Caregivers of ALS Patients: Their Experiences and Needs

Abstract We explored the care experiences and needs of the home caregivers of patients with amyotrophic lateral sclerosis (ALS) to improve their quality of life. We interviewed home caregivers in-depth and analyzed the data using Colaizzi's descriptive phenomenological method. We interviewed 11 home caregivers of patients with ALS with a disease duration between 1.5 and 4 years. Primary caregivers were predominantly female and were the patients' spouses. Daily caregiving time averaged 4–14 h for 0.5–3.5 years. Interview themes included helplessness and adaptation to life changes, hopelessness, compassion for the patient’s prognosis, and expectation for diverse support. The study sample size was limited, as all participants were from a single tertiary hospital, and all patients had severe functional impairment. Caregivers of patients with ALS experience a considerable burden. Patients and their caregivers can benefit from diversified support channels, and assistive communication systems can be applied to home care. Future research will focus on in-home public long-term care services in China.