1 PMTCT Formative Research & Communication Strategy PSI/Vietnam April 2008

2 Methodology Target Sites: Hanoi, Hai Phong, Quang Ninh Formative research – 24 Focus group discussions with the target groups Early CT Users: pregnant women and new mothers (baby under 6 months) tested for HIV during the first 7 months of pregnancy Early CT Non-Users: Pregnant women and new mothers tested for HIV after the 7 th month of pregnancy Husbands of the above groups (Hai Phong only) Quantitative questionnaire to collect detailed information from each participant 3 In-depth interviews with ANC/PMTCT service providers

3 What We Wanted to Know How do women perceive HIV counseling and testing (CT) during pregnancy? Understand motivational triggers, perceived benefits and barriers to accessing CT early in pregnancy What are women’s experiences with HIV testing at the time of ANC? Explore HIV testing and counseling as a part of ANC services

4 Specific Study Themes Awareness and knowledge related to PMTCT HIV risk perceptions and attitudes Insight to the decision-making process for HIV testing and counseling at the time of ANC Motivations and perceived barriers towards seeking HIV testing and counseling early in pregnancy Perceived benefits of HIV testing and counseling early in pregnancy The male partner’s role in accessing HIV testing and counseling during pregnancy

5 Knowledge/Availability High awareness of MTCT but low knowledge 68% of women and 64% of men can state correctly the ways that HIV can be transmitted from mother to child. However, there is a lack of understanding that it is possible for a HIV negative unborn child be born to a HIV positive mother. I think if the mother is infected, the baby is bound to be. They share the same blood. (Pregnant woman, early CT non-user, Hai Phong) Availability and content of PMTCT programs are not well known Only HIV (+) people need to know about this. (Mother, early CT non-user, Hai Phong) Awareness of the availability of C&T Services at ANCs is low

6 Modes of MTCT Though 3 modes of MTCT are identified, knowledge of them is incorrect or insufficient Pregnancy is the most obvious time of HIV transmission Delivery is also mentioned, to a lesser extent Breastfeeding causes confusion - HIV is understood to be carried in the blood, not in breast milk It’s mainly through blood… but I wonder if it can be infected through breast feeding. I know that they should not breastfeed the baby, but milk is not blood. I’m not sure if the milk is infected. (Pregnant woman, early CT user, Hai Phong) Misconceptions exist: some believe MTCT can occur when caring for the baby When giving birth to the baby, and breastfeeding the baby, even when taking care of the baby. (Mother, early CT non-user, Hai Phong)

7 Stigma High levels of stigma and discrimination With the belief that HIV is shameful, it provides a powerful basis for both stigma and discrimination. These stereotypes also enable some pregnant women to deny that they are personally likely to be infected or affected. (Husband of early CT non-user, Hai Phong) Women with the MARP groups (SWs, female partners of IDUs etc.) are unlikely to attend until C&T and ANC services is normalized. I thought it is abnormal if actively go or ask for early CT. Only some special groups need early CT. (Pregnant woman, early CT non-user, Hai Phong)

8 Personal Perception of HIV Risk Overall, personal risk perception is low among study participants. Women do not perceive themselves at HIV risk because of their wholesome lifestyle I think all of us here are faithful and lead a sound life. So, according to me, we will never think that we will be infected. So there is only unintentional risk. (Pregnant woman, early CT non- user, Hanoi) Men are in agreement that women are less at risk When women get married (and are pregnant), they become more “mature” and they reduce their social contacts. Therefore, their risk is lower. (Husband of early CT non-user, Hai Phong)

9 HIV Testing as normal within ANC Men and women do not perceive pregnant women to be at risk. However, they are willing to go for an HIV test as part of normal procedure within ANC. I just thought that since I have no one besides my husband, I was pretty self confident that I wasn’t infected. I just did the test to comply with common procedure. (Pregnant woman, early CT non user, Hanoi)

10 On Antenatal Care Most participants visited public sector services The first ANC visit takes place early in pregnancy and ANC visits are frequent throughout pregnancy 88% of women and 77% of men state that they or their wives first ANC consultation took place in the first 3 months of their pregnancies 0.8% of women and 3.7% of men share that they had ANC only once HIV counseling and testing during pregnancy takes place at the time of routine ANC

