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

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了一项试点研究，评估了父母不确定性管理干预（PUMI）的可接受性和可行性，这是一种基于临床的跨学科干预，针对新诊断为癌症的儿童的父母。PUMI的目标是帮助父母管理不确定性，以促进父母调整，随后，在儿童新的癌症诊断的背景下，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组的父母在母亲痛苦和儿童行为问题上表现出显著的改善。拟议的多地点试验将测试PUMI在儿童癌症诊断后不久改善父母和儿童适应方面的功效和持久性。2至18岁儿童的父母将在基线时被随机分配到PUMI或教育/支持（ESO；注意控制）条件。这两种情况都包括由护士和心理学家共同提供的六次治疗。PUMI教导父母识别导致不确定性的诱因，利用策略来防止这些诱因，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网站，该网站旨在增加对儿童疾病和治疗的了解，减少人们对儿童疾病和治疗的模糊认识。在ESO的家长也将完成六个门诊会议与一个

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.