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Community approaches to preventing mother-tochild HIV transmission: perspectives from rural Lesotho Megan Towle & Daniel H Lende Published online: 11 Nov 2009.

To cite this article: Megan Towle & Daniel H Lende (2008) Community approaches to preventing mother-to-child HIV transmission: perspectives from rural Lesotho, African Journal of AIDS Research, 7:2, 219-228, DOI: 10.2989/ AJAR.2008.7.2.7.524 To link to this article: http://dx.doi.org/10.2989/AJAR.2008.7.2.7.524

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Community approaches to preventing mother-to-child HIV transmission: perspectives from rural Lesotho Megan Towle and Daniel H Lende*

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Department of Anthropology, University of Notre Dame, 611 Flanner Hall, Notre Dame, Indiana 46556, the United States * Corresponding author, e-mail: [email protected] This paper examines the cultural and structural difficulties surrounding effective prevention of mother-to-child HIV transmission (PMTCT) in rural Lesotho. We argue for three strategies to improve PMTCT interventions: communitybased research and outreach, addressing cultural and structural dynamics, and working with the relevant social groups that impact HIV prevention. These conclusions are based on interviews and participant observation conducted within the rural Mokhotlong district and capital city of Maseru, involving women and men of reproductive age, grandmothers serving as primary caretakers, HIV/AIDS programme staff, and medical professionals. Qualitative analysis focused on rural women’s socio-medical experience with the four measures of PMTCT (educational outreach, voluntary counselling and testing, antiretroviral interventions, and safe infant feeding). Based on these results, we conclude that intervention models must move beyond a myopic biomedical ‘best-practices’ approach to address the social groups and contextual determinants impacting vertical HIV transmission. Given the complexities of effective PMTCT, our results show that it is necessary to consider the biomedical system, women and children, and the community as valuable partners in achieving positive health outcomes. Keywords: cultural beliefs, interventions, maternal and child health services, programme planning, rural health services, social ecology, southern Africa, structural violence, task-shifting, vertical transmission

Introduction At present, comprehensive prevention of mother-to-child transmission of HIV/AIDS (PMTCT) involves a cascading sequence of four interlocking initiatives: 1) increasing knowledge of general HIV prevention, mother-to-child HIV transmission risks, and family planning through HIV/AIDS education initiatives; 2) voluntary counselling and testing (VCT) that targets pregnant women or women considering having children and their partners; 3) antiretroviral (ARV) interventions with HIV-positive women to substantially reduce the risk of HIV transmission during pregnancy, birth and post-birth; and 4) safe infant feeding practices that reduce or eliminate the risk of HIV transmission through breastfeeding. This paper examines these four measures of PMTCT interventions using qualitative research in Lesotho, one of the world’s most heavily HIV-affected countries. This PMTCT cascade is based on a biomedical delivery approach that emphasises the importance of knowledge, HIV testing, drugs, individual decision-making, and risk reduction (Painter, Diaby, Matia, Lin, Sibailly, Kouassi et al., 2004; Pfeiffer, 2004). Anthropological research has a long tradition of criticising this approach in the prevention of adult HIV spread in Africa, arguing for the importance of cultural and contextual understandings for effective programmes (Farmer, 2001 and 2004a; Farmer, Léandre, Mukherjee, Claude, Smith-Fawzi, Koenig et al., 2001; Parker, 2001; Trickett, 2004; Castro & Farmer, 2005). This paper extends this critique to PMTCT, by demonstrating the necessity for a qualitative understanding of the women, infants and

partners at the core of HIV prevention efforts, as well as the communities in which they live and the interactions they have (or do not have) with biomedical, governmental and other bureaucratic entities. Based on a qualitative case study in rural Lesotho, we argue that effective HIV prevention efforts need to involve this larger group of stakeholders — women and children, partners and families, community leaders, and biomedical and governmental institutions — to effectively address the social relationships, cultural dynamics, and inequality and marginalisation that place women and their children at risk for vertical transmission of HIV. To date, very little qualitative research on communitybased intervention models has been PMTCT-specific. PMTCT is a critical strategy for curbing the global impact of HIV, particularly in countries like Lesotho where prevalence is high among young women (Hafkin & Ferris, 2006). However, research on HIV/AIDS interventions in Lesotho has been minimal. Despite an international drive in HIV/AIDS intervention and research towards communitydriven interventions that incorporate local cultural meanings and systems of structural violence into their design, most PMTCT research remains largely quantitative and urbanbased (Parker, 2001; Chitambo, Ehlers & Smith, 2002; Trickett, 2004; Pauwels, 2005). Still, there have been notable contributions made to discussions of PMTCT scale-up and community involvement throughout Africa (i.e. Nyblade & Field-Nguer, 2001; Rutenberg, Kalibala, Baek &

