The involvement of “expert patients” in HIV service delivery has contributed to task sharing in low-resource settings.1 Many early expert patient interventions were conceptualized to encourage patient self-management in the context of chronic disease.1 Patients were taught self-management skills and encouraged to understand their condition and make appropriate decisions regarding their own care.2 These programs were subsequently adapted to create an additional source of human resources for health, especially in low-resource, high disease-burdened settings.2–4
In the context of rapid antiretroviral therapy (ART) scale-up and universal “test and treat” strategies, expert patients have supported formal health systems in different programs and at multiple levels of care.3,5,6 Initiatives for retaining women in Prevention of Mother-to-Child Transmission of HIV (PMTCT) programs7 have promoted the inclusion of “expert mothers” (EMs) in service delivery. EMs are women living with HIV with personal experience in PMTCT programs, and who are able to draw on their own personal experience to support other women and their families. The involvement of EMs in HIV care was an opportunity to empower women and communities to trigger behavior change among their peers and constituents.8,9 These EM interventions were rooted in the premise that carefully selected expert patients can provide models of exemplary compliance with HIV service uptake and retention.
In the context of PMTCT Options B and B+,7 EMs have been engaged to perform several facility and community tasks for HIV-positive women and their families. EMs often function as adjunct personnel for poorly staffed services; They may conduct routine HIV testing often performed by health care workers (HCWs), conduct pre-HIV and post-HIV test counseling, provide psychosocial and treatment adherence support, support mothers for optimal infant nutrition and health, carry out home visits to assess client health, provide reminders for clinic appointments, and track lost to follow up patients missing from PMTCT and ART care.8 Although there is existing guidance for the involvement of a range of lay and formal HCWs,10–12 comprehensive, standardized guidelines are lacking regarding the engagement and involvement of EMs in HIV-related programming.
This article compares and contrasts different models of EM interventions that were included in 3 implementation research studies aiming to improve retention in care among mothers living with HIV in distinctive African settings to provide guidance for developing standardized models for EM engagement in PMTCT programs.
This comparative synthesis13,14 focuses on the role of EMs in PMTCT in 3 high HIV-burdened, resource-limited settings, drawing from 3 implementation research studies, each aiming to improve retention in care among mothers living with HIV. The objective of this synthesis was to highlight and corroborate qualitative findings and lessons learned with respect to the typical EM candidate, EM intervention development, and implementation of EM programs. The frame of reference and ground for comparison is the role that EMs play in PMTCT service delivery for individual patients, at the health care facility and in the community, noting previous study findings and policies.7,15–24 We present consensus recommendations from the INSPIRE research teams regarding the EM program development and implementation.
Primary data used for this synthesis included formative, qualitative, and behavioral studies conducted before and during each study's implementation (Table 1). These include semistructured interviews, focus group discussions, short questionnaires, and observations with EMs, their clients, and HCWs. This article does not include a comprehensive account of findings from the 3 studies; Instead, objective-specific data in relation to the role of EMs were extracted, comparatively reviewed, and synthesized. Lessons learned in the development and implementation of the study interventions were also incorporated into this analysis. A small number of quotes from interviews and focus group discussions (Table 1) are included in the article to illustrate study participants' views in relation to the role of EMs.
Qualitative data were extracted from 3 larger studies that were designed as cluster-randomized or matched-pair trials (Table 2). The PURE (PMTCT Uptake and REtention) study was based in urban and rural health care facilities in Malawi. The MoMent (Mother Mentor) study in Nigeria and the EPAZ (Eliminating Paediatric AIDS in Zimbabwe) study in Zimbabwe were based in rural primary health centers.
In Zimbabwe, “Expert Mothers” coordinated facility-based mother support groups (MSGs).24 In Nigeria, supervised “Mentor Mothers” supported clients at both facility and community level.22 In Malawi, a distinction was made between facility-based “Mentor Mothers” and community-based “Expert Mothers.”23 For the purpose of this article, all HIV-positive women functioning as peer supporters will be referred to as EMs. The studies compared different EM interventions with routine PMTCT services lacking peer support, with the exception of Nigeria, where a structured, closely supervised EM program and a loosely structured and minimally supervised peer support program were compared.22 A main outcome of all 3 studies was retention of HIV-positive women in PMTCT care (Table 2).
