Examining perceptions of religious coping, health-related quality of life, and healthcare support of ALS caregivers

The unique challenges of ALS caregiver experiences and burdens consist of complex emotional, clinical, financial, secondary supportive care needs, and environmental issues. These experiences and burdens have clinical implications for improved communication in working with caregivers to better meet their needs. In this cross-sectional research study, we focused on exploring the impact of declines in swallowing and communication with interview data that rated religious coping, health related quality of life, and perceived healthcare support. Anxiety related to anticipated losses and capacity to meet the progressive unrelenting needs of caregivers was revealed. Religious coping and feeling of connectiveness with God as the disease progressed was also impacted. In addition, caregivers reported an increased burden as the disease progressed, perceiving a lack of medical personnel training necessary to meet their needs.