Continuing Care between Hospital and Home about Percutaneous Endoscopic Gastrostomy Based on the Experience of Patients with Amyotrophic Lateral Sclerosis

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Abstract

Aims : The purpose of this study was to elucidate experiences of ALS patients who had undergone percutaneous endoscopic gastrostomy (PEG) placement and their families in relation to the gastrostomy and find the continuing care between the hospital and community. Methods : Semi-structured interviews were conducted with six amyotrophic lateral sclerosis (ALS) patients who underwent gastrostomy to elaborate on their experiences with PEG at the hospital and leading to their discharge. Results : There were changes for more positive attitudes in accepting PEG. The following were cited as the major reasons for such changes : (1) Switch to more appropriate gastrostomy tube ; (2) Improvement in the troublesome aspects ; and (3) Realization of the need for the PEG. On the other hand, the following were extracted as the troublesome experiences related to the procedure : [skin trouble], [leakage of nutrition formula], [malfunctioning of the equipment], [difficulties with self care] and [insufficient information], etc. Conclusions : It is considered necessary to select appropriate types of gastrostomy tube and offer adequate guidance through the cooperation of multiple disciplines in and out of the hospital. Health professions need to prepare for changes of physical function in daily activities associated with exacerbation of the disease so that ALS patients may have an adequate understanding of the procedure and be capable of accepting continuing care.

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