| Literature DB >> 35682255 |
Nelsensius Klau Fauk1,2, Lillian Mwanri1, Karen Hawke3, Leila Mohammadi4, Paul Russell Ward1.
Abstract
Human Immunodeficiency Virus (HIV) infection adds a significant burden to women in Low- and Middle-Income Countries (LMICs), often leading to severe detrimental impact, not only on themselves, but also on their families and communities. Given that more than half of all people living with HIV globally are females (53%), this review seeks to understand the psychological and social impact of HIV infection on Women Living with HIV (WLHIV) and their families in LMICs in Asia, and the interrelationships between one impact and another. A systematic review was conducted to find literature using the following databases: Medline, PsycINFO, CINAL, Emcare, Scopus and ProQuest. Research articles included in this review were selected based on the following inclusion criteria: conducted in LMICs in Asia, published in English language between 1 January 2004 and 31 December 2021, had full text available, involved WLHIV (married and unmarried) and explored the psychological and social impacts of HIV on these women and their families. Critical appraisal tools developed by Joanna Briggs Institute (JBI) were used to assess the methodological quality of the studies, and thematic narrative synthesis was used to analyse the findings. A total of 17 articles met the inclusion criteria. The review showed that HIV has a range of negative psychological consequences on WLHIV, such as stress, fear, worry, anxiety and depression, as well as social impacts on the women and their families, including stigma, discrimination and family separation. The findings indicate the need for targeted interventions-specific to WLHIV-that address the psychological challenges, stigma and discrimination these women and their families face. These interventions should also incorporate education and sustainable support structures for WLHIV and their families.Entities:
Keywords: Asia; HIV-affected families; WLHIV; low- and middle-income countries; psychological and social impact
Mesh:
Year: 2022 PMID: 35682255 PMCID: PMC9180788 DOI: 10.3390/ijerph19116668
Source DB: PubMed Journal: Int J Environ Res Public Health ISSN: 1660-4601 Impact factor: 4.614
Figure 1PRISMA Flow diagram of systematic literature search: records identified, screened, eligible and included in the review.
A description of the included studies in alphabetical order.
| Author/Year | Study Location | Study Design/Study Aim | Number of Participants/Type of Participants | Analysis | Main Themes of the Impact HIV on WLHIV and Their Families |
|---|---|---|---|---|---|
| 1. Azhar, 2018 [ | India | (i) Qualitative design In-depth interview To explore how stigma, social isolation, and depression affect cisgender women living with HIV in Hyderabad, India | (i) 16 WLHIV Majority: widowed Some: married Between 18 to 50 years old Mean age: 37.25 years | Thematic analysis | Feeling sad and bad due to contracting HIV Feeling embarrassed due to changes in physical appearance Psychological pressure and suicidal ideation due to stigma and discrimination by other family members The belief about negative attitudes and behaviour of non-infected people towards PLHIV From family members: Social isolation by family members Refusal by family members to share food and eating utensils Avoidance by family members From healthcare professionals: Being left untreated by healthcare professionals Being isolated in untended and separated rooms in healthcare facilities |
| 2. Chi, et al., 2010 [ | Vietnam | (i) Qualitative design In-depth interview To explore their reflections, concerns and dilemmas related to reproductive decisions | (i) 13 WLHIV 7 married 6 widowed 30 years old and older Participants were recruited using convenient sampling technique Participants were part of a larger research project that investigated reproductive decisions among WLHIV | Thematic analysis | Fear of dying leading to mother choosing to terminate pregnancy Feeling worried about transmitting HIV to unborn baby Feeling worried about poor economic condition and inability to take care of the child Fear of children being stigmatised and discriminated against within the community due to mother’s HIV status Fear of children being denied from school admission Teacher told other children not to play with them. Children were placed at a separate desk by teacher and isolated from friends |
| 3. de Souza, 2010 [ | India | (i) Qualitative design In-depth Interview To understand women’s experience of power and powerlessness | (i) Two WLHIV Remarried and widowed 31 and 33 years of age. Participants were recruited using purposive sampling technique Participants were recruited from or part of a larger study identifying NGO practices to mobilize communities for HIV/AIDS prevention. | Content analysis | From parents and siblings From parents-in-law From community members |
| 4. Fauk, et al., 2021 [ | Indonesia | (i) Qualitative design In-depth Interview To explore perception of PLHIV about drivers of stigma and discrimination towards them within families, communities and healthcare settings | (i) 52 WLHIV and 40 MLHIV Married Unmarried (divorced, widowed and never married) Ranged between 18 and 60 years old Participants were recruited using the snowball sampling technique | Thematic analysis | From family members and in-laws Separation of and giving a sign to eating utensils Separation of their children from them Being labelled as sex workers From community members Refusal of sharing foods and drinks they have touched Being labelled as sex workers, people with bad behaviours and immoral From healthcare professionals Delay of treatment Having their HIV status being spread by healthcare professionals Being labelled as sex workers |
