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Improving mothers' access to PMTCT programs in West Africa: A public health perspective
Social Science & Medicine 69 (2009) 807–812
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Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed
Improving mothers’ access to PMTCT programs in West Africa: A public health perspective Philippe Msellati* IRD, UMR 145, IRD-Universite´ de Montpellier/CreCSS, MMSH, 5 Rue du Chateau de l’Horloge, 13094 Aix en Provence cedex 2, France
a r t i c l e i n f o
a b s t r a c t
Article history: Available online 17 June 2009
Despite technical means and apparent political will, the percentage of pregnant women involved in preventing mother-to-child transmission (PMTCT) interventions is not increasing as fast as public health authorities would expect. This is even more striking when compared to the scaling up of access to antiretroviral treatment. It seems important to analyze the successes and failures of the programs and the ‘‘scaling-up’’ of PMTCT programs. This is a major issue for women at two levels: women are very concerned about the health of their children, and they are the ones who implement prevention in collaboration with health services. A review of achievements and failures described from a public health perspective may lead to greater understanding of the social aspects involved in PMTCT program achievements and failures. This paper is based on the combination of a literature review and empirical evidence collected during 15 years of PMTCT implementation, childcare research and treatment programs in West Africa. The analysis aims to identify the social issues that explain the gap between PMTCT program aims and achievements in order to encourage research in the social sciences regarding relationships between mothers and the care system. We find it is possible to build programs at the national level that have a high degree of acceptance of testing and intervention, with a progressive decline in HIV infection among children. However, many obstacles remain, highlighting the necessity to broaden access to HIV screening, develop mass campaigns on testing for couples and improve HIV care and training for caregivers. Because HIV-infected pregnant women are experiencing great psychological distress, healthcare providers must use an approach that is as friendly as possible. Ó 2009 Elsevier Ltd. All rights reserved.
Keywords: West Africa Mothers Access to care HIV Preventing mother-to-child transmission (PMTCT) Women Intervention adherence
Introduction It is estimated that two million children in the world were living with HIV in 2007 and 370,000 were infected, mainly through mother-to-child transmission, during the same year (UNAIDS, 2008). Over the last 10 years, mother-to-child transmission of HIV has nearly been eradicated in the North, as noted in Western Europe, the USA and Japan (Mofenson, 2003). At the same time, prevention of mother-to-child transmission (PMTCT) programs have been implemented throughout Africa. In 2007, 33% of the HIV-positive pregnant women in subSaharan Africa received drugs that could prevent the transmission of HIV to children (Doughty, Luo, Akwara, Gass, & Ekpini, 2008). This figure increased from 3% in 2003, but it is still dramatically low. In 2001, at the UN General Assembly Special Session on AIDS, national governments pledged to reduce the risk of HIV infection through mother-to-child transmission (MTCT) by at least half by
* Tel.: þ33 4 42 52 49 34; fax: þ33 4 42 52 43 34. E-mail address: [email protected] 0277-9536/$ – see front matter Ó 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2009.05.034
2010, by ensuring that 80% of pregnant women attending antenatal care (ANC) had access to PMTCT services. Despite progress in preventing transmission from mothers to children, more than 1000 children around the world were infected with HIV every day in 2007 (UNAIDS, 2008). This paper combines a review of the literature with empirical evidence collected over 15 years of implementation of PMTCT, childcare research and treatment programs in West Africa. It focuses on recent changes in the field of PMTCT, mainly in Africa, since 90% of childhood infections occur on this continent. The analysis aims to identify the social issues that explain the gap between PMTCT program goals and achievements in order to encourage research in the social sciences on the relationship between mothers and the healthcare system. Despite technical means and apparent political will, the percentage of pregnant women involved in PMTCT interventions is not increasing as fast as public health authorities, health professionals and scientists would expect. This is even more striking when compared to the scaling-up of access to antiretroviral treatment (ART). Following other authors (Ky-Zerbo, 2007; Le Coeur, 2007), it seems important to analyze the successes and failures of
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PMTCT programs and their ‘‘scale-up.’’ A review of achievements and failures described from a public health perspective may provide contextual information that will shed light on the social aspects involved in prevention of mother-to-child transmission (PMTCT), particularly in the context of women’s changing roles relative to the health system. The United Nations comprehensive approach to PMTCT includes: primary prevention of HIV among women of child bearing age; preventing unintended pregnancy among women living with HIV; preventing HIV transmission from a woman living with HIV to her infant; and providing appropriate treatment, care and support to women living with HIV and their children and families (UNICEF, 2008). For most programs in the field, PMTCT is in fact focused on the program’s third and fourth components. It is a package of interventions such as: voluntary counseling and testing for pregnant women, ARV prophylaxis for pregnant women and children, infant feeding counseling, and post-natal follow-up until diagnosis of HIV infection in exposed children. Each aspect is important, and weakness in any of the steps will have a negative impact on overall effectiveness, compromising the infant’s HIV-free survival. The consecutive steps can be described as follows: first, a pregnant woman must visit an antenatal care clinic during pregnancy. Second, she must receive HIV counseling at that clinic and agree to take a blood test for HIV. Third, if her test is positive, she then receives post-test HIV counseling, both around her own HIV status and learning about PMTCT intervention (including infant feeding options). Fourth, she must come back to receive the prophylactic ‘‘intervention’’ to avoid infection of her newborn child (a fairly simple procedure, depending on the locally available regimen chosen by health authorities and implemented by health workers). Fifth, she is encouraged to deliver in a health structure with intervention for her and her baby. Sixth, she must apply the infant feeding option she has chosen and undergo follow-up with her baby until the health system can provide the HIV test for the baby, which is the ultimate goal of the process. Then, the health system must offer the HIV-positive woman and her child access to treatment. Perinatal intervention itself can, from a technical point of view, be very simple and only involves the woman taking a single pill at the onset of labor and syrup administered to the child before leaving the maternity ward (Guay et al., 1999). Women can – and do – give up or disappear at any time during the entire process. The technical means that are available to prevent transmission are always improving in terms of infections prevented. Interventions now exist that result in less than 5% of mother-to-child transmission of HIV, even in Africa, but they are becoming increasingly sophisticated and expensive (Ekouevi, Tonwe-Gold, & Dabis, 2005). Achievements of PMTCT programs One hundred and eight countries, representing 99% of the estimated 1.5 million HIV-positive pregnant women in low- and middle-income countries, reported progress data on PMTCT and pediatric care services in 2006 (PMTCT High-level Global Partners Forum, 2007). In many countries, large intervention programs for PMTCT have existed for several years following a pilot phase. For example, The US President’s Emergency Plan for AIDS Relief (PEPFAR) and The Elizabeth Glazer Pediatric AIDS Foundation, through its International Family AIDS Initiatives, have offered HIV testing and prophylaxis for PMTCT to millions of pregnant women in 15–20 countries heavily hit by the epidemic (Spensley et al., 2008; U.S. President’s Emergency Plan for AIDS Relief, 2008).
