Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle

纵向儿科姑息治疗：生活质量

• 批准号: 8680048
• 负责人: Maureen Ellen Lyon
• 金额: $ 43.55万
• 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 2016-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8680048
• 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; 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人的姑息治疗，旨在缓解痛苦(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控疏忽、打官司，甚至立法干预。我们建议建立在R34，循证模型的基础上，以家庭为中心(Face)高级护理计划干预，以测试我们的完整理论模型，在一个足够强大的随机、临床、两臂对照试验中检查假定的调解人和调解人，以及与病情较重的群体和青少年的精神斗争(消极宗教应对)。Face是一种基于交易压力和应对理论的文化敏感性和发展适宜性的手工家庭干预，通过解决问题为艾滋病毒/艾滋病患者及其家人的临终决策做好准备。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。我们将测试面部干预的有效性，以增加艾滋病青少年与其代理人之间在临终治疗偏好上的沟通和一致性，并确定是否可以随着时间的推移保持更高的一致性。我们还将研究面孔干预对决策冲突、沟通质量和患者生活质量的影响。我们还将评估研究结果的假想调解人(威胁评估、HAART坚持)和调解人(精神斗争)，包括住院。我们将从以医院为基础的诊所招募人员，并将130名青少年/代孕者(N=260名受试者)随机分为对照组(N=65名)或面部干预组(N=65名)。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被允许参加。每周将与经认证的面试者进行三次60至90分钟的面谈：面对面：会议1：里昂高级护理计划调查(C)-青少年和代孕版本：会议2：尊重选择面谈(R)会议3：完成五个愿望(C)。控制还将以家庭小组的形式进行管理，以控制时间、注意力和山楂效应：会话1：发展史，会话2：安全提示，会话3：传统音频/视频。在基线、干预后即刻(3个月)、干预后6个月、12个月和18个月实施标准化的自我报告措施。广义估计方程(GEE)将用于评估结果。

项目成果

Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.

儿科预先护理计划调查：对艾滋病毒/艾滋病青少年与其家人之间的一致性和不一致进行横断面检查。

• DOI: 10.1136/bmjspcare-2016-001224
• 发表时间: 2019
• 期刊: BMJ supportive & palliative care
• 影响因子: 2.7
• 作者: Lyon,MaureenE;Dallas,RonaldH;Garvie,PatriciaA;Wilkins,MeganL;Garcia,Ana;Cheng,YaoIris;Wang,Jichuan;AdolescentPalliativeCareConsortium
• 通讯作者: AdolescentPalliativeCareConsortium

Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): design and methods.

• DOI: 10.1016/j.cct.2012.05.009
• 发表时间: 2012-09
• 期刊: Contemporary clinical trials
• 影响因子: 2.2
• 作者: Dallas RH;Wilkins ML;Wang J;Garcia A;Lyon ME
• 通讯作者: Lyon ME

The Role of Religiousness/Spirituality in Health-Related Quality of Life Among Adolescents with HIV: A Latent Profile Analysis.

• DOI: 10.1007/s10943-016-0238-3
• 发表时间: 2016-10
• 期刊: Journal of religion and health
• 影响因子: 2.8
• 作者: Lyon ME;Kimmel AL;Cheng YI;Wang J
• 通讯作者: Wang J