The Amyotrophic Lateral Sclerosis Caregiver Experience During the Pandemic: A Preliminary Qualitative Exploration and Reflection of Interview Data

Abstract

Purpose: The COVID-19 pandemic created an unprecedented caregiving environment. This preliminary study explored self-perceptions of amyotrophic lateral sclerosis (ALS) caregiver experiences of unique challenges, the impact of the pandemic, and the available and needed resources to be more effective caregivers. Method: This study incorporated a brief qualitative interview, which was analyzed using a narrative, thematic approach. The sample consisted of eight ALS caregivers recruited from support groups, hospitals, clinics, and medical professional referrals. Results: While the eight caregivers were affected to varying degrees by the pandemic, several positive and negative themes emerged from their answers. The main positive theme was the perception of the availability of support groups and medical services through virtual formats and telemedicine services. Negative themes included a sense of increased caregiver burden during the pandemic along with the view that medical personnel needed more advanced training to meet the unique needs of patients with ALS and caregivers. Conclusions: Although the sample was small and nonrepresentative, the interviews shed light on possible issues that, if addressed, could create improved perception of medical support and lower feelings of burden. For instance, caregiver perceptions of needed training could be addressed through caregiver education about the roles and availability of medical personnel. Health care teams could also benefit from understanding the unique roles and needs, including a sense of burden in ALS caregivers, and by offering increased appointments through virtual formats.