The 3 studies together enrolled 2116 HIV-positive mothers, who were supported by 98 intervention EMs. The studies were established as part of the Integrating and Scaling up PMTCT through Implementation Research (INSPIRE) initiative, funded by the World Health Organisation (WHO) with an award from Global Affairs Canada (GAC). Primary and secondary findings of each of these studies are reported elsewhere and in this supplement22–24; In brief, the EPAZ study did not show that MSGs improved retention in care at 12 months among HIV-exposed infants. The MoMent study showed that compared with unstructured routine peer support, structured EM support was associated with a nearly 6-fold higher likelihood for maternal retention in care and ∼4-fold timely presentation for Early Infant Diagnosis (EID) among Nigerian mother–infant pairs. The PURE study demonstrated that facility-based and community-based peer support interventions through EMs can benefit maternal uptake and retention in Option B+.
Profile of EMs
Table 3 presents the sociodemographic characteristics of, and requirements for, the 98 EMs working within the 3 studies. Several characteristics were similar across the 3 studies with the typical engaged EM being a mother with 3 living children in her mid-thirties, living with HIV for 3 years or less, who had received some primary school education.
EMs' Roles, Training, and Remuneration
The 3 EM interventions shared common aims of improving uptake of services, retention in care, and adherence to HIV treatment. Figure 1 describes the range of roles and responsibilities at community, health system, health facility, and patient/family levels. Table 4 summarizes EM core activities, training, and remuneration across the 3 studies.
Established Roles and Responsibilities
EMs in all 3 studies provided facility-based psychosocial support, supported retention in PMTCT programs, and conducted or participated in support group meetings. EMs in Nigeria and Malawi were involved in community-level interactions with clients.
There was limited support to male partners across the 3 studies. EMs in Malawi were tasked with providing advice and support to male partners and other family members. They encountered recurrent difficulties in meeting with male partners who were reluctant or unavailable to talk with EMs. Despite these challenges, EMs acknowledged the importance of male partner engagement.
EMs received a baseline intensive training at study engagement of 1–2 weeks' duration. Training curricula focused on basic knowledge on HIV transmission, guideline-specific PMTCT strategies, counseling, and general maternal, new-born, and child health.22–24 Ongoing EM mentoring took place during implementation for all 3 studies. Supervision of EMs was often conducted through HCWs; Daily supervision was conducted by the site supervisor, and monthly supervision was carried out by a study coordinator in Malawi. Twice yearly refresher training was organized at regular intervals in Zimbabwe and Malawi, whereas daily supportive supervision and mentoring was provided by designated non-HCW EM supervisors in Nigeria. None of the EMs was trained to perform HIV testing. No specific job aids were used in the projects, but standardized logbooks and registers were used by EMs, coordinators, and HCWs (Table 4).
Facility-Level and Community-Level Activities
HIV-positive women were linked to EMs at antenatal clinic booking and/or at study enrollment. Study EM support was offered to potential clients as an optional addition to routine PMTCT services. All EMs were linked to a specific health facility, but venues for client interactions varied. In Zimbabwe, client interactions occurred exclusively within health facilities. In Nigeria, EMs interacted with clients both within and outside health facilities. In Malawi, “Mentor Mothers” focused on facility-level interactions, whereas “Expert Mothers” supported clients primarily in the community. Community-level interactions largely occurred in EM client homes; however, other venues such as market, church, and support group meeting places were also used.
Facility-based support groups were routinely available in all 3 study settings. Additional support groups also functioned outside a few of the health facilities in Malawi. In Zimbabwe, the groups were led by EMs with health information provided by an HCW; regular MSG attendance and retention in PMTCT care were strongly promoted. Support groups were a source of psychosocial support and information to EMs and PMTCT clients.