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Rosen, 2003; Baek, Mathambo, Mkhize, Friedman, Apicella & Rutenberg, 2007), the use of local healthcare providers in community-based PMTCT interventions in Cameroon and Kenya (i.e. Colten, 2005; Wanyu, Diom, Mitchell, Tih & Meyer, 2007), and the implications for stigma in PMTCT programming in Zambia and Botswana (i.e. Bond, Chase & Aggleton, 2002; Eide, Myhre, Lindbaek, Sundby, Arimi & Thior, 2006). Our research draws upon these practical experiences and scholarly recommendations, and, based on our case study in Lesotho, proposes a two-pronged strategy for rural PMTCT that uses a community-based approach to both deliver direct healthcare and promote community understanding. Our research shows that both improved care and changed awareness necessitate the participative support of a diverse set of community organisers in the cultural and health settings. Literature review HIV/AIDS is one of the most critical development challenges facing Lesotho, a small mountainous country landlocked by South Africa. The first AIDS case was reported in Lesotho in 1986; since then, adult HIV prevalence has risen to the third-highest in the world (Kimaryo, Okpaku, GithukuShongwe & Feeney, 2004). With 29% of 2.2 million citizens estimated as living with HIV, and less than a quarter knowing they are infected, Lesotho is said to be ‘facing a national meltdown’ (Lesotho Ministry of Health and Social Welfare, Bureau of Statistics & ORC Macro, 2005; WHO, 2005). Basotho women and children are at the heart of the pandemic’s medical, economic, and socio-cultural impact. In Lesotho, young women constitute 75% of all reported HIV/ AIDS cases among people aged 15–29 years, and nearly 10% of new HIV infections in 2001 were in children under age 4 years who had contracted the virus vertically (Kimaryo et al., 2004). An estimated 27 000 Basotho children ages 0–14 were living with HIV in 2002, and only a few hundred have begun receiving life-sustaining antiretroviral treatment (ART) since its in-country arrival in mid-2005. Without effective PMTCT, it is predicted that the rate of childhood HIV infections will escalate at the same rate of infections in young women (Hafkin & Ferris, 2006). In an effort to curb vertical transmission, effective PMTCT interventions necessitate a cascade of both outreach and clinical interventions. First, educational outreach initiatives must reach rural villages to educate women, spouses, family, and community members about the risk of vertical transmission and what this risk means both for the health of child and mother. Second, VCT initiatives should target pregnant women, or those of reproductive age and their partners, in testing for HIV and for counselling on the virus, the risk of vertical transmission, status disclosure, treatment options and adherence to PMTCT interventions (Painter, 2001; Semrau, Kuhn, Vwalika, Kasonde, Sinkala, Kankasa et al., 2005). VCT should also counsel both women and men on reproductive health and family planning according to their statuses (e.g. HIV-positive women on preventing unintended pregnancy, HIV-negative women on staying free from infection, and women’s partners on HIV prevention and treatment) (Israel & Kroeger, 2003).

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VCT during antenatal care — the third measure of PMTCT — is the primary gateway into ARV interventions that reduce mother-to-child transmission (MTCT), Ideally, the course of ART occurs in three phases: (a) controlled ART for the woman during the course of her pregnancy to lower her viral loads; (b) an ARV prophylaxis at delivery, which varies by resource setting, but most commonly includes a one-dose nevirapine therapy, possibly supplemented by controlled pre- and/or post-natal AZT and 3TC; and (c) continued ART for the mother, beginning after six months in an effort to control resistance development (Jourdain, Ngo-GiangHuong, Le Coeur, Bowonwatanuwong, Kantipong, Leechanachai et al., 2004; Flys, Nissley, Claasen, Jones, Shi, Guay et al., 2005; Johnson, Li, Morris, Martinson, Gray, McIntyre & Heneine, 2005; Hafkin & Ferris, 2006; UNAIDS, 2006; Lockman, Shapiro, Smeaton, Wester, Thior, Stevens et al., 2007). Fourth, women must be trained in the safe infant feeding practices that minimise the risk of HIV transmission during breastfeeding. Establishing effective practices that are both mindful of child mortality and the conditions of resource-poor settings has been of significant clinical debate (Coutsoudis, Pillay, Spooner, Kuhn & Coovadia, 1999; WHO, 2007). Breastfeeding doubles the risk of MTCT, but, in turn, the taxing nutritional expenditure of breastfeeding can contribute to mortalities among HIV-infected mothers (Nduati, John, Mbori-Ngacha, Richardson, Overbaugh, Mwatha et al., 2000). As an alternative, formula feeding is an unviable option for most families, as it is relatively costly and not widely available. Contamination is also a great risk to child health. Additionally, these alternative foods fail to provide children with the maternal antibodies and nutrients that are exclusive to breastfeeding. Most paediatric programmes in Lesotho have adopted World Health Organization (WHO) recommendations stating that all women, regardless of HIV status, exclusively breastfeed infants from zero to six months of age and then introduce household foods (WHO, 2007). Cultural meanings and structural violence The paper focuses on rural Basotho women’s experience with respect to healthcare for the individual herself and her children — particularly paediatric- and maternal-focused HIV/AIDS prevention and treatment. We examine the role of cultural meanings and structural violence in vertical transmission of HIV, as well as how larger socio-cultural phenomena impact women’s ability to draw from PMTCT initiatives in rural communities. In general, cultural meanings elucidate what sexual and mothering practices mean to the individuals involved, the social scripting of reproductive activities, and the impact of contexts on these activities (Setel, 1999; Parker, 2001; Fassin, 2007). In this paper we focus on the impact of socio-cultural norms on seeking healthcare, including: the tension between traditional understandings of health and wellness in the company of biomedical health models; behavioural expectations during pregnancy and childrearing; the cultural reference points of motherhood and childbearing; cultural norms of home birthing; and a woman’s social role in the family. Structural violence exists when the processes and policies of economic, social, and political systems heighten

