Parents' Experiences of Therapeutic Hypothermia for Neonates With Hypoxic-Ischemic Encephalopathy (HIE): A Single-Center Cross-Sectional Study.

IF 1.2 4区医学 Q4 HEALTH CARE SCIENCES & SERVICES

Quality Management in Health Care Pub Date : 2024-04-01 Epub Date: 2023-07-24 DOI:10.1097/QMH.0000000000000414

Beate Grass, Melanie Erlach, Verena Rathke, Giuditta Cippa, Cornelia Hagmann, Barbara Brotschi

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引用次数: 0

Abstract

Background and objectives: The purpose of the study is to assess parental experiences of therapeutic hypothermia for moderate to severe hypoxic-ischemic encephalopathy with the goal of improving local clinical practice guidelines and fostering family-integrated care in neonates with hypoxic-ischemic encephalopathy.

Methods: This single-center retrospective cross-sectional study included neonates and their parents registered in the Swiss National Asphyxia and Cooling Register between 2011 and 2021. Based on a literature review, an anonymous survey of parents of neonates with hypoxic-ischemic encephalopathy was developed and conducted using an online survey tool. Descriptive statistics were used to analyze the survey results.

Results: The overall response rate to this survey was 64% (46/72). Sufficient information about hypoxic-ischemic encephalopathy was reported by 78% (36/46) of parents and sufficient information about the process of therapeutic hypothermia by 87% (40/46) of parents. The majority of parents indicated the need for, and at least a satisfactory perception of, professional (91%; 42/46) and emotional (87%; 40/46) support. Parents identified fostering family involvement and regular family communication that focuses on family integrated care as areas for improvement.

Conclusions: There is still an unmet need for multidisciplinary teams to provide professional, empathetic, high quality, and family-integrated care to families with a neonate receiving therapeutic hypothermia for moderate or severe hypoxic-ischemic encephalopathy.

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缺氧缺血性脑病（HIE）新生儿治疗性低温疗法的家长体验：单中心横断面研究。

背景和目的：本研究旨在评估父母对中度至重度缺氧缺血性脑病治疗性低温疗法的经验，目的是改进当地临床实践指南，促进缺氧缺血性脑病新生儿的家庭综合护理：这项单中心回顾性横断面研究纳入了 2011 年至 2021 年间在瑞士国家窒息和冷却登记处登记的新生儿及其父母。在文献综述的基础上，我们使用在线调查工具对缺氧缺血性脑病新生儿的父母进行了匿名调查。调查结果采用描述性统计进行分析：本次调查的总体回复率为 64%（46/72）。78%（36/46）的家长充分了解了缺氧缺血性脑病，87%（40/46）的家长充分了解了治疗性低温疗法的过程。大多数家长表示需要专业支持（91%；42/46）和情感支持（87%；40/46），并至少对这些支持有满意的看法。家长们认为，促进家庭参与和注重家庭综合护理的定期家庭沟通是需要改进的方面：多学科团队仍需为因中度或重度缺氧缺血性脑病而接受治疗性低温的新生儿家庭提供专业的、富有同情心的、高质量的家庭综合护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Quality Management in Health Care HEALTH CARE SCIENCES & SERVICES-

CiteScore

1.90

自引率

8.30%

发文量

108

期刊介绍： Quality Management in Health Care (QMHC) is a peer-reviewed journal that provides a forum for our readers to explore the theoretical, technical, and strategic elements of health care quality management. The journal''s primary focus is on organizational structure and processes as these affect the quality of care and patient outcomes. In particular, it: -Builds knowledge about the application of statistical tools, control charts, benchmarking, and other devices used in the ongoing monitoring and evaluation of care and of patient outcomes; -Encourages research in and evaluation of the results of various organizational strategies designed to bring about quantifiable improvements in patient outcomes; -Fosters the application of quality management science to patient care processes and clinical decision-making; -Fosters cooperation and communication among health care providers, payers and regulators in their efforts to improve the quality of patient outcomes; -Explores links among the various clinical, technical, administrative, and managerial disciplines involved in patient care, as well as the role and responsibilities of organizational governance in ongoing quality management.