Merzel Cheryl, VanDevanter Nancy, Irvine Mary
Lehman College and the Graduate Center, the City University of New York, Bronx, New York 10468-1589, USA.
AIDS Patient Care STDS. 2008 Dec;22(12):977-87. doi: 10.1089/apc.2008.0048.
Abstract Survival among perinatally infected children and youth with HIV has been greatly extended since the advent of highly active antiretroviral therapies. Yet, adherence to HIV medication regimens is suboptimal and decreases as children reach adolescence. This paper reports on a qualitative study examining psychosocial factors associated with adherence among perinatally infected youth ages 10-16 years. The study was based on in-depth interviews with a sample of 30 caregivers participating in a comprehensive health care program in New York City serving families with HIV. A subsample comprising 14 caregivers of children ages 10 and above is the focus of this paper. The analysis identified a number of themes associated with the psychosocial context of managing adherence among older children. Maintaining adherence was an ongoing challenge and strategies evolved as children matured. Regimen fatigue and resistance to taking the medications were major challenges to maintaining adherence among the oldest children. In other cases, caregivers developed a kind of partnership with their child for administering the medications. Disclosure to the child of his or her HIV status was used as a strategy to promote adherence but seemed to be effective only under certain circumstances. Social support appeared to have an indirect influence on adherence, primarily by providing caregivers with temporary help when needed. Health care professionals were an important source of disclosure and adherence support for parents. The study illustrates the interplay of maturational issues with other contextual psychosocial factors as influences on adherence among older children and adolescents.
摘要 自高效抗逆转录病毒疗法问世以来，围产期感染艾滋病毒的儿童和青少年的生存期已大幅延长。然而，对艾滋病毒药物治疗方案的依从性并不理想，且随着儿童进入青春期而下降。本文报告了一项定性研究，该研究考察了10至16岁围产期感染艾滋病毒的青少年中与依从性相关的心理社会因素。该研究基于对30名参与纽约市一项为艾滋病毒感染家庭提供服务的综合医疗保健项目的照顾者的深入访谈。本文重点关注由14名10岁及以上儿童的照顾者组成的子样本。分析确定了一些与大龄儿童管理依从性的心理社会背景相关的主题。维持依从性是一项持续的挑战，且策略会随着儿童的成长而演变。方案疲劳和对服药的抵触是大龄儿童维持依从性的主要挑战。在其他情况下，照顾者与孩子建立了一种服药伙伴关系。向孩子披露其艾滋病毒感染状况被用作促进依从性的一种策略，但似乎仅在某些情况下有效。社会支持似乎对依从性有间接影响，主要是在需要时为照顾者提供临时帮助。医疗保健专业人员是家长披露信息和获得依从性支持的重要来源。该研究说明了成熟问题与其他背景心理社会因素之间的相互作用，这些因素会影响大龄儿童和青少年的依从性。
