Abstract
Background: When diagnosed HIV-positive women might experience emotional turmoil which could affect their ability to disclose their HIV-positive status to significant others. Unless women manage to disclose their HIV-positive status, their partners/husbands would remain ignorant about this issue and thus unable to provide support to these women. Without their husbands'/partners' support women are unlikely to use condoms consistently while pregnant and breastfeeding, adhere to their anti-retroviral treatment and implement appropriate infant feeding options. These aspects could have detrimental effects on the women's lives and increase the risk of mother-to-child transmission of HIV to their infants.
Method: Structured interviews were conducted with 200 women who had used prevention of mother-to-child services in one province of South Africa.
Findings: Almost all women experienced emotional turmoil when learning about their HIV-positive status and were surprised that they tested HIV-positive. Some women took months before disclosing their HIV-positive status to their husbands/partners and a few never did so.
Conclusions: Pre and post-test counselling remain vitally important to help newly diagnosed HIV-positive persons to cope with their emotional experiences and to assist them to disclose their HIV-positive status to significant others, especially to their husbands/partners.Unless prevention of mother-to-child transmission of HIV programmes address the interrelated issues of emotional turmoil and disclosure, the outcomes of these programmes might be jeopardised.
AUTHOR DETAILS
Annie N Mbokane, RN, D Lit et Phil
Department of Health Studies, University of South Africa, Postgraduate student [email protected]
*Valerie J Ehlers, RN, D Lit et Phil
Department of Health Studies, University of South Africa, Professor, Pretoria. 0003.
South Africa. [email protected]
Janetta H Roos, RN, D Lit et Phil
Department of Health Studies, University of South Africa, Professor, Pretoria. 0003. South
Africa. [email protected]
KEYWORDS
Anti-retroviral medicines (ARVs), condom utilisation, disclosure issues, emotional turmoil, Human Immune-Deficiency Virus (HIV), prevention of mother-to-child transmission of HIV (PMTCT)
Abbreviations
AIDS – Auto Immune Deficiency Syndrome
ARV – Anti-retroviral
ART – Anti-retroviral treatment
HCT – HIV counselling and testing
HIV – Human Immuno-deficiency Virus
MTCT – Mother-to-child transmission
PMTCT – Prevention of mother-to-child transmission of HIV
INTRODUCTION
Prevention of mother-to-child transmission of HIV (PMTCT) services are available free of charge to pregnant women in South Africa. However, not all HIV-positive pregnant women use these services, putting their own health and lives at risk as well as increasing the risk of transmitting HIV to their unborn and newly born babies.
As anti-retrovirals (ARVs) are available free of charge in South Africa, more and more women using ARVs could become pregnant. Although ARVs do not cure HIV, they help to increase the person's CD4 count and decrease the viral load (VL). These aspects decrease the risk of mother-to-child transmission (MTCT) of HIV. Risk reduction can be enhanced by early detection and treatment of opportunistic infections and by attaining the best possible health status during and after pregnancy. Furthermore the HIV-positive woman should consistently use condoms throughout her pregnancy and breastfeeding phases to prevent re-infections as these decrease the CD4 count and increase the VL, increasing the risk of MTCT.
Only pregnant women who use HIV counselling and testing (HCT) services can access and use PMTCT services if they test HIV-positive. Accepting one's HIV-positive status and utilising PMTCT services might pose serious challenges to some pregnant women. Learning about pregnant women's emotional experiences on learning about their HIV-positive status, and their challenges encountered to disclose their HIV-positive status to other persons, might help other women to access and utilise both HCT and PMTCT services in future and to disclose their HIV-positive status to others.
RESEARCH METHODOLOGY
RESULTS AND DISCUSSION
Respondents were questioned about their experiences after testing HIV-positive, how they perceived their HIV-positive status, and how they experienced specific HIV-positive status-related issues. Disclosing of their HIV-positive status to others was also addressed as non-disclosure or limited disclosure could affect the outcomes of the PMTCT programme adversely.