| 5. Halli, et al., 2017 [ | India | (i) Quantitative design: Cross-sectional study To examine HIV/AIDS-related stigma and discrimination in a high-HIV-prevalence district in India | (i) 633 married WLHIV Married Ranged between 15 and 29 years old. Participants were randomly selected from a unique cross-sectional quantitative study conducted among HIV-positive women in Bagalkot District of Karnataka, India. | Bivariate analysis and multivariate logistic regression models | From parents and siblings From husband and husband’s family members From community members (friends and neighbours) Sociodemographic factors associated with stigma and discrimination from husband and husband’s family members against WLHIV: Occupation and age of the husband Higher age gap between spouses and poor household status Older age of the husband and lower household economic status |
| 6. Halimatusa’diah, 2019 [ | Indonesia | (i) Qualitative design Semi-structured and unstructured interview To explore the struggle of WLHIV in dealing with the moralisation of HIV in Indonesia | (i) 33 WLHIV Married and widowed 18–45 years old Participants were recruited using purposive and snowball sampling techniques | Thematic analysis | Feeling shocked, upset and angry Due to their perceptions that they are good wives who only have sex with their husbands Self-blaming Due to unprotected sex, they engaged in with multiple partners From in-laws Being chased out of late husband’s family house |
| 7. Ismail, et al., 2018 [ | Indonesia | (i) Qualitative design In-depth interview To describe the concerns of women infected with HIV by their IDU husbands | (i) 12 WLHIV Married 20–35 years old Participants were recruited through a non-governmental organisation | Content analysis | Feeling shocked, upset and angry Due to being infected by their spouses Denying HIV infection Due to their perceptions that they are good wives and do not have sex with other men Concern about their children’s future From parents and in-laws Separation of and giving a sign to eating utensils Being accused of the death of their spouses: accusation of transmitting HIV to their spouses |
| 8. Liamputtong, et al., 2009 [ | Indonesia | (i) Qualitative design In-depth interview To examine community attitudes toward women living with HIV and AIDS at the present time from the perspectives of women in Thailand. | (i) 26 WLHIV Married and unmarried (divorced, widowed, separated and never married) 20–50 years old Participants were recruited using purposive sampling technique | Thematic analysis | The belief that people will discriminate against them if their HIV status is known to others From community members (friends and neighbours) Being labelled as bad women who have sex with many men From healthcare professionals Being accused by nurses as the ones who transmitted HIV to their spouses From employers Being asked by employers to leave their jobs due to HIV-related physical appearance (face turned black) |
| 9. Mathew, et al., 2019 [ | Thailand | (i) Qualitative design Semi-structured qualitative interview To explore the perspectives of young adults living with HIV in Bangkok regarding the influence of stigma and discrimination in education, employment, health care, personal relationships, and perceptions of self | (i) 14 WLHIVs and 9 MLHIV. Single 15–24 years old Participants were recruited using convenient and purposive sampling techniques | Thematic analysis | The belief that other people will dislike and show negative reactions if one’s HIV status is known The belief that one will be excluded or denied from a certain job because of one’s HIV status |
| 10. Nguyen, et al., 2009 [ | Vietnam | (i) Qualitative design In-depth interview To explore the experience of 30 WLHIV in Vietnam in accessing HIV-related postnatal care, the role of felt and enacted stigma in accessing services, and the effects of participation in a self-help group on utilization of available services. | (i) 30 married WLHIV Married Ranged between 25 and 35 years. Participants were recruited using convenient sampling technique Participants were recruited through healthcare facilities and referral of healthcare professionals | Thematic analysis | From husband’s family (mother and sister) Left by in-laws due to HIV-positive status of WLHIV Asked by in-laws to go back to their parents Avoided by in-laws From community members Unaccepted and avoided by community members Community members being cynical towards them From healthcare professionals Left unattended and untreated by healthcare professionals in hospitals From husband’s family (mother and sister) Bowls and chopsticks were boiled by sister-in-laws Refusal by in-laws to live together with them Their children are kept away from them by in-laws |
