Ninnoni Jerry Paul K
School of Nursing and Midwifery, Department of Mental Health, University of Cape Coast, Cape Coast, Ghana.
BMC Neurol. 2019 Jan 19;19(1):12. doi: 10.1186/s12883-018-1235-9.
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.
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.
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.
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.
患有癫痫等慢性疾病会对患者及其护理人员产生使人衰弱的影响。由于沟通有限，在学习障碍患者中管理癫痫可能是一项挑战，可能需要多学科方法。该研究调查了患有癫痫的学习障碍患者及其医生、护士和护理人员的沟通和信息需求。
采用定性设计从15名患有轻度学习障碍且患有癫痫的社区患者和13名护理人员中收集数据。记录的数据逐字转录并进行主题分析。
出现了一系列与患者沟通和信息需求相关的结果。这些包括：关于癫痫的知识；参与度；提供信息时的诚实和开放以及信息提供的一致性。
患有癫痫的学习障碍患者及其护理人员希望更多地了解癫痫，通过在癫痫管理中的沟通更多地参与决策，以便他们能够反馈有关其健康的信息。
