Abstract
BackgroundLiving 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.MethodsQualitative 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.ResultsA 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.ConclusionPeople 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.
Highlights
Living with a chronic condition such as epilepsy can have a debilitating effect on the individual and their carers
The study yielded a range of concerns relating to patients and carers’ communications needs with doctors and nurses
The findings indicated that service users have numerous communications need with their doctors, nurses and carers which appears to be impacting on quality of life
Summary
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. Effective communication is more than just providing information but transactional between the communication partners. It involves understanding the emotion and reasons behind the information. Effective communication is central to the management of service users who have learning disabilities with epilepsy and their doctors, nurses and carers. The individual with epilepsy will need to have knowledge of the condition and Ninnoni BMC Neurology (2019) 19:12
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