The experience of living with HIV is embedded with stigma and discrimination deeply rooted in the socio-cultural context. Women living with HIV (WLWH) endure complex issues due to the patriarchal structure of society in India. This study endeavors to understand structural factors affecting the healthcare of WLWH using the theoretical framework of autobiographical narratives. Open-ended interviews are conducted for this study with WLWH resulting in 11 in-depth interviews of WLWH that are used for analysis. The interviews are constructed into narratives, and grounded theory approach is used to generate codes. Further, constant comparison method is used to discern common themes among these narratives. The theoretical framework of memory specificity is used to explore the experiences of WLWH. The results of this study are broadly categorized into three themes, namely physical healthcare, psychological healthcare, and reproductive healthcare. There is a need to focus on gender-based contextual factors to improve healthcare access as well as healthcare seeking among WLWH.
TopIntroduction
HIV, unlike other illnesses, is embedded with stigmatization, morality, sexuality, and identity crisis. The complexities are further intertwined with migration, prostitution, and poverty. The multifaceted experiences of living with HIV are rooted in the socio-cultural context. HIV is the human immunodeficiency virus responsible for causing AIDS (acquired immunodeficiency syndrome). These experiences of Women Living with HIV (WLWH) are even more intricate because of the patriarchal structure of society in India. Women are socially, culturally, and biologically more vulnerable to HIV (Türmen, 2003). Hence, the prevention and care for HIV for women are affected by several social, cultural, and economic factors (Malik & Dixit, 2017). These factors also play a significant role in adherence to HIV treatment and the physical and mental health of WLWH. These factors impact the prevention and healthcare-seeking behavior of HIV among women.
As per the World Health Organization (WHO, 2022) statistics, it is estimated that 38.4 million people are living with HIV worldwide, and out of these 19.7 million are women. According to the Centres for Disease Control and Prevention (2002), the number of women with HIV/ AIDS continues to increase. “Women with HIV/AIDS are not rare but hidden” (Carr & Gramling, 2004, p. 30). Anti-retroviral therapy has brought a significant decline in the mortality rate of People Living with HIV (PLWH). The decrease in the mortality rate is improving the physical health of PLWH, but it is equally important to improve the mental health of those living with HIV. The autobiographical narratives of PLWH include experiences interwoven in stigma, discrimination, and lack of social support. The retrieval of these negative memories can impact the treatment and healthcare-seeking behavior of WLWH (Niziurski & MaSchaper, 2021).
The World Health Organization (WHO, 1985) framed health as the absence of diseases and lack of specific ability and considered health a condition where an individual is physically, mentally, and socially healthy. Later in 2001, the WHO included mental health and defined health as “a state of well-being in which the individual realizes his or her abilities, can cope with the normal stresses of life, can work productively and fruitfully, and can contribute to his or her community” (p. 1). This definition provided by the WHO is substantially progressive, but there are several components of mental health that need to be more inclusive. Galderisi et al. (2015) suggest a more inclusive and dynamic definition of mental health.
Mental health is a dynamic state of internal equilibrium which enables individuals to use their abilities in harmony with universal values of society. Basic cognitive and social skills; ability to recognize, express and modulate one's own emotions, as well as empathize with others; flexibility and ability to cope with adverse life events and function in social roles; and harmonious relationship between body and mind represent important components of mental health which contribute, to varying degrees, to the state of internal equilibrium. (pp. 231-232)
Stable mental health conditions, well-being, and social support are crucial factors impacting the lives of WLWH. Mosadeghrad (2011) defined healthcare as, “consistently delighting the patient by providing efficacious, effective and efficient healthcare services according to the latest clinical guidelines and standards, which meet the patient’s needs and satisfies providers” (p. 203). Healthcare services are intangible products. They are multifaceted and include several healthcare providers. HIV healthcare includes anti-retroviral therapy (ART), counseling, and support.