Do Hospitals Satisfy Our Healthcare Information Needs for Rare Diseases?: Comparison of Healthcare Information Provided by Hospitals with Information Needs of Family Caregivers

Abstract

ABSTRACT This study uses a cross-sectional online survey approach to investigate the gap between healthcare information provided by hospitals and family caregivers’ information needs and the relationship between demographic factors and information satisfaction. The results indicate that family caregivers have diverse healthcare information needs for daily care, but the information provided by hospitals could not satisfy these information needs most of the time. Family caregivers’ information satisfaction was unrelated to various demographic factors, such as age, race, education level, and annual household income. Family caregivers who were male and spent less time searching for rare disease related information and whose children received a rare disease clinical diagnosis and spent more days in hospitals after birth expressed higher information satisfaction. Based on the findings, this study recommends strengthening continuing education of physicians about rare diseases to increase diagnosis and conducting information literacy assessments of family caregivers to better meet their information needs about daily care.