Who cares? A scoping review on intellectual disability, epilepsy and social care

Abstract

Purpose: Nearly a quarter of people with Intellectual disability (PwID) have epilepsy. Many have seizures across their lifetime. In the UK supporting their epilepsy linked risks and needs, particularly in professional care settings and in the community, requires significant social care input. Therefore, the interface between social and health care services is important. This study aim is to identify key intersectional areas of social provision for PWID and epilepsy.

Methods: A scoping review of the literature was performed in accordance with PRISMA guidance with suitable search terms. The search was completed in CINAHL, Embase, Psych INFO, SCIE, and Cochrane electronic databases by an information specialist. A quality assessment was completed for the included studies where appropriate. The included studies were analysed qualitatively to identify key themes and provide a narrative description of the evidence by two reviewers.

Results: Of 748 papers screened, 94 were retrieved. Thirteen articles met the inclusion criteria with a range of methodologies. A thematic analysis generated four key categories for significant social care involvement i.e., staff training and education; emergency seizure management; holistic approach to care; and nocturnal monitoring and supervision.

Conclusions: PwID with epilepsy have support needs that require fulfilling by various aspects of special care provision, many within the social ambit. Inspite of evidence of these needs and recurrent calls to work jointly with social care providers this has not happened. There is limited research into social care role in epilepsy management in PwID which needs addressing.

Keywords: Basic epilepsy training; Emergency seizure management; SUDEP; Social care; Staff training, nocturnal monitoring.