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）：我们的目标是与儿童及其家人一起姑息治疗，旨在缓解痛苦（心理，精神，身体）和最大化生活质量。为了生命终止的决定，误解和分歧而遗忘可能会导致家庭被指控犯有忽视，法院斗争甚至立法干预。我们建议建立R34，基于证据的模型，家庭中心（面部）预先护理计划干预措施，以测试我们的完整理论模型，以研究假定的调解人和主持人，以及与较轻的群体和辅助者的精神斗争（负面的宗教应对），并在一项充分动力的随机随机，临床，临床，2臂，2-ARM，2-ARM控制的试验中。 Face是一种基于交易压力和应对理论的文化敏感和发展适当的，手动化的家庭干预，为青少年提供艾滋病毒/艾滋病及其家人的青少年，通过解决问题来制定生命终止决策。从理论上讲，威胁评估与拉撒路的主要评估概念有关，尤其是事件威胁孩子的目标或价值观的方式。精神斗争（负面的宗教应对）可能是痛苦的根源，导致姑息治疗和结果差异。我们将测试面部干预措施的疗效，以增加与艾滋病及其代理的青少年之间延长寿命终止治疗偏好的一致性，并确定是否可以随着时间的推移维持增加的一致性。我们还将研究面部干预对决策冲突，沟通质量和患者生活质量的影响。我们还将评估假设的调解人（威胁评估，Haart依从性）和研究成果的主持人（精神斗争），包括住院。我们将从医院的诊所招募，然后将130个青少年/替代二元组（n = 260受试者）随机分配给对照（n = 65个二元组）或面部干预（n = 65个二元组）。患有艾滋病毒痴呆症，严重抑郁，自杀或凶杀或寄养的参与者将不允许参加。每周的时间间隔：面部：1：Lyon Advance Care Planning调查（C） - 青少年和代理版本：第2节：尊重的选择访谈（R）会议3：完成五个愿望（C），将与经过认证的访调员进行三个60至90分钟的课程：面部：Face：Face 1：青少年和代理版本：尊重的选择面试（R）。控制也将以家庭组格式进行管理，以控制时间，注意力和山楂效果：会议1：发展历史记录，会议2：安全提示和会议3：传统音频/视频。标准化的自我报告措施将在基线，即时干预后（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。