Abstracts

RATIONALE: Intractable epilepsy has a deleterious effect on patients and their families, including psychological, psychiatric, behavioral and interpersonal difficulties. Corrective surgery is highly successful in eliminating or reducing the frequency of seizures. Yet it is unclear what effect this change in the health status of the individual has on family functioning. This qualitative study of six families explored their pre-surgery and post-surgery experiences. At the end of this presentation, participants will understand the impact of epilepsy on family functioning and the problematic non-cumulative psychosocial changes that occur post-surgically when the patient and family experience [dsquote]sudden health.[dsquote]
METHODS: An exploratory qualitative study was conducted to answer the following question: What is the experience of families with a member who elects to have surgery to correct epilepsy? Fourteen patients and families were screened for the study meeting the sample criteria: 1) 20 years old or older; 2) intractable seizures for 5+ years; 3) living with family members; 4) eligible for corrective surgery; 5) able to engage in an interview. Six families were enrolled. Pre- and post-surgery (6-8 months) semi-structured interviews were conducted and videotaped in the subjects homes. The interviews were transcribed and summaries of each set of family interviews were written. These summaries were reviewed by the families for corrections or changes. The videotapes, transcripts and summaries were reviewed by six outside reviewers to validate the data. A constant comparative methodology was used to analyze the data which included re-review of all data for key word phrases which were them combined into categories and finally into broad themes.
RESULTS: Findings to be presented are: 1) families develop two broad forms of organization in response to epilepsy--a) families with an adult spouse/parent whose epilepsy originated in childhood/adolescence develop a nesting phenomenon in which the member is both protected by and isolated from the family; family functioning around other issues follows a similar structure; the epilepsy is integrated into the family and determines how the family functions around a variety of issues; b) families in which the member develops epilepsy in adulthhood do not nest; their orgaization reflects a crisis functioning mode in which the epilepsy is never integrated into the family structure. 2) the post-surgery phase is characterized by an expereince of [dsquote]sudden health[dsquote] that includes non-cumulative psychosocial changes in the patient and family that can not be predicted and which often create difficulties with adjustment; these changes are most disruptive for families with a nesting structure because they more directly challenges the normative role that epilepsy has played in family life.
CONCLUSIONS: These findings regarding family structure and post-surgical adjustment have not been reported anywhere in the literature. Further study is called for to determine the genralizability of these exploratory findings.