Parenting Intervention for Caregivers who Parent a Young Child while Caring for a Spouse with an Incurable Cancer.

项目摘要/摘要 据估计，在新诊断的癌症患者中，有五分之一的人至少有一个未成年子女。尽管父母有 晚期癌症及其配偶照顾者尤其容易受到父母教养效率低下的影响， 他们的肿瘤学团队在很大程度上仍然没有解决他们的育儿问题。与那些没有 受抚养人、患者和有未成年子女的配偶照顾者更焦虑，报告更糟糕 生活质量。事实上，有未成年子女的配偶照顾者被诊断出患有 与没有家属的同龄人相比，他们的精神状况更差。许多人都在为如何管理 相互竞争的任务，既要照顾生病的伴侣，又要承担养育子女的责任。此外，许多人 病人和配偶照顾者苦苦挣扎着如何将癌症告知他们的孩子；然而，有效 沟通是至关重要的，因为对父母病情知之甚少的儿童患上 焦虑和抑郁。虽然与这种双重照顾角色相关的压力源被清楚地记录在案， 到目前为止，关于提供可行和有效的与育儿相关的心理社会的经验证据 缺乏关怀。为了填补这些知识空白，我们建议试行多模式育儿支持 对诊断为晚期实体恶性肿瘤的患者及其配偶照顾者的干预 严格的随机对照试验(RCT)设计。干预的内容将通过三个途径传递 包括印刷的心理教育材料、简短的教育视频和四个治疗师主导的模式 干预会议。患者和照顾者将一起观看教育材料 并共同参加两个 手动视频会议会议。照顾者将参加另外两次干预课程，目标是 他们特殊的育儿需求。 建议的随机对照研究将使父母支持干预的二元性随机化 手臂或等待控制手臂接受通常的护理。本RCT的目的是收集关于可接受性的数据， 患者和照顾者心理健康干预的可行性和初步效果 在生命末期关注育儿问题和病人的医疗保健利用。将通过验证来评估DUADS 自我报告工具在基线时以及6周和12周后再次进行。双星也将完成质化 采访以了解他们的育儿、癌症和照看相关的问题，对于那些在 干预臂，如果干预及其交付被认为是有帮助的。下一次更大规模的试验也将 评价干预对儿童焦虑和抑郁水平的影响。拟议的工作将提供 丰富的试点数据，将为后续更大规模的试验提供信息，进行更正式的干预效果测试，寻求 改善晚期癌症患者的症状负担，提高整体健康和幸福感 他们的家人。

PROJECT SUMMARY/ABSTRACT An estimated 1 in 5 of newly diagnosed cancer patients parent at least one minor child. Although parents with advanced cancer and their spousal caregivers are particularly vulnerable to reporting low parenting efficacy, their parenting concerns remain largely unaddressed by their oncology teams. Compared to those without dependents, both patients and spousal caregivers with minor children are more anxious and report worse quality of life. In fact, spousal caregivers with minor children are a greater risk of being diagnosed with a psychiatric condition compared to their counterparts without dependents. Many struggle how to manage the competing tasks of caring for their ill partner while maintaining their parenting responsibilities. Moreover, many patients and spousal caregivers struggle with how to inform their children about the cancer; yet, effective communication is crucial as children who are ill-informed of their parent's illness are at an increased risk of anxiety and depression. While the stressors associated with this dual caregiving role are clearly documented, to date, empirical evidence regarding the delivery of feasible and efficacious parenting-related psychosocial care is lacking. To fill these knowledge gaps, we propose to pilot-test a multi-modal parenting support intervention for patients diagnosed with an advanced solid malignancy and their spousal caregivers using a rigorous randomized controlled trial (RCT) design. The content of the intervention will be delivered via three modes including printed psychoeducational materials, a brief education video, and four therapist-led intervention sessions. Patients and caregivers will view the education materials together and jointly attend two manualized videoconference sessions. Caregivers will attend two additional intervention sessions targeting their specific parenting needs. The proposed RCT will randomize dyads to the parenting support intervention arm or a waitlist control arm receiving usual care. The purpose of this RCT is to collect data on acceptability, feasibility and preliminary efficacy of the intervention regarding patient and caregiver psychological health and parenting concerns and patient healthcare utilization at the end of life. Dyads will be assessed via validated self-report instruments at baseline and again 6 weeks and 12 weeks later. Dyads will also complete qualitative interviews to learn about their parenting-, cancer- and caregiving- related concerns and, for those in the intervention arm, if the intervention and its delivery was perceived to be helpful. The next larger trial will also evaluate the intervention effects on children's anxiety and depression levels. The proposed work will provide rich pilot data that will inform a subsequent larger trial for more formal intervention efficacy testing seeking to improve the symptom burden and increase overall health and wellbeing in patients with advanced cancer and their families.