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，并在艾滋病毒/艾滋病感染青少年的整个治疗过程中整合有效的EOL护理，以及测试干预措施，以支持艾滋病毒阳性青少年及其家庭成员，以预防抑郁和焦虑。这些目标与NIH 2006年艾滋病毒相关研究计划（NIH，2004，pp. 260-261）。我们的具体目标是：（1）调整和标准化已经建立的干预措施，使其有效地用于新的群体：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干预措施的可行性和可接受性;（3）评估干预措施对适应性应对、心理调整、生活质量和计划的影响。还将研究疾病的阶段。美国有3万多名青少年。S.每年死于所有慢性疾病的影响（Mineno，et al.，2002年）。这些患者的EOL护理是一个公共卫生问题（Freyer，2004; Rao等人，2002年），因为它的高负担和预防痛苦的潜力。我们将从两个研究中心招募40名（N=80）青少年/法律的监护人或代理人。暂时未准备好的二联体将被置于观察组。我们将35对夫妇随机分配到以家庭为中心的ACP干预组（n=20）或青少年健康对照组（n=15）。形式是三个60至90分钟的会议：（1）结构化的EOL调查;（2）以家庭为中心的ACP访谈;（3）可选的家庭问题解决。将在基线、干预后即刻和3个月随访时进行标准化自我报告测量。为了评估目标2中干预的可行性和可接受性，Stata 8中的频率分布将用于估计从入组到数据完整性的每个性能指标。协方差模型分析将用于估计干预措施对目标3中假设结果的影响。减少健康差距的NIH战略计划（IOM，2003）与本研究相关，其目的是改善不成比例地影响少数民族的生活质量，正如NIH关于改善EOL护理的声明（2004年12月6日至8日）一样，以增加对少数民族和在EOL研究中代表性不足的儿童的研究。在诸如终末期护理等心理敏感领域的仔细研究符合IOM的建议（IOM，2002）和NIH路线图的意图，即阻止“风险不利”的研究并鼓励创新（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).