIV (PMTCT). Our objective was to assess the acceptability of mentor mothers as a PMTCT intervention, and to explore opinions on mentor mother program composition and delivery among stakeholders in North-Central Nigeria. METHODS: We conducted nine focus group discussions and 31 in-depth interviews with 118 participants, including WLHIV, pregnant women, male partners, health workers, traditional birth attendants, community leaders, PMTCT program implementers, and policymakers. Participants were purposively recruited from health facilities and surrounding communities in the Federal Capital Territory and Nasarawa State. Transcripts were manually analysed using a Grounded Theory approach, where theory was derived from the data collected. RESULTS: Most participants were female (n = 78, 67%), and married (n = 110, 94%). All participant groups found  mentor mothers acceptable as women providing care to pregnant and postpartum women, and as WLHIV supporting other WLHIV. Mentor mothers were uniquely relatable as role models for WLHIV because they were women, living with HIV, and had achieved an HIV-negative status for their HIV-exposed infants. Mentor mothers were recognized as playing major roles in maternal health education, HIV treatment initiation, adherence, and retention, HIV prevention for male partners and infants, and couple HIV disclosure. Most WLHIV preferred to receive mentor mothers' services at health facilities rather than at home, due to concerns about HIV-related stigma and discrimination through association with mentor mothers. Key mentor mother needs were identified as training, remuneration, and validation as lay health workers. CONCLUSIONS: Mentor mothers are an acceptable PMTCT intervention among stakeholders in North-Central Nigeria. However, stigma and discrimination for both mentor mothers and their clients remain a critical challenge, and mentor mother needs such as training, pay, and a sustainably supported niche in health systems require focused attention. TRIAL REGISTRATION: Clinicaltrials.gov registration number ( NCT01936753 ), registered on September 3, 2013 (retrospectively registered).

"They do not see us as one of them": a qualitative exploration of mentor mothers' working relationships with healthcare workers in rural North-Central Nigeria.

BACKGROUND: In HIV programs, mentor mothers (MMs) are women living with HIV who provide peer support for other women to navigate HIV care, especially in the prevention of mother-to-child transmission of HIV (PMTCT). Nigeria has significant PMTCT program gaps, and in this resource-constrained setting, lay health workers such as MMs serve as task shifting resources for formal healthcare workers and facility-community liaisons for their clients. However, challenging work conditions including tenuous working relationships with healthcare workers can reduce MMs' impact on PMTCT outcomes. This study explores the experiences and opinions of MMs with respect to their work conditions and relationships with healthcare workers. METHODS: This study was nested in the prospective two-arm Mother Mentor (MoMent) study, which evaluated structured peer support in PMTCT. Thirty-six out of the 38 MMs who were ever engaged in the MoMent study were interviewed in seven focus group discussions, which focused on MM workload and stipends, scope of work, and relationships with healthcare workers. English and English-translated Hausa-language transcripts were manually analyzed by theme and content in a grounded theory approach. RESULTS: Both intervention and control-arm MMs reported positive and negative relationships with healthcare workers, modulated by individual healthcare worker and structural factors. Issues with facility-level scope of work, workplace hierarchy, exclusivism and stigma/discrimination from healthcare workers were discussed. MMs identified clarification, formalization, and health system integration of their roles and services as potential mitigations to tenuous relationships with healthcare workers and challenging working conditions. CONCLUSIONS: MMs function in multiple roles, as task shifting resources, lay community health workers, and peer counselors. MMs need a more formalized, well-defined niche that is fully integrated into the health system and is responsive to their needs. Additionally, the definition and formalization of MM roles have to take healthcare worker orientation, sensitization, and acceptability into consideration. TRIAL REGISTRATION: Clinicaltrials.gov number NCT01936753 , registered September 3, 2013.

HIV status disclosure to male partners among rural Nigerian women along the prevention of mother-to-child transmission of HIV cascade: a mixed methods study.

