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Women's reasons for not participating in follow up visits before starting short course antiretroviral prophylaxis for prevention of mother t
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     1 Division of HIV/AIDS Prevention, National Center for HIV, STD and TB Prevention, Centers for Disease Control and Prevention, 1600 Clifton Road, NE, Mail stop E-37, Atlanta, Georgia 30333, USA, 2 266th Pl SE, Sammamish, Washington 98075, USA, 3 Projet RETRO-CI, US Embassy/CDC-HIV, 01 BP 1712 Abidjan 01, C?te d'Ivoire, 4 Department of HIV/AIDS (Prevention)-Room C-128, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland, 5 Centers for Disease Control and Prevention, Global AIDS Program, Rwanda, US Embassy, BP 28, Kigali, Rwanda, 6 Global AIDS Program, BOTUSA Project, PO Box 90, Gaborone, Botswana

    Correspondence to: T M Painter tcp2@cdc.gov

    Abstract

    Interventions to prevent transmission of HIV from mother to child have become increasingly available in Africa, but many women do not participate.1-12 Refusal to be tested for HIV and non-receipt of HIV test results have been studied as barriers to participation,13-16 but no studies have examined why fewer than one third of pregnant women who receive HIV-1 positive test results eventually start taking antiretroviral prophylaxis.5-7 9 This problem affected a programme aiming to prevent transmission of HIV from mother to child in Abidjan, C?te d'Ivoire, where an estimated 12% of pregnant women are infected with HIV-1.17 The programme has been implemented at a public antenatal clinic in the Koumassi commune by staff of Projet RETRO-CI, a public health partnership between C?te d'Ivoire's Ministry of Public Health and the US Centers for Disease Control and Prevention (CDC).4 At the time of our study, the programme included group counselling before HIV testing, conducted by trained social workers, followed by private sessions with social workers during which individual women accepted or refused HIV testing, and HIV testing; counselling two weeks after the test by trained social workers or programme doctors; and, for women whose test results were positive for HIV-1, monthly follow up visits with a programme midwife before starting free prophylaxis with a short course of zidovudine at 36 weeks' gestation; and zidovudine before and during labour.4 Programme staff informed women about the risks of HIV transmission through breast feeding but did not advise against it. During the programme's first 15 months of operations, from February 1998 to the end of May 1999, HIV testing was offered to 9657 women, of which 6982 (72%) accepted the test. (Projet RETRO-CI conducted a randomised controlled clinical trial of the efficacy of short course zidovudine at the clinic from April 1996 to February 1998.4) Of the 884 women who tested positive for HIV-1, 395 (45%) received their test results. Only 118 (35%) of the 333 women who tested as positive for HIV, who received their test results, and who were invited to return for follow up visits during this period eventually started taking zidovudine. Of the 215 women who did not start taking zidovudine, 181 (84%) had refused to return or discontinued follow up visits. Another 34 (16%) were lost to follow up or removed from the programme because of early delivery, abortion, premature birth, death, or laboratory ineligibility; for example, unacceptably low haemoglobin levels (Projet RETRO-CI, unpublished data).4 At the request of Projet RETRO-CI, we studied women's non-participation in follow up visits before starting prophylaxis.

    Methods

    Twenty four of the 27 women described their interactions with programme staff or their views about the programme when explaining their refusal or discontinuation of follow up visits; 14 did not believe their HIV positive test results; four described personal factors.

    Experiences at the programme

    Interactions with programme staff

    Some women were dissatisfied with how HIV testing had been explained—for example, "If had talked about AIDS from the start, I would not have taken the test because I am afraid to know that I'll die from such a horrible disease" (interviewee 185, aged 22; refused follow up visits); others were unhappy with counselling after the test—for example: "The social worker told me I was negative and then she said that my blood was not clean. How can you be negative and have dirty blood? It is nonsense" (interviewee 183, aged 24; refused).

    Some women were afraid of the staff—for example: "I did not want to continue the pregnancy . I was afraid to come back when I finally decided to keep the infant. I thought the doctors would chase me away; would yell at me" (interviewee 172, aged 20; refused); "I came for the appointment, but unfortunately I went to see a clinic midwife who had been seeing me. She told me that I did not have an appointment, so I did not know which midwife to see. I didn't know whom to ask, and I was afraid of being yelled at in front of the other pregnant women. So I went home, and I did not do anything else because I was discouraged" (interviewee 179, aged 36 (discontinued follow up visits)).

