In South Africa, the issues surrounding HIV and AIDS are very complex in nature. The disease has been a topic of controversy and has only recently been normalized, embraced and guided by the National and STI Strategic Plan (NSP), which is the overall guiding plan for HIV and AIDS in South Africa. The Plan is implemented in partnership with the South African National AIDS Council (SANAC). The principle of health and health care is described by the World Health Organization (WHO) as “ a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. This implies that each and every health plan or programme should aspire to address all these elements. The NSP has gaps in the key areas of sexual and reproductive health and rights (SRHR), and this has been an ongoing critique of policy guidelines as SRHR issues are noticeably absent from provisions in the Plan. While the process of addressing SRHR in South Africa has started, there is scope for these observations to have a broader application on the continent as well, as the same gaps and challenges exist in the Southern African region.
Possible reasons for these gaps?
In the period immediately following 1994, one can see that there was a very good working relationship existed between government and various groups representing women’s issues. There was close collaboration in a nurturing environment bred out of the struggle for democracy. Over time, however this changed as the funding arena became more challenging post-International Population and Development Conference (ICPD Cairo) and post-Fourth World Conference on Women (FWCW – Beijing), dominated by the United States Presidential Emergency Plan for AIDS Relief (PEPFAR) and the Mexico Gag Rule, which prohibited funding work that was linked to reproductive health.
Describing and addressing SRHR gaps remains difficult as they are viewed as a contentious and sensitive issue due to the sexuality implication and connotation and therefore it is easier to ignore them and hope they disappear. Unfortunately this “ostrich” like outlook has had a serious impact on the prevention and management of the feminized HIV and AIDS epidemic in South Africa. These issues, sometimes awkward and difficult to discuss openly therefore remain at the bottom of the priority list. This chapter attempts to highlight these salient gaps in holistic care of women and provides recommendations on how these gaps may be addressed and prevented.
Ten areas affecting women have been identified as lacking in the NSP, include;
- Testing practices for HIV
- Fertility planning: contraception and sterilisation
- Sexual health and rights and desire
- Sexually transmitted infections (STIs) and reproductive cancers, including cervical cancer
- Mental Health issues eg Anxiety, addiction and depression
- Violence against women (VAW)
- Lesbian health
Testing practices for HIV: The essence of a successful testing strategy is in balancing the public health imperative of making testing accessible and the human rights of persons, in particular women, who may not want to test as they fear recrimination. It appears as if testing for most persons, has manifested in the testing of women in antenatal care as this is where testing has been concentrated via the PMTCT programme. Provider-initiated care has been implemented as a strategy to test more people and to ‘normalise’ testing for HIV and AIDS. There is, however, a lack of information about the challenges that women experience, when being tested and how a positive result may impact on their primary socio-economic circumstances, possible exposure to violence and being ostracized by their families and communities. Nurses and lay counsellors are taught how to pass on information, and appear to lack the skills essential for effective counselling. Patients have reported that “it sounded as if she was reading off a card, and didn’t listen to what I was saying”[i]. The quality of the counselling offered to clients is not included in the PHC Supervisors manual, and there is no evidence of a monitoring and evaluation system for HCT. This leads to a lack of confidence in the integrity of the counselling and testing procedures. Effective post test counselling is also essential to assist women to cope with the diagnosis and to assist them to begin to plan ways of coping with the realities of living with the disease. Ultimately the end product should be a model of testing with client-centred counselling which upholds human rights, and provides for appropriate referral for further counselling and treatment in the event of a positive result, and motivational counselling for the negative clients so that they remain negative.
- There is a need for clear guidance to all health workers about coerced testing and disclosure
- HCT guidelines should be developed with a built in monitoring and evaluation system to monitor the quality of the counselling offered, and giving clear direction for post test counselling. There is also a need for the NDoH to take cognisance of the fact that as the number of infected individuals grows, there will be a need for a strategy to address the workload of counsellors, possibly by referral to NGOs working in this arena
Fertility planning: contraception and sterilisation: Our context of patriarchy and poor social economic rights and endemic violence against women has created limited opportunities for women to realize their sexual and reproductive health and rights.
