Empowerment in Epilepsy Services: A ‘Soft Systems’ study referenced to Critical Social Theory and a Specialist Epilepsy Service in Ireland

Empowerment is an integral component of holistic practice and service design in health care, particularly as it relates to the improvement of quality of life for people with chronic illnesses. However, the literature suggests that empowerment is a neglected and poorly understood concept by service users and providers. This study explores the concept and dimensions of empowerment within an Irish epilepsy service using a ‘Soft Systems’ methodology (Checkland 1981) referenced to Critical Social Theory (CST). The study adopted a three phase mixed methods design to promote data analytical triangulation. The first phase involved a survey of people with epilepsy on their views of their service needs in relation to design and delivery. The second phase involved in depth interviews with people with epilepsy and service providers with reference to service user and clinician empowerment. This analysis was further informed by a non- participatory observation of services within one Irish epilepsy specialist service in Ireland. The final phase involved a focus group with people with epilepsy and service providers to identify desirable and feasible changes needed to facilitate empowerment within Irish epilepsy services. A situational analysis and conceptual model of empowerment within one Irish epilepsy specialist service is presented. Findings suggest that considerable improvements in terms of epilepsy services and care provision, communication, education, resources, empowerment strategies and supports are needed. The conceptual model of the service is compared to its service operation and wider inferences for the development and operationalization of epilepsy policy and practice within Irish epilepsy services is presented. Overall, the findings of this study contribute to the understanding and the literature relating to CST, empowerment and epilepsy health care.