ZAM 1999/800: Formative Research on Mother to Child Transmission of HIV/AIDS in Zambia
Author: Bond, G.; Ndubani, P.; Nyblade, L.; International Centre for Research on Women (ICRW)
This research follows a decision that Zambia should be one of 11 countries to pilot the feasibility of an intervention to reduce the transmission of HIV from mother to child. UNICEF, in collaboration with UNAIDS, WHO and others is supporting projects within the Ministry of Health to reduce mother to child transmission of HIV. The intervention has four components: integrating a package of care that includes AZT into antenatal and delivery services; involving the community; counseling on feeding practices; and sensitisation of health service managers, policy makers and the community. UNICEF commissioned this formative research in order that a more responsive MTCT implementation strategy might be designed.
Purpose / Objective
The aim was to assess and document the perspectives of women and their communities about mother to child transmission of HIV, VCT, treatment and breastfeeding options, and to identify community groups involved in support work and decision-making.
The specific objectives of the study were:
- to provide a better understanding of women and community views about MTCT of HIV
- to assess local beliefs and perceptions about drug use during pregnancy and breastfeeding
- to determine potential social, cultural and economic factors that are likely to affect women's participation in the MTCT program
- to identify existing social and community networks relevant to the MTCT implementation
- to recommend strategies that will assist with effective implementation of the MTCT program
The study focused on the area of the planned intervention in an area called Keemba, near Monze town, in the Southern Province of Zambia. Two communities within Keemba were covered by the study - Keemba Centre and Chuungu. Two methods were used in the research - focus group discussions and participatory rapid appraisal. This was supplemented by some unstructured
observational data. Most of the data, however, came from the focus group discussions, and this limited the scope for comparing or triangulating data to strengthen the validity of the findings.
Eleven focus group discussions were held with pregnant women, breastfeeding mothers, men and community leaders. The Participatory Rapid Appraisal (PRA) activities took place only in Chuungu with two groups fo women (with 12 and 16 participants each) and a very small group of men. The participation in the PRA was limited and did not yield much data beyond giving an idea of the daily activities of women and men and some indications of the impact of illness on daily life.
Key Findings and Conclusions
The findings reveal that HIV/AIDS is perceived to be a huge problem in Keemba. The number of women, men and youths who are believed to be sick and "just waiting for the day" was said to be high. The bad condition of AIDS sufferers, the fact that more young people than old people die, the number of burials and the many orphans were given as cumulative evidence of the visibility and the scale of the HIV/AIDS epidemic in Kemba. HIV/AIDS was often refered to in rather veiled terms, for example talking of HIV/AIDS as chiyuni - the disease of the bird. Although this indicates that people in Keemba are not denying the existence of HIV/AIDS, under pining these perceptions is a feeling of hopelessness when faced with such a multi-faceted and devastating disease.
The reasons given for HIV being so prevalent in Keemba included sexual cleansing of a widow after her husband´s death or having sex with a widow; women being forced into sexual exchange because of poverty; inter-generational sex; the sexual freedom of young people; the lack of prevention efforts; prostitution; migrant workers; and unmarried people not using condoms.
Against the background of morbidity arising from AIDS and other diseases, the community faced a number of problems with the health delivery system. They cited prohibitive health fees; shortage of drugs, equipment and supplies; staff shortages; and long distances to the health facilities as the problems affecting the community.
Compliance with folic acid and other medication during pregnancy is reportedly low, despite high ANC attendance. Women do not often deliver at the health care facilities. For pregnant women, the distance to the health facilities coupled with the absence of any reliable transport and the shortages of supplies are added incentives to deliver at home. At both the hospital and the health centre, women wishing to deliver are frequently required to bring their own gloves, cotton wool, baby clothes, syringes and needles, as well as pay for being admitted. The cost of some or all of these items on top of the health fees is extremely prohibitive for most women in Keemba. Most pregnant women therefore deliver at home, assisted by elderly women relatives. There are only three Traditional Birth Attendants in Keemba so most women do not have access to their services.
In relation to how large the actual MTCT problem was in Keemba, all except one group said that they thought almost three-quarters of mothers were HIV positive so the babies born were either all infected or more likely to be malnourished, sickly and not healthy. More and more babies were being born with tukoto - growths on the palate of the mouth or on the anus - a disease associated with malnourishment but which was rapidly becoming associated with HIV.
Participants predicted that the main reaction of a woman to knowing she was HIV-positive during pregnance would be anxiety that the pregnancy and the delivery would be likely to cause abortion or problems in delivery and even cause her death. They also spoke of depression and contemplations of suicide and abortion. The focus was on the health of the mother and not the child. All the groups were concerned more for the women than the unborn child. Becoming pregnant when sick with HIV/AIDS was mostly regarded with understanding and concern although some felt that pregnant woman with HIV/AIDS could be ostracised.
There are several strands to Keemba people´s recognition of HIV infection in themselves or in others. There are certain symptoms that are strongly associated with HIV. The association between a TB diagnosis in Keemba and HIV is accompanied by accusations that health workers lie to patients about their true condition. Many people in Keemba apparently fear that they have HIV based on the community perception that many people in Keemba are HIV positive, the failure of health workers to disclose a patient´s HIV positive status and on their own personal sexual history (for example, people´s experience of sexual partners and spouses dying from HIV/AIDS). This limbo state of "knowing" without really knowing appeared preferable to actually knowing. Being told you are HIV positive can have some tragic consequences. On the other hand, participants speculated, being told you are HIV negative can be a catalyst for change. The private/public dichotomy is clear - HIV status is private because most people would wish to keep it secret yet ultimately one day they will fall sick and it can no longer be hidden.
