Characterising the long-term psychosocial outcomes of surgery for temporal lobe epilepsy
AffiliationMelbourne School of Psychological Sciences
Document TypePhD thesis
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© 2020 Honor Emily Angharrad Coleman
Surgery is currently the recommended treatment for patients with drug-resistant epilepsy and a well-localised seizure focus. While the focus is on eliminating seizures, it is well-recognised that a good seizure outcome does not automatically equate to improved psychosocial functioning. Our understanding of the psychosocial outcomes of surgery is supported by a wealth of short- (<2 years) to medium-term (<10 years) research. Relatively less is known, however, about patient experiences and psychosocial outcomes over the longer-term. The current thesis conducted a qualitative exploration of the long-term (15-20 years) psychosocial outcomes of surgery for the treatment of temporal lobe epilepsy (TLE), supported by targeted secondary quantitative analyses. Forty adult patients who had undergone anterior temporal lobectomy (ATL) at the Austin Health Comprehensive Epilepsy Program (CEP) between 1994 and 2001 were recruited. Comprehensive one-on-one interviews elicited patient experiences of their surgery and subsequent psychosocial trajectories, supplemented by well-validated questionnaires assessing mood and quality of life, as well as a novel online survey (Living with Epilepsy) examining patient perceptions of their epilepsy and surgery. Finally, reviews were conducted of patient pre- and post-surgical CEP psychosocial records and of detailed long-term follow-up seizure data. Data were analysed using well-established qualitative and quantitative methodology. Study 1 mapped the achievement of key social milestones over the 15- to 20- year post-surgical period and used thematic analysis to explore these experiences from the patient perspective. A common pattern of milestones emerged as patients progressed through achieving return to driving, education and vocational outcomes and finally, family outcomes. This was felt to resemble a process of psychosocial development, providing a broader theoretical framework for understanding post- surgical social trajectories. Building on this, Study 2 used grounded theory analysis to explore how patients reflected on and made sense of their overall post-surgical psychosocial experiences. The resulting model identified surgery as a major life turning point, which could prompt early post-surgical adjustment difficulties and psychological ‘disequilibrium’. Patients then sought to re-establish a sense of normality, drawing on processes of reframing and meaning making. Meaning making refers to the process of integrating experiences and emotional learning into the self-concept. Given psychosocial development and meaning making are both important processes for identity development, Study 3 characterised personal identity and Study 4, social identity, at long-term follow-up. The majority of patients demonstrated a personal identity profile characterised by a higher level of commitment to, rather than exploration of, psychosocial roles and values. The ability to embrace self-identity development and meaning making (as described in Study 2) was associated with higher health-related quality of life (HRQOL), pointing to a process of positive psychological growth as a result of undergoing surgery. Study 4 further highlighted the powerful role of social identity for patient well-being; identifying as someone without epilepsy post- surgery was associated with higher HRQOL, over and above seizure outcome. In conclusion, this thesis represents the longest qualitative follow-up of the psychosocial outcomes of ATL to date. Findings delineated the complex nature of the longer-term post-surgical psychosocial adjustment process and the importance of understanding the patient experience for promoting well-being. It is hoped that this information can be used to guide the development and refinement of comprehensive pre- and post-surgical counselling and rehabilitation programs.
KeywordsEpilepsy; Epilepsy surgery; Psychosocial outcomes; Qualitative; Grounded theory; Identity
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