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居家姑息治疗中非癌症患者非正式照护者的教育项目:一项范围综述

Education Programs for Informal Caregivers of Noncancer Patients in Home-Based Palliative Care: A Scoping Review.

作者信息

Ghizzardi Greta, Maga Giulia, Silvia Brera Alice, Milani Ilaria, Falbo Sara, Petralito Monica, Terzoni Stefano, Lusignani Maura, Caruso Rosario

机构信息

School of Nursing, Directorate of Nursing and Allied Health Professions, Azienda Socio-Sanitaria Territoriale di Lodi, Lodi, Italy.

Department of Biomedicine and Prevention, University of Rome Tor Vergata, Rome, Italy.

出版信息

J Palliat Med. 2024 Dec 26. doi: 10.1089/jpm.2024.0097.

Abstract

The literature available on the topic of education programs for noncancer patients' informal caregivers (ICs) is heterogeneous and fragmented in the setting of palliative care (PC). We conducted a scoping review (ScR) to map the literature on educational programs for ICs in home-based PC, considering the available reviews, qualitative studies, observational studies, studies of validation of measurement tools, uncontrolled trials, nonrandomized controlled trials, and feasibility studies. This ScR included 21 eligible records by searching PubMed, Web of Science, Embase, Scopus, and CINAHL databases. The most common types of study designs were literature review (28%), qualitative research (24%), and experimental or quasiexperimental research (19%). A total of 57% of educational interventions or programs were mainly supplied by nurses, alone or with other health professionals; specifically, nurses mostly led supportive intervention ( = 2; 25%), education programs ( = 2; 25%), and app development. Different factors at the microsystem, macrosystem, mesosystem, and exosystem levels might help or hinder the implementation of IC education. Although ICs might more easily access online programs, accessibility and digital exclusion might represent significant barriers. Supportive interventions might positively affect family ICs' preparedness, competence, burden, care outcomes, and experiences related to their role; moreover, it might increase ICs' self-rated competence in all key areas: physical, emotional, psychological, social, informational, and spiritual. ICs can improve their knowledge, confidence, and attitudes toward PC. The literature summary might render the assistance more accessible to ICs to improve the quality of caregiving and nursing care linked to patient and caregiver outcomes. However, robust studies (e.g., randomized controlled trials) are still required to identify and establish the efficacy of each described intervention and, therefore, offer tailored approaches considering the diverse diseases and social and cultural characteristics of patients and ICs.

摘要

在姑息治疗(PC)背景下,关于非癌症患者非正式照护者(IC)教育项目的现有文献参差不齐且零散。我们进行了一项范围综述(ScR),以梳理居家PC中IC教育项目的文献,纳入了现有综述、定性研究、观察性研究、测量工具验证研究、非对照试验、非随机对照试验和可行性研究。通过检索PubMed、科学网、Embase、Scopus和CINAHL数据库,该ScR纳入了21条合格记录。最常见的研究设计类型是文献综述(28%)、定性研究(24%)和实验性或准实验性研究(19%)。总共57%的教育干预或项目主要由护士单独或与其他卫生专业人员提供;具体而言,护士大多主导支持性干预( = 2;25%)、教育项目( = 2;25%)和应用程序开发。微观系统、宏观系统、中观系统和外部系统层面的不同因素可能有助于或阻碍IC教育的实施。尽管IC可能更容易获得在线项目,但可及性和数字排斥可能是重大障碍。支持性干预可能会对家庭IC在准备情况、能力、负担、护理结果以及与自身角色相关的体验方面产生积极影响;此外,它可能会提高IC在所有关键领域的自我评估能力:身体、情感、心理、社会、信息和精神方面。IC可以提高他们对PC的知识、信心和态度。文献综述可能会使IC更容易获得帮助,以提高与患者和照护者结果相关的照护质量和护理质量。然而,仍需要强有力的研究(如随机对照试验)来确定并证实每种所述干预措施的有效性,从而根据患者和IC的不同疾病以及社会和文化特征提供量身定制的方法。

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