Gaps and needs: key priorities Reporting is important at the district, regional and national level, but analysis of successes, gaps and problems should probably initially be conducted at the first level, in health structures where PMTCT is implemented. Here each component is important since weaknesses determine a structure’s overall results. Specific analysis at a local level reveals an activity’s inherent reasons for success or failure. The context of PMTCT programs often differs from place to place, with various levels of awareness among pregnant women regarding AIDS, HIV transmission and prevention methods. In Nigeria, for example, the level of knowledge can be considered good in urban areas (Abiodun, Ijaiya, & Aboyeji, 2007; Ekanem & Gbadegesin, 2004; Harms et al., 2005; Okonkwo, Reich, Alabi, Umeike, & Nachman, 2007) but worse in rural areas (Loto et al., 2005). From a public health and programmatic perspective, counseling and testing in antenatal care clinics hold great interest. Traditionally, these antenatal visits are opportunities to provide information and counseling on many topics, including HIV and PMTCT. Moreover, it appears to be an opportune time to offer HIV testing under proper conditions, allowing women, and sometimes even couples, to know their HIV status. It is also the time to start the PMTCT process and to establish connections with antiretroviral programs. In addition, couples counseling improves acceptance of intervention (Semrau et al., 2005). Women agree to testing, come in for the results and then statistics fall dramatically. Health workers usually waver between indignation and incomprehension. Why do these HIV-infected pregnant women disappear from health services when PMTCT programs are set up for their benefit? Most of the programs underline similar problems with discontinued follow-up after testing and counseling or, later, following delivery (Manzi et al., 2005; Perez et al., 2004). When women arrive at antenatal care clinics, health workers must provide counseling and offer HIV testing. One of the first limitations of counseling and testing during pregnancy is that in many places the HIV test is still not offered (Nkonki et al., 2007). There could be many reasons for this situation: a vertical program has not been integrated, lack of trained health professionals and counselors, lack of training in counseling, lack of time because of health personnel’s work load, lack of testing equipment, shortage of tests, and the lack of appropriate places to conduct counseling. There is a great difference between voluntary counseling and testing versus counseling and testing during pregnancy. In the first case, the woman wants to know her HIV status, sometimes following a long individual process to arrive at such a decision. In the second case, the pregnant woman has come to learn how her pregnancy is developing and somebody offers the HIV test as an important test that is beneficial to her child’s health. Of course, she agrees, ‘‘for the sake of her child,’’ but the mental process leading to her acceptance is quite different from the first case. Learning her HIV-positive status this way can be a very difficult experience. In a study conducted in Angola, two-thirds of the HIV-positive women suffered emotional distress, compared to less than one-third of the pregnant women who were not infected with HIV (Bernatsky, Souza, & de Jong, 2007). Many studies have shown that a number of pregnant women fear and refuse HIV testing. The reasons these women give have remained unchanged over time, as demonstrated in Coˆte d’Ivoire (Coulibaly, Msellati, Dedy, Welffens-Ekra, & Dabis, 1998; Desgre´esˆ , Brou, Djohan, & Tijou-Traore, 2007). Nevertheless, the Du-Lou second paper shows that women can change their minds and will agree to take the test later during the follow-up. Women often
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declare that they fear learning they are HIV-infected because they feel this knowledge could accelerate their disease. They also want to first discuss the test with their husbands (Homsy et al., 2007); they fear that their relatives will learn about their HIV status because of breaches in confidentiality on the part of healthcare workers and are apprehensive about possible stigmatization (Kilewo et al., 2001). Another important step in PMTCT programs is the women’s return to health services to obtain the results. Many women need time to think about their decisions and might not return to receive the test results (Temmerman, Ndinya-Achola, Ambani, & Piot, 1995). In many programs, there is a high rate of acceptance for HIV testing, but the rate of returning to obtain the results is low. Women agree to HIV testing, but on the way home they feel that ‘‘they are not ready for it’’ and postpone seeking their results. Other women may have to confront practical obstacles such as lack of time or the cost of transportation for an unplanned visit to the ANC clinic. With the use of rapid HIV testing, several programs implemented the ‘‘same-day test and result’’ process. Women come for their antenatal visit and health workers offer an HIV test, take the blood sample and conduct the test during the prenatal consultation. The test result is then announced in a post-counseling session. This dramatically increases the number of women learning their HIV results. However, since the whole process is rapid, some women might be so surprised by the positive result that they do not return for PMTCT intervention (Painter et al., 2003). Since the establishment of PMTCT programs, the involvement of the male partners of pregnant women in ANC clinics has rarely been over 10% and has sometimes been even lower (Homsy et al., 2006). There are several reasons for this: ANC clinics are not designed for men, and health workers at these facilities are sometimes not at ease with men. In addition, many men believe their wives’ HIV-test results would mirror their own. Mass information campaigns should address this incorrect belief. An important issue for pregnant women is the disclosure of their results. They are often reluctant to make this disclosure out of fear of the consequences, especially partner violence and family exclusion (Karamagi, Tumwine, Tylleskar, & Heggenhougen, 2006). Here again, disclosure is a process and does not always occur immediately after HIV testing, especially in the case of HIV-positive women. A study conducted in Abidjan shows that disclosure can occur at different times: at the onset of pregnancy, during antenatal follow-up, when choosing the feeding option or at resumption of sexual activity (Brou et al., 2007). After post-test counseling, HIV-positive women must return to the ANC clinic for follow-up of their pregnancy and counseling on prophylactic intervention for PMTCT, infant feeding options, prevention of HIV within the partnership, disclosure and how to care for themselves. All this should ideally be done in the same place and, if possible, by the person who did the post-test counseling. It is important to avoid requiring visits to multiple sites, thus increasing the risk of breaches in confidentiality. These sites also need to be comprehensive as well as friendly to these women, who are still shocked by the recent information and are fluctuating between denial and depression. Clearly, women can experience difficulties with health workers resulting in decreased willingness to participate in PMTCT programs (Painter et al., 2004). Some women may change ANC sites after having been identified as HIV-positive at a particular site. Stigmatization regarding HIV infection is so prevalent that the women may prefer to change to another ANC clinic where their HIV status is unknown. Similarly, women who are known to be HIV-positive and who become pregnant for a second time could be reluctant to return to the same ANC clinic; they may fear blame from health workers and especially midwives.
