Surgical decision-making among patients with uncontrolled epilepsy: "Making important decisions about my brain, which I happen to love".

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.

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support.

PURPOSE: To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. METHODS: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18-68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. RESULTS: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decision-making. A clinically useful Theory of Reciprocal Burden resulted from our study. CONCLUSIONS: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.