Infant symptoms in the NICU: Impact on parent decision-making, coping, and distress

NICU 中的婴儿症状：对父母决策、应对和痛苦的影响

• 批准号: 9357707
• 负责人: CHRISTINE A FORTNEY
• 金额: $ 13.54万
• 依托单位: OHIO STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-26 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9357707
• 关键词: Abdomen; Address; Admission activity; Adult; Affect; Caregivers; Caring; Cessation of life; Child; Childhood; Critical Care; Critical Illness; Data Collection; Decision Making; Discipline of Nursing; Distress; Documentation; Evaluation; Family; Funding; Future; Goals; Health Personnel; Individual; Infant; Infant Care; Infant Mortality; Intervention; Investigation; Knowledge; Life; Link; Longitudinal Studies; Mediating; Medical; Methods; Mission; National Institute of Nursing Research; Neonatal; Neonatal Intensive Care Units; Nurses; Outcome; Pain; Parents; Patients; Perception; Population; Pregnancy; Prospective Studies; Public Health; Quality of life; Reporting; Research; Skin; Source; Swelling; Symptoms; Time; Training; Work; age group; behavior observation; coping; design; emotional distress; end of life; end of life care; evidence base; experience; high risk; improved; innovation; life-sustaining therapy; novel; palliative; physical symptom; prospective; symptomatic improvement; therapy development; virtual

PROJECT SUMMARY/ABSTRACT Technological advances in the neonatal intensive care unit (NICU) allow for treatments to be implemented and continued for days, weeks, or even months depending on an infant's gestation and underlying condition. During this time, the infant may experience pain and other symptoms that are difficult for healthcare providers to assess and manage, and also for parents to comprehend, which may cause them emotional distress. Currently there is a significant gap in our understanding of the symptom experience of critically ill infants at high risk of dying in the NICU compared to other pediatric and adult populations. Closing these knowledge gaps is critical to improving evidence-based care for these infants and their families. The long-term goal is to improve the symptom assessment and thereby the care that critically ill infants and families receive in the NICU. The objective of this prospective, longitudinal study is to characterize infant symptom burden among 100 infants in the NICU from multiple sources and identify associations between parents' perceptions of the infant's symptom experience and their decision-making, coping, and distress. The central hypothesis is that proper assessment and management of infant symptoms and suffering will enhance parent decision-making, as well as reduce infant suffering and parent distress. The rationale is that identifying symptoms that are most distressing for infants, parents, and clinicians will inform the design and evaluation of future interventions to improve care. The study objective will be obtained by pursuing 3 specific aims: 1) to prospectively characterize the symptom experience of critically ill infants at high risk of dying in the NICU from multiple sources (i.e. parents, nurses, medical chart review, and behavioral observation) from admission until discharge/death (or a maximum of 3 months); 2) to identify links between parents' perceptions of infant symptom burden, suffering, and quality of life and the effects on treatment decision-making and goals of care over time; and 3) to identify links between parents' perceptions of infant symptom burden, suffering, and quality of life and parent coping and distress over time. This approach is innovative because it is the first prospective study, to evaluate the symptom experience of critically ill infants in the NICU and to explore how perceptions of their experience impact parent decision- making, coping, and distress. This research is significant because it will inform the design of novel prospective investigations and intervention development aimed at improving symptom assessment and outcomes among infants and their families in the NICU.

项目总结/摘要 新生儿重症监护室（NICU）的技术进步允许实施治疗， 持续数天，数周，甚至数月，这取决于婴儿的妊娠和潜在条件。 在此期间，婴儿可能会出现疼痛和其他症状，这是医疗保健提供者难以做到的。 评估和管理，也让父母理解，这可能会导致他们的情绪困扰。 目前，我们对危重婴儿的症状经验的理解存在很大差距， 与其他儿科和成人人群相比，在NICU中死亡的风险较高。关闭这些知识 差距对于改善这些婴儿及其家庭的循证护理至关重要。长期目标是 改善症状评估，从而改善重症婴儿和家庭在 新生儿重症监护室这项前瞻性纵向研究的目的是描述婴儿症状负担， 100名新生儿重症监护室的婴儿从多个来源，并确定家长的看法之间的关联， 婴儿症状体验及其决策、应对和苦恼。核心假设是， 对婴儿症状和痛苦的适当评估和管理将增强父母的决策， 同时减少婴儿的痛苦和父母的痛苦。基本原理是，识别最常见的症状 婴儿、父母和临床医生的痛苦将为未来干预措施的设计和评估提供信息， 改善护理。研究目的将通过追求3个具体目标来实现：1）前瞻性表征 NICU中死亡风险高的危重婴儿的症状经历来自多种来源（即， 父母、护士、病历审查和行为观察）从入院到出院/死亡（或 最多3个月）; 2）确定父母对婴儿症状负担，痛苦， 和生活质量以及随着时间的推移对治疗决策和护理目标的影响;以及3）识别 父母对婴儿症状负担、痛苦和生活质量的感知与父母应对之间的联系 随着时间的推移，这种方法是创新的，因为它是第一个前瞻性研究，以评估 NICU中危重婴儿的症状体验，并探讨如何感知他们的体验 影响父母决策、应对和痛苦。这项研究意义重大，因为它将告知 设计新的前瞻性研究和旨在改善症状的干预措施 在NICU中的婴儿及其家人的评估和结果。