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Pregnant HIV-infected women must deal with their own infection but also with the risk of infecting their future child. One of the main decisions they must make concerns infant feeding. The majority of programs in Africa recommends either initiating replacement feeding from birth or using exclusive breastfeeding for 3–6 months, followed by rapid weaning.1 In terms of HIV infection, artificial feeding from birth is the safest option since there is no risk. However, artificial feeding is difficult and dangerous to implement in a resource-poor environment, as is frequently the case in Africa. In many places, women cannot afford formula feeding, even if most of them would choose it. Another problem with artificial feeding is the risk of being questioned why it was chosen and suspicions of being HIV-infected. Also, the disclosure of HIV status to the partner is often necessary at that time, since he is involved in feeding decisions. Some studies show that exclusive breastfeeding is much safer than mixed feeding (Coovadia et al., 2007). On the other hand, it is not so easy to practice exclusive breastfeeding for 3–6 months. Many obstacles arise such as customary popular practices and the belief that milk provides insufficient nutrients for infants (Kakute et al., 2005). Maternal and infant clinics face many difficulties in providing proper follow-up for women and children after delivery, regardless of their HIV status. The 6-week visit for the mother and infant immunization are not always carried out properly. This is even worse in the case of HIV-exposed and infected infants and children, who should receive individualized follow-up for intervention (Sherman, Jones, Coovadia, Urban, & Bolton, 2004), such as cotrimoxazole prophylaxis. As described in South Africa, poor economic conditions, absence of paternal support and geographic relocation can negatively affect the possibility of providing follow-up for the mother and infant for at least 12 months postpartum (Jones, Sherman, & Varga, 2005). The ultimate objective of PMTCT programs is to prevent HIV infection in children. The follow-up is, therefore, absolutely necessary until the child’s HIV status is known. Not knowing the HIV status of her infant is the new mother’s main worry. Unfortunately, maternal antibodies do not completely dissipate until 12–18 months after birth, and most antibody tests for HIV-exposed infants taken before that time are, therefore, unreliable (Nielsen & Bryson, 2000). Before that age, the only useful methods are virological ones. For these reasons, this process lasts 15–18 months in many countries, which is much too long. Prolonged delay in providing the child’s final diagnosis produces anxiety, psychological distress and depression in women who are waiting and may discontinue their follow-up. Proposed solutions to improve PMTCT programs Access to antenatal care is independent of PMTCT programs and was an issue long before the HIV epidemic. How can women be induced to make antenatal visits when significant geographic, financial, technical and cultural obstacles exist? Free access to ANC is clearly a minimum requirement, and in general, the situation is
1 The UN guidance states that ‘‘the most appropriate infant feeding option for an HIV-infected mother depends on her individual circumstances, including her health status and the local situation, and should consider the health services available and the counselling and support she is likely to receive. Exclusive breastfeeding is recommended for HIV-infected women for the first 6 months of life unless replacement feeding is acceptable, feasible, affordable, sustainable and safe for them and their infants before that time. When replacement feeding is acceptable, feasible, affordable, sustainable and safe, avoidance of all breastfeeding by HIV-infected women is recommended www.who.int/child_adolescent_health/ topics/prevention_care/child/nutrition/hivif/en/index.html.
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slowly improving. How can the percentage of pregnant women making antenatal visits through PMTCT programs be increased? It is possible that pregnant women would go for an HIV test with a major information campaign focused on the advantages for pregnant women and their future children of knowing their HIV status. In the context of PMTCT, one of the proposed solutions is to take the HIV test to the home (Ky-Zerbo, 2007). This step could raise the information level on HIV and PMTCT, but would perhaps not improve coverage of antenatal care. On the other hand, consent and confidentiality could be problematic. ‘‘Self-testing’’ could also be proposed to resolve the problem of confidentiality, but it must be very closely monitored due to the risk of testing without consent, especially among the youngest and less educated women. Inside and outside health structures, general information on HIV and PMTCT can be improved in terms of counseling (Igumbor, Pengpid, & Obi, 2006). Even when pre-test counseling rates and HIV-test acceptance are low at the beginning of a program, they improve with time at many sites, with consent for HIV testing falling generally around 90% of the women who receive counseling (Urban & Chersich, 2004). Fear of the result is likely to be reduced once the program is established over time. One solution to avoid refusal or at least to decrease the number of women declining the HIV test is to change from the ‘‘opt-in approach’’ (client-initiated testing [actively choosing to be tested] often associated with individual pre-test counseling and promoted from the beginning of PMTCT programs) to the ‘‘opt-out approach’’ (provider-initiated routine antenatal testing with group education in HIV and PMTCT for all women appearing at ANC clinics in which the patient must actively refuse the test). This is a recent recommendation from the WHO (WHO/UNAIDS, 2007), and it clearly increases the acceptance of HIV testing in some places among pregnant women (Chandisarewa et al., 2007). The opt-in approach is much more time-consuming in terms of pre-test counseling. The opt-out option has also served to normalize HIV testing and helps in decreasing HIV-related stigmatization. The quality of the counseling, however, can vary greatly (Chopra, Doherty, Jackson, & Ashworth, 2005; Delva, Mutunga, Quaghebeur, & Temmerman, 2006) and requires good training and supervision of health workers to ensure they provide appropriate group counseling before testing and subsequently good post-test counseling. This ‘‘opt-out’’ option is often associated with rapid HIV testing with same-day results (Perez, Zvandaziva, Engelsmann, & Dabis, 2006). The low rate of HIV-test acceptance among male partners has been noted for years, but very few solutions have been identified. Co-ed ANC information meetings could help. Couples counseling and testing is another option to consider. Some researchers and activists have proposed replacing the term ‘‘prevention of motherto-child transmission’’ by ‘‘prevention of parents-to-child transmission.’’ This aims to free the mother from the entire burden of stigmatization and guilt and to help to involve the male partner. We clearly need to develop counseling to help women feel sufficiently confident in themselves to be able to disclose their test results. Peer groups of HIV-infected women acting in health structures significantly help in improving follow-up, as in South Africa’s Mothers2Mothers program (http://www.m2m.org). Access to treatment for women’s health is also part of the solution to improve PMTCT programs. From the beginnings of PMTCT programs, attention has been drawn towards not excluding women from care, even when these interventions focus on the prevention of child infection. In Coˆte d’Ivoire, for example, a French initiative (ITSF) (Noba, Sidibe, Kaba, & Malkin, 2001) and then a program implemented by the United States (MTCT Plus Initiative) (Tonwe-Gold et al., 2007) addressed this issue at an early stage in pilot programs. As access to antiretroviral treatments is now rapidly expanding, the initial weaknesses in programs are disappearing,
and women can receive treatment for themselves and eventually their HIV-infected children. Several programs chose to give prophylactic drugs to pregnant women during an antenatal visit, allowing them to take the drug at home before coming to the delivery ward. It is an interesting option, especially if the women do not have easy access to health structures for delivery. They can then come the day after delivery to declare the birth, immunize the infant and administer the necessary post-natal prophylaxis. Once again, this requires high-quality counseling to improve return rates; several studies have shown that the rates among women who return for nevirapine for the infant can fall below 50% (Karcher et al., 2006). Positive experiences have been reported with nevirapine distribution, with maternal non-adherence occurring predominantly in home deliveries (Albrecht et al., 2006). Some authors propose conducting HIV testing in the delivery ward when those women who evaded all previous measures come for delivery (Homsy et al., 2006). This is technically possible but seems difficult to implement and the counseling could be quite problematic. This measure clearly needs genuine psychological and group support and high levels of awareness among caregivers. A recent paper showed that extended prophylaxis for 14 weeks after birth halved the HIV transmission through breastfeeding (Kumwenda et al., 2008). Other trials are in progress concerning protection during the breastfeeding period with HAART therapy (Farley, 2006). These forthcoming results may soon provide new answers about HIV transmission through breastfeeding, allowing mothers to breastfeed with significantly diminished risks. Like other elements of PMTCT, the implementation of good breastfeeding practices is a process that can be improved through education and training programs (Orne-Gliemann et al., 2006). Recent studies highlight the importance of counseling and support as the cornerstones of infant feeding in the context of HIV (Msellati & Van de Perre, 2008; Rollins et al., 2008). The WHO has recently developed recommendations in favor of scaling up virological diagnosis of HIV infection in children (Gass & Crowley, 2008). This technique is improving while its cost is sharply decreasing. In many remote places where PMTCT programs are implemented, dried blood spots could be used to send the child’s blood sample to the reference laboratory and to perform the PCR test for HIV (Rouet et al., 2005; Sherman, Matsebula, & Jones, 2005). This could greatly improve program results since women can receive test results earlier. Scaling up Operational pilot programs have been implemented for several years, for example in Coˆte d’Ivoire from 1998 to 1999 (Msellati et al., 2001) and later in 2002 (Coulibaly et al., 2006). Beyond pilot programs (Doherty, McCoy, & Donohue, 2005), some PMTCT programs have scaled up with success, for instance in Botswana (Creek et al., 2007) or in rural areas of Cameroon through birth attendants (Welty et al., 2005). An analysis of the Cameroonian experience shows that all components of a good program were implemented in the same places and at the same time. In a period of 5 years, this program has been implemented in 115 health units in 6 of Cameroon’s 10 provinces. Acceptance of the rapid test was over 90% among counseled pregnant women (26,483), with 99% having received post-test counseling and 98% counseling on singledose nevirapine, a much higher percentage than usually reported. The rate of transmission is what could be expected with this type of intervention. Factors of success that authors have recorded include: intensive training of counselors, ‘‘interactive and enthusiastic antenatal education,’’ ‘‘provision of same-day test results and individual pre- and post-test counseling by the same counselor’’
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and ‘‘intensive follow-up and quality assurance provided by the supervisory staff to participating facilities’’ (Welty et al., 2005). In addition, all HIV-positive women and spouses were referred to support groups. Elsewhere, the need for specific professionals for counseling, the involvement of male partners and the availability of antiretroviral drugs for those who need treatment are identified as factors possibly affecting the implementation of PMTCT programs (Magoni et al., 2007). However, these and other experiences show that it is possible to broaden access to PMTCT, even at the national level. But these programs need to strengthen existing services, implement quality follow-up that includes the use of an information system and provide focused supervision and evaluation (Behets et al., 2006). These programs also need specific training for midwives (Raisler & Cohn, 2005), birth attendants and peer-educators, as well as mass campaigns addressed to communities and couples in order to support this ongoing process.
