The Views of People with Learning Disabilities with Epilepsy Communication with Carers and Healthcare Professionals

Abstract

Effective communication plays a crucial role in the management of people with learning disabilities with epilepsy. The literature suggests that poor adherence to treatment is higher among people with learning disabilities. This is attributed to a range of factors including communication difficulties, poor information provision and cognitive impairments. Effective communication has both therapeutic and health promotion functions. This study aimed to solicit services users and carers experiences and perspectives regarding communication with health and social care professionals. Methodology: The study adopted qualitative exploratory approach using in depth interviews and communication diaries. It was a community-based study involving people with learning disabilities with epilepsy in the North-Eastern part of Scotland. Sample size consisted of 28 community-based adults aged 16-50. Informed consent was obtained from the participants and ethical clearance was given by the Grampian Research Ethics Committee. Analysis: Data-driven analysis was applied based on Systematic Text Condensation to produced descriptive findings Findings: Analysis revealed that services users and carers views and experiences of communication with healthcare professionals were largely negative. They reported that they were not being listened to by healthcare professionals although this report varied with individual healthcare professionals and also with the professional discipline. Service users reported that the quantity and quality of information obtained from healthcare professional were limited. Conclusion: The findings suggest that effective communication with people with learning disabilities with epilepsy requires that healthcare providers adopt a listening approach and involve service users as consumers of healthcare services with the rights to information which may improve quality of life.