“If anyone asks, I just keep silent”: the impact of stigma on Vietnamese women living with HIV

Tong Thi The Ha, an HIV-positive woman, at home in Dien Bien Phu, Vietnam. Image by UN Women/Nicholas Axelrod, and Luke Duggleby. Creative Commons licence.

A recent study details how gender-based stereotypes and culturally defined roles negatively impact how Vietnamese women living with HIV engage with healthcare, their coping strategies and their support systems.

According to Dr Lin Chunqing and colleagues, women living with HIV in Vietnam avoid sharing their status, isolate from family and friends, and internalise the guilt and shame associated with their condition. This can lead to delays in accessing healthcare, reduced employment opportunities and less ability to fulfil traditional family-caring roles. But the study also highlights women’s resilience, determination and the support they get from family and peers.

HIV stigma continues to be an obstacle to HIV treatment and care. Women and girls – who comprise a large proportion of people living with HIV worldwide – are more likely to experience HIV-related stigma and more susceptible to internalising those experiences. In other words, they may turn social narratives, perceptions and labels about HIV and people living with HIV into personal views and self-perceptions. This process of internalising stigma can lead to developing anxiety and depression, and leaving healthcare needs unmet.

In Vietnam, behaviours that can lead to HIV acquisition such as injecting drug use and sex work are perceived as social misconduct, immoral or criminal behaviours, and are defined as ‘social evils’ by the country’s constitution.

Women in Vietnam face significant disparities in economic and employment opportunities, with lower rates of workforce participation and access to paid work. They navigate a religiously diverse but predominantly patriarchal culture, that places a lot of emphasis on women’s modesty, purity, and virtue.

These cultural and religious beliefs can affect how women with HIV understand themselves. For example, Buddhist beliefs about karma can sometimes lead to perceptions that HIV is a result of wrongdoing in a previous life. Confucian concepts of hierarchy, which traditionally see women as supportive caregivers, can restrict their sense of autonomy. Taoist ideas of harmony can lead to a subtle acceptance of life adversities and a less proactive approach to facing challenges.

With this background in mind, the new study aims to understand the intersecting burden of stigma, gender inequality and cultural beliefs for women in Vietnam.

In 2021 and 2022, researchers conducted in-depth interviews with 30 women living with HIV recruited through HIV clinics and community organisations in Hanoi, the capital city. Interviewees were all cisgender women and Kinh (the majority ethnic group). The researchers acknowledge that a limitation of their study is that it does not represent the experiences of rural women, ethnic minority women or transgender women.

Half of the interviewees were between 36 and 45 years old, 80% had some middle or high school education, and 70% had irregular or unstable employment. Two-thirds reported acquiring HIV through sex, less than half (43%) were married, one-third had a husband or partner living with HIV and most had either one (60%) or two (30%) children at the time of the interview.

Overall, women reported a reduction in HIV-related stigma and discrimination in Vietnam over the last two decades, potentially related to advances in the country’s HIV response. Nonetheless, cultural beliefs and gender biases still have a significant role in shaping attitudes and behaviours towards women living with HIV, as detailed below.

Gender-differentiated stigma

Women reported gender-based stereotypes and assumptions about their HIV status being linked to non-monogamous relationships or sex work, whilst men’s HIV was thought to be related to drug use. There were cultural expectations of female virtuosity, while men's risk-taking behaviour tended to be accepted.

“If men use drugs, their family has money, there are multiple reasons why they should be accepted. But I am a woman, if I get in trouble, people will say terrible things about me. For example, she did bad things and got the disease, so now she must face the consequences”.

They also reported double standards of Vietnamese patriarchal culture that meant a husband was often encouraged to leave a marriage if her wife got HIV first, whilst the wife was more likely to maintain a marriage if it happened the other way around. Even when women contracted HIV from their partners, they faced stigma and social isolation rather than sympathy.

Women living with HIV tended to experience more directly discriminatory behaviours than their male peers. There was a general sense that women are emotionally and physically weaker, and wouldn’t retaliate in the same way as men:

“That’s why even though people do discriminate, they dare not behave [with men] they way they do to [women with HIV]”.

Gender roles and family responsibility

In Vietnamese culture, women are often expected to assume multiple family roles. They are meant to care for both her and the husband's family, handling household chores and looking after the children, whilst men are expected to provide the main source of income and are not expected to get involved in domestic tasks.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

culture

In a bacteria culture test, a sample of urine, blood, sputum or another substance is taken from the patient. The cells are put in a specific environment in a laboratory to encourage cell growth and to allow the specific type of bacteria to be identified. Culture can be used to identify the TB bacteria, but is a more complex, slow and expensive method than others.