Over the last decade, PMTCT programs have been implemented all over the world. Curiously, unlike access to HAART programs, which have exceeded their goals in several countries such as Namibia, many countries have involved far below 50% of the HIVinfected pregnant women in PMTCT programs. As a number of success stories (Botswana, Cameroon, Rwanda) show, it is possible to build national programs that have a high degree of acceptance of testing and intervention, as well as a progressive decline in HIV infection among children. But many obstacles remain, highlighting the necessity to expand access to HIV screening (through opt-out options) and develop mass campaigns on testing for couples, HIV care and training for caregivers. Because HIV-infected pregnant women are experiencing great psychological distress, the approach by healthcare providers must be as friendly as possible. With improved access to antiretroviral treatment for women, it is also possible to improve their access to PMTCT programs.
Health workers
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Health workers are of course the cornerstones of PMTCT programs. But the above-mentioned activities are time-consuming and health workers and midwives often lack enthusiasm, at least at the program’s start. They have been reluctant because of fear of contamination and stigma. Moreover, the belief that AIDS-related interventions and programs are wealthy poses a constant problem. Health authorities expect financial incentives for programs that, beyond the pilot phase, are seen as imposing an additional task that is integrated into their normal activities. Health workers involved in PMTCT programs were initially volunteers, as is often the case in the AIDS domain, and were quite involved in the fight against the pandemic. They faced many challenges, some of which are still unresolved (Nuwagaba-Biribonwoha, Mayon-White, Okong, & Carpenter, 2007). From a more general point of view, patients have not identified health workers as being as friendly as they should be (Varga & Brookes, 2008), and this may play a role in the difficulties arising in women’s and children’s follow-up. Additionally, health workers are often very reluctant about pregnancies in HIV-positive women, which obviously can dramatically impair their attitude towards them (Harries et al., 2007). Special attention needs to be given to these issues in training and information campaigns. Also, HIV care and management can cause ‘‘burn-out’’ in health workers who consequently need psychosocial support (Smith, Teadale, Besser, & Schmitz, 2008). Conclusions In the context of genuine scaling up of PMTCT programs, there is a strong need at this stage for mass information campaigns aimed at couples and communities to promote voluntary testing, especially for pregnant women and their partners. The opt-out test option and ‘‘same-day test and result’’ process are clearly ways to improve access to PMTCT, but the psychological difficulties confronting women in this situation must be assessed. Peer counseling by women living with HIV is important to implement. In addition, close monitoring and evaluation of the quality of PMTCT programs at the site level are needed to identify difficulties, barriers and missed opportunities in PMTCT (Nkonki et al., 2007) and to aid in overcoming these challenges. Lastly, large-scale training must be implemented for healthcare workers not only to address the technical means of PMTCT but also confidentiality, stigmatization and discrimination.
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Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed
Improving mothers’ access to PMTCT programs in West Africa: A public health perspective Philippe Msellati* IRD, UMR 145, IRD-Universite´ de Montpellier/CreCSS, MMSH, 5 Rue du Chateau de l’Horloge, 13094 Aix en Provence cedex 2, France
a r t i c l e i n f o
a b s t r a c t
Article history: Available online 17 June 2009
Despite technical means and apparent political will, the percentage of pregnant women involved in preventing mother-to-child transmission (PMTCT) interventions is not increasing as fast as public health authorities would expect. This is even more striking when compared to the scaling up of access to antiretroviral treatment. It seems important to analyze the successes and failures of the programs and the ‘‘scaling-up’’ of PMTCT programs. This is a major issue for women at two levels: women are very concerned about the health of their children, and they are the ones who implement prevention in collaboration with health services. A review of achievements and failures described from a public health perspective may lead to greater understanding of the social aspects involved in PMTCT program achievements and failures. This paper is based on the combination of a literature review and empirical evidence collected during 15 years of PMTCT implementation, childcare research and treatment programs in West Africa. The analysis aims to identify the social issues that explain the gap between PMTCT program aims and achievements in order to encourage research in the social sciences regarding relationships between mothers and the care system. We find it is possible to build programs at the national level that have a high degree of acceptance of testing and intervention, with a progressive decline in HIV infection among children. However, many obstacles remain, highlighting the necessity to broaden access to HIV screening, develop mass campaigns on testing for couples and improve HIV care and training for caregivers. Because HIV-infected pregnant women are experiencing great psychological distress, healthcare providers must use an approach that is as friendly as possible. Ó 2009 Elsevier Ltd. All rights reserved.