11 Expectations of the ANC Visit Desire to ensure the health and safety of the baby The motivator is the same for every pregnant woman. It is for the sake of our babies. In order to ensure that we have a healthy baby, we need to have the test. (Mother, early CT user, Hai Phong) Participants share an overall concern for the health and well-being of the baby. Concerns listed by participants include ectopic pregnancy, birth defects, mother’s physical activities, nutrition, emotions that negatively affect the development of babies, pollution, weight and position of the fetus, quantity and quality of the breast milk… When the concept of healthy baby was explored (some FGDs only), a healthy baby was viewed as having no birth defects, no malnutrition, and no disease => By adding HIV to the checklist of routine tests to ensure the healthy of the baby, ANCs have the opportunity to normalize the test and avoid stigma and questions on risk.

12 When Does CT Take Place? Most times, doctors determine or influence when CT takes place during pregnancy and CT often occurs late in pregnancy After the 24 th or during the 28 th week After the 32 nd week; HIV test is compulsory to deliver at the hospital facility When testing takes place earlier, multiple testing is required.

13 Influence of Doctors Most women who tested early are “Advised Testers” and received CT following the advice of their medical providers during routine ANC I am so busy so I wouldn’t have had the test without being encouraged. The health workers at the ward are friendly, and we trust them and so when they advised us to have the test, we agreed to do it as it was convenient. (Pregnant woman, early CT user, Hai Phong) Some women are tested for HIV without their consent Very few women actually receive Voluntary HIV Testing When asked about HIV counseling during ANC visits in the questionnaires, many women stated that they did not receive information on  MTCT (55%)  Methods of HIV prevention (48%)  HIV testing (32%)

14 Support from Husbands C&T, like most ANC decisions were made by the wife, but women will test if their husband recommends it Though men admit they are clients of SW, many do not perceive themselves to be at risk because they use condoms consistently I think 90%, even 100% use condoms when having sexual intercourse with sex workers. If we are aware of the risks and we understand it properly, then we are safe. (Husband, of early CT user, Hai Phong) However, a number of men confess that sometimes condoms are not used… Because we are not of sound mind when we are drunk… When we go there, we will forget everything when the girls fondle us. Sometimes we intend to use a condom, but we find it uncomfortable. (Husband of early CT user, Hai Phong)

15 Motivational Triggers for CT during Pregnancy Desire to ensure the health and safety of the baby The motivator is the same for every pregnant woman. It is for the sake of our babies. In order to ensure that we have a healthy baby, we need to have the test. (Mother, early CT user, Hai Phong) Advice of medical providers at the time of routine ANC checkups I am so busy so I wouldn’t have had the test without being encouraged. The health workers at the ward are friendly, and we trust them and so when they advised us to have the test, we agreed to do it as it was convenient. (Pregnant woman, early CT user, Hai Phong) Health and happiness of the family To make sure all of our family members are healthy. We can put our mind at peace and without worries. Then I can say my husband doesn’t have risk behaviors. And both the mother and baby are healthy. (Pregnant woman, early CT user, Hai Phong)

16 Motivational Triggers for CT during Pregnancy Absence of personal risk perception that removes fear and facilitates HIV testing Both my husband and I have safe behaviors, so I am afraid of nothing. (Pregnant woman, early CT non-user, Hai Phong) Convenience of HIV testing, which is part of a routine blood examination I had the test because I was encouraged and it was convenient. It was not because I thought I was infected. (Pregnant woman, early CT user, Hai Phong) Belief in confidentiality of the test result You only know a woman is HIV (+) in her file but not in person. How can we know who she is? Moreover, we never see others’ profiles. So there is nothing to worry about. (Pregnant women, early CT user, Ha Noi)

17 Perceived Barriers to Accessing CT Early in Pregnancy Low personal risk perception (belief in a wholesome lifestyle) People don’t go because they are so subjective that they are HIV free. They trust their husbands. With such belief, they will never go to that place. Even me, I will never go to that place, however it is advertised. This is because I trust my husband and myself. (Pregnant, early CT non-user, Hanoi) Low awareness of HIV and PMTCT Some have never heard of blood testing and are not aware of the danger of HIV infected pregnant woman. (mother, early CT non-user, Quang Ninh)

