PERCEIVED ACCURACY OF INFORMATION SOURCES CONSULTED BY FAMILIES WHOSE CHILDREN HAVE EPILEPSY

Objectives: To assess which information sources are accessed by families whose children have epilepsy and the perceived accuracy of these sources.

Methods: A structured interview of 84 families of children with epilepsy followed through the Neurology or Refractory Epilepsy clinics of a tertiary care children's hospital was conducted to assess epilepsy-specific information sources accessed and perceived accuracy of these sources.

Results: Families accessed a mean of 3.5 sources within/specifically recommended by the clinic or family doctor and 4.1 sources outside of these areas. Families of children with intractable epilepsy, higher educated parents, but not those of higher socioeconomic status consulted more extensively. Perceived accuracy of information rated highest for clinic-recommended Internet sites (100%), clinic nurse (97%) and neurologist (93%). Sources external to clinic had variable ratings; those with 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 complimentary health providers also ranked highly.

Conclusion: Families whose children have epilepsy perceive the clinic nurse as a readily accessible and accurate source of information. Neurology-clinic recommended internet sites and books were more helpful to families than general handouts.