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.

项目摘要/摘要估计有5个新诊断的癌症患者的父母至少有1个小儿童。虽然父母有晚期癌症及其配偶护理人员特别容易报告育儿功效较低，他们的育儿问题在很大程度上仍然不受肿瘤学团队的影响。与没有受抚养人，有未成年子女的患者和配偶护理人员都更加焦虑，报告更糟生活质量。实际上，有未成年子女的配偶护理人员是被诊断出患有的更大风险与没有受抚养人的对手相比，精神病状况相比。许多人都在努力管理在维持其育儿责任的同时，照顾生病的竞争任务。而且，许多患者和配偶护理人员为如何告知孩子有关癌症的努力；但是，有效沟通至关重要，因为对父母的病不明显的孩子有越来越多的风险焦虑和沮丧。虽然与此双重照顾角色相关的压力源已清楚地记录下来，但迄今为止，有关可行和有效育儿相关的社会心理的经验证据缺乏护理。为了填补这些知识空白，我们建议在多模式的育儿支持中进行试验使用A的干预措施，使用诊断患有晚期固体恶性肿瘤的患者及其配偶护理人员使用严格的随机对照试验（RCT）设计。干预的内容将通过三个包括印刷的心理教育材料，简短的教育视频和四个由治疗师领导的模式干预会议。患者和看护者将一起查看教育材料共同参加两个手动视频会议。护理人员将参加两个针对性的干预课程他们的特定育儿需求。拟议的RCT将将二元组随机为育儿支持干预措施手臂或候补控制臂接受常规护理。此RCT的目的是收集有关可接受性的数据，干预措施对患者和护理人员心理健康的可行性和初步疗效以及育儿问题和生命尽头的患者医疗保健利用。二元组将通过验证评估基线的自我报告仪器和6周零12周后。二元组也将完成定性访谈以了解他们的育儿，癌症和照顾与相关问题，以及对于那些干预部门，如果人们认为干预及其提供有用。下一个较大的审判也将评估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飞行员数据将为随后的大型试验提供信息，以进行更正式的干预功效测试，以寻求改善症状负担，增加晚期癌症患者的整体健康和福祉他们的家人。