Huibrie C Pieters1, Sandra R Dewar2, Lizza Ranit3, Tomoko J Iwaki4, Jerome Engel2. 1. School of Nursing, University of California Los Angeles, Los Angeles, USA. 2. Seizure Disorder Center, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, USA. 3. New York Presbyterian-Columbia, New York, USA. 4. Silver School of Social Work, New York University, New York, USA.
Abstract
OBJECTIVE: To explore decision-making from patients' perceptions of risks and benefits of epilepsy surgery for refractory focal seizures. METHODS: Using constructivist grounded theory, in-person interviews were conducted with 35 adults with refractory focal epilepsy who were undergoing a pre-surgical evaluation or who had consented for surgery. RESULTS: For this sample of participants decision-making about surgery was complex, centering on the meaning of illness for the self and the impact of epilepsy and its treatment for significant others. Two interrelated categories crystalized from our data: the unique context of brain surgery and how the decisional counterweights of risks and benefits were considered. DISCUSSION: Exploring components of decision-making from the patients' perspective afforded an opportunity to describe thought processes intrinsic to how people with drug-resistant epilepsy weighed their treatment options. Tensions were evident in how decisions were made. We use the analogy of an imaginary tightrope-walker to create a visual image of what patients face as they consider the illness experience (past and present), their hopes for the future, and the simultaneous uncertainty centered around balancing the counterweights of treatment risks and benefits.
OBJECTIVE: To explore decision-making from patients' perceptions of risks and benefits of epilepsy surgery for refractory focal seizures. METHODS: Using constructivist grounded theory, in-person interviews were conducted with 35 adults with refractory focal epilepsy who were undergoing a pre-surgical evaluation or who had consented for surgery. RESULTS: For this sample of participants decision-making about surgery was complex, centering on the meaning of illness for the self and the impact of epilepsy and its treatment for significant others. Two interrelated categories crystalized from our data: the unique context of brain surgery and how the decisional counterweights of risks and benefits were considered. DISCUSSION: Exploring components of decision-making from the patients' perspective afforded an opportunity to describe thought processes intrinsic to how people with drug-resistant epilepsy weighed their treatment options. Tensions were evident in how decisions were made. We use the analogy of an imaginary tightrope-walker to create a visual image of what patients face as they consider the illness experience (past and present), their hopes for the future, and the simultaneous uncertainty centered around balancing the counterweights of treatment risks and benefits.