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儿科肿瘤学研究:让家长参与以加强研究过程、成果及知识转化。

Research in pediatric oncology: Engaging parents to strengthen research processes, outcomes and knowledge translation.

作者信息

Bally Jill M G, Mcharo Solomon K

机构信息

University of Saskatchewan, College of Nursing.

出版信息

Can Oncol Nurs J. 2020 Jul 1;30(3):220-222. eCollection 2020 Summer.

Abstract

Childhood cancer is the most common disease-related cause of death in Canadian children aged 0-14 years, with more than 1,000 new diagnoses every year (Canadian Cancer Statistics Advisory Committee, 2019). Treatment for childhood cancers requires complex, intensive, and lengthy regimens, often lasting years. Each new diagnosis marks tremendous upheaval in the lives of the child and their family, and an opportunity for nurses in pediatric oncology to make a difference. However, to best intervene, it is crucial to understand the experiences and needs of parental caregivers who have children in treatment for cancer. Patient Oriented Research is one way to bring together patients, family members, researchers, healthcare providers, and decision-makers to actively collaborate, understand best practices, and create transformational positive change in pediatric oncology.

摘要

儿童癌症是加拿大0至14岁儿童中与疾病相关的最常见死因,每年有超过1000例新确诊病例(加拿大癌症统计咨询委员会,2019年)。儿童癌症的治疗需要复杂、密集且漫长的疗程,通常持续数年。每一例新确诊病例都给患儿及其家庭的生活带来巨大动荡,也为儿科肿瘤护理人员提供了发挥作用的机会。然而,为了进行最佳干预,了解孩子正在接受癌症治疗的父母护理人员的经历和需求至关重要。以患者为导向的研究是一种让患者、家庭成员、研究人员、医疗保健提供者和决策者积极合作、了解最佳实践并在儿科肿瘤领域创造变革性积极变化的方式。

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Patient engagement in research: a systematic review.患者参与研究:一项系统评价。
BMC Health Serv Res. 2014 Feb 26;14:89. doi: 10.1186/1472-6963-14-89.

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