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the vulnerability of persons or groups to the HIV/AIDS pandemic. Rather than looking to biological, individual, and cultural causes (for example, the virus, lack of healthseeking, and little understanding of disease transmission), structural violence focuses on the social causes that condemn certain people to suffering, disease and death. Structural violence takes form in the interactions between systems of gender power, economic exploitation, racism, social exclusion, and sexual oppression. In turn, these systems shape the policies and processes that make persons or groups more vulnerable to HIV infection and/or complicate their ability to obtain healthcare; these policies and practices (be it in healthcare, economic development, human rights and protection, labour, education or housing) must be targeted for reform if there is hope of lessening these vulnerabilities to HIV and AIDS (Parker, 2001; Farmer, 2004b and 2004c). In Lesotho, structural violence complicates a women’s capacity to obtain healthcare by policies and processes that include: women’s legal status as minors, as enshrined in Lesotho’s customary/common laws (which affect women’s access to credit and ability to own property); the gender dominance that permits male authority over women in health and child-care-related decisions; and the lack of economic opportunity in rural Lesotho, which keeps many women and their families in grinding poverty (Raditapole, 1995; Kimaryo et al., 2004; Rapolaki, 2004). Methods Ethnographic research was conducted in Lesotho from May to August 2006, in two primary settings: the rural Mokhotlong district and the capital city Maseru. Mokhotlong is a mountainous administrative district in northeastern Lesotho; its population of 100 000 is scattered in small, isolated villages. The research stemmed from the network of the Touching Tiny Lives (TTL) paediatric HIV/AIDS programme, a Basotho-run NGO located in Mokhotlong City. Founded in 2004, TTL operates a safehome for paediatric nutritional stabilisation as well as the district’s first PMTCT outreach programme, which was being developed during the research period and has been operating since August 2006. Observation and interviews were conducted with TTL management and outreach and caregiver staff, as well as with nine families during outreach visits and at the Mokhotlong district hospital. Research in Maseru, the hub of HIV/AIDS-related NGO work in Lesotho, examined the national medical infrastructure and existing paediatric and maternal healthcare interventions available in the city and in lowland rural regions. Observation and interviews were conducted with medical professionals and staff within the Lesotho Children’s Centre of Excellence (LCCE) and with the Catholic Relief Services’ (CRS) national HIV/ AIDS office during two visits to its field sites in the Roma and Butha-Buthe districts. The University of Notre Dame Institutional Review Board (Indiana, USA) approved this research; in Mokhotlong, we worked closely with TTL to ensure that our research did not impose a burden on the people included in our study. We obtained informed consent from all interviewees.