Contraception for women on HAART is not well understood. In some areas there are reports of women being forced to have injectable contraceptives as certain HAART drugs are contra-indicated in pregnancy. Two drugs within the first-line regimen – Evafirenz and Tenofovir – are contra-indicated in pregnancy. There is a lack of female controlled methods – female condoms not as widely distributed or advocated by the health staff and Intra Uterine Contraceptive Devices (IUCDs) are not well implemented as a method of contraception for HIV positive women. There have been anecdotal reports from women that they are being made to sign consent forms for sterilisation to access various services, e.g. termination of pregnancy. This needs to be urgently addressed in the form of more comprehensive training of nurses in fertility planning counselling. There appears to be an impression amongst health workers that an HIV positive women must avoid pregnancy at all costs, and as a result of her HIV status should be denied the possibility of a family. A strategy for the improvement of the health workers attitudes towards HIV positive women with regard to fertility planning and sexual health should be a matter of extreme urgency. The women in the community need to understand their options with regard to fertility planning so they make a more informed choice. There is a need for an integrated SRHR and HIV ‘treatment literacy process’ which could educate both health care workers and clients.
- ARV Guidelines for fertile women should be developed which would give clear indications for safe contraceptive choices for positive women
- There is a need to hold health workers accountable and legally address or prosecute discriminatory health workers and instances of human rights violations (ie forced sterilization and contraception)
Sexual health and rights, pleasure and desire: The notion that HIV-positive are entitled to sexual rights and desire is not well addressed. Many HIV-positive women, after dealing with an initial diagnosis and then stabilised on treatment, express the desire to express their sexuality and also possibly to have a child. In the African context, the demonstration of fertility, is often a prerequisite for marriage and the social definition of womanhood is tied to having children and a husband (Preston-Whyte 1988; Sonko 1994). The choice to have a child, however, is not part of the continuum of HIV and AIDS care in South Africa. The sexual, reproductive and fertility intentions of women have been discouraged and marginalised. There is an underlying assumption that HIV-positive women should not be conceiving. Yet the main mode of sexual transmission of HIV – sexual intercourse – is also the mode of getting pregnant. This reality is not being dealt within the public health notion ‘use condoms for dual prevention’, which emphasises a safer sex practice but does not deal with the reproductive intentions of women. Current prevention messages are limited in that they do not address women’s full sexuality.
- Provision of training for health care workers on sexual health
- Implementation of a comprehensive evidence based sexuality education in schools as a part of the current lifeskills curriculum
Abortion: While SA has a progressive legal framework for the termination of pregnancy, (Choice on Termination of Pregnancy Act and Choice on Termination of Pregnancy Amendment Act), these are not well implemented not well understood. On learning they are HIV positive during pregnancy, some women may choose to terminate the pregnancy. This is made difficult by the fact that TOP and HIV services are not integrated or aligned in any formal way. There have also been reports of women being compelled to sign consent for an abortion or sterilisation in order to continue accessing HAART. While our abortion law is viewed as a liberal law, currently only surgical abortion is available in the public sector. Medical abortion is only provided in the private sector for the first 56 days of pregnancy. The NSP suggests that the medical abortion guidelines for the public sector need to be finalised and medical abortion should be offered as part of the continuum of HIV AND AIDS care. The lack of medical abortion services in the public health sector affects the choices of all women. By extending medical abortion services , it would ensure that HIV Positive women have a choice in the outcome of the pregnancy . One of the barriers to the medical abortion service in the public sector is the lack of staff available to perform this. This is partially due to the fact that in the public sector nurses have not been provided with a system through which services are recognized and remunerated in terms of the occupational service dispensation (OSD).
- Medical abortion guidelines need to be finalized
- Referral and conscientious objection need to be addressed so that the rights of the health care worker not to participate in TOP, and the rights of the client to get the appropriate management are addressed
- Protocol should be developed that enables HIV testing and abortion services to be integrated so that the client receives optimal care
STIs and reproductive cancers, including cervical cancer: Patriarchy and cultural practices which enables acceptance of practices which are harmful to women including multiple concurrent partners are part of the reason for the inability to stop the spread of STIs. Many women are in relationships where they have little or no voice over their own bodies or sexual practices. The health system tends to focus only on treating the STI without considering the underlying factors of why the person got infected.
