Das Aritra, Detels Roger, Javanbakht Marjan, Panda Samiran
a Department of Epidemiology, Fielding UCLA School of Public Health , University of California , Los Angeles , CA , US.
b National Institute of Cholera and Enteric Diseases (NICED/ICMR) , Kolkata , West Bengal , India.
AIDS Care. 2017 Jun;29(6):800-806. doi: 10.1080/09540121.2016.1227059. Epub 2016 Sep 9.
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.
感染艾滋病毒的儿童（CLH）面临着诸多身体和心理挑战。该疾病的影响不仅限于受影响的CLH，还会波及他们的照料者和家庭成员。我们定性地探究了主要照料者的经历、知识、担忧和看法，并将这些方面与他们所照料的CLH所表达的情况进行了三角互证。我们对居住在印度西孟加拉邦、年龄在8至15岁的CLH的主要照料者进行了34次深入访谈（IDI）。与CLH进行了4次焦点小组讨论（FGD），其中两次针对8至12岁的儿童，另外两次针对13至15岁的儿童。参与者是在一个为成年人和CLH提供按需服务的社区组织的帮助下招募的。确定了照料者和儿童共有的五个主要主题，包括对艾滋病毒、药物治疗、歧视行为、拥有“健康心理”以及现有艾滋病毒相关健康服务的优势和局限性的担忧。仅从与照料者的深入访谈中得出的两个主要主题是照料挑战以及对他们所照料的CLH未来的担忧。印度的CLH及其照料者面临着许多日常挑战，并且存在许多未得到满足但相关的期望。照料工作超越了儿童与照料者之间的关系，与当地社区以及医疗保健和支持系统结构相互交织。当前的研究强调了需要制定全面的护理计划，重点是加强对CLH和照料者的支持。