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We used targeted sampling (see Strauss & Corbin, 1998; Bernard, 2006) to gather data from 29 individuals representing five specific groups: HIV/AIDS programme staff (9; 31%), women of reproductive age (8; 28%), medical professionals (7; 24%); men of reproductive age (3; 10%); and women serving as primary caretakers for their grandchildren (2; 7%). Women constituted 78% of the programme staff and 86% of the medical professionals. While most participants (22; 76%) were Basotho, seven were expatriates. Twenty-six participants (90%) were living or working in rural communities, and while the other three were located in Maseru, they were medical professionals primarily serving rural populations. The TTL managing director, a Mosotho woman, was interviewed on multiple occasions, and extensive communication (paying particular attention to TTL’s PMTCT programme development) has continued by phone and e-mail since the research period in Lesotho. We tailored our semi-structured interviews (see Spradley, 1979; Briggs, 1986; Bernard, 2006) to two different groups: individuals involved in HIV/AIDS programming (medical professionals, outreach and programme staff) and community members in a Basotho village setting (women of reproductive age, men, and elder caretakers). Interviews with HIV/AIDS programming staff centred on what HIV-related interventions were available in rural Mokhotlong — particularly those targeting women and children; what cultural and logistical obstacles these programmes have encountered; and how staff have incorporated these obstacles in project design and implementation. Our villagebased interviews explored: the availability of healthcare and HIV/AIDS interventions; gender power and familial dynamics, particularly in kinship structures; traditional understandings of health and their implications for HIV/AIDS treatment in a rural environment; and cultural meanings in pregnancy, childrearing and sexuality. The interviews were conducted with the assistance of an English-Sesotho translator, recorded in full, and transcribed during the research period. Data analysis Notes during participant observation and interviews were recorded freehand and then reviewed at the end of each day through fieldnote write-up, which included memos on follow-up questions and emerging analytical themes. After completing the data collection we coded all notes and transcripts according to frequently reported themes relating to HIV/AIDS knowledge, community-based healthcare, cultural settings, village health services and PMTCT programming (see Strauss & Corbin, 1998; Charmaz, 2000). These thematic units included the exemplary quotes from interview transcripts and fieldnote passages that expressed analogous ideas. In our effort to visualise a more contextually appropriate model for community PMTCT intervention, we aimed to connect these findings to larger cultural meanings and structural violence, not individual behaviour patterns. This analytical process identified the socio-cultural implications (e.g. behavioural and familial expectations, perceptions of childbearing) and logistical concerns (e.g. socio-economic constraints, topography)

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that would be necessary for consideration when designing and implementing PMTCT programming in Lesotho’s rural communities (Strauss & Corbin, 1998; Bernard, 2006). Final themes of analysis and recommended implementation models were confirmed through consultation with the TTL managing director and extensive co-author discussion. Finally, we should note several limitations to this study: as a qualitative case study based on a small sample in a small country, there are some inherent difficulties in trying to generalise to other areas of sub-Saharan Africa. The initial impetus of the study was to focus more on women and children, and did not include the same emphasis on the spouses and partners of Basotho women. In part, this is a reflection of Lesotho’s economy, where men often migrate for the sake of work and often do not form a part of the day-to-day lives of women and children. Other areas of sub-Saharan Africa have different levels of government involvement, healthcare systems and gender relations with regard to HIV and AIDS; these factors should be taken into account when interpreting the results, even if we are confident that a larger stakeholder approach at the local level which addresses structural and socio-cultural disparities can improve PMTCT in other countries. Results ‘Every child is a reflection of the family’ is an old Sesotho saying — now it’s about AIDS. — Mosotho woman The results move through the four aspects of comprehensive PMTCT: educational outreach, VCT initiatives, ARV interventions, and safe infant feeding practices. For each, the ethnographic results point to structural violence and socio-cultural practices as key complications to the seemingly straightforward prescription of how to best prevent mother-to-child transmission of HIV. Understanding PMTCT The women in rural Mokhotlong had little knowledge of MTCT, and none of the women interviewed were able to explain PMTCT. In Mokhotlong City, few respondents (regardless of age or sex) were familiar with MTCT or HIV prevention measures; those that were, either worked in a medical profession or with HIV/AIDS programmes. Three primary factors explain this result. First, in Lesotho HIV/ AIDS educational outreach has concentrated on prevention of sexual transmission of HIV; PMTCT is considered a more complex prevention intervention and has yet to be widely emphasised. Second, few educational initiatives have reached rural communities, as the expenditure in time and energy for travelling is considered too costly. One Mosotho HIV/AIDS programme manager spoke of the unforgiving mountainous topography and poor transportation infrastructure as hindrances: ‘I think that [education] depends from village to village, because some villages that are really very far from town, they don’t get the any education. So there are villages where people still don’t believe HIV/AIDS exists. They name different illnesses that they know — No, this is not HIV/AIDS, this is gonorrhoea, this is mere witchcraft. There are a few places like that, but there are still others that really know…. This depends on where the village is situated,