EMs in each of the interventions educated and supported clients in HIV testing, partner disclosure, and PMTCT appointment attendance. At health facility level, EMs supported newly and previously diagnosed clients to navigate PMTCT services, and provided appointment reminders through text messages and phone calls. Ultimately, some HCW tasks such as pre-test and post-test counseling, medical documentation, and defaulted client tracking were shifted to EMs. EMs acted as a link between the health system and local communities; they became advocates for PMTCT programming and tackled HIV-related stigma within their communities as a result of their roles and activities.
MoMent Nigeria and PURE Malawi provided a monthly stipend to EMs for both facility-level and community-level peer support activities (Table 4). EMs were hired for the duration of the studies (24 months) during which there were rare opportunities for job advancement. Benefits beyond stipends included mobile phone credit for communication between EMs and clients (Zimbabwe and Malawi), and bicycles for community-based EMs to facilitate regular home visits (Malawi). Source of total EM income varied (Table 4): Malawian EMs, who worked full time, relied solely on their peer support work for income; Nigerian EMs were split almost evenly between relying solely on peer support stipends and having an additional source of income. Although stipends to support activities were appreciated, Nigerian EMs acknowledged the insufficiency of the funds and their partial dependence of these stipends for their personal needs: “We are willing to work, but the stipend is not enough for us to effectively carry out our duties” (EM, Nigeria). None of the Zimbabwean EMs, who were volunteers, derived any income from their peer support activities.
Acceptability of EM Services
There was acceptability of EM services among HIV-positive women and community members, who supported the role as service providers of EMs in all 3 studies. Over time, EMs formed high-value relationships with their clients who called them “alangaziamai” (women's/mothers' counselor) and “asisi” (sister) in Malawi, “kawa” (female friend) in Nigeria, and “mudzidzisi” (teacher friend) in Zimbabwe. In Nigeria, there was an overwhelmingly positive response to EM support from study communities, including pregnant women, women of childbearing age, male partners, traditional birth attendants, and community leaders.25,26
In Nigeria and Malawi, concerns over confidentiality and privacy were noted to be central to acceptance of EM services in the community. Activities led by EMs were initially met with reluctance by clients in some sites in Malawi; some EMs were called “satanists” and “blood suckers” by some who were aware that they were collecting dry blood spot samples during home visits.27,28 Alternative strategies for home visits such as phone calls and visits at other venues were developed to protect both the clients and EMs from stigmatization. Overall, the fact that EMs had received training and were linked to health facilities legitimized them as reliable sources of support.27,28 In Zimbabwe, health authorities acknowledged their appreciation of the MSG program administered by EMs, and clinic nurses supported the activities of EMs.29
Despite high-level acceptability among study participants and communities, there were mixed experiences regarding EM relationships with HCWs in Nigeria and Malawi. There were power differentials between HCWs and EMs, the latter being vulnerable because they were HIV-positive, less educated, and economically disadvantaged. In Malawi and Nigeria, some EMs reported being initially stigmatized and met with suspicion by HCWs: “They [HCWs] were discriminating us […] they were taking us as lower class people than them” (EM, Malawi). “Some of the nurses at my site stigmatize in the way they treat us […] as if it is because of being wayward that we have HIV” (EM, Nigeria). Furthermore, there was evidence that some HCWs were abusing power by assigning EMs inappropriate tasks not included in the latter's scope of work. “My PMTCT focal person does not do her job. I am the one that records everything” (EM, Nigeria). The empowerment of EMs to provide intensive services to clients was viewed by some HCWs as territorial encroachment. Consequently, tensions arose between some Nigerian EMs and HCWs largely because of feelings of loss of power and control from the latter. For EPAZ Zimbabwe, there was a strong collaboration between HCWs and EMs, who coordinated MSGs together. The presence of EMs in facilities in Zimbabwe encouraged HCWs to conduct PMTCT retention activities.29
Evolution of the Roles of EMs Within Health Systems
EM positions and roles within local health systems evolved during implementation in all 3 studies. Data (Table 1) indicated that as EM capabilities increased through experience, mentoring, and supervision, they were motivated and empowered to perform better. In Nigeria, the designation of dedicated, supportive EM supervisors was critical to EM performance. EM supervisors served not only as supervising mentors, but as advocates for the EM's welfare at study sites. “I enjoyed tremendous support from my mentor mother supervisor when she was with us, but now that she is no longer with us, it has not been easy; I have been facing challenges” (EM, Nigeria).