18 Perceived Barriers (contd.) Fear of a positive test result and its consequences I myself believe that I am not at risk for HIV. But for others, they are afraid that people will know about their health status. They are ashamed and they cannot overcome their own complex. They can’t ignore the community’s discrimination and stigma. I think it is the reason for not having a test for many people, especially for those who have limited knowledge. (Mother, early CT non-user, Hanoi) High levels of stigma and discrimination With the belief that HIV is shameful, it provides a powerful basis for both stigma and discrimination. These stereotypes also enable some pregnant women to deny that they are personally likely to be infected or affected. (Husband of early CT non-user, Hai Phong)

19 Institutional Barriers to Accessing CT Early in Pregnancy Limited or lack of counseling by service providers, owing to their Lack of time to provide information or counseling Lack of willingness to provide information and seek consent Bias based on their perceptions of who is at risk for HIV Standard procedures of PMTCT program that encourage late testing. Advice is to test is after the 24 th week of pregnancy at the 28 th week for the administration of preventive ARV therapy after the 32 nd week to comply with requirements to deliver in the facility Refusal to undergo multiple HIV testing during pregnancy Early testing implies multiple HIV testing, and an increase in cost and discomfort.

20 Questions to Help Guide the Communications Strategy

21 Questions Early Testing How do we define “early” testing? What are CDC’s thoughts on when we should be recommended pregnant women to get tested? Tentatively, we have in the first seven months. Confidentiality Some of the research out there has that all people who test positive get their names on local governmental lists for PLHA. Is this accurate? What level of confidentiality should pregnant women expect?

22 Questions Testing How long does the test take- from taking blood to getting the result? Does it take longer for a positive result? What are the circumstances that blood is tested other than for HIV during the ANC visit? Price Our literature review came back with difference responses on costs of getting tested. What are the prices for our target sites?

23 Questions Counseling Process How is ANC-based C&T integrated in the ANC system. Does the ANC doctor/nurse also serve as the counselor for HIV C&T or are they different staff? Is pre-test counseling provided for individuals or for groups of women? We have some feedback that some women get their ANC physicals in groups. Is their option to “opt-out” given in front of other pregnant women?

24 Questions HIV Positive Women Regarding the HIV positive women, we should ask some general questions: What are the CDC Breast-feeding guidelines? What other kind of information do we want to communicate to HIV positive women (confidentiality; referrals to other medical services; child-care; care, support, and treatment options, etc.)? What types of sites will be included in the 3 provinces (commune health centers or only district & provincial hospitals)?

25 Communications Approach

26 Target Group Pregnant Women in their first 7 months & Husbands in Hanoi, Hai Phong, and Quang Ninh 1 Objective: To increase utilization of ANC-based C&T services in the first 7 months of pregnancy HIV positive women in project sites in Hanoi, Hai Phong, and Quang Ninh Objective: For pregnant women living with HIV or AIDS to be better informed about breastfeeding practices to reduce chances for MTCT. 1 Secondary Beneficiaries: This strategy will also benefit men and women in the age bracket who are planning to have children.

27 Communication Approach Due to high stigma and low risk perception, the key lesson from this research is that the most likely issue to address to increase utilization of ANC-based C&T services is that: “Early HIV C&T is a routine test for the health of the baby that gives me peace of mind ”

28 Potential Messages ANC Visit Checklist: Mother’s Height and Weight Measured Ultrasound Scans to check progress Blood Pressure Blood and Urine tests on: Blood Type Anemia routine tests for infections that can affect you or your baby, such as hepatitis B, syphilis, HIV and bacterial infections Chorionic villus sampling (CVS) Amniocentesis Early Testing Gives Peace of Mind

29 Mix of Media Channels Outdoor media – Billboards, posters Signage at the ANC sites IEC Materials – brochures, leaflets etc.

30 Potential IEC Materials Promotion of ANC-based C&T among pregnant women in their first 7 months of pregnancy Brochure: Routine Checklist of tests to have at ANC visit Normalize HIV testing leaflet; link with other tests (Hepatitis B & Anemia testing ?) “Benefits of Early Testing” leaflet Flip Chart for doctor to promote C&T Marketing card for ANC-based C&T Increasing Knowledge of HIV Positive Women Brochure: Breast feeding or Alternative Feeding Marketing card: Referral services Flip chart for doctor/community worker to educate on feeding options.

31 Thank you!