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how far away from town. Outreach people don’t want to walk to those places, so if you can’t drive to them, sorry!’ Third, the HIV/AIDS education initiatives that have managed to reach villages have largely emphasised biomedical, Western-minded concepts of sickness, disease and HIV prevention. These messages generally conflict with traditional Basotho explanatory models of health and wellness, which often rely on witchcraft and the supernatural. These local explanatory models can intentionally reject or cast a great deal of suspicion on foreign understandings of health and wellness — a dynamic often attributed to Lesotho’s colonial history. In recent years, Lesotho’s HIV/AIDS programming has generally failed to incorporate cultural meanings into prevention and care messages, which has deepened misunderstanding of the biomedical approach to HIV prevention. In one village, a young family offered a local example: their traditional healer had effectively rallied the community against foreign doctors and HIV/AIDS initiatives, declaring that doctors were not to be trusted because they used the abbreviation ‘AIDS’ to describe the disease, instead of translating it into something that the Basotho could understand. Voluntary counselling and testing (VCT) The same logistical issues preventing widespread educational initiatives have largely constrained HIV testing and counselling to Mokhotlong City’s district hospital. Rural clinics do not have the staff or testing kits to make VCT available with regularity. Rural facilities have tried to compensate by organising special HIV-testing days, which frequently fall through when staff members or supplies don’t arrive at the clinic. It is a challenge for women to make trips to the rural clinics — trips which require a significant expenditure of time, energy and money — particularly when scheduled testing opportunities are known for flopping. Moreover, the fear of being recognised at these more public HIV-testing sessions prevents many from seeking testing. Acknowledging the obstacles associated with VCT access and HIV stigma, Lesotho announced a national door-todoor testing campaign in 2006. However, given financial and manpower constraints in the national health ministry, it may not be surprising that the initiative has yet to be widely implemented. Perceptions about HIV/AIDS treatment options, cultural taboos surrounding pregnancy, and status disclosure further compromise VCT initiatives in rural Mokhotlong. First, since HIV/AIDS treatment and education options have not reached rural communities, HIV and AIDS is largely still perceived as a ‘death sentence’ instead of a chronic disease. Fear of death often compromises any desire to know one’s HIV status, particularly among women who worry about someone else eventually caring for their child. One Mosotho nurse who was attempting to establish a PMTCT programme in the lowlands explained: ‘They didn’t want to be tested because they would say — I can’t get any medicine anyway, so I will die. I don’t want to die and my baby to live; no one would care for him. So it’s best for us to die together if I give him the virus. So they would rather not know they were positive and infect their baby, because then at least they would die together, she wouldn’t be deserting her child.’

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Second, cultural taboos against the public acknowledgement of one’s pregnancy prevent many women from seeking out prenatal care in Mokhotlong’s medical facilities, visits during which VCT could be made available to them. Socio-cultural norms in rural Lesotho dictate that women do not speak of their pregnancy outside of their home; thus, if women do not respect pregnancy as ‘a family secret,’ they are at risk of bewitchment from community members. As women are concerned with concealing their pregnancy, they may not seek the regular (and early) prenatal care necessary for an effective PMTCT intervention — as they must be tested and counselled on vertical transmission before ARV interventions can be administered. Home-based care, an alternative initiated by some Mokhotlong clinics, quickly became stigmatised when selective home visits enabled community members to learn who was receiving prenatal care, thus revealing the pregnancy. Third, status disclosure also complicates HIV-testing initiatives, particularly in Lesotho’s patrilocal society. The exchange of a bride price, lobala, grants a man and his family ownership of his wife and their children. Several women and nurses reported that disclosure of HIV status to a woman’s husband and his parents is the primary obstacle to women accepting VCT initiatives: ‘The main reason is that they will have to tell their husband, and always the case is that — You brought it…. The men always blame the woman for bringing — Oh, you brought it, now it’s in the family.’ One primary healthcare nurse working on PMTCT initiatives in the lowlands reported that she has changed her approach to VCT to address these concerns, encouraging women to disclose when they feel ready (even if it is after the birth of a child, after at-birth PMTCT interventions had been completed), and she even offered to serve as a mediator in the family. However, all the women we interviewed were hesitant to accept VCT even with these considerations, fearing repercussions if the woman’s husband and family learned that she had not disclosed immediately. Antiretroviral interventions Lesotho’s government has made ARVs free within the country, which would be expected to facilitate wider access to PMTCT ARV interventions. However, ART has not been made widely available outside the large medical facilities; take-home nevirapine kits are only in the development stages in Lesotho. In Mokhotlong district, the only ARVs available are distributed from the district hospital. The biomedical-centred distribution model has posed two major problems. First, fear and suspicion of the medical system in Mokhotlong prevents many women from seeking a nevirapine intervention for herself and her child at the time of birth, or for her to obtain a prolonged ART course. Several respondents reported that the hospital in Mokhotlong is ‘the place where you go to die,’ because they knew of few people who had accessed hospital services other than those who entered the hospital very ill and usually died there. One young mother spoke of rumours circulating among women who are afraid to enter the hospital, and possibly leave their child orphaned, when they can instead stay with their child until they both die: ‘Many women are scared to go to

