Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle

纵向儿科姑息治疗：生活质量

• 批准号: 8509531
• 负责人: Maureen Ellen Lyon
• 金额: $ 43.13万
• 依托单位: CHILDREN'S RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-09-29 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8509531
• 关键词: 21 year old; AIDS Dementia Complex; AIDS/HIV problem; Acquired Immunodeficiency Syndrome; Adherence; Adolescent; Adoption; Advance Care Planning; Affect; Attention; Belief; Caring; Cessation of life; Charge; Child; Childhood; Chronic; Clinic; Clinical; Communication; Conflict (Psychology); Decision Making; Depression and Suicide; Development; Dialysis procedure; Dimensions; Disease; Distress; Ensure; Equation; Event; Family; Family Relationship; Future; Goals; Guidelines; Hawthorn plant; Healthcare; Highly Active Antiretroviral Therapy; Hospitalization; Hospitals; Intervention; Interview; Interviewer; Knowledge; Left; Legal Guardians; Life; Malignant Neoplasms; Measures; Mediating; Mediator of activation protein; Medical; Methods; Minority; Modeling; Outcome; Outcome Study; Palliative Care; Participant; Patient Self-Report; Patients; Persons; Prevention; Problem Solving; Process; Public Health; Quality of life; Randomized; Randomized Controlled Clinical Trials; Recording of previous events; Recruitment Activity; Religion and Spirituality; Reporting; Role; Safety; Source; Stress and Coping; Surveys; Symptoms; Teenagers; Testing; Theoretical model; Time; United States National Institutes of Health; active control; aged; arm; base; control trial; coping; court; efficacy testing; end of life; evidence base; foster care; human subject; improved; meetings; neglect; post intervention; preference; psychologic; public health relevance; surrogate decision maker; theories

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.

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）并最大限度地提高生活质量。如果对临终决定毫无准备，沟通不畅和分歧可能会导致家庭被指控疏忽、法庭诉讼甚至立法干预。我们建议以 R34、基于证据的模型、以家庭为中心 (FACE) 的预先护理计划干预为基础，测试我们的完整理论模型，检查假定的中介者和调节者，以及与病情较重的群体和青少年的精神斗争（消极的宗教应对）艾滋病在一项充分有力的随机临床双臂对照试验中。 FACE 是一种具有文化敏感性且适合发展的手动家庭干预措施，基于交易压力和应对理论，帮助艾滋病毒/艾滋病青少年及其家人通过解决问题来做出临终决策。从理论上讲，威胁评估与拉撒路的初级评估概念相关，特别是事件威胁孩子的目标或价值观的方式。精神斗争（消极的宗教应对）可能是痛苦的根源，导致姑息治疗和结果的差异。我们将测试 FACE 干预对于增强艾滋病青少年及其代理人之间临终治疗偏好的沟通和一致性的有效性，并确定是否可以随着时间的推移保持增强的一致性。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）的假设中介因素（威胁评估、HAART 依从性）和调节因素（精神斗争）。我们将从医院诊所招募患者，并将 130 名青少年/代理二人组（N = 260 名受试者）随机分为对照组（N = 65 人组）或 FACE 干预组（N = 65 人组）。患有艾滋病痴呆症、严重抑郁症、有自杀或杀人倾向或处于寄养状态的参与者将不允许参加。每周将由经过认证的访谈员进行 3 场 60 至 90 分钟的会议： FACE：第 1 场：里昂预先护理计划调查(c) - 青少年和代孕版本：第 2 场：尊重选择访谈(R) 第 3 场：完成五个愿望(c)。控制也将以家庭小组的形式进行，以控制时间、注意力和山楂效应：第 1 节：发育史、第 2 节：安全提示和第 3 节：传统音频/视频。将在基线、干预后立即（3 个月）以及干预后 6、12 和 18 个月实施标准化自我报告措施。广义估计方程（GEE）将评估结果。