| 11. Paxton, et al., 2005 [ | India, Indonesia, Thailand, the Philippines | (i) Quantitative design: Cross-sectional study To develop an understanding of the nature, pattern and extent of AIDS-related discrimination in several Asian countries | (i) 764 PLHIV in four countries (India 302; Indonesia 42; Thailand 338; the Philippines 82) 40% married 50% widowed 10% single Not reported Participants were recruited using snowball sampling technique. | Chi square test | From healthcare professionals Refusal of treatment or a delay in the provision of healthcare Being coerced into an HIV test Undergoing mandatory testing while they were pregnant or because of the illness of a child Being advised not to have children after diagnosis without giving information about prevention of mother-to-child transmission. Being coerced into an abortion or sterilization after diagnosis Losing or being denied private insurance once their HIV status was known and discriminated in relation to private insurance From community members Being refused entry to, asked to leave or removed from a public establishment (including places of religious worship) Changing their place of residence due to their HIV status Being excluded from social functions due to their status Being physically assaulted because of their status Being required to disclose their HIV status in order to enter another country Being excluded from usual activities Being excluded from associations or clubs due to their status and/or restricted in their ability to meet with other PLHIV From family members Being excluded from usual household activities such as cooking, sharing food or eating implements and sleeping in the same room as others. Losing financial support from their spouse or other family members due to HIV status Being chased her out of her home by mother in-law due HIV status At workplace Loss of jobs Change in job description or duties Loss prospects for promotion children were denied admission into schools Children involuntarily taken away from them due to their HIV status Desertion/abandonment by their spouse because of their diagnosis |
| 12. Qin, 2018 [ | China | (i) Quantitative design: Cross-sectional study To explore the psychological distress of HIV-infected pregnant women, and analyse the possible influencing factors | (i) 194 pregnant WLHIV Married The average age of the participants was 25.1 ± 5.8 years Participants were recruited using convenient sampling technique | Multiple linear regression analysis | Anxiety and depression Factors associated with psychological distress Family misfortune, Medicaid, chronic disease or high-risk pregnancy, viral load, CD4 þT cell count, infection and confidentiality |
| 13. Srivastava, et al., 2017 [ | India | (i) Qualitative design Focus group discussion To explore perspectives of WLHIV on their mental health and the role and impact of Accredited Social Health Activity (ASHA) support on mental health after participation in a community-based intervention | (i) 16 WLHIV who were mothers Not reported Mean age was 32.6 They selected from a group of 34 WLHIV who participated in ASHA intervention | Content analysis | Depressed mood, anxiety and suicidal ideation Factors associated with psychological distress: Experience of stigma and discrimination by neighbours and relatives Experience of stigma and discrimination by healthcare professionals Concerns about their children’s life and future |
| 14. Subramaniyan, et al., 2013 [ | India | (i) Qualitative design In-depth interview To explore the difficulties faced by rural HIV positive mothers during the intra-natal period. | (i) 21 WLHIV who were mothers Not reported Ranged between 20 and 39 years. Not reported | Content analysis | From healthcare professionals Avoidance of physical examination, rude behaviour such as the throwing of records at the face, discriminatory comments, unnecessary referrals and even refusal to provide intra-partum services Leading to women concealing their HIV status, not accessing healthcare services or looking for healthcare services in other places where their HIV status is unknown to healthcare providers |
| 15. Thomas, et al., 2009 [ | India | (i) Qualitative design Focused group discussion To explore the perceptions and needs of mothers living with HIV to gain greater insights into the challenges they face in relation to their health seeking behavior, fears around disclosure, and issues related to stigma and discrimination. | (i) 60 WLHIV Married and unmarried Ranged between 23 and 42 years Participants were recruited from two maternity hospitals, a large sexually transmitted disease (STD) clinic and antiretroviral therapy (ART) clinic | Content analysis | From spouses and in-laws Separation of eating utensils Refusal of sharing personal belongings From healthcare professionals Avoidance of physical examination Putting WLHIV in rooms with no facilities |
| 16. Zhang, et al., 2022 [ | China | (i) Qualitative and quantitative (mixed-method) design Structured questionnaire In-depth interview To investigate stigmatization and social support of pregnant women with HIV or syphilis in eastern China | (i) 93 WLHIV Not reported Ranged between ≤ 20 and ≥ 35 years Participants were recruited at a local women and children hospital | Descriptive analysis; | Feeling terrible about their HIV status From community members From healthcare professionals Stigmatising attitudes (talking about patients’ HIV status) |
| 17. Yang, 2015 [ | Cambodia | (i) Qualitative design In-depth interview To explore women’s perspectives on their life changes after being infected with HIV by their husbands. | (i) 15 WLHIV Married Ranged between 30 and 42 years Participants were recruited using snowball sampling technique | (i) thematic analysis, | Children live with other families for better housing and due to mother’s sickness |
Figure 2A simplified conceptual model for the psychological and social impacts of HIV on individuals and families.
