Mothers Caring for Their Children When Both Are Living with HIV/AIDS: A Phenomenological Exploration from North India

Background

    Approximately two million people have HIV/AIDS in India; 39% are women and 7% are children. Yet, little is known about the experiences of mothers who care for their children when both are living with HIV/AIDS.  From 2004 to 2013, the number of pregnant women screened for HIV increased from 0.8 to 8.83 million. Despite more prevalent screening, only 38% of pregnant women diagnosed with HIV received prevention from mother to child health services in 2015. Women’s access to such services is limited because they often do not have access to hospital services for maternal and neonatal health.  Frequently, they deliver at home with no preventive medications.

      Little is known about Indian women who transmitted HIV to their children and are caring for them while also managing their own health.  This study fills this gap by exploring the experiences, everyday challenges, and emotional lives of mothers caring for their children while living with HIV in north India.

Methods

     Data for this study were drawn from a larger qualitative study and were collected over 5-6 months in Lucknow, Uttar Pradesh, India. In-depth, semi-structured interviews were conducted with 33 women living with HIV and 7 of these women were mothers whose children were also living with HIV. These mothers ranged in age from 22 to 35 years, were living in poverty, and their children were 3 months to14 years old. All seven mothers married before age 18. The following domains were explored: 1) How they care for their child; 2) What thoughts and feelings arise as a mother with a child living with HIV; and 3) What challenges women face in caring for their child as a result of HIV.

     Data were transcribed and translated into English from Hindi, coded in ATLAS-ti qualitative software and analyzed inductively. An interpretive phenomenological approach was used for the analysis to uncover the inner mental and emotional lives of mothers. Rigor was enhanced through an audit trail and member-checking.

Results

     Three major themes emerged. First, women with children below the age of 6 had greater difficulty in maintaining ART adherence for the children compared to women with older children.  Women devised creative ways to enhance children’s medication adherence. In addition, women struggled with children’s opportunistic infections while simultaneously managing their own health. Second, women worried about and managed threats of stigma and discrimination for their children, especially during children’s interactions with public institutions such as schools, hospitals, and community based nutrition programs. Third, women expressed great concern about their children’s futures in finding mates for marriage and finding employment due to their HIV-status.  

Conclusions

     This study sheds light on the everyday trials and tribulations of mothers and their children who are living with HIV. Findings indicate the need for stronger efforts towards stigma reduction in regards to HIV, provision of resources and support to mothers towards improving children’s’ medication adherence, and greater psychoemotional support for the mothers and children.