Examining Perceptions Of Religious Coping, Health-Related Quality Of Life, And Healthcare Support Of ALS Caregivers

Abstract

<h3>Research Objectives</h3> This cross-sectional study (N=8) built on a prior longitudinal case study (N=1) with a similar aim; that of understanding ALS caregiver experiences by exploring declines in swallowing and communication in ALS patients based on the results of one qualitative and two quantitative measurements. <h3>Design</h3> A mixed method cross-sectional design. <h3>Setting</h3> The interviews were conducted over the phone, per Centers for Disease Control and Prevention (CDC) social distancing guidelines. <h3>Participants</h3> Eight informal (non-compensated) family caregivers of ALS patients. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> 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). <h3>Results</h3> Interview data revealed anxiety related to anticipated losses and capacity to meet progressive unrelenting needs of care receivers. In addition, caregivers reported an increased burden as the disease progressed, perceiving a lack of medical personnel training necessary to meet their needs. Caregivers' religious coping ratings attested to feelings of less connectedness with God as the disease progressed. Health quality of life measures suggested emerging issues based on health status, energy levels, pain, and available time for responsibilities. <h3>Conclusions</h3> The unique challenges of ALS caregiver experiences and burdens consist of complex emotional, clinical, financial, secondary supportive care needs, and environmental issues. These perceived experiences and burdens have clinical implications for improved communication in working with caregivers to better meet their needs. <h3>Author(s) Disclosures</h3> Nothing to disclose.