Support values through the eyes of the patient: An exploratory study into long-term support of persons with refractory epilepsy

A significant group of persons affected by refractory epilepsy require a wide range of long-term support from professionals as well as informal support givers. To enhance person-centeredness, it is important to know which patient values are associated with long-term support. An Internet survey produced a total of 1176 statements from 289 persons with epilepsy for analysis. Statements were expressed in the respondent's own words and were related to positive experiences (704) as well as possible areas of improvement (472) regarding the support received in the past six months. Thematic summaries of the survey results were presented to four focus groups of persons with epilepsy and proxies with a request to formulate the most important patient values which should be observed in long-term support. In iterative sessions with a panel of epilepsy experts, a framework of twelve value domains was formulated, organized in four major value clusters. An example of how these value domains can be operationalized for use in practice is next presented as a checklist to help evaluate the support patients with long-term support needs actually receive. Correspondingly, two sets of reflective questions were formulated for informal and professional support givers for the purpose of evaluating and improving person-centeredness in their support practices.