Author: Chase, E.; Aggleton, P. ; PANOS London
In mid-2001, the Panos Institute Global AIDS Programme and UNICEF initiated a pilot project to explore the complexities of stigma in greater depth. The long-term aims of this work are to promote greater understanding among policymakers and non-governmental organizations (NGOs) of the causes, expressions and impact of such stigma and what action might be taken to reduce it.
Purpose / Objective
The specific aims of the pilot project were to:
- Assess and provide an initial analysis of the extent of perceived and enacted stigma among health providers for HIV/AIDS, those receiving care and decision makers.
- Consider stigma in general and, more specifically, that surrounding mother-to-child transmission.
- Inform a wider information programme about such stigma and the steps that can be taken to alleviate it.
The research was conducted in four countries in different geographical regions: India (South Asia), Ukraine (Eastern Europe), Burkina Faso (Francophone West Africa) and Zambia (Anglophone Southern Africa). The sites were chosen to ensure a global perspective, to examine settings at different stages in the epidemic with varying degrees of available interventions and to include a mix of urban, semi-urban and rural settings.
The research was almost exclusively qualitative, with evidence being gathered through focus group discussions and key informant interviews. Additional information was provided by local researchers on socio-demographic characteristics and, where possible, rates of HIV infection within the given area. Within each study site, three focus group discussions (FGDs) were conducted, one with service providers from health care settings and two with service users (one male, one female). A number of key informant interviews were also carried out.
Key Findings and Conclusions
In all research sites, examples of stigma were numerous. Whilst there were many similarities in its causes and manifestations, there were also clear contextual differences. Women throughout the research were subjected to stigma as women, as HIV-positive women and as HIV-positive women who are pregnant and/or have children. Stigma was reported everywhere to be more extensively directed against women than against men. Stigma surrounding mother-to-child transmission (MTCT) prevents women coming forward for testing, reduces their choices in terms of health care and family life once they are known to be HIV-positive, and negatively impacts on their quality of life.
In all of the research sites, there was evidence that stigma attributed to being HIV-positive in pregnancy further compounds the powerful stigmatisation already experienced by women who are known or thought to be HIV-positive and the stigma that women suffer in general. Furthermore, stigma is clearly more accentuated if women belong or are deemed to belong to marginalised groups such as sex workers or injecting drug users.
Indeed, it could be argued that the terminology alone - "mother-to-child transmission" - to some extent invites stigmatisation, since it implies that the woman is solely to blame for the infection of the child. An alternative terminology, "parent-to-child transmission" (PTCT), is used with increasing frequency, thus shifting the emphasis away from women, and encouraging fuller exploration of the role of fathers and partners in managing the HIV-positive status and its impact on the child and the mother (SEA-AIDS 2001). Furthermore, this shift in emphasis permits a broader inclusion of men in the range of prevention, diagnosis, treatment and support services. There is now increasing evidence that adopting the term PTCT more systematically can positively reduce stigma surrounding transmission of HIV to infants (SAfAIDS 2001).
The research highlighted the importance of MTCT prevention programmes being integral to broad-based preventive, education, care and support programmes and that there should be more direct focus on the mothers and fathers of potentially-infected infants. The limited resources within communities to cope with HIV/AIDS and the current inadequacies of many health care systems to provide care and support must be taken into account. Also illustrated were how the rights and choices of HIV-positive women are repeatedly ignored or denied, that the policy framework to support their rights is weak and that their needs are almost always secondary to those of others in the community.
The availability of data, knowledge and awareness of vertical transmission from mother-to-child was different in all research sites. In Zambia, an estimated 30-49% of infants born to women infected with HIV become infected, constituting around 21,000 infant infections each year (Bond et al 2000). In Mumbai, India, the seropositivity rate among women attending antenatal care is estimated to be between 2.5% to 3.75% (NACO 2001). In Ukraine, between 1997 and June 2001, 2,605 children were officially registered as HIV-positive (CAP 2001). Data was not available on the extent of MTCT in Koudougou, Burkina Faso.
The burden of blame for women was heavy in all research sites. In India, motherhood is perceived as the ultimate validation of womanhood. With the increasing risk of married, monogamous women contracting HIV, it was reported to be common for women to be stigmatised and blamed for passing on the infection to her unborn child. Blame is accentuated if a male baby becomes infected, due to the high value already awarded to male children.
The range of advice and support given to women to reduce the risk of MTCT reflects the extent to which health services have made MTCT an integral part of service provision. Where MTCT prevention initiatives are up and running, the range of options offered to women are more comprehensive, and the care provided reported to be of better quality than in situations where there are no such initiatives. In rural Zambia, both the men's and the health providers FGD mentioned using condoms and other family planning methods to prevent further pregnancies. They mentioned also the importance of being part of the pilot MTCT programme, taking drugs and food supplements as ways of reducing the risk of transmission to the infant. In Ukraine, as noted earlier, practically all pregnant women have an HIV test and if they are sero-positive, they are directly referred to a specialist unit where they receive antiretroviral therapy as part of a care programme which includes the promotion of safer sex practices. In Mumbai, in
the absence of affordable treatment, safer sex practices were advised, either condom use or abstinence, to prevent further HIV infection and/or pregnancy. In Koudougou however, there were no recommendations given regarding safer sex practices.
Across all research sites, similar actions were identified as holding the potential to reduce HIV/AIDS stigmatization and its impact on individuals and communities. These included:
- Strengthening the legal framework at local, national and international levels so as to protect the human rights of people with HIV/AIDS.
- Empowering communities to understand and use policy and the law to obtain the care and support they require.
- Developing clear policies about confidentiality and mechanisms for their effective implementation at all levels.
- Promoting mutually reinforcing national and community-based communication initiatives to combat fear and misinformation.
- Enforcing current legislation against mandatory HIV antibody testing and testing without consent.
- Improving community-based self-help services for people living with HIV/AIDS.
- Promoting the rapid completion of ARV therapy trials and increasing accessibility to affordable treatment.
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HIV/AIDS - MTCT