A Clinic-Based Interdisciplinary Intervention for Parents of Children with Cancer

针对癌症儿童家长的基于临床的跨学科干预

• 批准号: 8932764
• 负责人: Larry L. Mullins
• 金额: $ 63.25万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-26 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8932764
• 关键词: 18 year old; 8 year old; Address; Aftercare; Age; Attention; Behavior; Behavioral; Bioinformatics; Child; Child Behavior; Childhood; Clinic; Communication; Complex; Diagnosis; Discipline of Nursing; Distress; Dose; Education; Educational process of instructing; Emotional; Event; Gender; Goals; Health; Information Management; Intervention; Knowledge; Lead; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Mediating; Mediator of activation protein; Medical; Mental Depression; Modeling; Moods; Nature; Newly Diagnosed; Nurses; Outcome; Parents; Perception; Pilot Projects; Prevention; Problem Solving; Psychological Impact; Psychologist; Psychology; Psychosocial Assessment and Care; Randomized; Reporting; Risk; Social support; Socioeconomic Status; Support Groups; Symptoms; Testing; Thinking; Time; Treatment Protocols; Uncertainty; anxiety symptoms; base; cancer care; cancer diagnosis; cancer therapy; clinical care; comparative efficacy; depressive symptoms; design; efficacy testing; evidence base; experience; group intervention; improved; innovation; interdisciplinary approach; intervention effect; post intervention; post-traumatic stress; prevent; psychologic; psychological distress; psychosocial; skills; treatment as usual; treatment effect

DESCRIPTION: Illness uncertainty refers to thoughts and perceptions about illness-related events that are unpredictable, ambiguous, and/or complex in nature. Higher levels of illness uncertainty consistently and robustly predict increased psychological distress in both parents and children (e.g., posttraumatic stress symptoms, anxiety, and depression). Therefore, strategies to decrease uncertainty are central to optimizing the adjustment of children with cancer and their parents. A recent pilot study conducted by our team evaluated acceptability and feasibility of the Parental Uncertainty Management Intervention (PUMI), a clinic-based interdisciplinary intervention for parents of children newly diagnosed with cancer. The goal of the PUMI is to help parents manage uncertainty in order to promote both parent adjustment and, subsequently, child adjustment in the context of a child's new cancer diagnosis. Parents in the PUMI group demonstrated significant improvements in maternal distress and child behavior problems compared to the treatment as usual group at 1- and 3-months post-treatment follow-ups. The proposed multisite trial will test the PUMI's efficacy and durability with regard to improving parent and child adjustment shortly following a child's cancer diagnosis. Parents of children between two and 18 years of age will be randomly assigned at baseline to either the PUMI or the Education/Support Only (ESO; attention control) condition. Both conditions consist of six-sessions that will be delivered jointly by a nurse and psychologist. The PUMI teaches parents to identify triggers that lead to uncertainty, utilize strategies to prevent those triggers as well as manage uncertainty that is unavoidable. In addition, parents will have access to an on-line portal designed to increase knowledge and decrease perceived ambiguities about the child's illness and treatments. Parents in the ESO will also complete six in-clinic sessions with a nurse and psychologist. These sessions will provide education about pediatric cancer and social support. [Parents in both groups will complete measures of psychological distress, illness uncertainty, posttraumatic stress, problem- solving, and parent-reported child emotional and behavioral functioning at five time points: baseline, 1-week post-intervention, as well as 3-, 6-, and 12-months post-treatment. The primary aims for the proposed study are to compare the PUMI to the ESO group on parent and child psychological distress 1-week post- intervention. The secondary aims are to compare the durability of the PUMI to the ESO group on parent and child overall distress and posttraumatic stress symptoms. Potential mediators of the treatment effects, including levels of uncertainty and portal use, will also be examined.] This study will provide an empirically- supported intervention that will significantly mitigate the adverse impact pediatric cancer has on child and parent adjustment and, ultimately, advance the practice of comprehensive cancer care.

描述：疾病不确定性是指对疾病相关事件的想法和看法，这些事件本质上是不可预测的、模糊的和/或复杂的。较高水平的疾病不确定性持续且有力地预示着父母和孩子心理困扰的增加（例如，创伤后应激症状、焦虑和抑郁）。因此，减少不确定性的策略对于优化癌症儿童及其父母的调整至关重要。我们的团队最近进行的一项试点研究评估了父母不确定性管理干预（PUMI）的可接受性和可行性，这是一种针对新诊断癌症儿童父母的基于临床的跨学科干预措施。 PUMI 的目标是帮助父母管理不确定性，以促进父母的调整，以及随后在儿童新诊断出癌症的情况下的儿童调整。在治疗后 1 个月和 3 个月的随访中，与常规治疗组相比，PUMI 组的父母在孕产妇痛苦和儿童行为问题方面表现出显着改善。拟议的多中心试验将测试 PUMI 在儿童癌症诊断后不久改善父母和儿童适应能力的有效性和持久性。 2 至 18 岁儿童的父母将在基线时被随机分配到 PUMI 或仅教育/支持（ESO；注意力控制）条件。这两种情况都由护士和心理学家共同进行的六次会议组成。 PUMI 教导家长识别导致不确定性的触发因素，利用策略来防止这些触发因素以及管理不可避免的不确定性。此外，家长还可以访问一个在线门户，该门户旨在增加知识并减少对孩子的疾病和治疗的模糊认识。 ESO 的家长还将完成六次临床课程，并由一名 护士和心理学家。这些课程将提供有关儿科癌症和社会支持的教育。 [两组家长将在五个时间点完成心理困扰、疾病不确定性、创伤后应激、问题解决以及家长报告的儿童情绪和行为功能的测量：基线、干预后 1 周以及 3-治疗后、6 个月和 12 个月。拟议研究的主要目的是比较 PUMI 与 ESO 组在干预后 1 周的父母和儿童心理困扰。第二个目的是比较 PUMI 与 ESO 组在父母和孩子整体痛苦和创伤后应激症状方面的持久性。还将检查治疗效果的潜在中介因素，包括不确定性和门户使用的水平。]这项研究将提供一种实证支持的干预措施，该干预措施将显着减轻儿科癌症对儿童和家长适应的不利影响，并最终推进综合癌症护理的实践。