Choice and control: How involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector

Abstract

This study explored the extent to which people with epilepsy and their families have choice and control over the management of their epilepsy and the support provided in the Australian disability sector. It measured the level of direct involvement in planning and recording of their epilepsy health-care needs and support required through the use of epilepsy management plans. An Australian online survey was completed by 118 adults with epilepsy and 171 family members of children and adults with epilepsy, providing demographic and diagnostic data and details of their epilepsy management plan, whether they were involved in writing the plan and the extent to which it included their views on how they want to be supported. Results indicate that just over half of all respondents had an epilepsy management plan, with 83% revised within the past 12months. Although the majority of respondents were directly involved in writing their plan (87%), only two-thirds (66%) felt that their plan included their views on how they wanted to be supported. Open-ended comments from 111 respondents indicated their desire to be actively involved in this process, as either collaborative team members or ‘in charge’ of the process. In spite of a move towards person-centered approaches and greater choice and control, further emphasis must be placed on actively involving the person with epilepsy and their family in writing and incorporating their views on support within their epilepsy management plans. This research was undertaken by the Epilepsy Foundation to inform the development of epilepsy support resources for the newly introduced Australian National Disability Insurance Scheme.