Where Do Families of Children With Epilepsy Obtain Their Information?

Author:

Lu Cathy1,Wirrell Elaine2,Blackman Marlene3

Affiliation:

1. Department of Biological Sciences, University of Calgary, Calgary, AB, Canada

2. Departments of Paediatrics and Clinical Neurosciences, University of Calgary, Calgary, AB, Canada,

3. Refractory Epilepsy Clinic, Alberta Children's Hospital, Calgary, AB

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. ( J Child Neurol 2005;20:905—910).

Publisher

SAGE Publications

Subject

Clinical Neurology,Pediatrics, Perinatology, and Child Health

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