Most respondents (88.5%; n=177) reported learning about their HIV-positive results as being a challenge not only during their current but also during their future pregnancies. This finding is supported by Avert (2013) who explained that an HIV-positive diagnosis can cause numerous emotions, making it difficult for the person to decide how to react. Some of the current study's respondents (60.0%; n=120) were surprised by their HIV-positive results and 44.0% (n=88) were scared, 33.5% (n=69) were confused, 30.6% (n=67) felt hopeless, 27.5% (n=55) were angry, 19.0% (n=38) experienced resentment, 18.5% (n=37) were depressed, 17.5% (n=35) were anxious, and 8.5% (n=17) felt lost.
Avert (2013) stated "… anger is a powerful emotion that could be used by an anxious person as a coping strategy to feel powerful in a powerless situation. Resentment could be towards the individual herself for her own and/or her partner's infidelity or to the person she suspected infected her". Respondents' anxiety relate to fear of changes in their lives, including discrimination and ostracism. Anxiety and depression could cause "…changes in appetite, restlessness, suicidal ideas, tiredness and insomnia, which could impact negatively on the woman's health and on the well-being of her unborn child. Being diagnosed HIV-positive could lead to feeling a loss of one's independence, health and usual sexual activities" (Avert 2013).
DISCLOSURE
A pregnant woman's emotional experiences could influence whether or not she would disclose her HIV-positive status to others, when she would do so and to how many people. Disclosure forms an integral part of PMTCT programmes because the HIV-positive pregnant woman requires her partner's cooperation to use condoms effectively, take her ARVs regularly, attend relevant clinics and adhere to an appropriate infant feeding option.
Out of the current study's 200 respondents, 12.0% (n=24) did not agree that it was good to disclose one's HIV-positive status to other persons. Out of 176 respondents, 44.9% (n=79) disclosed their HIV-positive status only to one person, while 19.9% (n=35) did so to two persons, 13.6% (n=24) to three persons, 9.7% (n=17) to four persons, and 11.9% (n=21) to five persons. Madiba and Letsoalo (2013:8) indicated that disclosure could lead to discrimination, stigma and isolation, but it could not be determined from the current study's findings whether or not the respondents encountered any of these experiences. On the other hand, disclosure could help to break down the silence surrounding sex issues and HIV stigma (Maman, Van Rooyen & Groves 2013:229), when many people in specific communities disclose their HIV-positive status.
The current study's 176 respondents revealed that some (65.3% n=115) disclosed their HIV-positive status within one week after their HIV-positive diagnosis, some (21.6%; n=38) did so within one month of their diagnosis, status, a few (8.0%; n=14) waited six months before disclosure, and 5.1% (n=9) only did so after a year. As many as 12.0% (n=24) of the current study's respondents had never disclosed their HIV-positive status to others even though these interviews were conducted 6-14 weeks after their babies' births. This finding implies that some women who used PMTCT services had to cope without any support as their significant others were unaware of their HIV-positive status and thus also of their utilisation of PMTCT services.
As many as 70.5% (n=124) of the respondents disclosed their HIV-positive status first to their partners, 43.8% (n=77) did so to their parents, 25.0% (n=44) to their sisters, and 20.5% (n=36) to their friends. However, 8.0% (n=14) of the HIV-positive women initially disclosed to their brothers, 5.1% (n=9) to unspecified relatives and 1.7% (n=3) to their mothers-in-law.
Madiba and Letsoalo (2013:8) indicated that HIV-positive women's socio-economic status could influence their disclosure of their HIV-positive status. In the current study, 70.5% (n=124) out of the 176 women who had disclosed their HIV-positive status to others, had initially disclosed to their partners. However, 78% (156 out of 200) of the current study's respondents were unemployed, and out of the 44 working women, 50.0% (n=22) earned less than R1 000 (approximately USD 426) per month, implying that they were financially dependent on others. However, 76.5% (n=153) out of the 200 respondents had acquired at least eight years' schooling, which might have enabled them to disclose their HIV-positive status. Those 176 (88.0%) respondents who believed that it was advantageous to disclose their HIV-positive status, stipulated the following reasons for their beliefs:
• 34.7% (n=61) felt less stressed
• 29.0% (n=51) felt free
• 40.0% (n=70) obtained the required support after disclosure
• 15.3% (n=27) acquired advice
• 11.4% (n=20) felt one could not hide one's HIV-positive status
• 16.5% (n=29) wanted people to know what was wrong with them in case they became ill, and
• 22.2 % (n=39) disclosed to encourage other people to undergo HIV testing.
