The experience of families with a member who has surgery to correct epilepsy

What is the experience of families that have a member with epilepsy who elects to have corrective surgery? Two and a half million Americans have epilepsy. Of those persons, 31% have intractable seizures that cannot be controlled through anti-epilepsy drugs (AEDs). Many of these persons may be eligible for a surgical intervention to remove the seizure producing part of their brain. Most of these individuals have had a chronic course of epilepsy and have been cared for by family members and other loved ones for many years. While there is research that has focused on the medical and psychosocial outcome of the surgery for the patient, very little attention has been paid to the family's experience of the epilepsy and the surgery.;To explore this question I designed a collective case study using qualitative methodology. I used my internship site (The Epilepsy Center, University of Rochester Medical Center) to recruit families into the study. I enrolled 6 families over the course of six months, screening 15 families in the process. I developed semi-structured pre- and post-surgery interviews and I interviewed each family twice, once before the surgery and once 6--8 months after the surgery. All of the interviews were conducted in the subjects' homes and were videotaped.;The videotapes were transcribed and reviewed multiple times to identify themes that captured each family's individual experience. I then wrote descriptive summaries of each case, specifying key themes and supporting them with relevant quotes from the transcripts. These summaries were forwarded to each subject family for review, corrections and additions. Each family then returned the summaries to me. Six outside reviewers watched the videotapes (one reviewer per case), reviewed the summary and suggested additions or changes in the themes I had identified. In this way I was able to confirm the database before my analysis.;I then used a constant comparative method to identify the key themes that were common to all the families. Four important themes emerged: the role of epilepsy the family system; the experience of noncumulative change; the reality of stigma; and the role of meaning attribution in family coping.