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe. Anxiety disorders are conditions in which anxiety dominates a person’s life or is experienced in particular situations.

depression

A mental health problem causing long-lasting low mood that interferes with everyday life.

contagious

An infection that can be spread easily, by casual contact.

Many of the women interviewed felt disappointment and faced discrimination from their families if HIV-related health issues prevented them from fulfilling these traditional roles. Some were threatened with being outed, resulting in many of them avoiding family contact to protect their privacy and wellbeing. 

“A few people from my husband family know about it (my HIV). I’m still threatened in terms of how I raise my child. If I didn’t let my daughter visit (my husband's family) there, they would tell everyone that I am HIV positive, and tell everyone to keep away from me.”

Modern Vietnamese society expects women to be both family caretakers and financial breadwinners, but there are widespread assumptions about the health of people living with HIV being impaired. Many interviewees had internalised this idea – and also the guilt and shame associated with their perceived failure to carry out their family role.

“I don’t have a voice in the family. The truth is that my health is not good, I can’t do anything for my family…Sometimes there is discrimination from my family, but I don’t blame them, although sometimes I feel self-pity, I really do…I can’t take care of my family, and my younger sister has to do it instead of me”.

Healthcare seeking challenges

Stigma in healthcare settings remained the biggest challenge for women living with HIV in Vietnam, who experienced avoidance, segregation, suboptimal care and breaches of confidentiality.

“I brought the referral letter and my medical record…,which has an HIV sign on the cover. Then I gave it to the nurse who stood outside the reception greeting patients…And she suddenly said out loud ‘Oh you got HIV, right?’ Then all the people waiting right next to me…stood a few meters away from me. They were afraid to come close.”

Taboos surrounding their sexuality, and fear of being recognised or their status being shared with their community, impacted women’s decision-making around HIV care, with some travelling longer distances to avoid local spaces. 

Internalised stigma based on misunderstandings of HIV made women cautious and hesitant to access care:

“Disease is disease. HIV is more than a disease, (it is) contagious. And the transmission happens just not in (sexual) relationship. I even lost confidence going to the beauty salon now. I do not have the confidence even go to hospital now”.

This reluctance to engage with healthcare could lead to misunderstandings and misinformation about treatment, leading to delays in seeking care.

Coping strategies and support systems

Understanding the prejudice and discrimination towards people living with HIV, women saw non-disclosure as the simplest way to maintain their relationships, secure employment and avoid stigma. Keeping their HIV status secret led women to isolate themselves and avoid taking medication in front of others.

Despite challenges, resilience and determination were also key to maintaining good health and having active and healthy lifestyles. In participants' words, it takes a lot of work to live “like a normal person” and be “very useful to society”.

“To be honest, I’m already determined. My life, no matter how hard it is, I will bear it on my own. So I just kept quiet. If anyone asks, I just keep silent. That’s all”.

Several participants described getting support from family members and also found comfort from peers, in groups of women living with HIV. These spaces helped them meet multiple needs, share personal matters, exchange resources and information, and motivate each other to overcome obstacles. Participants accompanied each other to healthcare appointments and looked after each other at times of ill health.

“I have developed more connections. I have gained more knowledge…We have been together for ten years. Honestly, I feel closer to them than to my blood relatives”.

Conclusion

The links between culture, gender norms and stigma exacerbate the challenges faced by women living with HIV in Vietnam. Their vulnerabilities must be addressed through a multi-layered approach.

Culturally rooted programmes with religious elements like mindfulness, balance and meditation may help support women in coping with stress induced by stigma and gender-based bias. Additionally, vocational training and money lending programmes have the potential to enhance financial stability and personal autonomy.

Interventions engaging partners and family members – who can be both a source of stigma and support – may facilitate changes in gender-based family norms, encourage shared caregiving and promote health-seeking behaviour.

Lastly, changes are required at community and policy levels to dispel HIV misinformation, develop empathic views about people living with HIV and reinforce gender equity policies.

The researchers say that such an approach may lead progress towards gender equity and better health outcomes for women living with HIV in Vietnam.

References

Lin C et al. Navigating cultural and gender aspects of stigma among women living with HIV in Vietnam. Culture, Health and Sexuality, online ahead of print, 13 March 2024.

https://doi.org/10.1080/13691058.2024.2318428

Full image credit: November 30, 2022 - Dien Bien Phu (Vietnam). Tong Thi The Ha, a member of the Tai ethnic group, and is HIV+ was supported with a grant from UNWomen. She works in her vegetable garden in Dien Bien Phu town, Vietnam. Photo: UN Women/Nicholas Axelrod, and Luke Duggleby. Available at www.flickr.com/photos/unwomenasiapacific/52869088340/ under a Creative Commons licence CC BY-NC-ND 2.0.