Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle

描述（由申请人提供）：我们的目标是推进姑息治疗与儿童和他们的家庭，旨在减轻痛苦（心理，精神，身体）和最大限度地提高生活质量。如果对临终决定毫无准备，沟通不畅和意见分歧可能导致家庭被指控忽视、法庭争斗甚至立法干预。我们建议建立在我们的R34，循证模型，以家庭为中心（FACE）的预先护理计划干预，以测试我们的完整的理论模型，检查假定的调解人和主持人，精神斗争（消极的宗教应对）与一个病情较重的群体和青少年艾滋病在一个足够的动力随机，临床，2臂，对照试验。FACE是一种具有文化敏感性和适合于发展的、以交易压力和应对理论为基础的手工化家庭干预措施，它通过解决问题，帮助感染艾滋病毒/艾滋病的青少年及其家人做好临终决策的准备。从理论上讲，威胁评估与拉撒路的初级评估概念有关，特别是事件威胁儿童目标或价值观的方式。精神斗争（消极的宗教应对）可能是痛苦的来源，导致姑息治疗和结果的差异。我们将测试FACE干预的有效性，以增加患有艾滋病的青少年及其代理人之间在临终治疗偏好方面的沟通和一致性，并确定是否可以随着时间的推移保持一致性。我们还将研究FACE干预对决策冲突、沟通质量和患者生活质量的影响。我们还将评估研究结果（包括住院治疗）的假设中介（威胁评估，HAART依从性）和调节剂（精神斗争）。我们将从基于医院的诊所招募130名青少年/替代者（N=260名受试者），随机分为对照组（N=65名受试者）或面部干预组（N=65名受试者）。患有艾滋病毒痴呆症、严重抑郁症、自杀或凶杀或寄养的参与者将不允许参加。每周将与一名认证访谈员进行三次60至90分钟的会议：面对面：会议1：里昂预先护理计划调查（c）-青少年和代理版本：会议2：尊重选择访谈（R）会议3：完成五个愿望（c）。还将以家庭组形式进行对照，以控制时间、注意力和山楂效应：第1阶段：发育历史，第2阶段：安全提示，第3阶段：遗留音频/视频。将在基线、干预后即刻（3个月）以及干预后6、12和18个月进行标准化自我报告测量。广义估计方程（GEE）将评估结局。

DESCRIPTION (provided by applicant): Our goal is to advance palliative care with children and their families aimed at relieving suffering (psychological, spiritual, physical) and maximizing quality of life. Left unprepared for end-of-life decisions, miscommunication and disagreements may result in families being charged with neglect, court battles and even legislative intervention. We propose building on our R34, evidence based model, the Family Centered (FACE) Advance Care Planning intervention, to test our full theoretical model examining the putative mediators and moderator, and spiritual struggle (negative religious coping) with a sicker group and adolescents with AIDS in an adequately powered randomized, clinical, 2-arm, controlled trial. FACE is a culturally sensitive and developmentally appropriate, manualized family intervention based on transactional stress and coping theory, which prepares adolescents with HIV/AIDS and their families for end-of-life decision-making through problem solving. Theoretically, threat appraisal is related to Lazarus' concept of primary appraisal, particularly the way in which an event threatens the child's goals or values. Spiritual struggle (negative religious coping) may be a source of distress, causing disparities in palliative care and outcomes. We will test the efficacy of the FACE intervention for increasing communication and congruence in end-of-life treatment preferences between teens with AIDS and their surrogates, and determine if increased congruence can be maintained over time. We will also examine the impact of the FACE intervention on decisional conflict, quality of communication, and patient quality of life. We will also evaluate hypothesized mediators (threat appraisal, HAART adherence) and moderator (spiritual struggle) of study outcomes, including hospitalizations. We will recruit from hospital-based clinics and randomize 130 adolescent/surrogate dyads (N=260 subjects) to either Control (N=65 dyads) or FACE Intervention (N=65 dyads). Participants with HIV dementia, severe depression, suicidality or homicidality or in foster care will not be allowed to participate. Three 60- to 90-minute sessions will be conducted with a certified interviewer at weekly intervals: FACE: Session 1: Lyon Advance Care Planning Survey(c) - Adolescent and Surrogate Versions: Session 2: The Respecting Choices Interview(R) Session 3: Completion of The Five Wishes(c). Control will also be administered in a family group format to control for time, attention, and Hawthorn effects: Session 1: Developmental History, Session 2: Safety Tips, and Session 3: Legacy audio/video. Standardized self-report measures will be administered at baseline, immediate post intervention (3 month), and 6, 12 and 18 month post intervention. Generalized estimating equation (GEE) will assess outcomes.