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hospital and clinic, so they won’t. Some people that are not going there say that — No, you can just go there, you will die, and the children remain alone living; so what’s the use of going there, you can just die along with your child.’ The suspicion of hospital-delivered medical services appears to be now associated with the ARV prophylaxis itself. A mother explained the belief that the treatment itself could cause illness: ‘Women think of [ART] during pregnancy in a bad way. People say that those medicines, they are the ones that make them sick, they can just have a child without them.’ In order for women to become comfortable with ART, a female staff member from the Mokhotlong hospital asserted that ART ‘has to start as a routine now...like any test that’s done for pregnancy.’ However, initiatives standardising prophylaxis interventions will need to confront the fears women and families might already hold for medical facilities and the treatments provided there, especially if those treatments are not thoroughly explained in ways local people can understand. Second, ARV interventions have reached few women in Lesotho because facility-centred interventions conflict with the Basotho norms of home birthing. While some rural clinics in Lesotho (though none in Mokhotlong) have recognised this conflict and have begun training traditional birth attendants and community health workers in delivery interventions, minimal and untimely access to ARV prophylaxis and clean birthing equipment has not closed the disparity between hospital and village deliveries. The Mokhotlong hospital, like many facilities in the country, has built temporary residences within its compound, hoping to encourage women to live at the hospital within two weeks of their expected due date rather than have a traditional home birth. Hospitals view these residences as a better way for staff to deliver comprehensive VCT and ART, as currently Basotho women generally arrive at health facilities late in the course of labour, making the procurement of necessary HIV testing, counselling and drugs difficult. However, leaving the home for two weeks is not always a viable option for most women in Lesotho, who are expected to care for children, work in the fields, and maintain the home back in their village — especially as many men migrate for work. These resident health facilities serve as a prime example of a delivery framework that, while making headway in addressing some of the logistical considerations (particularly the time needed) for PMTCT interventions, is still irrelevant or conflicting with the contextual experiences of rural Basotho women. Safe infant feeding While the clinical deliberations on best practices in safe infant feeding continue, qualitative assessments reveal an additional set of socio-cultural factors that impact the feasibility of HIV-prevention-minded feeding. Basotho cultural norms maintain that men dictate the length of their child’s feeding period, normally considered to be two years; women must obtain permission from their husbands in order to formula feed. If women wish to breastfeed for six months and then begin their child on household foods, as recommended by WHO guidelines, their husbands and

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in-laws are bound to question them, as a young woman explained: ‘You can’t breastfeed for six months and then stop. Because he knows you have to breastfeed the child for two years. And the mother-in-law as well, they know you have to breastfeed for two years. So now you’re telling us this story, you’re breastfeeding for six months? What’s happening?’ Not only is infant formula feeding associated with a woman’s positive HIV status (thereby necessitating a difficult disclosure to her husband and family), but it also counters a culturally normative gender and power relationship.

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Discussion This paper identifies a series of inequities that serve as significant impediments to programmes that aim to reach rural Basotho women with comprehensive PMTCT interventions. Like many high prevalence areas throughout the world, entrenched structural and socio-cultural disparities facilitate the HIV pandemic’s spread in Lesotho — including severe poverty and little economic opportunity; poor medical infrastructure compounded by minimal access to health services in rural regions; gender inequalities and women’s social disenfranchisement; and cultural restrictions provoked by stigma and sexuality taboos. Generating effective PMTCT services requires that we move beyond the ‘what we can do’ assumption implicit in the four basic steps of PMTCT — we educate, we test, we give drugs, and we teach the best way to breastfeed. These assumptions simply reinforce a culturally myopic and logistically deficient approach to PMTCT in countries like Lesotho, whose histories and economies do not match those countries where biomedicine emerged as such a potent medical and social force. To overcome narrow biomedical assumptions, anthropological contributions to HIV/AIDS interventions generally emphasise two contrasting approaches to achieve change: 1) a focus on individuals’ behaviour and motivation in a culturally informed way (Green, 2003), and 2) a focus on empowering communities to deal with inequality, violence and poverty (Farmer, 2004b and 2004c). However, in our results, it became clear that neither approach captures the complexities of mother-to-child HIV transmission. At the most basic level, a woman and her child represents neither an individual nor a whole community. For example, a woman who says she prefers not to know her HIV status, and thus prefers to die with her child, embodies a dynamic that cannot be reduced either to individual meanings or structural problems. This conclusion is similar to work that has addressed the complexities of horizontal (adult–adult) HIV transmission in Africa (see Setel, 1999; Fassin, 2007). To complement biomedicine’s four interlocking interventions, we propose a focus on three interrelated social groups, all of which impact the effectiveness of PMTCT interventions. They are: 1) medical, health, and governmental programmes that provide PMTCT or HIV/AIDS interventions at the community or facility level; 2) the mother and child; and 3) the community, with a particular focus on a woman’s treatment management group, or the individuals (e.g. spouse, parents, in-laws, community health leaders) who influence her decisions to obtain healthcare.