These findings seem to agree with those of Maman et al (2013:229) who reported that the women who participated in their study, felt as if "… a heavy load had been removed from their shoulders, and that they felt free and relieved to live their lives after having disclosed their HIV-positive status to others".
CONCLUSIONS AND RECOMMENDATIONS
In order to avoid repetitions, every conclusion will be followed by a relevant recommendation.
As many as 88.5% (n=177) of the respondents experienced emotional turmoil on being diagnosed HIV-positive. This finding emphasises the dire necessity of providing effective counselling before and after testing any person for HIV, as specified in the guidelines of the National Department of Health of South Africa (NDOH 2010, 2013).
Most (92.0%; n=184) women were shocked to be diagnosed HIV-positive. As all respondents became pregnant because they did not use condoms effectively, and probably also became infected with HIV because they did not use condoms effectively, health education should focus on the dire necessity to use condoms effectively and consistently, even with regular and exclusive sex partners. Health education should be consistent for all population groups but should focus specifically on girls and young women and on women attending family planning clinics. Consistent condom use throughout pregnancy and breastfeeding phases is essential to prevent re-infections which could cause the CD4 count to fall and the viral load to rise, increasing the risk of MTCT. The outcomes of PMTCT programmes could be jeopardised if women fail to use condoms effectively while pregnant and breastfeeding and this health education message needs to be emphasised consistently.
Some respondents (25.0%%; n=50) considered themselves to be protected from HIV infection because they only had sex with one partner. It seems vitally important that health education messages should emphasise that 'being faithful' only offers protection against HIV infection if both partners are exclusively faithful to each other and if both partners are HIV-negative. If one partner is HIVpositive, 'being faithful' to this partner could indeed cause an HIV infection unless condoms are used effectively at every occasion. Even if both partners are HIV-positive, condoms should be used consistently to prevent re-infections.
The outcomes of PMTCT programmes could be compromised by ineffective condom use. Both men and women should realise, as a result of sustained health education, that re-infection can cause an HIV-positive woman's CD4 count to fall and viral load to rise, increasing the MTCT risk during pregnancy and breastfeeding.
Women need to disclose their HIV-positive status to their husbands/partners to obtain their cooperation to use condoms effectively, but not all respondents did so. Disclosure of a woman's HIV-positive status could be adversely affected by her emotional turmoil when diagnosed HIVpositive. Thus post-test counselling should assist women to cope with their emotional experiences and to disclose their HIV-positive status to their husbands/partners as soon as possible. Without such disclosure, HIV-positive women's husbands/partners cannot support them to utilise free PMTCT services effectively. PMTCT services should offer opportunities for couples to be tested and counselled if couples should prefer this. HCT for couples might facilitate sharing of the information and both partners will be knowledgeable about each other's HIV status.
Helping newly diagnosed HIV-positive persons to cope with their emotional turmoil and to disclose their HIV-positive status to significant other persons, could enhance the outcomes of PMTCT programmes. This is the case because these women would be more likely to use condoms effectively (especially while pregnant and breastfeeding), adhere to appropriate infant feeding options, take their ARVs as prescribed and attend the relevant clinics regularly. Women whose husbands/partners are unaware of their HIV-positive status could encounter daily challenges to adhere to the PMTCT programme's requirements, adversely affecting their own health and increasing the risk of MTCT for their infants. Thus helping HIV-positive women to cope with emotional issues and to disclose their HIV-positive status to their husbands/partners is an integral part of the PMTCT strategy.
LIMITATIONS OF THE STUDY
Structured interviews were conducted with 200 women from one district in one province of South Africa. Thus the findings cannot be generalised to the entire country, unless more studies are conducted in different parts of the country. Richer information could be obtained by conducting indepth qualitative interviews with women using PMTCT services
This study focussed only on the experiences of women. Future studies should focus on men's emotional experiences and disclosure issues after being diagnosed HIV-positive.
REFERENCES