Services should be expanded beyond just curative care, to deal with support and psychosocial needs of people. STIs commonly reoccur in the same person and are a significant contributory factor in contracting HIV. While this is a well known fact, services do not operate at maximal efficiency, and there is some concern over the quality of care[ii]. The integration of HIV, TB and STI services has been advocated for several years, but the reality on the ground is that these traditionally vertically implemented programmes are finding it somewhat more difficult in practice. STI counseling should be a mandatory part of the health intervention for any HIV Positive woman. HIV-positive women are forty times more likely to contract cervical cancer than those not infected. Our cervical cancer screening programme is not well understood by clients nor well implemented by health workers and this does not translate to an effective health service practice. A woman may be on HAART and yet still die of cervical cancer. There is a need for greater understanding to address better prevention and treatment programmes, as well as a more effective monitoring system to ensure that these screening services are offered to women at a PHC level.
- There should be better information and advocacy campaigns within the public sector about the linkages between HIV and cancer of the cervix.
- The Cervical Cancer Screening Policy should be updated to include annual screening for HIV Positive women
- Options of Hepatitis B and Human Papilloma Virus innoculations should be investigated.
- PHC facilities should be fully equipped to do cervical screening and should be linked to a reliable laboratory with efficient turn around times for results
Anxiety, depression and addiction: A variety of social pressures including violence against women, economic instability, a patriarchal society, a gendered burden of care, and other factors lead to a higher prevalence of emotional and mental issues in women[iii]. Of the most debilitating of these are anxiety and depression which exacerbate any livelihood issues the women may be facing. Many mental care services and institutions often are unable or unwilling to deal with these issues in combination with HIV[iv]. Researchers agree that health services need to be expanded to address these issues but there is little or no information available on how the best ways to achieve this. HIV-positive women and poorer women are believed to experience greater anxiety and depression. Mental health services for the general population are problematic to access at PHC level, with large sectors of the rural population having no access to mental health services except at the local district hospital. Mental health services such as they are focus on the more serious mental health conditions like Schizophrenia and other behaviour disorders, as these patients present an immediate danger to themselves and the community.
- There needs to be an update of the mental health guidelines to include the mental health needs of HIV Positive women
- Health care workers need additional training in counselling and the recognition of depression, anxiety and substance abuse
Violence against women: Violence against women (VAW) continues to pose a large risk for managing the spread of HIV/AIDS as well as management of those women that are HIV positive. Psychological abuse tends to be more pervasive, with over two-thirds of women reporting incidences[v], but the acceptance and prevalence of physical violence, with almost half of women in one study reporting physical abuse[vi], hamper efforts of prevention and empowerment for women. Cases of sexual assault continue to be high with total number of incidences increasing over the last six years[vii] further impeding prevention campaigns creating a social norm of acceptable violence towards women.[viii] Research agrees that this is a major issue for successfully combating the HIV/AIDS pandemic but appears to lack consensus on the best way to combat this problem.
Currently there is a disconnection between health services and services addressing VAW. Health workers do not consistently screen for VAW nor refer women who experience violence. Post-exposure prophylaxis services are not well implemented and recording of details of sexual assault need to be better implemented. Violence against women tends only to be treated medically, looking at physical healing and not addressing other psychosocial issues, including depression.
- Strengthening of support networks and work of VAW organizations in the NSP and SRH policies.
