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

Pediatr Blood Cancer. 2011 May;56(5):805-11. doi: 10.1002/pbc.22674. Epub 2010 Dec 7.


Objectives: 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.

Study design: 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.

Conclusion: 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.

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Critical Illness / psychology*
  • Cross-Sectional Studies
  • Female
  • Health Education
  • Humans
  • Infant
  • Information Seeking Behavior*
  • Internet / statistics & numerical data*
  • Male
  • Palliative Care*
  • Parents / psychology*
  • Prognosis
  • Young Adult