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BRIEF RESEARCH ARTICLE
Year : 2023 | Volume
: 67
| Issue : 1 | Page : 155-158
Experiences of stigma and discrimination of women living with HIV/AIDS in health-care settings of Kashmir
Sabah Jan1, Shazia Manzoor2, Javaid Rashid3
1 Researcher, Department of Social Work, University of Kashmir, Srinagar, Jammu and Kashmir, India
2 Associate Professor, Department of Social Work, University of Kashmir, Srinagar, Jammu and Kashmir, India
3 Assistant Professor, Department of Social Work, University of Kashmir, Srinagar, Jammu and Kashmir, India
Correspondence Address:
Javaid Rashid
Department of Social Work, University of Kashmir, Srinagar - 190 006, Jammu and Kashmir
India
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/ijph.ijph_485_22
Abstract
Stigma and discrimination create barriers for women living with HIV/AIDS (WLHA) in accessing quality health-care services, affecting their well-being and also increasing the number of cases. The current article studies issues of stigma and discrimination that WLHA experience in health-care settings and highlights the importance of building awareness and sensitivity regarding HIV among all health-care workers. This hospital-based study was conducted in an anti-retroviral therapy center in Kashmir. Twenty-one WLHA participated in the study. The WLHA internalizes stigma and experiences shock, guilt, anger, and numbness while receiving a diagnosis. The stigma is socially constructed, having very little medical or logical basis. Verbal abuse, gossiping, expression of shock and disbelief of health-care workers, discriminatory attitudes such as wearing multiple surgical gloves, denial of care and treatment, and disclosing their HIV-positive status without their consent to their families and others have been learned. These experiences in health-care institutions are disempowering for WLHA. Gender stereotyping and inequalities within health-care settings and the discriminatory approach of some health practitioners toward women is the main barrier to accessing the services for HIV prevention, treatment and support services.
Keywords: Discrimination, health care, Kashmir, stigma, women living with HIV
Despite the progress in public health inventions, there are still factors that prevent or limit patient access to HIV services.[1] Stigmatizing attitudes, convictions, and actions toward people living with HIV can hinder progress in HIV prevention, care, and treatment.[2] Gender inequalities and inequities in accessing health-care services, compounded by biological and socioeconomic vulnerabilities, make women more prone to HIV.[3] The current study is based in Kashmir. The scenario of HIV in the Kashmir region is complex, characterized by serious underreporting of cases, stigma and discrimination attached to the HIV disease, and other illness-and services-related concerns.[4] People do not want to disclose their status and suffer from stigma, victimization, and marginalization. Disclosing HIV is challenging and has many repercussions.[5] Dependence, injustice, abuse, discrimination, domestic violence, and patriarchal dominance have conventionally characterized the lives of women in Kashmir.[6] While HIV prevention, treatment, and support services across India for women living with HIV are improving and delivering adequate results, yet gender disparities undermine these efforts in Kashmir.[7]
This research is part of a hospital-based study conducted by researchers at anti-retroviral therapy (ART) center in Kashmir. To gain a better understanding of the experiences of women living with HIV/AIDS (WLHA) with health-care services, a phenomenological approach was used since this focuses intensely on how individuals experience a particular phenomenon. Every possible effort was made by the researchers to guarantee the privacy and confidentiality of the participants. Twenty-one participants [Table 1] who identified themselves as having HIV infection and gave voluntary informed verbal consent participated in the study. The data collection instrument consisted of a semi-structured interview schedule. The required ethical clearance was granted by the concerned institution of the Government of Jammu and Kashmir. Data analysis of the transcripts was accomplished using the process based on Colaizzi's method of data analysis in qualitative research.[8]
The data were structured into three themes, i.e., initial reaction on diagnosis, stigma, victimization, and discrimination. The narratives explored have put to fore very significant findings regarding the postinfection life of WLHA. HIV is a medical condition with social issues. In general, people internalize stigma before actually experiencing it directly. The stigma attached to the disease is such that people experience shock, guilt, anger, and numbness while receiving their diagnosis. In many studies, participants reported receiving a diagnosis as a “death sentence.” On similar lines, inferences drawn from the narratives in this study have showcased a wide range of issues that WLHA confront right from the point they test positive for the HIV virus. In general, the experience of learning about their positive status through a health professional in any health-care setting starts their suffering. Thereafter, all the spheres of a WLHA are impacted and all its routine life is drastically changed at personal, domestic, and social levels.
