Neurodegenerative Disease (e.g. MS, Parkinson’s disease)
Kathryn Lyndes, PhD, MDiv, MSW
Assistant Professor of Social Work and Gerontology
Saint Mary's College
Notre Dame, Indiana
Research objectives: To investigate the degree to which the progression of disease and subsequent 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.
Design: Mixed method longitudinal time 1 (T-1) and time 2 (T-2) case study design for a duration of 24 weeks, from September 2020 through February 2021.
Setting: Phone interviews, per Centers for Disease Control and Prevention (CDC) social distancing guidelines, were held in the general community.
Participant: 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.
Intervention: Not applicable
Main outcome measures: 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).
Results: Longitudinal case study findings revealed changes from T-1 to T-2 for all qualitative and quantitative measures. The perception of negative religious coping was essentially unchanged, with two notable exceptions. At T-2, she no longer felt punished by God, nor did she question God’s love for her. In contrast, at T-2, she “somewhat wondered” whether her church had abandoned her. She explained that members would not comply with CDC guidelines, which prevented attendance. The perception of positive religious coping also decreased from T-1 to T-2, which demonstrated reduced feelings of religious connection with God. The health related quality of life measure indicated a decline in perception of energy, physical health, and level of task accomplishment. Perceptions of the impact of the coronavirus on caregiving were mixed: positive and negative. At T-1, she reported a decrease in pressure for managing appointments and visitors. By T-2, her feelings of isolation and loneliness increased.
In this case study, the ALS caregiver’s perceptions of health related quality of life and religious coping appeared to decline in the face of losses due to major life stressors such as 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.
Key words: ALS, caregiver, quality of life, religious coping, dysphagia, communication