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This relational model bears similarities to ecological models used to understand breastfeeding (McDade & Worthman, 1998), to develop HIV prevention programmes in the United States (Latkin & Knowlton, 2005), and to develop malaria prevention in Gambia (Panter-Brick, Clarke, Lomas, Pinder & Lindsay, 2006). Our proposed two-pronged model would aim to deliver (a) community education and sensitisation and (b) PMTCT and healthcare services delivery at the community level — with these three social groups driving intervention design and implementation. The first prong of the proposed model emphasises community-based awareness efforts that promote an ethos of considering women, children and spouses together. The Lesotho government and local health facilities have recognised the nation’s severe HIV epidemic and are scaling up efforts to respond. These national efforts, if they are to be comprehensive, must emphasise contextualised PMTCT initiatives (Painter et al., 2004; Perez, Orne-Gliemann, Mukotekwa, Miller, Glenshaw, Mahomva & Dabis, 2004). The heavy biomedical or clinical focus in rural PMTCT can, in a sense, act as a ‘cultural subterfuge,’ if health messages are considered alien, hostile or even threatening to a community’s interests, culture or domain (Okpaku, 2004). In order to create PMTCT interventions that are both culturally appropriate and compelling in Lesotho, the publichealth impetus behind the clinical intervention or social education message must be isolated from the biomedical design and reframed in terms of the cultural mechanisms and healthcare traditions used in Basotho culture, particularly in communication structures that promote an ethos of women and children (UNAIDS/Penn State, 1999; Ford, Odallo & Chorlton, 2003; Okpaku, 2004). To accomplish this, interventions need to move beyond the programme (i.e. the four interlocking components of PMTCT) to consider how the work will mesh with women and children in the context of their community. As work elsewhere in subSaharan Africa has shown, participatory and communitybased approaches that employ qualitative research offer an excellent way to accomplish such an audience-focused programme, provided this sort of work is used to guide programme development from the outset (Chopra, Piwoz, Sengwana, Schaay, Dunnett & Saders, 2002; Campbell, 2003; Gregson, Terceira, Mushati, Nyamukapa & Campbell, 2004; Pfeiffer, 2004; Campbell, Foulis, Maimane & Sibiya, 2005). Developing the programmatic (or supply) side will prove inadequate unless coupled with measures to create demand (Kimaryo et al., 2004). At a programmatic level, interventions point to culturally informed and locally reinforced behaviour change, such as the ABC model (‘abstain, be faithful, and use condoms’) (Green, 2003) or the information-motivation-behavioural skills model (Cornman, Schmiege, Bryan, Benziger & Fisher, 2007). However, these hone quite close to the ‘what we can do’ biomedical model, and are not aimed at creating demand or addressing issues specific to women and children. On a theoretical level, recent literature highlights the utility of an embodied approach to understanding sexuality, reproduction, and personal history with respect to HIV and AIDS in Africa (Setel, 1999; Fassin, 2007). On the intervention side, a series of methods such

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as motivational interviewing and improved doctor-patient relations can be adapted to address the embodied issues inherent in women’s reproductive health (Lende & Lachiondo, in press). For instance, on site, the health and outreach staff at Touching Tiny Lives (TTL) has emphasised personalised interventions that most often take place within a woman’s home as part of their PMTCT programme. Staff evaluate a woman’s social, educational, and economic situation and seek to address any concerns she might have with obtaining healthcare, or matters that might hinder her ability to do so, including the needs of her other children and her HIV status disclosure to her husband or family. In turn, women do not think only of their children and how best to access healthcare. If efforts are not made to partner with rural communities in addressing the socio-cultural and structural factors impacting Basotho women’s willingness or ability to engage in PMTCT (and thereby encourage demand), it will prove very difficult to deliver comprehensive treatment, care and support interventions. Systemic development issues and structural violence foster risk to HIV and AIDS, susceptibility of women and children to HIV infection, and reduced capacity to access health services in rural areas (Farmer, 2001, 2004b and 2004c; Farmer et al., 2001; Chitambo et al., 2002; Kimaryo et al., 2004). Tackling structural issues is a daunting task, to say the least. In the immediacy of the need for HIV prevention and treatment, efforts to create demand for PMTCT can focus not just on women and their babies, but also women’s therapy management groups, spouses, family figures, cultural and political leaders, and local health advocates (e.g. traditional healers, community health workers, rural outreach personnel, birth attendants) (Nichter, 2001; Pauwels, 2005). The second prong of the model involves organising the community-based delivery of prenatal care, PMTCT interventions, and reproductive/sexual healthcare. The Haiti Equity Initiative (HEI) developed by Partners in Health (PIH) exemplifies community-driven models for delivering HIV/AIDS-related care in rural, traditionally disadvantaged areas. The HEI model utilises locally trained, communityrecruited individuals in moderating medical adherence, providing social support, responding to patient and family concerns, and dispensing all HIV-related medications (Farmer et al., 2001; Farmer, 2004a; Behforouz, Farmer & Mukherjee, 2004). By integrating HIV prevention and treatment in community-based care, the model has not only improved local access to local HIV/AIDS interventions, but has been effectively used to disseminate PMTCT services and prenatal care in rural areas (Mukherjee, 2004). In light of our results, we advocate expanding the HEI model beyond a one-point personal liaison (termed an accompagnateur in the HEI model, or a person specified to serve as a liaison between health professionals and community-based clients) to rather target several actors in both direct healthcare provision and community organising around MTCT prevention and treatment. Mokhotlong district’s existing community health worker (CHW) network, a system common throughout rural Africa, can help coordinate both aspects of the two-pronged model, as CHWs already have access to both the medical system and, as culturally trusted individuals selected by each

