Information needs of parents about learning disabilities.

BackgroundA survey of over 400 parents and carers of children and adults with severe learning disabilities was undertaken in N. Ireland. The aim was to identify the persons they had approached for advice and were likely to do so in the future; the topics they were likely to want information on and their preferred means of obtaining information. Such data would have particular relevance to the setting up of national information centres as has been proposed by the Government in the recent White Paper on Learning Disability.ResultsThe most common mentioned informants were social workers and staff in schools and centres. GPs were named by nearly one-third respondents but little use had been made of voluntary services such as Mencap and Citizen Advice Bureau. A similar pattern was found regarding future informants.The most commonly reported topics on which parents would seek information were available services, leisure and holidays and benefits. However other topics varied according to the age of the child, with parents of children under 10 more likely to want information on education and therapies.The preferred means of getting information was through face-to-face contacts in the home and this was particularly marked with parents or carers of adult persons. ConclusionsAny specialised information service must be promoted among professional staff and should work in close partnership with them if the information needs and preferences of parents are to be effectively addressed.