EMs' own opinions regarding their roles, significance, and impact in PMTCT programs were positive: “The most rewarding thing about working with these women is that we protect their lives, but also that we protect their children” (EM, Malawi). “You become a model in the community” (EM, Nigeria). According to EMs in Zimbabwe, “The (mother support) group is my social system as they have become my friends” (EM, Zimbabwe). Ultimately, EMs expressed desire to have a more defined scope of work for their empowerment and also to minimize clashing with HCWs. “I have a challenge […]: work scope. There is need to define what our responsibilities are” (EM, Nigeria). The lack of a formal niche in the health system made EMs feel vulnerable: “We don't have ID cards, no uniforms, and they [HCWs] said we don't work with a [formal] certificate and are not members of staff” (EM, Nigeria).
Data from the 3 INSPIRE studies (Table 1) highlight common EM profiles and activities for PMTCT support in different settings. These findings also highlight the range of roles that EMs play within the formal health sector and the nature of their relationships with HCWs. We examine 4 key factors to consider for the scalability and sustainability of EM interventions within PMTCT programs, especially in high-burden, low-resource settings.
Firstly, our results indicate that EMs and the roles that they play were positively received by clients, communities, and HCWs. In EMs, clients had an approachable and rich source of advice concerning disclosure, psychological health, adherence, infant care, and navigating health services. Relationships between clients and EMs strengthened over time through shared experiences of living with HIV and going through pregnancy, breastfeeding, and child rearing together. For communities, EMs provided a friendly, reliable alternative source of HIV care and prevention, and maternal-child health information in the community, apart from HCWs, family matriarchs, and traditional birth attendants. However, it is important to note the impact of stigma as unavoidable challenges to consider in the implementation of PMTCT.30–33 While EMs may have been expected to have, by nature of their occupation and through training, overcome fear of stigma, our studies illustrate that this is not a valid assumption for every setting where EMs operate currently; The increased visibility of EMs, providing positive role models for clients living with HIV, however, suggests that they and other mothers living with HIV have the potential to reduce stigma at community and health facility system levels.
Among HCWs, EMs were available for task shifting, mainly for documentation, client counseling, and tracing. This enabled HCWs to focus on other clinical and administrative responsibilities. In some instances, HCW abuse of power put EMs in vulnerable positions and reduced their work performance. The implementation of dedicated facility-based supervisors suggests that collaborative, supportive supervision and mentoring improves EM motivation and job satisfaction. Although this situation was ameliorated by the appointment of facility-based supervisors, an alternative and more sustainable solution may be to orientate HCWs to EM roles and responsibilities through supportive health sector policies and procedures. Particularly for settings that have significant challenges in programmatic linkage and accurate pairing of HIV-positive mothers and HIV-exposed infants, EMs provide a much-needed bridge between EID programs and the PMTCT program at large. This allows for successful identification and tracking of infants whose mothers are lost to follow up, in situations where programs have consistently failed.
Second, this synthesis highlights the need for adequate training, supervision, and remuneration in EM programs. The available literature demonstrates the positive impact of EM interventions on PMTCT8 and ART program3,4,34 outcomes. But few studies report on the structure of EM interventions and make recommendations concerning standardization. The impact of EM interventions is likely to be maximized if consensus standards, including adequate training, curriculum, and remuneration, are introduced into these programs. The data illustrate wide variations in terms of roles, time commitments, and remuneration of EMs. Adequate structure, training, and remuneration for EM programs help define the role of EMs in relation to the specific settings where they are to operate. Close and supportive supervision of EMs is critical to maximize their productivity and impact. In the absence of appropriate supervision, EMs may be distracted by clients and/or health care providers to engage in activities not relevant to desired outcomes of PMTCT programs.