Qualitative evidence of the impact of HIV on WLHIV and their families.
| CATEGORY | SELECTED QUOTES |
|---|---|
| PSYCHOLOGICAL IMPACT OF HIV ON WLHIV AND THEIR FAMILIES | |
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Distress and fear related to maternal and child health | “I fear my child will be infected with HIV. We are HIV positive and of course there is a high probability for the child of getting infected” Female participant, Vietnam [ |
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Depression, stress and anxiety related to the care of the child and the child’d future | “I feel why should I live in this world, or for what am I living? Sometimes I am completely down, depressed emotionally. Sometimes I have feeling of even killing myself or committing suicide.” Female participant, India [ |
|
Feeling sad, bad and embarrassed and self-blaming | “Yes, madam, every day I am very sad about myself. Because we cannot move freely with everyone, like regular people... At that time [when I was first diagnosed], I felt very bad about myself. I thought, ‘Why should I live this life?’….” Female participant, India [ |
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Suicidal ideation | “My mental illness affects my physical health; [I] felt like committing suicide.” Another woman shared how mental illness and suicide had touched not only her own life, but that of her husband: “My husband died committing suicide because he too suffered mental illness. I also feel the same way.” Female participant, India [ |
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| “Well, I was afraid that they would dislike me because some people heard or saw the news about HIV and understood it while some people didn’t…I didn’t know which of them would accept it and I didn’t want to be bothered by it, so I didn’t tell and that was it.” Female participants, Thailand [ |
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From family members Siblings and parents | |
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From parents-in-law and sisters-in-law | “Since my husband died and I cannot work to provide food for my family-in-law, they treat me with a cold heart. I cannot live there anymore. My mother-in-law sold the house that my husband and I built because it was not yet registered in our names.” |
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From community members (friends, relatives, neighbours) | |
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From healthcare professionals | “When they knew my HIV status, they shouted at me and did not allow me to sit, even when I was bleeding and weak. They asked other patients to keep away from me. Then they transferred me to a special room. When I gave birth, there was no staff with me.” Female participant, India [ |
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From employers | “At the beginning of my illness, my face turned black. I did not know about this illness and my husband had already died. I had to work to bring up my two children. But later on I could not do so because my face was black and I was very thin. I was much thinner than I am now. I was asked to leave my job. When I went to apply for any other job, no one took me in and this had an impact on my children.” Female participant, Thailand [ |
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Driving factors for stigma and discrimination against WLHIV Fear of contracting HIV and lack of knowledge about HIV | “As most people would not know how we actually get HIV/AIDS, they |
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Negative social perception and moral judgement about HIV and PLHIV | “People in community tend to see this disease as |
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Against HIV-affected family members as a whole | |
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Against children of WLHIV within communities and schools | “My neighbour would not let her child play with my daughter.” Female participant, Thailand [ |
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Due to the sickness of the mothers and to get safe life/better home for children with other family | “I had 9 children, but 2 are already dead. I still have 7 children, but only 2 stay with me. When we [she and her husband] were seriously sick, we gave away our children, one to my sister-in-law, one to my sibling. I was at hospital for 8 months. I thought that I was about to die, so all my relatives took my children, one for each”. Female participant, Cambodia [ |