Epilepsy services in Ireland: 'A survey of people with epilepsy in relation to satisfaction, preferences and information provision'

Abstract

Background: A challenge facing modern health care systems is to develop and implement new models of service that deliver increased capacity while providing a higher-quality, more cost-effective service within resource constraints. Incorporating the experience of people with epilepsy must be seen as central to the effectiveness of service design and delivery. This paper, therefore, reports the views of people with epilepsy with regards to health service delivery in Ireland.

Method: A cross-sectional descriptive survey design involving both quantitative and qualitative items was administered to a convenience sample of one hundred and two people with epilepsy (n=102) attending an epilepsy specialist centre.

Results: Despite high levels of satisfaction with hospital and primary care, participants offered several suggestions to improve healthcare delivery, such as: less delay in accessing specialist care and hospital appointments; better communication; and easier access to investigatory services. Findings demonstrate that for people with epilepsy the burden of the disorder is substantial and complex encompassing social, psychological and structural difficulties. Poor information provision particularly among women is reported. Furthermore, a lack of empowerment in people with epilepsy is highlighted.

Conclusion: This study has implications for the reform and development of epilepsy services in relation to practice, education and research. It provides a basis for an evaluation of current practice and identifies opportunities for future service reorganization to improve the quality and efficiency of healthcare provision.

Keywords: Epilepsy services; Information provision; Ireland; Preferences; Satisfaction.