Understanding HIV and AIDS-related stigma and discrimination in Vietnam

06/08/2007
From August 2002 through January 2004, the Institute for Social Development Studies and the International Center for Research on Women conducted research on HIV and AIDS-related stigma and discrimination in two Vietnamese cities: Can Tho and Hai Phong.
  1. Executive summary 

This research set out to describe the context in which stigma occurs and to document the experiences of stigma and discrimination among people living with HIV and AIDS and their family members. The research sought to explore the ways in which HIV-related stigma and discrimination intersect with stigmas that may adhere to injection drug users and sex workers, and to understand the ways in which gender and gender roles may affect these processes.

 

Fieldwork for this qualitative research study was conducted in selected communes of Can Tho from 4 – 19 January, 2003 and Hai Phong from 12 – 16 February, 2003 by trained researchers from the Institute for Social Development Studies. Structured thematic analysis of qualitative data gathered from over 250 participants transcripts indicates that HIV and AIDS-related stigma in Vietnam stems largely from two issues.

 

First, people in community generally understand the ways in which HIV is transmitted, but ambiguities persist, leading to fears of acquiring HIV casually through everyday contact with infected persons.

 

This leads people to take unnecessary, often stigmatizing, action with they perceive will prevent further transmission of the disease. A second important cause of HIV-related stigma relates to the fact that in the minds of community members, leaders and health care workers, HIV and AIDS are inextricably linked with injection drug use and sex work, which are both regarded as “social evils”. Particular complications were observed for injection drug users, widely perceived as people who prefer “indulging in play” rather than contributing meaningfully to society. Thus, judgments are passed against people living with HIV who are thought to have acquired the infection through behavior that are considered to be morally, socially and economically harmful to both family and society.

 

Findings also show that women living with HIV and AIDS tend to be more highly stigmatized than men due to a combination of the commonly-held assumption that HIV is acquired through immoral means, and social expectations that women should uphold the moral integrity of family and society while men can be more self-indulgent. While women tend to be “blamed” for acquiring HIV and AIDS, men are often forgiven by family and society. The consequences of stigma are also more severe for women, who are more frequently sent away from their family and separated from their children than men are.

 

It is also clear, however, that despite the prevalence of stigma associated with the disease, most of the people living with HIV and AIDS also receive love, support and care from their families and compassion from some members of their communities.

 

The study has concluded that more can and must be done to confront and address the root causes of HIV and AIDS-related stigma and discrimination in society, not just their effects. Firstly, programs are needed to reduce the fear of casual transmission of HIV and AIDS by delivering unambiguous, factual information about HIV and AIDS, and how and why it is and is not transmitted. Secondly, sincere, deliberate efforts are needed to delink HIV from “social evils” in policy, legislation, programming and the public imagination. Thirdly, the media should do more to reinforce these messages through positive portrayals of people living with HIV and AIDS. In the next phase of the study, ICRW, ISDS and the CHANGE Project will be taking these recommendations forwards.

 

  1. The overall objectives of this research project:

 

-Document experiences of people living with HIV and AIDS.

-Explore how HIV-related stigma interacts with other stigmas, specifically those associated with drug use and sex work.

-Investigate the role of gender in the causes and consequences of HIV-related stigma.

-Sensitize social organizations to stigma and its impact.

-Mobilize leaders to serve as advocates o­n behalf of people living with HIV and AIDS and their family members.

These objectives were explored through five key study components:

  1. A workshop entitled “Understanding and Confronting HIV and AIDS,” held in Hanoi in September 2002. This workshop brought together individuals working in a range of national and international NGOs as well as key grassroots social organizations, people living with HIV and AIDS and healthcare providers working in HIV and AIDS in Hanoi, Hai Phong and Can Tho provinces.
  2. The Institute for Social Development Studies assembled a Leadership Advisory Group (LAG) for the study. The LAG consisted of 12 highly placed and respected individuals based in relevant governmental departments and national organizations. The LAG provided advice and guidance o­n the research progress and developed action plans taking the findings of the study forward in their respective jurisdictions.
  3. The field research, conducted in January and February 2003.
  4. Data analysis.
  5. Dissemination and publication of the research results in both Vietnamese and English.

 3. The research project

 

3.1 Data collection process

3.1.1 Research methods

Due to sensitivity of the topic, it was decided that a qualitative approach would be most appropriate. The primary methods used to collect data were in-depth interview and focus group discussions (FGDs). Other methods used included observation, photography and the use of participatory techniques during FGDs such as matrix mapping and brainstorming. Before conducting interview or FGDs, researchers obtained the consent of respondents to participate and their permission to record the discussion.

 

Secondary sources were also consulted widely. Academic Journals, research reports, books, newspapers and TV broadcast o­n HIV and AIDS were explored, and further information was obtained from LAG members.

 

Focus group and interview guidelines were developed by the team, based o­n findings from the NGOs workshop and discussions with experts from ICRW and the LAG. These guidelines were refined and eventually finalized and compared with tools developed for Africa HIV-related stigma and discrimination studies conducted by ICRW with their partners in Ethiopia, Zambia and Tanzania.6 Data collection instruments were pretested and further refined during the fieldwork process.