Third, these studies highlight the importance of understanding and defining evolving EM roles in relation to HCWs and the formal health system. Current EM interventions are not directly financed or supported by local and national governments. EM recognition and acceptance will be maximized if the niche they occupy within health systems is better defined, before and during implementation. If HCWs and EMs recognize the complementarity of their respective roles, collaboration, and therefore impact, is likely to improve. Currently, processes for greater formalization and recognition of EM roles are lacking. Few programs have established formal certification processes, and national PMTCT guidelines lack specific eligibility criteria, formal training, and supervision guidance regarding EMs. As the health sector increasingly taps into the resourcefulness of EMs, formal guidance is needed to structure their engagement for best outcomes.
Fourth, this comparative synthesis suggests that EM interventions can provide important support to PMTCT programs in both urban and rural settings. In the course of their development, it is essential to consider how EM interventions may be further scaled up and sustained beyond the relatively short timeframes of most EM programs. Despite documented gaps in male partner interventions within PMTCT, current EM interventions lack specific activities to encourage men to test, disclose their HIV status, and start treatment. Additional roles within the PMTCT cascade include HIV testing by trained EMs, which can further alleviate the workload of other HCWs. EM interventions have the potential to impact maternal, new-born, and child health through EM's expanding roles in supporting their clients, and this can only be further developed after their core PMTCT roles are well defined and established.
Our comparative synthesis of 3 EM interventions within the context of implementation research leads us to make a number of proposals that may increase the effectiveness of EM programs and improve the uptake of services, retention in care, and adherence to HIV treatment. First, EM certification and recertification can be highly beneficial for setting standards and for motivating and empowering candidates. Second, depending on the scope of work and hours of engagement, a consensus on if, and how much EMs should be remunerated should be reached between stakeholders including EM community gatekeepers. Third, systematic and supportive mentoring and supervision of EMs are critical to establish friendly work conditions and maintain quality standards for EM productivity. This approach should include HCW input and sensitivity training to help establish rapport while minimizing HCWs' feelings of territorial encroachment by EMs. Fourth, standardized PMTCT-specific training curricula are essential for the EM program implementation, and development of indicator-targeted scope of work descriptions. Last, additional efforts are needed to link and coordinate the work of EMs with existing and new lay and peer supporters, including those working with men and adolescents.
A limitation in our approach was a focus on data derived from research settings and on interventions introduced and/or refined through the implementation of studies. Sustainability and continuation of new and/or improved interventions were considered early during the design and implementation of the studies however, and we did not observe that the structure of the trials constituted a limitation to how EMs (and HCWs) perceived the evolution of their roles.
Further research is urgently needed to assess how EMs may safely and effectively contribute to activities and programs beyond their current scope, such as male partner engagement, HIV testing, community ART, and Maternal, Newborn and Child Health beyond HIV.
The roles of EMs continue to expand as they are engaged to perform additional duties within PMTCT programs. However, it is essential to accompany these expanded responsibilities with consensus structure, recognition, and remuneration strategies. These might include formal integration into the health system, EM program guidelines, training, mentoring, and supervision, as well as a matrix of benefits and rewards commensurate with time demands and sustainability of EM involvement. The importance of EMs in PMTCT programming is well established, and as more evidence is generated to show their impact, there is need for coordinated action and guidelines to attend to the needs of EMs themselves, as well as clients, HCWs, and communities, that are relevant to the missions and goals of governments and their implementing partners, policy makers and funders.
The authors are grateful to the INSPIRE consortium and to the PURE, EPAZ and MoMent study co-investigators, as well as to all EMs, HCWs, and study participants for their dedicated contribution to the three studies. They thank Dr. Nigel Rollins from the WHO for his support and input during the development of this manuscript, and the Ministries of Health in the three countries for their support in the implementation of the INSPIRE studies.
PURE Malawi was approved by Malawi's National Health Sciences Research Commission and the Institutional Review Boards of the University of North Carolina and the University of Toronto. MoMent Nigeria was approved by the Nigeria National Health Research Ethics Committee, the Institutional Review Board of the University of Maryland Baltimore, and the Institutional Review Board of the University of Georgia. EPAZ was approved by the Medical Research Council of Zimbabwe. All three studies were additionally approved by the World Health Organization's Research Ethics Review Committee.
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