Living with HIV in West Bengal, India: perceptions of infected children and their caregivers

ABSTRACT

Children living with HIV (CLH) face several physical and psychological challenges. The impact of the disease is not limited to the affected CLH, but also affects their caregivers and family members. We qualitatively explored the experiences, knowledge, concerns, and perceptions of primary caregivers and triangulated those aspects with those expressed by their CLH. We conducted 34 in-depth interviews (IDI) with primary caregivers of 8- to 15-year-old CLH residing in West Bengal, India. Four focus group discussions (FGD) with CLH were held, two each with children aged 8–12 and 13–15 years. Participants were recruited with the help of a community-based organization providing need-based services to adults and CLH. Five major themes shared by caregivers and children were identified, including concerns about HIV, medications, discriminatory behaviors, having a “healthy mind”, and the advantages and limitations of available HIV-related health services. Two primary themes exclusively from IDI with caregivers were caregiving challenges and concerns about the future of their CLH. Indian CLH and their caregivers face many daily challenges, and there are many unmet but relevant expectations. Caregiving goes beyond the child-caregiver dynamic, and is intertwined with the local community and the healthcare and support system structures. The current study underscores the need for comprehensive care programs focusing on improving support to both CLH and caregivers.

KEYWORDS:

• HIV
• discrimination
• qualitative research
• caregivers
• children

Acknowledgment

The study was approved by the institutional review board (IRB) of the University of California, Los Angeles and the Institutional Ethics Committee (IEC) of the National Institute of Cholera and Enteric Diseases (under the Indian Council of Medical Research), the collaborating research institute located in Kolkata, West Bengal.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was supported by NIH/Fogarty International Center [grant D43TW000013 (R.D.)].