Paper: Barriers to access prevention of mother-to-child transmission for positive women in a well-resourcs setting in Vietnam

Nguyen 2008

Barriers to access prevention of mother-to-child transmission for positive women in a well-resourcs setting in Vietnam

Reference:

Nguyen, T. A., Oosterhoff, P., Ngoc, Y. P., Wright, P., & Hardon, A. (2008). Barriers to access prevention of mother-to-child transmission for HIV positive women in a well-resourced setting in Vietnam. AIDS research and therapy, 5(1), 7

Abstract

Background: According to Vietnamese policy, HIV-infected women should have access at least to HIV testing and Nevirapine prophylaxis, or where available, to adequate counselling, HIV infection staging, ARV prophylaxis, and infant formula. Many studies in high HIV prevalence settings have reported low coverage of PMTCT services, but there have been few reports from low HIV prevalence settings, such as Asian countries. We investigated the access of HIV-infected pregnant women to PMTCT services in the well-resourced setting of the capital city, Hanoi.

Methods: Fifty-two HIV positive women enrolled in a self-help group in Hanoi were consulted, through in-depth interviews and bi-weekly meetings, about their experiences in accessing PMTCT services.

Results: Only 44% and 20% of the women had received minimal and comprehensive PMTCT services, respectively. Nine women did not receive any services. Twenty-two women received no counselling. The women reported being limited by lack of knowledge and information due to poor counselling, gaps in PMTCT services, and fear of stigma and discrimination. HIV testing was done too late for optimal interventions and poor quality of care by health staff was frequently mentioned.

Conclusion: In a setting where PMTCT is available, HIV-infected women and children did not receive adequate care because of barriers to accessing those services. The results suggest key improvements would be improving quality of counselling and making PMTCT guidelines available to health services. Women should receive early HIV testing with adequate counselling, safe care and prophylaxis in a positive atmosphere towards HIV-infected women.

METHODS

52 HIV-positive women; Pregnant women; involving workshops; individual in-depth interviews, bi-weekly meet- ings with the group, household visits, and counselling via a telephone hotline

Fifty-two HIV positive women enrolled in a self-help group in Hanoi were consulted, through in-depth interviews and bi-weekly meetings, about their experiences in accessing PMTCT services.

Inclusion criteria were women who found out that they were HIV positive before or during pregnancy and had completed the pregnancy. The women were enrolled in the study at different stages of pregnancy, between 12 weeks and 40 weeks.

The researcher participated as co-facilitator in work- shops on creative communication aimed at helping the women to communicate better about the many problems they experience in relation to their HIV infections. During the workshop, the researcher observed and collected their concerns through both oral and physical expressions and stories. These workshops also helped the researcher to gain trust from women whose stories constitute the data of the study.

Inclusion criteria were women who found out that they were HIV positive before or during pregnancy and had completed the pregnancy. The women were enrolled in the study at different stages of pregnancy, between 12 weeks and 40 weeks.

They were interviewed for on average two hours about their ANC seeking behaviours in relation to PMTCT and about their use of and access to PMTCT services including: HIV testing and counselling, ARV prophylaxis for them and their children, and replacement feeding. Retrospective data was collected not on only one occasion but through individual in-depth interviews, bi-weekly meet- ings with the group, household visits, and counselling via a telephone hotline.

They were interviewed for on average two hours about their ANC seeking behaviours in relation to PMTCT and about their use of and access to PMTCT services including: HIV testing and counselling, ARV prophylaxis for them and their children, and replacement feeding. Retrospective data was collected not on only one occasion but through individual in-depth interviews, bi-weekly meet- ings with the group, household visits, and counselling via a telephone hotline.

STUDY CONTEXT

HIV infection is predominantly concentrated among injecting drug users, but increasingly among female sex workers, and is starting to spread to the general population.

HIV prevalence in Hanoi is low, the health system cannot provide ARV prophylaxis in all facilities, but only in referred hospitals at provincial and national level.

The majority of the women (49/52) reported that they had been infected by their husband and the remaining three were infected through sexual contact with a casual partner. Ten of them had graduated from college or university, two had finished primary school, and the rest had completed secondary and high schools. The majority was married and worked in the informal sec- tor. Only nine had health insurance.

The majority of the women (49/52) reported that they had been infected by their husband and the remaining three were infected through sexual contact with a casual partner. Ten of them had graduated from college or university, two had finished primary school, and the rest had completed secondary and high schools. The majority was married and worked in the informal sec- tor. Only nine had health insurance.

HIV prevalence in Hanoi is low, the health system cannot provide ARV prophylaxis in all facilities, but only in referred hospitals at provincial and national level.

FINDINGS

Not integrated family and ANC system

Fear of doing abortion among health workers

Lack of counselling pre or post HIV test

HIV guidelines mostly on key groups

Stigmatisation of women living with HIV

Lack of ARV access after being confirmed HIV-positive

Free ARV combination prophylaxis is supposed to be available in Hanoi, among the 35 women being tested before 36 weeks of gestation who should have been able to receive that treatment, only 4 received it

The women reported being limited by lack of knowledge and information due to poor counselling, gaps in PMTCT services, and fear of stigma and discrimination

HIV testing was done too late for optimal interventions and poor quality of care by health staff was frequently mentioned.

Half of these women (18) went to at least one or two more testing centers before finally accepting the result and trying to find out what to do about it.

