Difficulties and Coping Strategies of Caregivers Working with Patients with Amyotrophic Lateral Sclerosis (ALS)

Abstract

Objective: In this report, we describe the difficulties presented by caring for patients with amyotrophic lateral sclerosis (ALS), and the people facing them. This report is intended to support dispatched ALS caregivers in Miyagi prefecture’s public welfare program in their continued duties. We also discuss the role the prefectural government and public health centers should take in improving the caregiver dispatch system.
Methods: Data were collected by conducting semi-structured interviews on 5 caregivers registered with in-home ALS caregiver dispatching agencies in Miyagi prefecture.
Results: The common difficulties found among caregivers included “responding to ALS patients with a unique set of ALS symptoms and their families,” “creating smooth relationships with ALS patients and their families,” and “building teamwork based care in order to provide consistent care.” Coping strategies included “obtaining support from others around them” and “being able to take care of oneself.” Interviewees stated that by continuing their work they have obtained “an affirmation of themselves as ALS caregivers.”
Conclusion: Our findings suggest that the prefectural government and public health centers should have the following important roles: to provide ALS caregivers opportunities to share their work difficulties with one another and to help reduce their mental burden; to reinforce teamwork-based care by sharing information and care goals; to make the content of their work widely known; and, lastly, to stress the importance of the activities carried out by public health nurses engaged in legal preparations and raise awareness of measures concerning compensation issues.