Keywords: West Africa Mothers Access to care HIV Preventing mother-to-child transmission (PMTCT) Women Intervention adherence
Introduction It is estimated that two million children in the world were living with HIV in 2007 and 370,000 were infected, mainly through mother-to-child transmission, during the same year (UNAIDS, 2008). Over the last 10 years, mother-to-child transmission of HIV has nearly been eradicated in the North, as noted in Western Europe, the USA and Japan (Mofenson, 2003). At the same time, prevention of mother-to-child transmission (PMTCT) programs have been implemented throughout Africa. In 2007, 33% of the HIV-positive pregnant women in subSaharan Africa received drugs that could prevent the transmission of HIV to children (Doughty, Luo, Akwara, Gass, & Ekpini, 2008). This figure increased from 3% in 2003, but it is still dramatically low. In 2001, at the UN General Assembly Special Session on AIDS, national governments pledged to reduce the risk of HIV infection through mother-to-child transmission (MTCT) by at least half by
* Tel.: þ33 4 42 52 49 34; fax: þ33 4 42 52 43 34. E-mail address: [email protected] 0277-9536/$ – see front matter Ó 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2009.05.034
2010, by ensuring that 80% of pregnant women attending antenatal care (ANC) had access to PMTCT services. Despite progress in preventing transmission from mothers to children, more than 1000 children around the world were infected with HIV every day in 2007 (UNAIDS, 2008). This paper combines a review of the literature with empirical evidence collected over 15 years of implementation of PMTCT, childcare research and treatment programs in West Africa. It focuses on recent changes in the field of PMTCT, mainly in Africa, since 90% of childhood infections occur on this continent. The analysis aims to identify the social issues that explain the gap between PMTCT program goals and achievements in order to encourage research in the social sciences on the relationship between mothers and the healthcare system. Despite technical means and apparent political will, the percentage of pregnant women involved in PMTCT interventions is not increasing as fast as public health authorities, health professionals and scientists would expect. This is even more striking when compared to the scaling-up of access to antiretroviral treatment (ART). Following other authors (Ky-Zerbo, 2007; Le Coeur, 2007), it seems important to analyze the successes and failures of
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PMTCT programs and their ‘‘scale-up.’’ A review of achievements and failures described from a public health perspective may provide contextual information that will shed light on the social aspects involved in prevention of mother-to-child transmission (PMTCT), particularly in the context of women’s changing roles relative to the health system. The United Nations comprehensive approach to PMTCT includes: primary prevention of HIV among women of child bearing age; preventing unintended pregnancy among women living with HIV; preventing HIV transmission from a woman living with HIV to her infant; and providing appropriate treatment, care and support to women living with HIV and their children and families (UNICEF, 2008). For most programs in the field, PMTCT is in fact focused on the program’s third and fourth components. It is a package of interventions such as: voluntary counseling and testing for pregnant women, ARV prophylaxis for pregnant women and children, infant feeding counseling, and post-natal follow-up until diagnosis of HIV infection in exposed children. Each aspect is important, and weakness in any of the steps will have a negative impact on overall effectiveness, compromising the infant’s HIV-free survival. The consecutive steps can be described as follows: first, a pregnant woman must visit an antenatal care clinic during pregnancy. Second, she must receive HIV counseling at that clinic and agree to take a blood test for HIV. Third, if her test is positive, she then receives post-test HIV counseling, both around her own HIV status and learning about PMTCT intervention (including infant feeding options). Fourth, she must come back to receive the prophylactic ‘‘intervention’’ to avoid infection of her newborn child (a fairly simple procedure, depending on the locally available regimen chosen by health authorities and implemented by health workers). Fifth, she is encouraged to deliver in a health structure with intervention for her and her baby. Sixth, she must apply the infant feeding option she has chosen and undergo follow-up with her baby until the health system can provide the HIV test for the baby, which is the ultimate goal of the process. Then, the health system must offer the HIV-positive woman and her child access to treatment. Perinatal intervention itself can, from a technical point of view, be very simple and only involves the woman taking a single pill at the onset of labor and syrup administered to the child before leaving the maternity ward (Guay et al., 1999). Women can – and do – give up or disappear at any time during the entire process. The technical means that are available to prevent transmission are always improving in terms of infections prevented. Interventions now exist that result in less than 5% of mother-to-child transmission of HIV, even in Africa, but they are becoming increasingly sophisticated and expensive (Ekouevi, Tonwe-Gold, & Dabis, 2005). Achievements of PMTCT programs One hundred and eight countries, representing 99% of the estimated 1.5 million HIV-positive pregnant women in low- and middle-income countries, reported progress data on PMTCT and pediatric care services in 2006 (PMTCT High-level Global Partners Forum, 2007). In many countries, large intervention programs for PMTCT have existed for several years following a pilot phase. For example, The US President’s Emergency Plan for AIDS Relief (PEPFAR) and The Elizabeth Glazer Pediatric AIDS Foundation, through its International Family AIDS Initiatives, have offered HIV testing and prophylaxis for PMTCT to millions of pregnant women in 15–20 countries heavily hit by the epidemic (Spensley et al., 2008; U.S. President’s Emergency Plan for AIDS Relief, 2008).
Gaps and needs: key priorities Reporting is important at the district, regional and national level, but analysis of successes, gaps and problems should probably initially be conducted at the first level, in health structures where PMTCT is implemented. Here each component is important since weaknesses determine a structure’s overall results. Specific analysis at a local level reveals an activity’s inherent reasons for success or failure. The context of PMTCT programs often differs from place to place, with various levels of awareness among pregnant women regarding AIDS, HIV transmission and prevention methods. In Nigeria, for example, the level of knowledge can be considered good in urban areas (Abiodun, Ijaiya, & Aboyeji, 2007; Ekanem & Gbadegesin, 2004; Harms et al., 2005; Okonkwo, Reich, Alabi, Umeike, & Nachman, 2007) but worse in rural areas (Loto et al., 2005). From a public health and programmatic perspective, counseling and testing in antenatal care clinics hold great interest. Traditionally, these antenatal visits are opportunities to provide information and counseling on many topics, including HIV and PMTCT. Moreover, it appears to be an opportune time to offer HIV testing under proper conditions, allowing women, and sometimes even couples, to know their HIV status. It is also the time to start the PMTCT process and to establish connections with antiretroviral programs. In addition, couples counseling improves acceptance of intervention (Semrau et al., 2005). Women agree to testing, come in for the results and then statistics fall dramatically. Health workers usually waver between indignation and incomprehension. Why do these HIV-infected pregnant women disappear from health services when PMTCT programs are set up for their benefit? Most of the programs underline similar problems with discontinued follow-up after testing and counseling or, later, following delivery (Manzi et al., 2005; Perez et al., 2004). When women arrive at antenatal care clinics, health workers must provide counseling and offer HIV testing. One of the first limitations of counseling and testing during pregnancy is that in many places the HIV test is still not offered (Nkonki et al., 2007). There could be many reasons for this situation: a vertical program has not been integrated, lack of trained health professionals and counselors, lack of training in counseling, lack of time because of health personnel’s work load, lack of testing equipment, shortage of tests, and the lack of appropriate places to conduct counseling. There is a great difference between voluntary counseling and testing versus counseling and testing during pregnancy. In the first case, the woman wants to know her HIV status, sometimes following a long individual process to arrive at such a decision. In the second case, the pregnant woman has come to learn how her pregnancy is developing and somebody offers the HIV test as an important test that is beneficial to her child’s health. Of course, she agrees, ‘‘for the sake of her child,’’ but the mental process leading to her acceptance is quite different from the first case. Learning her HIV-positive status this way can be a very difficult experience. In a study conducted in Angola, two-thirds of the HIV-positive women suffered emotional distress, compared to less than one-third of the pregnant women who were not infected with HIV (Bernatsky, Souza, & de Jong, 2007). Many studies have shown that a number of pregnant women fear and refuse HIV testing. The reasons these women give have remained unchanged over time, as demonstrated in Coˆte d’Ivoire (Coulibaly, Msellati, Dedy, Welffens-Ekra, & Dabis, 1998; Desgre´esˆ , Brou, Djohan, & Tijou-Traore, 2007). Nevertheless, the Du-Lou second paper shows that women can change their minds and will agree to take the test later during the follow-up. Women often
