Hyeon Sik Chu, MSN, RN, is Doctoral Student, College of Nursing, Hanyang University, Seoul, South Korea; ALS/MND Clinic, Hanyang University Seoul Hospital, Seoul, South Korea.
Young Ran Tak, PhD, RN, is Professor, College of Nursing, Hanyang University, Seoul, South Korea.
Gastroenterol Nurs. 2022;45(4):231-237. doi: 10.1097/SGA.0000000000000651. Epub 2022 Jul 13.
The aim of this study was to explore gastrostomy care-related information needs in amyotrophic lateral sclerosis (ALS) patients and their families. This was a quantitative content analysis. Data were collected from a major online patient community in Korea by analyzing posted free texts. A total of 173 posted free texts from January 2010 to July 2020 from the "question and answer" bulletin board were analyzed. Questions were mostly asked by the adult children of patients, and the most frequent question period was "after hospital discharge." The commonly mentioned topics related to gastrostomy and G-tube complications. Patients with ALS and their families have a high requirement for gastrostomy care and enteral feeding information. These findings indicate that there is a need to support decision-making for gastrostomy in hospitals and to provide information about G-tube care and enteral nutrition after leaving the hospital. This information and coaching/support for patients with amyotrophic lateral sclerosis and their families currently appears to be obtained mainly through online patient communities. Both hospital and home care nurses could play a greater role in providing this information.
本研究旨在探讨肌萎缩侧索硬化症（ALS）患者及其家属的胃造口护理相关信息需求。这是一项定量内容分析。通过分析韩国一个主要在线患者社区发布的免费文本收集数据。对 2010 年 1 月至 2020 年 7 月“问答”公告板上发布的 173 篇免费文本进行了分析。问题主要由患者的成年子女提出，最常提问的时期是“出院后”。常见的与胃造口和 G 管并发症相关的话题。肌萎缩侧索硬化症患者及其家属对胃造口护理和肠内喂养信息有很高的要求。这些发现表明，有必要在医院为胃造口决策提供支持，并在出院后提供有关 G 管护理和肠内营养的信息。目前，这些信息以及对肌萎缩侧索硬化症患者及其家属的辅导/支持主要是通过在线患者社区获得的。医院和家庭护理护士都可以在提供这些信息方面发挥更大的作用。
