Hyeon Sik Chu, MSN RN CNRN, is a Doctoral Student, School of Nursing, Hanyang University, Seoul, South Korea.
J Neurosci Nurs. 2020 Oct;52(5):207-213. doi: 10.1097/JNN.0000000000000534.
The aim of this study was to explore the information needs and preferred sources of information of Korean family caregivers of patients with amyotrophic lateral sclerosis (ALS).
Family caregivers of patients with ALS (n = 108) completed a structured questionnaire to assess their information needs and preferred sources of information.
Most of the caregivers obtained health information from Internet searches (89.8%) and healthcare professionals (85.2%). The source rated most helpful was healthcare professionals, and that rated least helpful was broadcast media. Family caregivers who were younger than 50 years and well educated and caregivers of bulbar-onset ALS patients had higher scores of information needs.
Providing information through healthcare professionals and self-support groups could enhance family caregiver satisfaction. Family caregivers who are older and less educated need to be more empowered to be involved in information-based caring, and caregivers of patients with bulbar-onset ALS have substantial information needs.
本研究旨在探讨韩国肌萎缩侧索硬化症（ALS）患者家庭照顾者的信息需求和信息偏好来源。
108 名 ALS 患者的家庭照顾者完成了一份结构化问卷，以评估他们的信息需求和信息偏好来源。
大多数照顾者通过互联网搜索（89.8%）和医疗保健专业人员（85.2%）获取健康信息。评价最有帮助的来源是医疗保健专业人员，评价最不有帮助的来源是广播媒体。年龄小于 50 岁且受过良好教育的照顾者，以及延髓发病 ALS 患者的照顾者，其信息需求得分更高。
通过医疗保健专业人员和自助团体提供信息，可以提高家庭照顾者的满意度。年龄较大且教育程度较低的照顾者需要更多的赋权，以参与基于信息的护理，延髓发病 ALS 患者的照顾者有较大的信息需求。
