Access to Care, Treatment and Sexual and Reproductive Health Rights and Needs of HIV Positive Women in Uganda

Access to Care, Treatment and Sexual and Reproductive Health Rights and Needs of HIV Positive Women in Masindi and Busia Districts, Uganda (report)

This assessment “Access to Care, Treatment and Sexual and Reproductive Health Rights and Needs of HIV Positive Women in Uganda” was commissioned by Interact Worldwide in collaboration with the International Community of Women Living with HIV/AIDS Eastern Africa Region (ICW EA) and funded by the Bill and Melinda Gates Foundation.

The main objective of the pilot assessment was to establish the current levels of knowledge, service access and the policy environment in Uganda with regard to access to care and treatment, sexual and reproductive health rights (SRHR) as well as violence against women for HIV positive women in order to get a basis for advocacy for the rights of HIV positive women. This was a pilot in only two districts namely Masindi and Busia, to get precursory information on the situation in a typical rural community in Uganda. Mobilization of study participants was done by the National Community of Women Living with HIV and AIDS (NACWOLA).

Using an essentially qualitative design, HIV positive women’s levels of knowledge of SRHR and access to SRH services, HIV and AIDS care and treatment services, their experiences with SRH services, ACT and VAW as well as those of service providers and community leaders were collected and analyzed. In each district, three meetings with HIV positive women, service providers and community leaders respectively were held. A review of documented literature at the national level was also done. This data was triangulated and thematic and content analysis was used to produce the report.

Overall, findings show that awareness and correct knowledge about SRHR is not universal in both districts visited. From the list of rights, many people are aware about some rights and unaware and/or unsure about others. The commonly cited understanding of SRHR for HIV positive women relates to freedom to have consensual sex, get married and produce children. Knowledge about other key SRHR especially with regard to health services is limited or more or less non-existent. Drawing from the findings, it is evident that HIV positive women have a right to protection against infection/re-infection in the case of discordant couples. However, this and several other SRHR of HIV+ women are violated. In most cases, it is men who determine when to have sex, when to have children and whether to use protection or not. There is apparent fear of domestic violence; HIV positive women concede the abuses to their rights in order to avoid fights in the home. No significant differences in knowledge and experiences of SRHR among HIV+ women were observed between the two districts. Access to information on SRH services is limited. For instance, if an HIV positive woman decided to have a child, she would have almost nowhere to go for help or get information on safe motherhood and other critical services like post-partum care for mother and child.

It is also apparent that health workers within the two districts visited have not received any specialised training in care and treatment of HIV positive women. Indeed, provision of specialised SRH services to HIV positive is not popular in both the districts visited. The commonly offered services include PMTCT services, STIs and sexual health services and family planning services. There is a general perception in the communities that HIV positive women should not get pregnant. Consequently, some HIV positive women have taken up family planning services but choice of contraceptive is limited to the Injectaplan. We need to see government committing more resources to providing specialized SRH services for HIV positive women. Other essential SRH services like assisted conception, safe/healthy motherhood, breast examination and sexual health check ups including pap smears need to be added to the list of SRH services provided. Similarly, a comprehensive package of PMTCT which includes follow-up care and post partum care for the mother needs to be provided.

At the policy level, provision of health services is generally guided by the National Health policy and the Health Sector Strategic Plan (HSSP) which have aspects of SRH. Initiatives to develop, review and disseminate SRH policy guidelines have been undertaken. This was one of the objectives of the HSSP I. IEC materials on the SRH needs of women have been developed and disseminated to health facilities. However, policy guidelines on SRHR particularly for HIV positive women have not been developed. SRH service provision targets all women young and adult in the reproductive age bracket.