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declare that they fear learning they are HIV-infected because they feel this knowledge could accelerate their disease. They also want to first discuss the test with their husbands (Homsy et al., 2007); they fear that their relatives will learn about their HIV status because of breaches in confidentiality on the part of healthcare workers and are apprehensive about possible stigmatization (Kilewo et al., 2001). Another important step in PMTCT programs is the women’s return to health services to obtain the results. Many women need time to think about their decisions and might not return to receive the test results (Temmerman, Ndinya-Achola, Ambani, & Piot, 1995). In many programs, there is a high rate of acceptance for HIV testing, but the rate of returning to obtain the results is low. Women agree to HIV testing, but on the way home they feel that ‘‘they are not ready for it’’ and postpone seeking their results. Other women may have to confront practical obstacles such as lack of time or the cost of transportation for an unplanned visit to the ANC clinic. With the use of rapid HIV testing, several programs implemented the ‘‘same-day test and result’’ process. Women come for their antenatal visit and health workers offer an HIV test, take the blood sample and conduct the test during the prenatal consultation. The test result is then announced in a post-counseling session. This dramatically increases the number of women learning their HIV results. However, since the whole process is rapid, some women might be so surprised by the positive result that they do not return for PMTCT intervention (Painter et al., 2003). Since the establishment of PMTCT programs, the involvement of the male partners of pregnant women in ANC clinics has rarely been over 10% and has sometimes been even lower (Homsy et al., 2006). There are several reasons for this: ANC clinics are not designed for men, and health workers at these facilities are sometimes not at ease with men. In addition, many men believe their wives’ HIV-test results would mirror their own. Mass information campaigns should address this incorrect belief. An important issue for pregnant women is the disclosure of their results. They are often reluctant to make this disclosure out of fear of the consequences, especially partner violence and family exclusion (Karamagi, Tumwine, Tylleskar, & Heggenhougen, 2006). Here again, disclosure is a process and does not always occur immediately after HIV testing, especially in the case of HIV-positive women. A study conducted in Abidjan shows that disclosure can occur at different times: at the onset of pregnancy, during antenatal follow-up, when choosing the feeding option or at resumption of sexual activity (Brou et al., 2007). After post-test counseling, HIV-positive women must return to the ANC clinic for follow-up of their pregnancy and counseling on prophylactic intervention for PMTCT, infant feeding options, prevention of HIV within the partnership, disclosure and how to care for themselves. All this should ideally be done in the same place and, if possible, by the person who did the post-test counseling. It is important to avoid requiring visits to multiple sites, thus increasing the risk of breaches in confidentiality. These sites also need to be comprehensive as well as friendly to these women, who are still shocked by the recent information and are fluctuating between denial and depression. Clearly, women can experience difficulties with health workers resulting in decreased willingness to participate in PMTCT programs (Painter et al., 2004). Some women may change ANC sites after having been identified as HIV-positive at a particular site. Stigmatization regarding HIV infection is so prevalent that the women may prefer to change to another ANC clinic where their HIV status is unknown. Similarly, women who are known to be HIV-positive and who become pregnant for a second time could be reluctant to return to the same ANC clinic; they may fear blame from health workers and especially midwives.
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Pregnant HIV-infected women must deal with their own infection but also with the risk of infecting their future child. One of the main decisions they must make concerns infant feeding. The majority of programs in Africa recommends either initiating replacement feeding from birth or using exclusive breastfeeding for 3–6 months, followed by rapid weaning.1 In terms of HIV infection, artificial feeding from birth is the safest option since there is no risk. However, artificial feeding is difficult and dangerous to implement in a resource-poor environment, as is frequently the case in Africa. In many places, women cannot afford formula feeding, even if most of them would choose it. Another problem with artificial feeding is the risk of being questioned why it was chosen and suspicions of being HIV-infected. Also, the disclosure of HIV status to the partner is often necessary at that time, since he is involved in feeding decisions. Some studies show that exclusive breastfeeding is much safer than mixed feeding (Coovadia et al., 2007). On the other hand, it is not so easy to practice exclusive breastfeeding for 3–6 months. Many obstacles arise such as customary popular practices and the belief that milk provides insufficient nutrients for infants (Kakute et al., 2005). Maternal and infant clinics face many difficulties in providing proper follow-up for women and children after delivery, regardless of their HIV status. The 6-week visit for the mother and infant immunization are not always carried out properly. This is even worse in the case of HIV-exposed and infected infants and children, who should receive individualized follow-up for intervention (Sherman, Jones, Coovadia, Urban, & Bolton, 2004), such as cotrimoxazole prophylaxis. As described in South Africa, poor economic conditions, absence of paternal support and geographic relocation can negatively affect the possibility of providing follow-up for the mother and infant for at least 12 months postpartum (Jones, Sherman, & Varga, 2005). The ultimate objective of PMTCT programs is to prevent HIV infection in children. The follow-up is, therefore, absolutely necessary until the child’s HIV status is known. Not knowing the HIV status of her infant is the new mother’s main worry. Unfortunately, maternal antibodies do not completely dissipate until 12–18 months after birth, and most antibody tests for HIV-exposed infants taken before that time are, therefore, unreliable (Nielsen & Bryson, 2000). Before that age, the only useful methods are virological ones. For these reasons, this process lasts 15–18 months in many countries, which is much too long. Prolonged delay in providing the child’s final diagnosis produces anxiety, psychological distress and depression in women who are waiting and may discontinue their follow-up. Proposed solutions to improve PMTCT programs Access to antenatal care is independent of PMTCT programs and was an issue long before the HIV epidemic. How can women be induced to make antenatal visits when significant geographic, financial, technical and cultural obstacles exist? Free access to ANC is clearly a minimum requirement, and in general, the situation is
1 The UN guidance states that ‘‘the most appropriate infant feeding option for an HIV-infected mother depends on her individual circumstances, including her health status and the local situation, and should consider the health services available and the counselling and support she is likely to receive. Exclusive breastfeeding is recommended for HIV-infected women for the first 6 months of life unless replacement feeding is acceptable, feasible, affordable, sustainable and safe for them and their infants before that time. When replacement feeding is acceptable, feasible, affordable, sustainable and safe, avoidance of all breastfeeding by HIV-infected women is recommended www.who.int/child_adolescent_health/ topics/prevention_care/child/nutrition/hivif/en/index.html.
