Informing parents of visually impaired children: who should do it and when?

Parents of sick or disabled children are likely to be more stressed than parents of non-disabled children and may benefit from being given information about their child's condition and its implications, but the stage at which parents should receive such information and who should provide it has not been fully investigated. The impact of written information on stress levels of parents of visually impaired children, seen in the ophthalmology clinic of a children's hospital, was explored in this study and the question of who parents thought should provide information, and at what stage, was also investigated.

A longitudinal, experimental intervention study was conducted to compare the effect on perceived stress levels of providing information about the implications of visual impairment to parents. Effects were compared according to the child's age and explored in relation to baseline stress levels. The study included a frequency analysis about parents' knowledge of visual impairment and how it relates to education, and their response to being given written information.

The results did not show an effect on levels of parental stress but did find that parents of school age children were more stressed than those of preschool age. Over 80% of participants considered that information was given too late and suggested it should be given soon after diagnosis. Of the controls, 32.6% thought the general practitioner should provide information on education although participants were more likely to expect the hospital to provide it.

The majority of parents would prefer to receive information soon after diagnosis of their child's visual impairment. Most parents do not know who to approach for information on education. Giving them access to patient liaison teams who could advise about the repercussions of visual impairment in children would be beneficial.