Further, findings show that knowledge about access to care and treatment is limited and more skewed for HIV positive women living in typically rural communities. This is the case in both Masindi and Busia districts. Access to treatment has generally improved over the years although cases of geographical inaccessibility are still reported especially for people residing in typically rural communities as the major barriers to accessing medication. The service access points are distant from where HIV positive women live. This challenge of inaccessibility is more pronounced in Busia district. Sometimes the long distances constrain women from going for periodic reviews and therefore refills of drugs. This poor health seeking behaviour is attributed to poverty mostly. There are no significant differences between Busia and Masindi with regard to poverty levels. Initiatives to support HIV positive women to get out of abject poverty are critical. Secondly, deliberate efforts to address gender inequality in society should be made.

With regard to VAW, findings show that the understanding of violence against women by study participants in Masindi and Busia is similar to the internationally shared understanding of violence as the physical and non-physical abuse of women. Cases of VAW are common and they are made worse when a woman is HIV positive. In most communities, men use battering as away of “disciplining” their spouses. Other forms include denial of basic necessities/withdraw of financial support, use of abusive language or belittling words, deprivation of the right to associate and even in extreme circumstances of medical care. Women’s knowledge and understanding of violence against women is high. They also recognize the linkage between violence against women and the spread of HIV and AIDS. Study participants noted that the physical assault on women instils fear in them which makes it impossible for the women to question the movements of their husbands.

Fear of violence has made women susceptible to HIV and related ill-health. There are many women in communities with clear manifestations of the symptoms of HIV and AIDS, who are reluctant to go for HIV testing and consequently treatment due to fear of being accused of having brought the infection in the home. Further, findings reveal that HIV+ women who got to know their HIV status while still with their husbands have undergone untold suffering and live in fear of abuse. In both Masindi and Busia, HIV positive women acknowledged that many women have declined to disclose their HIV status due to fear of violence. Others have even declined certain forms of care and treatment due to fear of facing the wrath of their husbands. Cases of women who take drugs without the knowledge of their husbands are reported common in communities both in Masindi and Busia. Again due to fear of domestic violence and being chased from marriages, women secretly undertake HIV tests and even start on septrin prophylaxis without the knowledge of their husbands. There are structures to protect women from violence and to uphold their rights but they face grave challenges: mainly lack of resources for effective performance.

Drawing from the findings, the following suggestions are made.

  • A fairly larger cross-sectional study should be planned to collect more diverse and representative data on the country. This should be an essentially quantitative study with a triangulation of other data collection approaches.
  • In the short run, ICW EA and partners/stakeholders should plan and execute a community wide campaign to sensitize and educate people about the SRHR of HIV positive women in the two districts that have been visited. Special attentions should be given to typical rural communities.
  • The district leadership and health centres in the two districts need to be lobbied to initiate provision of specialized services for HIV positive women. Initiatives to increase access to information on safe motherhood and other critical services like post-partum care for mother and child as well as sexual related health services such as STIs treatment should be championed and supported.
  • ICW EA and partners/stakeholders should plan and implement community wide awareness creation programmes and campaigns to increase awareness about key SRH services for women irrespective of HIV status in the two districts.
  • Health workers directly engaged in the provision of SRH services should be trained in SRHR of HIV positive women and facilitated to provide services.
  • ICW EA and partners/stakeholders should lobby the district leaders and others actors in the respective districts to increase the resource base for provision of treatment and care services to HIV positive women and men including laboratory equipments, testing kits, and reagents, drugs, as well as human resources.
  • ICW EA should collect and provide every sub-county and HC providing HIV and AIDS related services with policy documents and guidelines relating to management of HIV and AIDS to guide them as they execute their services.
  • More lobbying should be done at all levels to ensure active involvement of HIV positive women in decision-making and involvement in monitoring of services as well as policies and programmes for HIV and AIDS.
  • Deliberate efforts to address the gender inequality in society should be made. Sensitization of people on rights and VAW should be undertaken.

Full report

Submitted to:
International Community of Women Living with HIV/AIDS Eastern Africa Region (ICW EA), Plot 16, Tagore Crescent, Kamwokya, P. O. Box 32252, Kampala, Uganda

Prepared By:

Swizen Kyomuhendo and Joseph Kiwanuka
dep’t of SWSA, Makerere University
Tel: +256-752540011/772931070