A qualitative study of the communication and information needs of people with learning disabilities and epilepsy with physicians, nurses and carers

BACKGROUND: Living with a chronic condition such as epilepsy can have a debilitating effect on the individual and their carers. Managing epilepsy among people with learning disabilities may present a challenge because of limited communication and may require a multidisciplinary approach. The study investigated the communication and information needs of people with learning disabilities with epilepsy and their physicians, nurses and carers. METHODS: Qualitative designed was adopted to collect data from 15 community-based people with mild learning disabilities with epilepsy and 13 carers. Recorded data were transcribed verbatim and analysed thematically. RESULTS: A range of findings emerged related to patient communication and information needs. These included: Knowledge regarding epilepsy; involvement; honesty and openness when giving information and consistency in provision of information. CONCLUSION: People with learning disabilities with epilepsy and their carers would like to know more about epilepsy, to be more involved decision makings through communication in the management of epilepsy to enable them feedback information regarding their health.