HIV-infected women are extremely marginalized in society as HIV is highly stigmatized in Vietnam, making it very difficult for researchers to contact HIV-infected pregnant women

Many of the HIV-infected women did not even receive any post-test counselling. That happened because they were not tested until delivery so there was no time to provide counselling, or because the health staff gave the test result to other people and lost the opportunity to provide counselling. Even among those women who did receive counselling, the information provided was not sufficient to help them make decisions or cope with their problems, pp 9

Most of the guidelines, however, are adapted from the counselling guidelines for VCT sites which focus mainly on the high risk populations of drug users and sex workers, so that the counselling materials and training usually focuses on HIV prevention rather than on pregnancy or on care and support for HIV infected pregnant women [11,25].

Abortion is legally and socially accepted in Vietnam. Medical abortion is considered as an option among PMTCT interventions in many Asian countries [29-31]. However, many HIV infected pregnant women could not opt for abortion because they were offered HIV testing too late in their pregnancy. Even if they were tested early enough, some reported difficulties in accessing abortion services if they disclosed their HIV status to the health staff.

A weak point is that HIV, abortion and family planning counselling services are not integrated; health care workers suspected a large loss of follow up although no numbers were available [25,23]. Pp 10

Afraid of access HIV testing : HIV  

Fear of stigma and discrimination : not to access HIV testing

Many women told us that fear of stigma and discrimination was the most important barrier for them to use HIV testing services [33]. As the epidemic in Vietnam is still concentrated among drug users and sex workers, HIV infection has been associated with "social evils" and "immoral behaviour" [34]. An HIV test is not simply about information; it involves social relationships and strong emotions. Most HIV-infected people are fearful of the result and of other people knowing their status and believe that if they are found to be positive, their test result will not remain secret [8,35]. The official notification system follows a public health approach, which has been applied to control infectious diseases in Vietnam for long time. In that system, the positive HIV test results are shared with health staff at district and commune levels, supposedly to ensure care for the HIV-positive person in the community. In the cases when pregnant women were tested only when they came to the hospital already in labour, their test results were shared with their relatives, without asking for consent. To keep their test results con- fidential, women who suspect their status and know how the system works often provided false names and addresses to avoid the official notification system [35]. Pp 10

Normalisation of HIV related to services in ANC facilities

A positive atmosphere in the ANC facilities should be promoted by normalizing HIV related services and undertaking behaviour change communication campaigns aimed at the health facilities. Feedback from service users should be used as one way to evaluate the quality of service. Pp 10

Stratified HIV reports of pregnant women to women’s agency to disclose or not her HIV status

On the other hand, women who were notified through the official system of their HIV positive status reported the lack of support from family, social isolation and poor care in health facilities [35]. The results of the study suggest that it would be better to make HIV testing anonymous for pregnant women and allowing HIV positive pregnant women choice in disclosure routes as well as where to use other services.

Client-friendly approach

Finally, the health facilities should not only make ARV available but also develop a client-friendly approach to distribute medication with adequate counselling on its use and adherence, to fulfil the basic requirements for good patient management. Pp 10/11

The importance of understanding PMTCT provision in Souteast Asia with Low-prevalence countries

These results not only point the way to improvements in provision of PMTCT in Vietnam but may also contribute to the picture of PMTCT in low-prevalence countries, especially in Southeast Asia, which may share features with that in the better-described systems in sub-Saharan Africa but in other ways may be different, and may need different investments to provide needed services.

Nguyen, Thu Anh, 2008

VIETNAM Study context: Barriers to access prevention of mother-to-child transmission for positive women in a well-resourcs setting in Vietnam We investigated the access of HIV-infected pregnant women to PMTCT services in the well-resourced setting of the capital city, Hanoi. HIV-infected women are extremely marginalized in society as HIV is highly stigmatized in Vietnam,

Fifty-two HIV positive women enrolled in a self-help group in Hanoi were consulted, through in-depth interviews and bi-weekly meetings, about their experiences in accessing PMTCT services. The researcher participated as co-facilitator in work- shops on creative communication aimed at helping the women to communicate better about the many problems they experience in relation to their HIV infections.

There have been few reports from low HIV prevalence settings, such as Asian countries. In a setting where PMTCT is available, HIV-infected women and children did not receive adequate care because of barriers to accessing those services. The majority of the women (49/52) reported that they had been infected by their husband and the remaining three were infected through sexual contact with a casual partner.

Only 44% and 20% of the women had received minimal and comprehensive PMTCT services, respectively. Nine women did not receive any services. Twenty-two women received no counselling. Only nine have public insurance

Poor knowledge due to inadequate counselling Fear of stigma and discrimination HIV prevalence in Hanoi is low, the health system cannot provide ARV prophylaxis in all facilities, but only in referred hospitals at provincial and national level. Even among those women who did receive counselling, the information provided was not sufficient to help them make decisions or cope with their problems, pp9

Late HIV testing, almost deliver the baby Afraid to access HIV testing Lack of ARV access: Lack of information about Family planning and PMTCT services

The results suggest key improvements would be improving quality of counselling and making PMTCT guidelines available to health services. Counselling can play an important role in increasing access to PMTCT services. Women should receive early HIV testing with adequate counselling, safe care and prophylaxis in a positive atmosphere towards HIV-infected women.