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

针对在照顾患有无法治愈癌症的配偶时养育幼儿的护理人员的育儿干预。

基本信息

批准号：
10301442
负责人：
Kathrin Milbury
金额：
$ 42.98万
依托单位：
UNIVERSITY OF TX MD ANDERSON CAN CTR
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-09-23 至 2024-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10301442
关键词：
Address Adherence Admission activity Adult Advance Care Planning Advanced Malignant Neoplasm Age Aging Anxiety Bereavement Cancer Patient Caregivers Caring Child Child Rearing Childhood Clinical Communication Consent Control Groups Data Diagnosis Disease Distress Education Equilibrium Family Generations Health Intervention Intervention Studies Interview Knowledge Learning Life Literature Malignant Neoplasms Measures Mediator of activation protein Mental Depression Mental Health Minor Modeling Newly Diagnosed Oncology Outcome Palliative Care Pamphlets Parents Patient Self-Report Patients Personal Satisfaction Procedures Professional counselor Provider Psychosocial Assessment and Care Qualitative Methods Quality of life Randomized Randomized Controlled Trials Reporting Research Risk Role Solid Spouse Caregiver Spouses Supportive care Symptoms Testing Treatment Efficacy Waiting Lists Work aggressive therapy anxiety symptoms anxious arm base cancer diagnosis caregiver interventions caregiving depressive symptoms efficacy testing end of life end of life care end-of-life decision making evidence base experience health care service utilization hospice environment improved innovation instrument intergenerational intervention effect middle age multimodality novel overtreatment patient health information patient population preadolescence primary outcome psychoeducational psychologic psychological symptom psychosocial secondary outcome skills stressor symptomatic improvement treatment arm treatment as usual trial design tumor

项目摘要

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.

项目概要/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。虽然父母有晚期癌症及其配偶照顾者特别容易报告养育效率低，他们的肿瘤学团队在很大程度上仍未解决他们的育儿问题。与没有的相比家属、患者和有未成年子女的配偶照顾者都更加焦虑，报告情况更糟生活质量。事实上，有未成年子女的配偶照顾者被诊断出患有此类疾病的风险更大与没有家属的同行相比的精神状况。许多人都在纠结如何管理照顾生病的伴侣，同时履行养育责任的竞争任务。而且，许多患者和配偶的照顾者在如何让孩子了解癌症方面遇到了困难；然而，有效沟通至关重要，因为不了解父母病情的孩子会面临更大的风险焦虑和抑郁。虽然与这种双重照顾角色相关的压力源有明确的记录，迄今为止，关于提供可行且有效的与养育相关的心理社会服务的经验证据缺乏护理。为了填补这些知识空白，我们建议试点多模式育儿支持使用以下方法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严格的随机对照试验（RCT）设计。干预内容将通过三个途径传达模式包括印刷心理教育材料、简短的教育视频和四位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参加两场手动视频会议。护理人员将参加另外两次干预会议，目标是他们的具体育儿需求。拟议的随机对照试验将随机分组接受育儿支持干预臂或等候名单控制臂接受常规护理。该 RCT 的目的是收集有关可接受性的数据，关于患者和护理人员心理健康和干预措施的可行性和初步效果育儿问题和患者临终时的医疗保健利用。双人组将通过验证进行评估在基线时以及 6 周和 12 周后再次进行自我报告。双人也将完成定性采访以了解他们与养育、癌症和护理相关的问题，并且对于那些处于干预组，如果干预及其实施被认为是有帮助的。下一次更大规模的试验也将评估干预措施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，以进行更正式的干预功效测试，以寻求改善晚期癌症患者的症状负担并提高整体健康状况和福祉他们的家人。

项目成果

期刊论文数量（1）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Living With an Advanced Cancer While Parenting Minor Children: A Needs Assessment Study.

养育未成年子女时患有晚期癌症：需求评估研究。

DOI：
发表时间：
2023-08
期刊：
影响因子：
4.7
作者：
Whisenant, Meagan;Jones, Morgan;Ann;Necroto, Victoria;Skrljac, Ashley;Bruera, Eduardo;Milbury, Kathrin
通讯作者：
Milbury, Kathrin