The Perception of Religious Coping and Health Related Quality of Life in The Case of an ALS Caregiver During COVID-19

Abstract

\n Research Objectives\n To investigate the degree to which the progression of disease and loss of swallowing and communication in amyotrophic lateral sclerosis (ALS) patients affect the quality of life and religious coping of a caregiver over time. To investigate the perceptions of the impact of the coronavirus on caregiving.\n \n Design\n Mixed method longitudinal time 1 (T-1) and time 2 (T-2) case study design for a duration of 24 weeks from September 2020 to February 2021.\n \n Setting\n Phone interviews, per Centers for Disease Control and Prevention (CDC) social distancing guidelines, were held in the general community.\n \n Participants\n A single informal (non-compensated) family caregiver of a spouse with ALS. Convenience sample: The participant was referred by a hospital-based speech language pathologist.\n \n Interventions\n Not applicable.\n \n Main Outcome Measures\n 1) Qualitative interviews, 2) the Brief RCOPE (a 14-item measure of positive and negative religious coping with major life stressors), and 3) a health-related quality of life survey instrument (SF12v2).\n \n Results\n Longitudinal case study findings revealed changes from T-1 to T-2 for all measures. Negative religious coping was essentially unchanged, with two notable exceptions. At T-2, she no longer felt punished by God, nor questioned God s love for her. She also “somewhat wondered” whether her church had abandoned them. Positive religious coping which measures a sense of connection to God decreased. The health related quality of life measure indicated a decline in energy, physical health, and level of task accomplishment. Perceptions of the impact of the coronavirus were mixed. At T-1, she reported decreased pressure for managing appointments and visitors. By T-2, her feelings of isolation and loneliness increased.\n \n Conclusions\n In this case study, the ALS caregiver s perceptions of health related quality of life and religious coping appeared declined in the face of losses due to major life stressors; communication and swallowing abilities. This was evidenced by reporting feeling less connected to God, less productive during completion of tasks, and reduced energy. The duration of coronavirus precautions resulted in perceived increase in isolation and loneliness.\n \n Author(s) Disclosures\n No conflicts for any authors.\n