Self-Care in Youth with Perinatally-acquired HIV

围产期感染艾滋病毒青少年的自我护理

• 批准号: 7140032
• 负责人: Susan W Ledlie
• 金额: $ 23.58万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-08-19 至 2009-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7140032
• 关键词: AIDS therapy; HIV infections; adolescence (12-20); behavioral /social science research tag; caregivers; clinical research; family structure /dynamics; health behavior; health care service availability; human subject; middle childhood (6-11); parent offspring interaction; patient oriented research; pediatric AIDS; self care; vertical transmission

DESCRIPTION (provided by applicant): The broad objectives of this study are to develop an understanding of factors that create barriers to or promote health-related self-care in youth with perinatally-acquired HIV disease (YPAHD) and discover how family caregivers manage transitioning aspects of self-care to YPAHD. This is necessary to devise and test theory-based interventions to promote self-care and its transition within families, thereby improving health outcomes for YPAHD. As advances in treatment continue to increase their longevity, YPAHD must assume increasing responsibilities for managing their HIV self-care as they get older. Specific aims are to(1) describe the HIV self-care practices of YPAHD; (2) examine whether factors known to influence self-care in other chronic illnesses impact HIV self-care; (3) ascertain the influence of family self-care beliefs on HIV self-care; and (4) develop a Grounded Theory to describe and explain how family caregivers manage transitioning aspects of self-care to YPAHD. Study participants include primarily African-American and Hispanic YPAHD (n= 196) and their primary, family caregiver (n=196) residing in New York City. This mixed-model study design will use triangulated data sources. Participants will complete instruments that measure the relationship between the outcome measure of HIV self-care and factors hypothesized to influence HIV self-care: self-concept, social support, family functioning, illness severity, treatment intensity, diagnosis disclosure to YPAHD, and caregiver HIV serostatus. A subset of participants from each group (n=20-30) will participate in two, individual, face-to face interviews, 2 weeks apart to elicit descriptive responses about HIV self-care activities, beliefs, and goals. Correlational and regression analyses and t-tests will be used to predict whether factors known to influence self-care in other chronic childhood illnesses impact HIV self-care. Developing a substantive theory of the phenomenon will allow for discovery of the basic social problem inherent in HIV self-care transitions within families as well as illustrate the conditions and strategies used by caregivers and YPAHD which influence and shape the transition process. An integrative analysis of the study findings will result in a more descriptive account of the process of HIV self-care than any one methodology could provide. Adopting this perspective supports both the descriptive, hypothesis-testing, and exploratory nature of the study aims. This innovative approach draws on Orem's Self-Care Deficit Theory of Nursing and will further our ability to develop evidence-based interventions that focus on critical junctures in the trajectory of self-care to insure successful self-care transitions within families that will improve the health outcomes for YPAHD.

描述（由申请人提供）：本研究的总体目标是了解对患有围产期获得性艾滋病毒 (YPAHD) 的青少年进行健康相关自我护理造成障碍或促进其健康相关自我护理的因素，并了解家庭护理人员如何管理过渡YPAHD 的自我保健方面。这对于设计和测试基于理论的干预措施是必要的，以促进自我护理及其在家庭中的过渡，从而改善 YPAHD 的健康结果。随着治疗的进步不断延长他们的寿命，随着年龄的增长，YPAHD 必须承担越来越多的责任来管理艾滋病毒自我护理。具体目标是 (1) 描述 YPAHD 的艾滋病毒自我护理实践； (2) 检查已知影响其他慢性疾病自我护理的因素是否会影响艾滋病毒自我护理； (3)确定家庭自我保健信念对艾滋病毒自我保健的影响； (4) 制定扎根理论来描述和解释家庭护理人员如何管理自我护理向 YPAHD 的过渡。研究参与者主要包括非裔美国人和西班牙裔 YPAHD (n= 196) 及其居住在纽约市的主要家庭护理人员 (n=196)。这种混合模型研究设计将使用三角数据源。参与者将完成测量 HIV 自我护理的结果测量与假设影响 HIV 自我护理的因素之间关系的工具：自我概念、社会支持、家庭功能、疾病严重程度、治疗强度、向 YPAHD 的诊断披露和护理人员HIV 血清状态。每组中的一部分参与者 (n=20-30) 将参加两次单独的面对面访谈，间隔两周，以引出有关艾滋病毒自我护理活动、信念和目标的描述性反应。相关性和回归分析以及 t 检验将用于预测已知影响其他慢性儿童疾病自我护理的因素是否会影响艾滋病毒自我护理。发展这一现象的实质性理论将有助于发现家庭内艾滋病毒自我护理转变所固有的基本社会问题，并说明护理人员和 YPAHD 所使用的影响和塑造转变过程的条件和策略。对研究结果的综合分析将比任何一种方法能够提供的对艾滋病毒自我护理过程的描述性更强。采用这种观点支持研究目标的描述性、假设检验和探索性性质。这种创新方法借鉴了奥勒姆的自我护理缺陷护理理论，并将进一步增强我们开发循证干预措施的能力，这些干预措施重点关注自我护理轨迹中的关键时刻，以确保家庭内成功的自我护理过渡，从而改善健康状况YPAHD 的结果。