{"title":"Family Caregivers' Experiences of People With Amyotrophic Lateral Sclerosis Undergoing Gastrostomy Tube Feeding.","authors":"Hyeon Sik Chu, Juyeon Oh","doi":"10.1097/JNN.0000000000000792","DOIUrl":null,"url":null,"abstract":"<p><strong>Abstract: </strong>INTRODUCTION: In amyotrophic lateral sclerosis (ALS) patients with impaired swallowing function, gastrostomy tube (G-tube) placement is recommended, but significantly increases the caregiving burden on families. This study aimed to describe the experiences of family caregivers of patients with ALS receiving home enteral nutrition through a G-tube. METHOD: Using purposive sampling, 8 family caregivers participated in the study. Data collection was conducted between February 2021 and October 2022 at a university hospital in Seoul, Korea. Semistructured face-to-face interviews were used to collect data until saturation. Data were analyzed using Krippendorff's content analysis approach. RESULTS: Qualitative analysis of the data revealed 3 main themes regarding caregiving. The emerging themes included psychological distress, unmet practical needs, and the struggle to provide care. CONCLUSION: After a G-tube placement, family caregivers experience various emotional stresses and have numerous unmet practical needs. Healthcare professionals caring for people with ALS receiving enteral nutrition should provide a tailored support program that addresses the specific needs of these family caregivers.</p>","PeriodicalId":94240,"journal":{"name":"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1097/JNN.0000000000000792","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/9/2 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
Abstract: INTRODUCTION: In amyotrophic lateral sclerosis (ALS) patients with impaired swallowing function, gastrostomy tube (G-tube) placement is recommended, but significantly increases the caregiving burden on families. This study aimed to describe the experiences of family caregivers of patients with ALS receiving home enteral nutrition through a G-tube. METHOD: Using purposive sampling, 8 family caregivers participated in the study. Data collection was conducted between February 2021 and October 2022 at a university hospital in Seoul, Korea. Semistructured face-to-face interviews were used to collect data until saturation. Data were analyzed using Krippendorff's content analysis approach. RESULTS: Qualitative analysis of the data revealed 3 main themes regarding caregiving. The emerging themes included psychological distress, unmet practical needs, and the struggle to provide care. CONCLUSION: After a G-tube placement, family caregivers experience various emotional stresses and have numerous unmet practical needs. Healthcare professionals caring for people with ALS receiving enteral nutrition should provide a tailored support program that addresses the specific needs of these family caregivers.
摘要：引言：对于吞咽功能受损的肌萎缩侧索硬化症（ALS）患者，建议放置胃造瘘管（G 管），但这会大大增加家庭的护理负担。本研究旨在描述通过 G 管接受家庭肠内营养的 ALS 患者的家庭护理人员的经历。方法：采用目的性抽样，共有 8 位家庭护理人员参与了研究。数据收集于 2021 年 2 月至 2022 年 10 月在韩国首尔的一家大学医院进行。采用半结构式面对面访谈收集数据，直至达到饱和。采用克里彭多夫内容分析法对数据进行分析。结果：对数据的定性分析揭示了有关护理的三大主题。新出现的主题包括心理困扰、未满足的实际需求以及提供护理的挣扎。结论：放置 G 管后，家庭护理人员会经历各种情绪压力，并有许多实际需求未得到满足。照顾接受肠内营养的 ALS 患者的医护人员应针对这些家庭照顾者的特殊需求提供量身定制的支持计划。
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