| Popis: |
Epilepsy is not just a medical condition but a social label; successful clinical treatment is therefore only one aspect of epilepsy management. However, the particular ways in which features of an individual’s background and clinical condition influence the impact that epilepsy has on them is not yet fully understood. The voice of the individual living with epilepsy is at the core of this study. Drawing upon research on illness narratives, this qualitative study is embedded in the perspective that knowledge construction relies upon the socially crafted tool of language which facilitates a broader range of perspectives and promotes greater subjectivity. I draw upon the illness stories of fourteen adults with epilepsy to explore how the condition impacts directly or indirectly on daily living and life trajectories, and to re-present the diverse nature and meaning of having epilepsy, including its stigma potential. I conducted in-depth interviews with seven male and seven female participants attending epilepsy outpatient clinics. Interview transcripts were subjected to paradigmatic and narrative analysis in order to examine thematic similarities and differences. Participant stories were identified using Mishler’s theoretical model of ‘Core Narrative’. Narrative encounters with participants reflected both their recent and more distant experiences of epilepsy. What emerged from the stories was a discourse of disruption and difference, with epilepsy often imposing barriers to daily living and to maintaining a positive sense of self as participants searched for meaning. While the stories told were uniquely individual, collectively a dominant plot was seen to emerge. For the adults with epilepsy in this study the plot takes the individual from a beginning of ‘discovery and diagnosis’, through the process of ‘searching for a cause’, ‘negotiating risk and uncertainty’, and, ‘striving for control’. As individuals communicate what is significant to them, attention to patient stories provides insight into how experience is constructed and evolves over time. Due consideration of such stories by health professionals can offer direction in which intervention(s) can occur to ensure the interests and needs of the individual with epilepsy are holistically considered and met. |