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slowly improving. How can the percentage of pregnant women making antenatal visits through PMTCT programs be increased? It is possible that pregnant women would go for an HIV test with a major information campaign focused on the advantages for pregnant women and their future children of knowing their HIV status. In the context of PMTCT, one of the proposed solutions is to take the HIV test to the home (Ky-Zerbo, 2007). This step could raise the information level on HIV and PMTCT, but would perhaps not improve coverage of antenatal care. On the other hand, consent and confidentiality could be problematic. ‘‘Self-testing’’ could also be proposed to resolve the problem of confidentiality, but it must be very closely monitored due to the risk of testing without consent, especially among the youngest and less educated women. Inside and outside health structures, general information on HIV and PMTCT can be improved in terms of counseling (Igumbor, Pengpid, & Obi, 2006). Even when pre-test counseling rates and HIV-test acceptance are low at the beginning of a program, they improve with time at many sites, with consent for HIV testing falling generally around 90% of the women who receive counseling (Urban & Chersich, 2004). Fear of the result is likely to be reduced once the program is established over time. One solution to avoid refusal or at least to decrease the number of women declining the HIV test is to change from the ‘‘opt-in approach’’ (client-initiated testing [actively choosing to be tested] often associated with individual pre-test counseling and promoted from the beginning of PMTCT programs) to the ‘‘opt-out approach’’ (provider-initiated routine antenatal testing with group education in HIV and PMTCT for all women appearing at ANC clinics in which the patient must actively refuse the test). This is a recent recommendation from the WHO (WHO/UNAIDS, 2007), and it clearly increases the acceptance of HIV testing in some places among pregnant women (Chandisarewa et al., 2007). The opt-in approach is much more time-consuming in terms of pre-test counseling. The opt-out option has also served to normalize HIV testing and helps in decreasing HIV-related stigmatization. The quality of the counseling, however, can vary greatly (Chopra, Doherty, Jackson, & Ashworth, 2005; Delva, Mutunga, Quaghebeur, & Temmerman, 2006) and requires good training and supervision of health workers to ensure they provide appropriate group counseling before testing and subsequently good post-test counseling. This ‘‘opt-out’’ option is often associated with rapid HIV testing with same-day results (Perez, Zvandaziva, Engelsmann, & Dabis, 2006). The low rate of HIV-test acceptance among male partners has been noted for years, but very few solutions have been identified. Co-ed ANC information meetings could help. Couples counseling and testing is another option to consider. Some researchers and activists have proposed replacing the term ‘‘prevention of motherto-child transmission’’ by ‘‘prevention of parents-to-child transmission.’’ This aims to free the mother from the entire burden of stigmatization and guilt and to help to involve the male partner. We clearly need to develop counseling to help women feel sufficiently confident in themselves to be able to disclose their test results. Peer groups of HIV-infected women acting in health structures significantly help in improving follow-up, as in South Africa’s Mothers2Mothers program (http://www.m2m.org). Access to treatment for women’s health is also part of the solution to improve PMTCT programs. From the beginnings of PMTCT programs, attention has been drawn towards not excluding women from care, even when these interventions focus on the prevention of child infection. In Coˆte d’Ivoire, for example, a French initiative (ITSF) (Noba, Sidibe, Kaba, & Malkin, 2001) and then a program implemented by the United States (MTCT Plus Initiative) (Tonwe-Gold et al., 2007) addressed this issue at an early stage in pilot programs. As access to antiretroviral treatments is now rapidly expanding, the initial weaknesses in programs are disappearing,
and women can receive treatment for themselves and eventually their HIV-infected children. Several programs chose to give prophylactic drugs to pregnant women during an antenatal visit, allowing them to take the drug at home before coming to the delivery ward. It is an interesting option, especially if the women do not have easy access to health structures for delivery. They can then come the day after delivery to declare the birth, immunize the infant and administer the necessary post-natal prophylaxis. Once again, this requires high-quality counseling to improve return rates; several studies have shown that the rates among women who return for nevirapine for the infant can fall below 50% (Karcher et al., 2006). Positive experiences have been reported with nevirapine distribution, with maternal non-adherence occurring predominantly in home deliveries (Albrecht et al., 2006). Some authors propose conducting HIV testing in the delivery ward when those women who evaded all previous measures come for delivery (Homsy et al., 2006). This is technically possible but seems difficult to implement and the counseling could be quite problematic. This measure clearly needs genuine psychological and group support and high levels of awareness among caregivers. A recent paper showed that extended prophylaxis for 14 weeks after birth halved the HIV transmission through breastfeeding (Kumwenda et al., 2008). Other trials are in progress concerning protection during the breastfeeding period with HAART therapy (Farley, 2006). These forthcoming results may soon provide new answers about HIV transmission through breastfeeding, allowing mothers to breastfeed with significantly diminished risks. Like other elements of PMTCT, the implementation of good breastfeeding practices is a process that can be improved through education and training programs (Orne-Gliemann et al., 2006). Recent studies highlight the importance of counseling and support as the cornerstones of infant feeding in the context of HIV (Msellati & Van de Perre, 2008; Rollins et al., 2008). The WHO has recently developed recommendations in favor of scaling up virological diagnosis of HIV infection in children (Gass & Crowley, 2008). This technique is improving while its cost is sharply decreasing. In many remote places where PMTCT programs are implemented, dried blood spots could be used to send the child’s blood sample to the reference laboratory and to perform the PCR test for HIV (Rouet et al., 2005; Sherman, Matsebula, & Jones, 2005). This could greatly improve program results since women can receive test results earlier. Scaling up Operational pilot programs have been implemented for several years, for example in Coˆte d’Ivoire from 1998 to 1999 (Msellati et al., 2001) and later in 2002 (Coulibaly et al., 2006). Beyond pilot programs (Doherty, McCoy, & Donohue, 2005), some PMTCT programs have scaled up with success, for instance in Botswana (Creek et al., 2007) or in rural areas of Cameroon through birth attendants (Welty et al., 2005). An analysis of the Cameroonian experience shows that all components of a good program were implemented in the same places and at the same time. In a period of 5 years, this program has been implemented in 115 health units in 6 of Cameroon’s 10 provinces. Acceptance of the rapid test was over 90% among counseled pregnant women (26,483), with 99% having received post-test counseling and 98% counseling on singledose nevirapine, a much higher percentage than usually reported. The rate of transmission is what could be expected with this type of intervention. Factors of success that authors have recorded include: intensive training of counselors, ‘‘interactive and enthusiastic antenatal education,’’ ‘‘provision of same-day test results and individual pre- and post-test counseling by the same counselor’’
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and ‘‘intensive follow-up and quality assurance provided by the supervisory staff to participating facilities’’ (Welty et al., 2005). In addition, all HIV-positive women and spouses were referred to support groups. Elsewhere, the need for specific professionals for counseling, the involvement of male partners and the availability of antiretroviral drugs for those who need treatment are identified as factors possibly affecting the implementation of PMTCT programs (Magoni et al., 2007). However, these and other experiences show that it is possible to broaden access to PMTCT, even at the national level. But these programs need to strengthen existing services, implement quality follow-up that includes the use of an information system and provide focused supervision and evaluation (Behets et al., 2006). These programs also need specific training for midwives (Raisler & Cohn, 2005), birth attendants and peer-educators, as well as mass campaigns addressed to communities and couples in order to support this ongoing process.
