Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle

描述（由申请人提供）：我们的目标是促进儿童及其家庭的姑息治疗，旨在减轻痛苦（心理，精神，身体）和最大限度地提高生活质量。如果没有做好临终决定的准备，沟通不周和分歧可能会导致家庭被指控忽视、打官司，甚至立法干预。我们建议在我们的R34，基于证据的模型，以家庭为中心（FACE）预先护理计划干预的基础上，通过一项足够有力的随机，临床，双臂，对照试验来检验我们的完整理论模型，该模型检验了病情较重的群体和青少年艾滋病患者的推定中介和调节因素，以及精神斗争（消极的宗教应对）。FACE是一种基于交易性压力和应对理论的文化敏感和发展适当的手动家庭干预，它通过解决问题为患有艾滋病毒/艾滋病的青少年及其家庭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，造成姑息治疗和结果的差异。我们将测试FACE干预的有效性，以增加青少年艾滋病患者和他们的代理人之间在临终治疗偏好方面的沟通和一致性，并确定这种一致性是否可以长期保持。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）的假设中介（威胁评估、HAART依从性）和调节因子（精神斗争）。我们将从医院诊所招募130名青少年/代孕夫妇（N=260名受试者），随机分组至对照组（N=65对）或FACE干预组（N=65对）。患有艾滋病毒痴呆、严重抑郁症、有自杀或杀人倾向或寄养的参与者将不允许参加。每周将有一位经过认证的采访者进行三次60至90分钟的访谈：面对面：第1部分：里昂预先护理计划调查(c) -青少年和替代版本；第2部分：尊重选择访谈(R)第三部分：完成五个愿望(c)。控制也将以家庭组形式进行管理，以控制时间，注意力和山楂效应：第1部分：发展史，第2部分：安全提示，第3部分：遗留音频/视频。标准化的自我报告测量将在基线、干预后立即（3个月）以及干预后6、12和18个月进行。广义估计方程（GEE）将评估结果。

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. PUBLIC HEALTH RELEVANCE: This study aims to minimize suffering and maximize quality of life for adolescents with AIDS, a condition that disproportionately affects minorities through FAmily CEntered (FACE) Advance Care Planning for teens with AIDS. Death from AIDS often follows a period of chronic or progressing illness, where symptom control and support are needed. Public health has a role in ensuring equity of access to effective care and prevention of suffering through compassionate care and the adoption of improved approaches to palliative care for the approximately 400,000 children living in the U.S. with life limiting conditions.