Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups

Abstract

This study employs a qualitative methodology to explore the effects of the pandemic on the lives of ALS patients and their caregivers. It aims to understand whether and how online self-help groups have assisted families dealing with amyotrophic lateral sclerosis (ALS) patients. ALS is a neurodegenerative disease with both physical and psychosocial implications. Consequently, it significantly affects the lives of patients’ caregivers. In 2020, the COVID-19 pandemic exacerbated this situation. The results show that the pandemic has had a negative impact on the well-being of ALS caregivers and patients. Furthermore, bereavement and death were dealt with in different ways by the families involved. The pandemic aggravated the health of ALS patients and increased the workload of their caregivers; however, online psychological support was appreciated for its role in providing emotional help and diminishing social isolation.