Our sample was similar to the population of Uganda except for religion. Since religion was not independently associated with antenatal HIV testing, we believe our findings can still be generalized to other parts of Uganda. Recall bias could have occurred, but is likely to have been minimal since most of the events women were asked to recall were one-time occurrences during the past one-year. The measurement of fear of HIV testing may have been subjective as reflected by the wide variation between the reports of the women and the health workers. Since our study was cross sectional, it was impossible to infer causality. Furthermore, variables such as perceptions on HIV may change over time and therefore perceptions held by the women at the time of the survey may have been different from their perceptions during pregnancy. Notwithstanding these limitations, we believe that our study has important findings for strengthening PMTCT implementation in Uganda.
Whilst most pregnant women (97%) attended antenatal clinic in government or private institutions, only 4% completed all the steps of the PMTCT programme. Previous studies have reported antenatal VCT acceptance rates of between 33% to 95% in low income countries, indicating that the antenatal VCT acceptance in our study was very low. It was however similar to that reported in a national survey conducted by the Uganda AIDS Commission (13%) for 2003 but much lower than reported by Nakiwogga (38%) in Luwero District, Uganda in 2005. Our interpretation is that the higher antenatal VCT acceptance rate in Nakiwogga's study was due to the longer period of implementation of the programme and increased antenatal VCT acceptance can be expected over time.
Our study strongly suggests that health system gaps were the major barriers to PMTCT implementation. The most frequent reason for not testing for HIV was unavailability of VCT services. Due to the lack of services, the communities were not aware of the PMTCT programme and therefore did not encourage women to test for HIV. While the Ministry of Health is responsible for implementing the policy in the regional (e.g. Mbale Hospital) and district hospitals, each district is responsible for implementing the policy in the health sub-districts, which include health centres and rural clinics. Local governments at the district level are supposed to provide leadership and oversight to community HIV/AIDS activities. New institutional structures such as the District AIDS Task Force (DAT) and the District HIV/AIDS Committee have been formed to enhance coordination of the multi-sectoral approach and resource mobilization. However, at the time of the survey these structures were not functional due to human and financial resource constraints. Thus uptake of PMTCT, and in particular HIV testing, was greatly hampered by non-functioning HIV prevention structures in the districts. As has been demonstrated elsewhere, it is important to involve districts and communities in order to achieve wider PMTCT coverage[3, 13, 14].
The second most frequent reason for not testing for HIV was lack of counselling even when VCT services were available in the health facility. Consistent with other studies, the reasons for infrequent counselling in our study were unavailability and poor motivation of trained staff; unavailability of materials; and lack of confidentiality [15–21]. Counselling is key to the success of the PMTCT programme and the number and working conditions of counsellors in hospitals and health centres need further improvement. As has been shown elsewhere, counselling in hospitals and health centres can also be augmented by use of professional lay counsellors[13, 14]. Furthermore, peer counsellors, including people living with HIV/AIDS, could be used to initiate counselling on HIV and to provide on-going support for women in the community[22, 23]. Continuous supervision of the counselling is essential so as to maintain the necessary high quality[16, 18, 19, 21]. Structural modifications in the clinic can improve on confidentiality and efforts should be made to ensure regular supply of materials, especially of the HIV testing kits.
In our study, we reported on the fears that women have regarding HIV testing including the fear of gossip, fear of worrying to death, and fear of beatings from husbands. Women perceive HIV testing as being synonymous with HIV/AIDS or having engaged in behaviours that could lead to HIV infection, conditions that are both stigmatised. We believe that the fears women have regarding HIV testing are a reflection of the stigma of HIV/AIDS. Stigma is described as "an attribute that is significantly discrediting" and as "an attribute used to set the affected person or groups apart from the normalized social order, and this separation implies a devaluation". The discrediting nature of HIV/AIDS is reflected in the local names for AIDS such as mpaawo atali kaaba which means that "everybody will mourn". In HIV/AIDS, stigma may be linked to the fact that AIDS is a fatal and painful illness that ends in a miserable and undignified death[27, 28], or to behaviours such as sexual promiscuity believed to lead to HIV/AIDS. In addition, the stigma related to HIV/AIDS is often superimposed on pre-existing stigmas of affected people. Bharat et al have identified three different types of HIV/AIDS stigma namely:
▪Self-stigma that manifests as self-blame and self-deprecation.
