Sarkar Sonali, Selvaraj Kalaiselvi, Krishnamurthy Sriram, Balasundaram Abyramy, Lakshminarayanan Subitha
Department of Community Medicine, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry, India.
Department of Community Medicine, Pondicherry Institute of Medical Sciences, Puducherry, India.
Ind Psychiatry J. 2018 Jul-Dec;27(2):219-225. doi: 10.4103/ipj.ipj_54_16.
Rollout of antiretroviral therapy (ART) has helped to achieve the increased life span among pediatric HIV patients. The psychosocial aspects of parents or caregivers can affect the treatment adherence in children and the disease outcome.
This study aims at understanding the perspectives on disclosure of HIV status, stigma, antiretroviral treatment, and compliance among caregivers of children attending ART clinic in South India and to explore the barriers to treatment-seeking behavior.
This facility-based qualitative study was carried out among caregivers of pediatric HIV patients <15 years of age. In-depth interview was conducted on caregivers after informed consent in the absence of the child, focusing on stigma, disclosure of HIV status to children, adherence, and coping strategies followed by the parents. The complete interviews were transcribed in English, and content analysis was done to identify the emergence of codes. Interview was conducted among mothers of affected child. The disease status of the children was known only to the parents and not to the children themselves (excepting one) or siblings. Parents intended to keep it confidential for the affected children as long as possible. Nevertheless, to maintain adherence and to prevent disclosure of HIV status, mothers traveled to this ART center from very far places, medical records were hidden, and tablets were removed from the strips and said to be medicines for energy and protection.
Mothers of HIV-positive children faced many difficulties to prevent the disclosure of the diagnosis from the affected children and others, which is not very conducive to adherence to the ART regimen. Effective disclosure strategies to manage this emotionally vulnerable group are an urgent need.
抗逆转录病毒疗法（ART）的推广有助于提高儿科艾滋病毒患者的寿命。父母或照顾者的社会心理状况会影响儿童的治疗依从性和疾病结局。
本研究旨在了解印度南部接受抗逆转录病毒治疗门诊的儿童照顾者对艾滋病毒感染状况披露、耻辱感、抗逆转录病毒治疗及依从性的看法，并探讨寻求治疗行为的障碍。
本基于机构的定性研究在15岁以下儿科艾滋病毒患者的照顾者中开展。在获得知情同意后，在孩子不在场的情况下对照顾者进行深入访谈，重点关注耻辱感、向孩子披露艾滋病毒感染状况、依从性以及父母采取的应对策略。完整访谈内容被转录为英文，并进行内容分析以确定编码的出现情况。访谈对象为受影响儿童的母亲。只有父母知道孩子的病情，孩子自己（除一人外）或兄弟姐妹并不知晓。父母打算尽可能长时间地为受影响的孩子保密。然而，为了维持依从性并防止艾滋病毒感染状况被披露，母亲们从很远的地方来到这个抗逆转录病毒治疗中心，病历被隐藏起来，药片从药条上取下，说是能量和保护用的药物。
艾滋病毒呈阳性儿童的母亲在防止受影响儿童及其他人知晓诊断方面面临诸多困难，这非常不利于抗逆转录病毒治疗方案的依从性。迫切需要有效的披露策略来管理这个情感脆弱的群体。
