Serving from Their Reserves : A Phenomenology of Informal Caregiving for HIV/AIDS

Background and Purpose-Approximately 39% of the estimated 2.5 million people in India, living with HIV/AIDS are women. An estimated 63% of all HIV-positive women who live in Indian households are married women who often provide informal caregiving to their HIV-positive husbands and children. Male rates of HIV/AIDS have declined (3.23%) more rapidly than women’s (2.02%), a finding largely attributed to women’s poor access to education, information and healthcare services. HIV-positive women are at risk of psychosocial distress and experience stigma and discrimination, often isolating them from social support. Married women tend to adhere more rigidly to gender norms that prescribe caregiving to their husbands and children, regardless of their own health.   

  Little systematic research on informal care for HIV/AIDS has been conducted in India and even less is known about the caregiving experiences of married, HIV-positive women who provide informal care to their HIV-positive husbands and children. This caregiving is provided by women who are in poor health themselves. Aiming to fill these gaps in literature, I explore women’s experiences as informal caregivers, how they make meaning of their caregiving experience, potential impact of their caregiving labor on their own health and women’s relationships with formal healthcare providers and healthcare systems.  

Methods- Data were collected over five months, via 33 in-depth interviews, in the state of Uttar Pradesh in Northern India. Respondents were recruited through non-profit agencies. Participants were married HIV-positive women (ages 22-50) providing informal care for their HIV-positive husbands and children. Time spent as caregivers ranged from one month to 7 years.  Women were living in poverty. Interviewing and data analysis were guided by a Heideggerian Phenomenological approach. Interviews were transcribed and translated from Hindi into English and coded in ATLAS.ti qualitative software. Rigor was enhanced through peer-debriefing, member checking, document trails and an analysis of negative cases.  

Findings - Participants experienced a deterioration in their own physical and psychoemotional health during phases of intense caregiving. Women felt overwhelmed in the absence of information, counseling or training to perform their caregiving role, especially during end of life care for their husbands. Despite experiencing distress as caregivers, guided by the internalization of gender normative values about caregiving, women assigned positive meanings to their caregiving role, explaining it in terms of having courage, being the stronger partner, honoring wifely responsibilities or  romantic love. Healthcare workers asked women to care for themselves in order to become effective caregivers for their husbands and children, consolidating women’s identity as ‘instrumental caregivers’, not worthy of care themselves.  

Conclusions and Implications-HIV-positive, caregiving women must be provided with support, information and resources to preserve their own health in its own right, and enable their on-going role as caregivers. This study has implications for developing gender sensitive HIV-policies in India that address the physical health, psychosocial and emotional needs of informal HIV-positive female caregivers. 

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