More often than not, the positive status is declared to people in a quite unprofessional and insensitive manner. It has been observed in the study that health care workers' approach at this initial phase puts WLHA in situations that have an indelible impact on them and their families as well. Participant 18 [Table 2] of this study was unaware of the disease and the stigma attached to it. While receiving her diagnosis from a person at a test center she understood something was terribly wrong; the expressions on the face of that health worker depicted that something was not normal. The participant was accompanied by her husband at the time of receiving a diagnosis, which shows that a positive support system at that time has a huge role to play in dealing with the disease. The couple decided to keep it a secret between them till they became fully aware of the disease. Another participant (P2) [Table 2] could not believe what had happened. She got a “panic attack” while receiving her diagnosis, as she was pregnant and could not fathom what HIV-positive status could lead to. Long back, she had heard from her friends that HIV is a disease and usually “immoral people” are its victims. The association of HIV with immorality heightens the stigma associated with it. She was wondering how HIV entered her body and how it will impact the baby in her womb? However, her husband was HIV negative and supported her. Internalizing stigma is seen in patients wherein they do not disclose their status but adapt strategies to avoid situation which may stigmatize them. Another woman (P9) [Table 2] was pregnant when she came to know about their HIV-positive results. Since both (husband and wife) were diagnosed with it, they decided to act strong and not become victims again. They had achieved this pregnancy after a long financial battle which had led to many deprivations in their lives, parenthood being one of them. However, the news was shocking for the participant who decided not to disclose the HIV-positive status to anyone. She was aware of the stigma attached to the disease. Her husband was skeptical about having the baby, but with the counseling and support of a counselor at the ART center, they adhered to ART drug therapy reducing the risk of vertical transmission.
Table 2: Experiences of stigma and discrimination: Qualitative illustrationsHIV does not affect a person individually at personal levels only, but it greatly influences their life in the family, school, workplace or neighborhood. Participant 13 [Table 2] divulges the details of spirals of violence she has fallen right from her childhood due to her HIV-positive status. She reveals that the only thing she knew about HIV was to keep it secret and not disclose it to anyone. The participant's family had to change their residence when she was in school and was ostracized and discriminated by teachers on account of her illness. The emotional maturity and age have a lot to do in disclosing the status and risks involved with it to children.
Experiences of stigma dominate the narratives of WLHA and across their postinfection life, it hugely impacts their mental health and well-being. HIV-related stigma and discrimination is understood as a “process of devaluation” of people either living with or associated with HIV. Discrimination follows stigma and is the unfair and unjust treatment of an individual based on her real or perceived HIV status.[9] In fact, there is a traumatic monotony in the narratives of WLHA describing their experiences of stigma, discrimination, and ill-treatment in health-care settings. These situations have been interfering with their adherence to treatment, resulting in further exacerbating their suffering and illness.
The participant 3 [Table 2] reveals that she was hospitalized when doctors advised her to get an HIV test. On receiving the HIV-positive report, the doctor opened his mouth in disbelief, which alarmed the relatives around my bed. Stigma is manifested by health-care providers by disclosing patient's positive status without her consent to her family and others. Her children were in shock and not ready to accept it. Later persuaded by counselor, they read literature on HIV and began to change their notions. Stigma and discrimination contributes to keeping people away from availing health-care services and concealing their HIV-positive status. By hiding their HIV status, these people compromise their health and well-being.[10] The participant (P5) [Table 2] prefers to keep her children inside and does not allow them to play outside with their peers. She recalls an incident when her children got injured and was taken to a medical practitioner where the medical person, refused to give him first aid on learning the boy's HIV-positive status. Studies have documented a range of discriminatory practices adopted by the health-care providers, which include denial of care and treatment based on HIV-positive status. The denial of treatment by health-care providers has led the WLHA to hiding the truth about their status and accessing health care from other places.
Dehumanizing an individual based on his HIV-positive status adds to the miseries and sufferings of the person living with it. The discriminatory attitude of some health-care workers fuels this victimization process. When people observe that health-care workers are dealing with HIV patients in discriminatory and insensitive ways, their attitudes change accordingly. The self-account of this participant reveals that after being diagnosed with HIV she along with her son, who also tested positive for HIV, consulted the doctor at a private clinic to inquire further about the disease. On learning our HIV-positive status, he immediately wore two pairs of surgical gloves, took the report sheet in his hand from a corner and tried to maintain more physical distance from them. Earlier, he was genuinely asking about our health issues, a single diagnosis changed his approach. Although he did not say anything his behavior depicted a different story. A participant (P10) [Table 2] reveals at the time of delivering her baby in a government hospital, she was being ill-treated by nurses and doctors and other health-care workers. A woman is prone to postpartum depression after delivery and incidents like these add to the suffering. A participant delivered an HIV-positive baby and health-care workers and other people on the hospital premises remarked that it is a “divine punishment.” In fact, it has been widely seen that the professional and sensitive approach of health-care workers enhances the health and mental well-being of WLHA and often paves the way for effective management and treatment of the illness.
Stigma acts as a barrier to accessing health-care services and has an impact on the physical and mental health of people living with HIV/AIDS in Kashmir. A range of activities such as verbal abuse, gossiping about the patient, change of expressions including expressing shock and disbelief on receiving the diagnosis of a patient, discriminatory attitudes such as wearing multiple pairs of surgical gloves, maintaining more physical distance, denial of care and treatment, disclosing their HIV-positive status without their consent to their families and others has been learned from the self-accounts of the participants in the study. Proper awareness and training should be conducted by health institutions to dispel the fears, myths, and misconceptions regarding HIV and its transmission.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References 
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