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

项目总结/摘要 据估计，五分之一的新诊断癌症患者至少有一个未成年子女。虽然父母与 晚期癌症患者及其配偶照顾者特别容易报告养育效能低下， 他们的肿瘤学团队仍然基本上没有解决他们的育儿问题。与那些没有 家属，病人和配偶照顾者与未成年子女更焦虑，并报告更糟 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 精神状况相比，他们的同行没有依赖。许多人挣扎着如何管理 在照顾生病的伴侣的同时，还要承担养育子女的责任。而且很多 患者和配偶照顾者挣扎着如何告知他们的孩子癌症;然而，有效的 沟通是至关重要的，因为不了解父母疾病的儿童面临的风险增加。 焦虑和抑郁。虽然与这种双重角色相关的压力源有明确的记录， 迄今为止，关于提供可行和有效的与父母有关的社会心理的经验证据， 护理缺乏。为了填补这些知识空白，我们建议试点测试多模式的育儿支持 对诊断为晚期实体恶性肿瘤的患者及其配偶照顾者进行干预， 随机对照试验（RCT）设计。干预的内容将通过三个 模式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 干预会议。患者和护理人员将一起查看教育材料 并共同出席两个 手动视频会议。护理人员将参加两个额外的干预会议， 特殊的育儿需求。 拟议的随机对照试验将对父母支持干预进行随机分组 手臂或等待名单控制手臂接受常规护理。本RCT的目的是收集可接受性数据， 关于患者和护理人员心理健康的干预措施的可行性和初步疗效， 父母的担忧和患者在生命结束时的医疗保健利用。将通过经验证的 在基线时以及6周和12周后再次使用自我报告工具。二人组还将完成定性 采访，了解他们的育儿，癌症和生育相关的问题， 如果干预及其实施被认为是有帮助的，则应在干预组中进行。下一个更大的审判也将 评价干预对儿童焦虑、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，以进行更正式的干预有效性测试， 改善晚期癌症患者的症状负担并提高整体健康和福祉， 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.