Keemba people may not have had much exposure to date to VCT services and promotion but, perhaps prompted by the impending MTCT interventions which they have been informed about, they have clearly reflected on the implications of testing. It is clear that it is easier for men to decide to have a test and to disclose their status. Women are more circumscribed in their behaviour and expected to consult their husband or parents about wanting a HIV test, and they are more likely to be blamed. The fear of stigma against those suspected to have HIV/AIDS is deep rooted and widespread. It would be plausible to conclude that this was a community "ripe" for VCT. However, the set of questions about how men and women would react to a HIV positive test result were overwhelmingly negative in tone.
People had a concept of good counselling as that of "being told nicely" and being supported. The important components of VCT were: privacy and individual contact in a room on your own; no public disclosure; and continued support. They also saw counselling as an opportunity for education on prevention and care of PWAs and for obtaining medication. Such demands would put pressure on existing structures and resources. Participants had serious reservations about the confidentiality of resident health workers.
In Keemba, breast feeding ranges between six months to three years but normally last for one year six months. There are perceived benefits of breastfeeding and some of them indicated by the participants were that the babies grew better when breastfed. The period of breastfeeding was seen as a birth control by some of the participants. Some women were said to breastfeed for as long as three years as this was believed to be vital for child spacing. The women in Keemba see breastfeeding as part of the beauty of being a woman and the pride of childbirth. They see childbirth and subsequent breastfeeding as cementing marital relationships. Child bearing and breastfeeding also mean a lot to the family members. Some women use breastfeeding for abstinence from sex.
Alternative feeds are introduced early as a normal supplement to child nourishment. But there are situations such as maternal death where alternative feeds are introduced as a matter of necessity. A number of alternative liquid and solid foods are given to babies to supplement breast milk. The participants noted that formula was too expensive. It requires several tins of milk to enable a constant supply until the baby is big enough to rely on other foods. The community scorns women who do not breastfeed, seeing her as abnormal and accusing her of prostitution. The main concern is often the health of the innocent baby who might die of hunger.
Facilitating a successful MTCT intervention--
The findings seem to point to the reality that implementing an effective MTCT HIV prevention intervention on its own, separate from overall HIV prevention, care and support efforts, may be unrealistic. The difficulties of making it to the first step (such as testing) are all related to the environment that women live in (the fear of repercussions, the lack of proper care and support, stigma). To have a successful MTCT prevention intervention program, many other aspects of HIV prevention, care and support, stigma within the community need to be worked on simultaneously.
Limited capacity and the need to enhance knowledge and capacity to regain control-
At present, in Keemba, the capacity to cope with HIV/AIDS is limited. Faced with poverty, a number of other problems and an epidemic that the Keemba community acknowledges is 'closing homes', people feel that the epidemic is beyond their control. There are currently no existing local organisations or structures that are giving consistent support to enable them to shake off the feeling of hopelessness. This is a community that needs appropriate outside organisations to help them cope - for example, the introduction of a peer education for young people. The existing local structures may be useful in the MTCT programme.
Addressing the inadequacy of existing health facilities--
The inadequacies of the health facilities are highlighted by: breached confidentiality; the limited capacity of health workers in managing both HIV/AIDS and deliveries; shortages of supplies (including needles and syringes, condoms and family planning tablets) and barriers that pregnant women face in accessing health services. Health workers are seen as concealing information relating to HIV status of people, a situation that partly perpetuates stigma and secrecy surrounding HIV/AIDS. Health workers involved in MTCT need re-orientation in order to handle these issues more effectively. With the recent introduction of VCT services, and the involvement of the resident midwife in the post-test club, indications are that perhaps the MTCT training package has had a positive impact.
Recognition of household involvement in health decisions--
Both the treatment seeking patterns in response to serious illnesses, health prevention, maternal health and discussions on VCT are characterised by the involvement of household members and the family. A programme such as the MTCT will need to go beyond merely addressing pregnant women and perhaps their spouses to embrace the extended families of the intended beneficiaries of the interventions.
The concerns raised about HIV and pregnancy focus on the health of the woman--
This poses an interesting issue, since the most direct benefit of the program is really for the infant. This is about how to balance women's health (emotional as well as physical) and reducing risk of HIV transmission to the baby. This does have implications for how the communication messages will be framed. While there is no direct benefit to the mother's HIV-related health outcome, it could be argued that there is indirect benefit to her health by having a healthy (as opposed to sick) baby to look after---or that somehow knowing HIV status and doing something to protect the baby will reduce worry and therefore improve health.
Application of knowledge and exchange of knowledge--
The contrast between knowing how to prevent HIV versus the actual difficulties of applying that knowledge to real life is equally applicable to the MTCT prevention programme. Condoms are unpopular yet key to MTCT. The programme needs to acknowledge problems with condom use and be realistic about when they can be used and by whom. Condoms need more positive promotion.
Breastfeeding is widely practised and cherished, and a decision to not breastfeed must be an explicit and strong. A woman who did not breastfeed would usually be labelled a prostitute. Supplements are introduced early. To challenge this practice might be easier than to suggest that women do not breastfeed, especially since the cost of alternative feeding is beyond the reach of most households in Keemba.
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