Effective communication with people with learning disabilities with epilepsy and their carers.
Ninnoni, Jerry Paul K.
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People with learning disabilities constitute about 2% of the general population. Epilepsy is more prevalent among people with learning disabilities compared with the general population. Effective communication is central to the management of people with learning disabilities and epilepsy. It has both therapeutic and health promotion functions including psycho-social benefits to the individual and their carers. Carers play vital roles in supporting individuals who live in the community to manage their conditions and the need for effective communication between service users and health care professionals is crucially important. Effective communication may not only lead to improved quality of life but may reduce mortality through the promotion of better understanding of seizures and encouraging efficient use of medication. Despite this communication regarding community-based adults with mild learning disabilities has not been fully studied, in particular the service users‘ views and experiences regarding communication has been a neglected area. Yet, the service users‘ views may be the best source for the definition of effective communication. This study was triggered by the paucity of research that investigated service users‘ views and experiences regarding communication. Furthermore, numerous health policies have been formulated that emphasise the involvement of patients as consumers in the provision and delivery of health services. This study is purported to bridge this communication gap by offering service users a rare opportunity for them to express their views and experiences regarding communication to inform health policies and clinical practice. This study adopts a naturalistic qualitative approach and employs in-depth semi-structured interviews to solicit service users‘ and their carers‘ views and experiences regarding communication. The interviews also investigated service users‘ and carers‘ perspectives in regard to communication with health care professionals‘. Carer communication diaries were used to supplement the carers‘ interview data and also to endorse the credibility of the study findings. Six main findings emerged from this study that described service users‘ and carers‘ views and experiences regarding communication: communication needs and expectations; ‗engagement‘ as a predictor of effective communication; strategies of communication; facilitating factors of communication; methods of communication; barriers to communication. This study suggests that effective communication with people with learning disabilities and epilepsy requires a reflective model that incorporates self-assessment and awareness of the individual‘s communication needs and expectations. The model and recommendations that emerged from this study may be a useful resource for health and social care professionals.