Family Centered Advance Care Planning

描述（由申请人提供）：我们的目标是提高生活质量，并在整个治疗过程中整合有效的EOL护理，以及测试一种干预措施，以支持艾滋病毒阳性的青少年及其家庭成员，以防止抑郁和焦虑。这些目标与美国国立卫生研究院2006年艾滋病相关研究计划一致（美国国立卫生研究院，2004年，第260-261页）。我们的具体目标是：1)调整和标准化已经确立的有效干预措施，以适用于一个新的群体：艾滋病毒阳性青少年及其家庭；2)试点测试以家庭为中心的ACP干预的可行性和可接受性；3)评估干预对适应性应对、心理调节、生活质量、计划的影响。疾病的阶段也将被研究。在美国，每年有超过30,000名青少年死于各种慢性疾病的影响（Mineno等，2002）。对这些患者的EOL护理是一个公共卫生问题（Freyer, 2004； Rao等人，2002），因为它负担沉重，有预防痛苦的潜力。我们将从两个地点招募40名（N=80）青少年/法定监护人或代理双性恋者。暂时没有准备好的二人组将被放置在观察组。我们将随机分配35对夫妇到以家庭为中心的ACP干预组（n=20）或青少年健康控制组（n=15）。形式为三次60至90分钟的会议：(1)结构化的EOL调查；(2)家庭中心ACP访谈；(3)可选的家庭问题解决。将在基线、干预后立即和3个月随访时实施标准化的自我报告措施。为了评估Aim 2中干预措施的可行性和可接受性，将使用Stata 8中的频率分布来估计从入组到数据完整性的每个绩效指标。在Aim 3中，将使用协方差模型分析来估计干预对假设结果的影响。美国国立卫生研究院战略计划（IOM, 2003）旨在减少健康差距与本研究相关，该研究旨在改善对少数群体造成不成比例影响的疾病的生活质量，正如美国国立卫生研究院关于改善EOL护理的声明（2004年12月6日至8日）旨在增加对少数群体和在EOL研究中代表性不足的儿童的研究。仔细研究心理敏感领域，如EOL护理，符合IOM的建议（IOM, 2002）和NIH路线图的意图，即阻止“风险不利”的研究和鼓励创新（IOM, 2003）。

DESCRIPTION (provided by applicant): Our goals are to enhance quality of life and to integrate effective EOL care throughout the course of treatment for adolescents living with HIV/AIDS, as well as to test an intervention to support HIV positive adolescents and their family members in order to prevent depression and anxiety. These goals are consistent with the NIH 2006 Plan for HIV Related Research (NIH, 2004, pp. 260-261). Our specific aims are 1) to adapt and standardize interventions already established as efficacious for use with a new group: HIV positive adolescents and their families;2) to pilot test the feasibility and acceptability of the Family Centered ACP intervention;3) to estimate the effect of the intervention on adaptive coping, psychological adjustment, quality of life, plans. Stage of illness will also be studied. More than 30,000 adolescents in the U. S. die annually from the effects of all chronic illnesses (Mineno, et al., 2002). EOL care for these patients is a public health issue (Freyer, 2004; Rao, et al., 2002), because of its high burden and potential for the prevention of suffering. We will recruit from two sites and enroll 40 (N=80) adolescent/legal guardian or surrogate dyads. Temporarily not ready dyads will be placed in an observational group. We will randomly assign 35 dyads to either the Family Centered ACP intervention (n=20) or the Adolescent Health Control (n=15). The format is three 60 to 90 minute sessions: (1) structured EOL survey; (2) Family Centered ACP interview; (3) optional Family Problem Solving. Standardized, self-report measures will be administered at baseline, immediate post intervention and 3 month follow-up. To assess the feasibility and acceptance of the intervention in Aim 2, frequency distributions in Stata 8 will be used to estimate each of the indicators of performance from enrollment to data completeness. Analysis of covariance models will be used to estimate the effect of the intervention on hypothesized outcomes in Aim 3. The NIH Strategic Plan (IOM, 2003) to reduce health disparities is relevant to this study, which aims to improve the quality of life for a condition that disproportionately affects minorities, as is the NIH Statement on Improving EOL Care (Dec.6-8, 2004) to increase the study of minorities and children who are underrepresented in EOL research. Careful research in psychologically sensitive areas such as EOL care is consistent with IOM recommendations (IOM, 2002) and the NIH Roadmap intention to discourage "risk-adverse" research and to encourage innovation (IOM, 2003).