Information seeking behaviors of parents whose children have life-threatening illnesses.

Objective: For children with life-threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e-health literacy of Internet-users.

Methods: Cross-sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida.

Results: Four out of five parents report that they use the Internet, and 64% of Internet-users use it daily. Parents who never use the Internet, versus parents who do use the Internet, are predominately Hispanic (50%) and have less than a high school education (64%) (P ≤ 0.023). Internet-users have high levels of e-health literacy; however, they are not confident or are unsure about the quality of information on the Internet. Not having graduated from high school was associated with a decrease in e-health literacy and using the Internet as the primary information source (vs. doctor as primary source) was associated with an increase in e-health literacy.

Conclusions: Parents of children with life-threatening illnesses have access to and use the Internet as a source of information about their children's health. More information is needed to explore how electronic-based interventions could be used to impact information seeking of parents whose children are in pediatric palliative care programs.