title: Where do families of children with epilepsy obtain their information?
abstract: A structured interview of 84 families of children with epilepsy followed through the neurology clinic of a tertiary care children's hospital was conducted to assess the epilepsy-specific information sources accessed and the perceived accuracy of these sources. Families accessed a mean of 3.5 sources from or specifically recommended by the clinic or family doctor and 4.1 sources outside these areas. Families of children with intractable epilepsy and higher-educated parents, but not those of higher socioeconomic status, consulted more extensively. The perceived accuracy of information rated highest for clinic-recommended Internet sites (100%), the clinic nurse (97%), and the neurologist (93%). Sources external to the clinic had variable ratings; those with the greatest perceived accuracy included other Internet sites or family members within the medical profession (85% for both) and lay organizations (84%). Friends within the medical profession, other families, and complementary health care providers also ranked highly. Recommendation of sites and books by epilepsy clinics is more helpful than general handouts.
authors.affiliation: Department of Biological Sciences, University of Calgary, AB, Canada.
authors.forename: Cathy
authors.initials: C
authors.lastname: Lu
authors.forename: Elaine
authors.initials: E
authors.lastname: Wirrell
authors.forename: Marlene
authors.initials: M
authors.lastname: Blackman
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004522:Educational Status; D004827:Epilepsy; D005192:Family Health; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D007223:Infant; D007255:Information Services; D007398:Interpersonal Relations; D008297:Male; D010353:Patient Education as Topic; D011369:Professional-Patient Relations; D011786:Quality Control; D012923:Social Class