BACKGROUND: HIV status disclosure to male partners is important for optimal outcomes in the prevention of mother-to-child transmission of HIV (PMTCT). Depending on timing of HIV diagnosis or pregnancy status, readiness to disclose and disclosure rates may differ among HIV-positive women. We sought to determine rates, patterns, and experiences of disclosure among Nigerian women along the PMTCT cascade. METHODS: HIV-positive women in rural North-Central Nigeria were purposively recruited according to their PMTCT cascade status: pregnant-newly HIV-diagnosed, pregnant-in care, postpartum, and lost-to-follow-up (LTFU). Participants were surveyed to determine rates of disclosure to male partners and others; in-depth interviews evaluated disclosure patterns and experiences. Tests of association were applied to quantitative data. Qualitative data were manually analysed by theme and content using the constant comparative method in a Grounded Theory approach. RESULTS: We interviewed 100 women; 69% were 21-30 years old, and 86% were married. There were 25, 26, 28 and 21 women in the newly-diagnosed, in-care, postpartum, and LTFU groups, respectively. Approximately 81% of all participants reported disclosing to anyone; however, family members were typically disclosed to first. Ultimately, more women had disclosed to male partners (85%) than to family members (55%). Rates of disclosure to anyone varied between groups: newly-diagnosed and LTFU women had the lowest (56%) and highest (100%) rates, respectively (p = 0.001). However, family (p = 0.402) and male partner (p = 0.218) disclosure rates were similar between cascade groups. Across all cascade groups, fear of divorce and intimate partner violence deterred women from disclosing to male partners. However, participants reported that with assistance from healthcare workers, disclosure and post-disclosure experiences were mostly positive. CONCLUSION: In our study cohort, although disclosure to male partners was overall higher, family members appeared more approachable for initial disclosure. Across cascade groups, male partners were ultimately disclosed to at rates > 75%, with no significant inter-group differences. Fear appears to be a major reason for non-disclosure or delayed disclosure by women to male partners. Augmentation of healthcare workers' skills and involvement can mediate gender power differentials, minimize fear and shorten time to male partner disclosure among women living with HIV, regardless of their PMTCT cascade status. TRIAL REGISTRATION: Clinicaltrials.gov registration number NCT 01936753 , September 3, 2013 (retrospectively registered).

Prevalence and predictors of pediatric disclosure among HIV-infected Nigerian children on treatment.

This cross-sectional, facility-based study aimed to determine the prevalence, age, and main agent of disclosure among Nigerian children on antiretroviral therapy. It also sought to elicit barriers to, and facilitators of disclosure; and any association between disclosure and health outcomes. A semi-structured questionnaire was administered to 110 parents/caregivers of children ≥6 years. CD4 count, viral load, opportunistic infections and adherence information were also extracted from medical records for all 110 children. The mean age of the children in the study was 10.15 years (SD = 2.97), with a median (range) of 9.50 (6-18) years. According to parents/caregivers' accounts, 34 (30.9%) children knew that they were living with HIV, while 74 (67.3%) did not know. Mean age at disclosure was 10.47 years (SD = 2.62), with a median (range) of 10.00 (6-17) years. Most children (79.4%) were disclosed at home by their parent(s)/caregiver. The rest were disclosed at the hospital: five were disclosed by a healthcare provider, while two were accidentally disclosed. The most common reasons for disclosure were related to adherence issues - either to help prepare the children to take their medicines or that the child had refused to take his/her medicines (39.4%). This was followed by the child asking a lot of questions related to his/her health, frequent visits to the hospital, or why s/he was taking a lot of medicines even though s/he did not feel ill (27.3%). Most parents/caregivers did not disclose because the child was considered too young (84.0%) or will not be able to keep their HIV status a secret (10.7%). Multivariate logistic regression showed that only child's age was a statistically significant predictor of status disclosure (OR 1.69, p = .002; 95% CI 1.21-2.34). There was no association between disclosure and self-reported adherence (p = .615).

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 NCT01936753 (retrospective), September 3, 2013.

The Impact of Disclosure on Health and Related Outcomes in Human Immunodeficiency Virus-Infected Children: A Literature Review.

This review explores the association between pediatric human immunodeficiency virus (HIV) disclosure and health and related outcomes among children living with HIV. A multi-stage process was used to search for relevant articles on the ISI Web of Knowledge database. Fifteen articles met the inclusion criteria. Five major outcomes emerged from children's knowledge of their HIV-seropositive status: physical/physiological outcomes; adherence to antiretroviral therapy; psychosocial outcomes; sexual and reproductive health, including HIV prevention outcomes; and disclosure of status by the children. Disclosure of a child's HIV status to the child has value in terms of positive health outcomes for the child, such as better adherence and slower disease progression-albeit the different studies did not always reach the same conclusions, and some suggest negative health outcomes, such as increased psychiatric hospitalization. Yet, there does not seem to be a systematic or coherent system for child disclosure. One recommendation from this review, therefore, is for government and program policies and guidelines that will promote child HIV disclosure in order to address the current low rates of disclosure in sub-Saharan Africa (SSA). More rigorous and longitudinal studies on the outcomes of disclosure, with larger sample sizes, and in SSA, are also needed.