Over the last decade, PMTCT programs have been implemented all over the world. Curiously, unlike access to HAART programs, which have exceeded their goals in several countries such as Namibia, many countries have involved far below 50% of the HIVinfected pregnant women in PMTCT programs. As a number of success stories (Botswana, Cameroon, Rwanda) show, it is possible to build national programs that have a high degree of acceptance of testing and intervention, as well as a progressive decline in HIV infection among children. But many obstacles remain, highlighting the necessity to expand access to HIV screening (through opt-out options) and develop mass campaigns on testing for couples, HIV care and training for caregivers. Because HIV-infected pregnant women are experiencing great psychological distress, the approach by healthcare providers must be as friendly as possible. With improved access to antiretroviral treatment for women, it is also possible to improve their access to PMTCT programs.
Health workers
Abiodun, M. O., Ijaiya, M. A., & Aboyeji, P. A. (2007). Awareness and knowledge of mother-to-child transmission of HIV among pregnant women. Journal National Medical Association, 99, 758–763. Albrecht, S., Semrau, K., Kasonde, P., Sinkala, M., Kankasa, C., Vwalika, C., et al. (2006). Predictors of nonadherence to single-dose nevirapine therapy for the prevention of mother-to-child HIV transmission. Journal Acquired Immune Deficiency Syndrome, 41, 114–118. Behets, F. M., Matendo, R., Vaz, L. M., Kilese, N., Nanlele, D., Kokolomami, J., et al. (2006). Preventing vertical transmission of HIV in Kinshasa, Democratic Republic of the Congo: a baseline survey of 18 antenatal clinics. Bulletin of the World Health Organization, 84, 969–975. Bernatsky, S., Souza, R., & de Jong, K. (2007). Mental health in HIV-positive pregnant women: results from Angola. AIDS Care, 19, 674–676. Brou, H., Djohan, G., Becquet, R., Allou, G., Ekouevi, D. K., Viho, I., et al. (2007). When do HIV-infected women disclose their HIV status to their male partner and why? A study in a PMTCT programme, Abidjan. PLoS Med, 4, e342. Chandisarewa, W., Stranix-Chibanda, L., Chirapa, E., Miller, A., Simoyi, M., Mahomva, A., et al. (2007). Routine offer of antenatal HIV testing (‘‘opt-out’’ approach) to prevent mother-to-child transmission of HIV in urban Zimbabwe. Bulletin of the World Health Organization, 85, 843–850. Chopra, M., Doherty, T., Jackson, D., & Ashworth, A. (2005). Preventing HIV transmission to children: quality of counselling of mothers in South Africa. Acta Paediatrica, 94, 357–363. Coovadia, H. M., Rollins, N. C., Bland, R. M., Little, K., Coustsoudis, A., Bennish, M. L., et al. (2007). Mother-to-child transmission of HIV-1 infection during exclusive breastfeeding in the first 6 months of life: an intervention cohort study. Lancet, 369, 1107–1116. Coulibaly, D., Msellati, P., Dedy, S., Welffens-Ekra, C., & Dabis, F. (1998). Attitudes et comportements des femmes enceintes face au de´pistage du VIH a` Abidjan (Coˆte d’Ivoire) en 1995 et 1996. Raisons du refus du test et indiffe´rence face aux re´sultats. Sante´, 8, 234–238. Coulibaly, M., Noba, V., Rey, J. L., Msellati, P., Ekpini, R., Chambon, J. F., et al. (2006). Bilan de l’intervention de Pre´vention de la Transmission Me`re Enfant (PTME) du programme PNLS/FSTI a` Abidjan (Coˆte d’Ivoire/1999–2002). Medecine Tropicale, 66, 53–58. Creek, T. L., Ntumy, R., Seipone, K., Smith, M., Mogodi, M., Smit, M., et al. (2007). Successful introduction of routine opt-out HIV testing in antenatal care in Botswana. Journal of Acquired Immune Deficiency Syndrome, 45, 102–107. Delva, W., Mutunga, L., Quaghebeur, A., & Temmerman, M. (2006). Quality and quantity of antenatal HIV counselling in a PMTCT programme in Mombasa, Kenya. AIDS Care, 18, 189–193. Desgre´es-Du-Louˆ, A., Brou, H., Djohan, G., & Tijou-Traore, A. (2007). Le refus du de´pistage VIH pre´natal: e´tude de cas a` Abidjan (Coˆte d’Ivoire). Sante´, 17, 133–141. Doherty, T. M., McCoy, D., & Donohue, S. (2005). Health system constraints to optimal coverage of the prevention of mother-to-child HIV transmission programme in South Africa: lessons from the implementation of the national pilot programme. African Health Sciences, 5, 213–218. Doughty, O., Luo, C., Akwara, P., Gass, R., & Ekpini, R. Prevention of mother to child transmission of HIV and paediatric care and treatment: measuring progress in low- and middle-income countries, 2004–2006. XVIIth International AIDS Conference, 2008, Mexico. Ekanem, E. E., & Gbadegesin, A. (2004). Voluntary counselling and testing (VCT) for Human Immunodeficiency Virus: a study on acceptability by Nigerian women attending antenatal clinics. African Journal of Reproductive Health, 8, 91–100. Ekouevi, D. K., Tonwe-Gold, B., & Dabis, F. (2005). Advances in the prevention of mother-to child transmission of HIV-1 infection in resource-limited settings. AIDS Read, 15, 479–480, 487–493. Farley, T., For the Kesho-Bora study group. Antiretroviral prophylaxis/treatment and infant feeding modality among HIV-1-infected women in sub-Saharan Africa: the Kesho Bora study. CDB0402. XVIth International AIDS Conference, 2006.
Health workers are of course the cornerstones of PMTCT programs. But the above-mentioned activities are time-consuming and health workers and midwives often lack enthusiasm, at least at the program’s start. They have been reluctant because of fear of contamination and stigma. Moreover, the belief that AIDS-related interventions and programs are wealthy poses a constant problem. Health authorities expect financial incentives for programs that, beyond the pilot phase, are seen as imposing an additional task that is integrated into their normal activities. Health workers involved in PMTCT programs were initially volunteers, as is often the case in the AIDS domain, and were quite involved in the fight against the pandemic. They faced many challenges, some of which are still unresolved (Nuwagaba-Biribonwoha, Mayon-White, Okong, & Carpenter, 2007). From a more general point of view, patients have not identified health workers as being as friendly as they should be (Varga & Brookes, 2008), and this may play a role in the difficulties arising in women’s and children’s follow-up. Additionally, health workers are often very reluctant about pregnancies in HIV-positive women, which obviously can dramatically impair their attitude towards them (Harries et al., 2007). Special attention needs to be given to these issues in training and information campaigns. Also, HIV care and management can cause ‘‘burn-out’’ in health workers who consequently need psychosocial support (Smith, Teadale, Besser, & Schmitz, 2008). Conclusions In the context of genuine scaling up of PMTCT programs, there is a strong need at this stage for mass information campaigns aimed at couples and communities to promote voluntary testing, especially for pregnant women and their partners. The opt-out test option and ‘‘same-day test and result’’ process are clearly ways to improve access to PMTCT, but the psychological difficulties confronting women in this situation must be assessed. Peer counseling by women living with HIV is important to implement. In addition, close monitoring and evaluation of the quality of PMTCT programs at the site level are needed to identify difficulties, barriers and missed opportunities in PMTCT (Nkonki et al., 2007) and to aid in overcoming these challenges. Lastly, large-scale training must be implemented for healthcare workers not only to address the technical means of PMTCT but also confidentiality, stigmatization and discrimination.
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