- Provide training to health care workers on the management of survivors of abuse including recognizing the signs and symptoms appropriate care, follow up and referral
Lesbian health: Lesbian health has been generally recognized as an “un-catered specialty” and one needing more focus due to the vulnerability of the group and general societal discrimination.[ix]
Social stigma and pressures lead to lesbians having a higher prevalence of risky social behaviour, mental issues, and unwillingness to access services.[x][xi] Lifestyle choices are often subject to misunderstandings concerning their risks for reproductive cancers, STI’s, and HIV/AIDS[xii] while increasing their risks for “breast, ovarian, endometrial, lung, and colon cancers.”[xiii] However, recent research noted a self-reported HIV incidence rate of 9% within a sample of South African lesbian women. Health services do not specifically address lesbian women’s health needs. This community is often viewed as being immune from HIV. Assumptions are also made that lesbians have no need for maternal care
- Guidelines for Lesbian health need to be developed in order to assist health care workers and clients alike in better understanding of the risks of HIV to this group of women
- Health care workers need to be trained to be sensitive to the orientation choice of clients and to respect their need to access services like maternal health
The National Strategic Plan is considered a fairly comprehensive strategic plan for the management of HIV and AIDS in South Africa. It does focus on prevention, treatment and care, and touches on the rights of people living with AIDS. It does however not provide for holistic management, particularly of women. There are several key areas of women’s health which have been left out of the plan. If women that are HIV Positive continue to be managed in their words “as a pair of ovaries and a uterus”[xiv], no significant inroads will be made into improving the HIV outcomes for these women. There is an opportunity here to make a significant difference in the management of these women by applying policy changes in the areas identified, as well as rigorous changes to the attitude and quality of care of the health care workers on the ground.
Health Systems Trust
[i] 2010. Interview with client HIV counselled. Durban
[ii] Schneider, H., Chabikuli, N., Blaauw, D., Funani, I and Brugha, R. Improving the quality of STI care by private general practitioners: a South African case study. Sex Transmitted Infections 2005: 81:419-420
[iii] [iii] Prince, M., Patel, V., Saxena, S., & Maj, M. (2007). No health without mental health. The Lancet, 370, 859-877. Retrieved from ScienceDirect database.
[iv] Collins, P. Y. (2006). Challenges to HIV prevention in psychiatric settings: Perceptions of South African mental health care providers. Social Science & Medicine, 63, 979-990.
[v] Seedat, M., Van Niekerk, A., Jewkes, R., & Shahnaaz, S. (2009). Violence and injuries in South Africa: Prioritising an agenda for prevention. The Lancet, 374(9694), 1011-1022. Retrieved from ScienceDirect database.
[vi] Seedat, M., Van Niekerk, A., Jewkes, R., & Shahnaaz, S. (2009). Violence and injuries in South Africa: Prioritising an agenda for prevention. The Lancet, 374(9694), 1011-1022. Retrieved from ScienceDirect database.
[vii] Annual Report: Total Sexual Offences in RSA for April to March 2003/2004 to 2009/2010. Retrieved Sep. 16, 2010, from South African Police Service. Web site: http://www.saps.gov.za/statistics/reports/crimestats/2010/categories/total_sexual_offences.pdf.http://www.saps.gov.za/statistics/reports/crimestats/2010/categories/total_sexual_offences.pdf
[viii] Seedat, M., Van Niekerk, A., Jewkes, R., & Shahnaaz, S. (2009). Violence and injuries in South Africa: Prioritising an agenda for prevention. The Lancet, 374(9694), 1011-1022. Retrieved from ScienceDirect database.
[ix] Blackwell, D. A. & Blackwell, J. T. (1999). Building Alternative Families: Helping Lesbian Couples find the path to parenthood. AWHONN Lifelines, 3(5), 45-48. Retrieved from Wiley Online Library database.
[x] Blackwell, D. A. & Blackwell, J. T. (1999). Building Alternative Families: Helping Lesbian Couples find the path to parenthood. AWHONN Lifelines, 3(5), 45-48. Retrieved from Wiley Online Library database.
[xi] Diamant, A. L., Wold, C., Spritzer, K., & Gelberg, L. (2000). Health Behaviors, Health Status, and Access to and Use of Health Care. A Population-Based Study of Lesbian, Bisexual, and Heterosexual Women. Archives of Family Medicine, 9, 1043-1051. Retrieved from Arch Fam Med database.
[xii] Carroll NM. Optimal gynaecological and obstetric care for lesbians. Obstet Gynecol 1999;93:611-3.
[xiii] Hughes, C. & Evans, A. (2003). Health needs of women who have sex with women Healthcare workers need to be aware of their specific needs. British Medical Journal, 327(7421), 939-940.
[xiv] Interview with participants in Womens Health Guage mapping Workshop, Cape Town. February 2010