Abstract
Learning disabilities make day to day functioning more difficult, often requiring daily support for safety, activities of daily living, decision making, health and wellbeing needs and communication (Robertson et al., 2015). Epilepsy is the most common neurological disorder in people with learning disabilities (Robertson et al., 2015). This is consisted of reoccurring seizures of an unprovoked nature from electrical activity in the brain (Craft and Gordon, 2019). Epilepsy is manageable pharmacologically, however, in 30% of cases and larger percentages for people with learning disabilities, seizure remission through medication is not possible (NICE, 2022; Prasher and Kerr, 2016). Hence, the need to self-manage epilepsy and its risks and non-pharmacological treatments in the community.
Objective: This integrative review aims to capture what is known about self-management of epilepsy in people with learning disabilities, identify research gaps and recommendations.
Methodology: Selected papers were compared against the inclusion criteria: peer reviewed, English language, published ? 2015 July, on epilepsy in people with learning disabilities, on self-management approaches or nursing care of this population and a Joanna Briggs Institute (2017) appraisal score of 70%. Using the search strategy through: CINAHL, EBSCO Host, Joanna Briggs Institute, Medline, PsycINFO, PubMed, Wiley online library and relevant grey sources, the sample was collated for a thematic analysis.
Findings: With a sample of ten papers a major theme of lack of research was discovered early, with sub-themes of self-management enablers, education and person-centred care found in the sample. Self-management enablers encompassed the redefining of self-management for people with learning disabilities to supported self-management, and discussed some of the self-management tools/approaches to drug-resistant epilepsy, however encountered a general lack of research for this specifically for people with learning disabilities. Education was brought to light due to the lack of appropriate resources and little to no education given, therefore making self-management a self-discoverable task. Finally, the sub-theme of person-centred care was highlighted due to grey sources confirming its best practice, however, people's experiences were the opposite with people feeling overlooked, dismissed, and with an overall lack of collaboration. Large gaps in research exist with little/no studies on the efficacy of self-management approaches in epilepsy in people with learning disabilities.