Abstract:
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.
