Exploring Gastrostomy Care-Related Information Needs in Patients With Amyotrophic Lateral Sclerosis and Their Families

Abstract

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.