    Four of the 13 women who had discontinued follow up visits could not find programme staff when they returned for their follow up appointments—for example: "I waited for more than one hour, but I did not find anyone. I continued my visits to . I did not have the courage to return" (interviewee 162, aged 20; discontinued); "I thought it was impossible to continue if I missed an appointment. I was afraid of the midwife's reaction. I was afraid to come back" (interviewee 166, aged 21; discontinued).

    These responses indicate the importance of positive demeanour of the staff and clear explanations of the programme's procedures—for example, women who cannot complete follow up visits need to know that they will be welcomed, not scolded, for returning again. When women return, staff members must be available to meet them. Training for programme staff may be necessary in interaction skills, punctuality, etc. Additionally, periodic supervision and occasional interviews with women after their staff contacts may be useful for gauging the extent to which staff use their skills appropriately. The results of supervision and exit interviews need to be reviewed with staff promptly, and recurring issues need to be dealt with in subsequent training and supervision.

    Views about the programme

    Some of the women did not believe that prophylaxis was effective—for example: "We are told that the virus passes in the blood and my infant shares my blood. The contamination between me and my infant had already happened, so no hope of saving it. We have always been told that you can't cure AIDS, so the medications that I heard about are nothing but an illusion for me" (interviewee 186, aged 26; refused). The handling of blood specimens caused concerns: "The doctors can make mistakes with the blood during the test" (interviewee 171, aged 24; refused), as did fears that participation would lead to serostatus disclosure: "I wanted to think about it before deciding because I wanted to see how I could come back here without having someone I know learn about it. My husband might see me with the medicines, and he will want to know what they are for. That way he will find out about my result. Even the location bothers me, because everyone who comes to the clinic knows what goes on . As soon as a pregnant woman is seen coming here, it's known right away that she is seropositive" (interviewee 180, aged 24; refused). Costs also created barriers: "I was not able to complete any appointments, because of money for the ultrasound examination. If I don't have it, I won't be followed up by the midwife" (interviewee 175, aged 19; discontinued).

    Programme staff need to ensure that their clients have up to date information on the interventions that are proposed to them. When, as is the case at the Abidjan facility, services for the prevention of transmission from mother to child are separate from other perinatal services, changes in the physical layout of service delivery may reduce the likelihood of unwanted visibility that can be associated with participating in interventions. Integrating prevention services for transmission from mother to child with other services for mothers and children may be helpful. Finally, programme policies could be modified to reduce or eliminate fees that impede participation.

    Disbelief of test results

    Fourteen of the women did not believe their HIV positive test results—for example: "I do not touch sharp objects that belong to other people; I have known only two men in my life, and I think they are not positive" (interviewee 159, aged 35; refused). "I was negative on my first test, and I have not had any changes in behaviour or partners" (interviewee 173, aged 30; refused). All three women who had discontinued the follow up visits for this reason added that they had had no intention of returning again—for example: "I'm sure that I am negative and my baby is fine; it's not sick. If I were positive like they say, I would not be in such good shape! I told the midwife that I would participate because I wanted to get away from her" (interviewee 165, aged 19; discontinued).

    Programme staff need to explain that circumstances such as those described in the responses above, and which women may interpret as contributing to, or as being indicative of, a reduced risk or no risk of HIV infection, do not necessarily do either. Women must have accurate information about the circumstances of risk and effective prevention measures.

    Personal reasons

    These reasons included highly personalised reactions—for example: "I was ashamed of myself, to realise that I was infected by AIDS" (interviewee 186, aged 26; refused)—and descriptions of disruptions in women's lives: "I did not see the midwife because the social worker told me to come back another day. But I could not return because my house burned down and I had to move to Marcory . This was a long distance for me, and I didn't have enough money to come here several times" (interviewee 170, aged 22; discontinued).

    Although programmes cannot deal with unexpected events that affect women's lives, these examples show the importance of staff demeanour that is supportive of women's feelings and programme policies that are responsive to circumstances that may impede their participation—for example, the costs of transport to the programme could be covered.

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