3.1.2 Site selection

Through discussion with ICRW and the National AIDS Standing Bureau, two areas were selected for the research: Hai Phong City in the north and Can Tho city in the south. These two cities were selected o­n the basis of the following considerations:

+ These two provinces represent the two largest river delta areas in the country and they have relatively equal levels of socio-economic development.

+ Both provinces are experiencing an expanding HIV and AIDS epidemic.

+ Many intervention activities have been implemented in these provinces.

+ The research in these provinces could be facilitated by pre-existing relationships between ISDS and the two Provincial AIDS Standing Bureaus (PASB).

 

Based o­n the advice of the LAG and partners at the Provincial AIDS Standing Bureaus, it was decided that the research sites should be peri-urban with a fairly high density of people living with AIDS. The peri-urban location was considered important as these areas are undergoing rapid socio-economic development and change, including rising rates of drug use and sex work. They are wards in which the newly urbanizing populations mix with longer standing rural populations, and are socially and economically diverse. The two wards ultimately selected were Lam Son in Hai Phong and Xuan Khanh in Can Tho city. Prior to conducting the research, the PASB sent an official letter to the area selected to inform the local officials about the research and to request their permission to undertake the work.

 

3.2 Study sample

The research sample included people living with HIV and AIDS, their family members and people living in their communities. In selecting participants living with HIV and AIDS, we sought to interview those who were infected through injection drug use, those infected through sex work, and those who acquired HIV through other means.

 

The fieldwork for this study was carried out with close and active collaboration of the two PASBs, staff of district and wards’ health centers, and the wards’ people’s Committees (a local governance structure that includes elected representatives at the provincial, district and community level). People living with HIV and AIDS were selected mainly through introduction via the district health center and PASBs. Snowball sampling techniques were also employed to identify people living with HIV and AIDS, especially sex workers, in Hai Phong. Community members were selected with assistance from local collaborators.

In each site, the research sample included:

- Fifteen people living with HIV and AIDS (male and female): five who were reported to be infected due to sex work, five infected through drug injection use and five injected by other means (mainly the sex partners or spouses of IDUs and clients of sex workers).

- Fifteen male and female family members of people living with HIV and AIDS. After obtaining the permission of the interviewee living with HIV or AIDS, a close family member was asked to provide an interview. These participants included parents, spouses, siblings, lovers, other relatives and caregivers.

- In each ward, 64 community members participated in o­ne of eight FGDs (4 FGDs of men and 4 FGDs of the following age group 15-24; 25-34; 35-49; and over 50)

- Sixteen people were selected for participation in two FGDs: o­ne consisting of local authorities, and the other representatives of grassroots organizations.

- Several in-depth interviews were conducted with local leaders, including the Chairperson or Vice-Chairperson of the ward; the Secretary or Vice Secretary of the Communist Party; representatives of groups such as the Fatherland Front, Women’s Union, Youth Union, Red Cross, Veteran’s Association; and various religious groups.

- Additional key informant in-depth interviews were conducted with local health workers, teachers, and other members of the community.

The total number of participants in the study 271 exceeded original expectations of 188 participants.

 

3.3 The research team

The fieldwork was carried out by the research team at ISDS, which included researchers with particular experience conducting qualitative research o­n sensitive topics with hard-to-reach groups. Before conducting the fieldwork, members of the research team were trained o­n the conceptual framework of the study, interview guidelines and the other data collection techniques.

Each FGD was tape recorded and facilitated by a senior researcher. A note-taker recorded the proceedings and documented observations. In-depth interviews were conducted directly between the researcher and a study participant in his or her home.

 

3.4 Data processing and data analysis

Following data collection, all taped interviews and FGDS were transcribed, with around 20 percent translated into English for review by the ICRW team. The ISDS team was subsequently trained in the use of NVIVO 2.0 qualitative data management and analysis software by an ICRW consultant. The software was selected because it enables researchers to organize and assess complex qualitative data, and can also work using Vietnamese language script.

 

Through the training process, key domains for analysis were identified, data was coded, and a codebook and preliminary analytical framework were developed.

These tools were further refined in consultation with the Project Director from ICRW.

 

3.5 Scope and limitations of the research

The scope and focus of this research was to ob- serve, document and attempt to describe the nature of stigma experienced by people living with HIV and AIDS, its root causes and principal manifestations in specified areas of Vietnam. We were particularly interested in whether, and to what extent, HIV-related stigma overlapped with and was affected by other social stigmas affecting those at risk, specifically injection drug users and sex workers. Our aim was not to quantify this stigma or to measure its impact, but to document and describe experiences and to deter- mine underlying causes of stigma. Because so little is known about HIV-related stigma in the Vietnamese context, we felt it appropriate to focus our efforts in those geographical areas in which HIV is already present and making an impact. Although our sample was not quantitatively representative of the country as a whole (focused as it was in two urban areas o­nly), our findings do enable us to generate general izable principles, on the basis of which meaningful interventions can be developed (see Mitchell 1 983).

It is important to note, however, that in our sampling we omitted o­ne important group: men who have sex with men, a population likely to be at risk of HIV infection in Vietnam. Although we recognize the special vulnerabilities of these men and feel it would be appropriate to document their experiences, the timeframe of the project did not allow us to include them in our study.

By Khuat Thu Hong & Nguyen Thi Van Anh - Institute for Social Development Studies, Hanoi; Jessica Og

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