Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis

Supplemental digital content is available in the text. OBJECTIVE: The aim of this study was to explore the information needs and preferred sources of information of Korean family caregivers of patients with amyotrophic lateral sclerosis (ALS). METHODS: Family caregivers of patients with ALS (n = 108) completed a structured questionnaire to assess their information needs and preferred sources of information. RESULTS: Most of the caregivers obtained health information from Internet searches (89.8%) and healthcare professionals (85.2%). The source rated most helpful was healthcare professionals, and that rated least helpful was broadcast media. Family caregivers who were younger than 50 years and well educated and caregivers of bulbar-onset ALS patients had higher scores of information needs. CONCLUSION: Providing information through healthcare professionals and self-support groups could enhance family caregiver satisfaction. Family caregivers who are older and less educated need to be more empowered to be involved in information-based caring, and caregivers of patients with bulbar-onset ALS have substantial information needs.