▪Perceived stigma that manifests in the fears that people have if they are HIV-positive and choose to disclose their HIV status to others.
▪Enacted stigma that occurs when people are actually discriminated against because they have, or are thought to have HIV.
Our study suggests that women in Mbale District have the perceived stigma of HIV/AIDS as described by Bharat et al. The perceived stigma of HIV/AIDS is informed by enacted stigma in the society usually in the form of gossip, blame, avoidance of physical contact, discrimination, neglect and rejection. Furthermore, our study suggests that women are in a state of denial regarding their HIV status. Denial is the primary coping mechanism, and allows the women to remain in a state of ambiguity with regard to their HIV status. Thus denial allows the women to maintain their status in society and "access to the humanizing benefit of free and unfettered social intercourse". Although our findings suggest that stigma was not a major barrier to PMTCT implementation in Mbale District, we hypothesise that as improvements are made in the delivery of antenatal VCT services, the personal barriers to PMTCT implementation including stigma will assume greater prominence. PMTCT services and antenatal VCT in particular, need to be integrated within preventive, educational, care and support initiatives for HIV through involvement of communities so as to address the fears and misconceptions that fuel stigma and discrimination[1, 27].
Women felt a need to consult within their social environment before testing for HIV because of the social consequences of HIV testing[8, 15, 16, 20]. Women were more likely to confide in other women rather than in their husbands. In a patriarchal society like that of Uganda, women are more likely to seek support and understanding from fellow women rather than from their husbands. However, women who said that their husbands were their primary confidants were more likely to test for HIV. In support of this, Bajunirwe et al reported that the perception that the husband would approve of his wife's decision to test for HIV was the strongest predictor of whether the wife had the intention of testing or not. As other studies have shown, it is important to involve key people around the women and particularly the husbands in PMTCT so as to obtain their support for antenatal HIV testing[27, 32].
Women do not see the reason to test for HIV if there are no tangible benefits for themselves and their infants. The women argue that it is not enough to protect the infant from HIV; women want to survive to raise their infants. Although these concerns are high on the priority list of the "3 by 5" initiative, these rural women may not benefit unless the PMTCT programme reaches them and those who test HIV positive are monitored and started on antiretroviral drugs as soon as they qualify. The provision of infant formula has not been successful in the past because of the problems of affordability, feasibility, accessibility, and sustainability. Greater effort is needed in developing interventions that promote exclusive breastfeeding and which decrease the risk of HIV transmission. It is important to do this in the whole community rather than in HIV positive women only so that exclusive breastfeeding is not perceived as an HIV preventive measure but rather as an intervention for the general promotion of child health. Equally important is the establishment of follow-up programmes for HIV positive women and their infants for delivery of psychosocial support, prophylaxis for opportunistic infections, micronutrients and family planning services.
HIV testing was significantly lower in multipara women because they had a lower perceived risk of HIV. Multipara women have spent a longer period in their relationship and therefore feel secure and see no reason to test for HIV. Conversely, multipara women have greater investment in the marital relationship and would stand to lose more if their partners abandoned them if they tested for HIV. Although the two reasons could co-exist, the fear of negative consequences is more plausible because of the low social position of women in rural Uganda.
HIV testing was significantly lower in rural women because they had poor access to antenatal VCT services, which were available only in Mbale Town. Our findings contrast with those of Bajunirwe et al who found no differences between rural and urban women with regard to readiness to accept HIV testing in Mbarara District. The difference in the studies may be due to the fact that the rural clinics in Mbarara District were already implementing PMTCT whereas those in Mbale District were not. Rural and multipara women constitute a high-risk group for not testing for HIV and would benefit greatly from a rollout of the PMTCT programme into the rural clinics and from increased peer counselling in the community.