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Information Sources and Their Use by Parents of Children with Ophthalmic Disorders

¹From the Centre for Paediatric Epidemiology, the ²Department of Ophthalmology, and the ⁴Visual Sciences Unit, Institute of Child Health, Great Ormond Street Hospital, London, United Kingdom; and the ³Department of Epidemiology, Institute of Ophthalmology, London, United Kingdom.

PURPOSE. Parents’ input is critical to clinical management in pediatric ophthalmology. The importance of providing parents with appropriate information to enable them to participate effectively is recognized. However, little is known about the range of sources parents use to learn about their child’s ophthalmic condition, which sources they find most useful, and how this relates to their understanding.

METHODS. Cross-sectional survey of the parents or usual caregivers of children with diverse ophthalmic disorders, diagnosed at least 1 year earlier, who attended pediatric ophthalmology clinics at Great Ormond Street Hospital, London, during 1 week in August 2001.

RESULTS. Eighty-nine percent (n = 58) of parents with eligible children participated. Most parents received information from more than one source, with ophthalmologists (79%) and family practitioners (42%) being the two most frequently reported. Family support groups and voluntary organizations (29%) and the Internet (23%) were less commonly cited than anticipated. Parents reported receiving verbal information much more frequently than written information from professionals working with their children. Although 72% (n = 42) of parents could correctly name their child’s diagnosis, only 46% (n = 27) were able to describe correctly the nature and impact of the disorder(s). Ophthalmologists were ranked as the most important source overall.

CONCLUSIONS. The findings emphasize the key role of ophthalmic professionals in improving parental education directly, as well their responsibilities and opportunities to do so through supporting and shaping information provision through other sources, especially colleagues in primary care and the Internet.

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