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village chief, they better understand local social contexts. The CHW network can then involve other relevant local health leaders in service delivery, including: traditional birth attendants, rural caregivers and HIV/AIDS programme staff (exemplified by TTL), traditional healers, rural nursing staff, and other consultants in prenatal care. Further community collaboration must emphasise the participation of community members who have a prominent role in influencing women’s healthcare decisions and shaping community opinion. Targeting men in community awareness and health services delivery programming is also critical. In Mokhotlong’s villages, similar to many other rural African communities, these men and women stakeholders include: (a) traditional healers; (b) political, spiritual and religious ‘opinion leaders,’ particularly village chiefs and locally based government officials; (c) the leaders of male initiation groups; (d) local artists and musicians; (e) family leaders, particularly paternal grandmothers in Lesotho’s patrilineal kinship structures; (f) young, newly resourced men that are returning to rural communities and, in a recent trend in Mokhotlong, have begun taking prominent roles in village development work; and (g) young adults as health advocates (Kimaryo et al., 2004; Katabarwa, Rakers & Richards, 2004; Peters, 2004; Pauwels, 2005). TTL has begun utilising the CHW network for spearheading both awareness and direct health-provision efforts in rural Mokhotlong. CHWs notify the aforementioned opinion and community leaders about local PMTCT education sessions led by TTL outreach staff, hoping that these individuals will encourage women to attend the sessions, during which they can arrange for private HIV testing and counselling. In the future, TTL hopes to be a national testing site for home delivery and ARV prophylaxis kits. CHWs will be responsible for administering these kits, with the assistance of village traditional birth attendants, midwives, and rural nursing staff. Although TTL’s programme development is early in the making, the results of this study indicate that collaboration with these socio-cultural and healthcare leaders has the potential to further rally local opinion in its trust of PMTCT initiatives — particularly as individual leaders who can navigate within meanings of embodiment, motherhood, and culture in local healthcare. Conclusions In summary, this paper has outlined a series of sociocultural, economic, and structural factors impacting rural women’s ability or willingness to engage in a cascading sequence of PMTCT intervention measures. Acknowledging that these factors — including biomedical-dominated interventions, Lesotho’s mountainous topography, women’s disenfranchisement in patrilocal social and communication structures, and cultural taboos surrounding sexuality and childbearing — play critical roles in a woman’s sociomedical experience, this paper argues that a localised, community-driven intervention model will better contextualise PMTCT measures both in rural Lesotho and elsewhere in sub-Saharan Africa. The proposed two-pronged model focuses on programme delivery and on community interaction. For delivery,

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intervention models need to move beyond a ‘best-practices’ approach to also address local socio-cultural dynamics and structural limitations that shape how local people respond to the interventions. These considerations are best supplied by qualitative research and community/participatory engagement in programme development, implementation and review. However, simply ‘adding on’ to the best-practices approach will miss out on a crucial conceptual tool for advancing intervention practice — that is, an ecological model that explicitly addresses the different social groups that impact any particular intervention. Community health workers, spouses, and important local stakeholders form a social ecology around women and children and can significantly alter the course of programming and the prevalence of vertical transmission of HIV in a community, in both positive and negative ways. For the prevention of mother-tochild HIV transmission, our results show that it is crucial to consider the biomedical system, women and children, and the community — as equally important partners in achieving positive health outcomes. Rather than the ‘what we can do’ ethos at the heart of ‘best practices,’ we advocate a much broader sense of ‘we,’ with a primary focus on the women and children at the centre of vertical HIV prevention and transmission. Acknowledgements — We are grateful to the dedicated women and men working for maternal and paediatric healthcare in Lesotho, particularly Nthabeleng Lephoto, Touching Tiny Lives (TTL) Managing Director; TTL outreach staff and bo’mme caregivers; Ken and Colleen Storen, TTL founders; Drs Edith Mohapi and Kathleen Ferrer, and the Lesotho Children’s Centre of Excellence staff; and HIV/AIDS programming staff at Catholic Relief Services Lesotho. We also extend hearty thanks to the wonderful women and families throughout Mokhotlong who participated in this project. We thank the Department of Anthropology and the Institute for Scholarship in the Liberal Arts at the University of Notre Dame for supporting the research, and the Touching Tiny Lives Foundation for their continued professional support. The authors — Megan Towle is a Marshall Scholar studying community-based HIV/AIDS intervention in the United Kingdom. She is interested in maternal/pediatric healthcare and community organising around HIV and AIDS. Daniel H. Lende (PhD) is assistant professor of anthropology at the University of Notre Dame. He is a medical anthropologist with interests in behavioral health and embodiment, and in communitybased research and intervention.

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