A patient-centered approach to understanding long-term psychosocial adjustment and meaning-making, 15 to 20 years after epilepsy surgery

Highlights

• Many patients consider surgery as a major life turning point.

• Early postsurgery (< 5 years), psychosocial disequilibrium was commonly described.

• Patients' narratives revealed a process of actively reestablishing equilibrium.

• Patients differed in how they reestablished this sense of equilibrium.

• A key difference was whether patients reported a lasting change in self-identity.

Abstract

Objective

Different psychosocial trajectories have been identified following treatment with epilepsy surgery, as patients adjust to possible changes in seizure frequency and the subsequent impact on their psychosocial functioning. Qualitative research has been key to understanding this adjustment process, particularly in the short-term (2–5 years). Currently, however, there is a lack of qualitative research examining longer-term (> 15 years) outcomes, precluding the same rich, detailed understanding of longer-term psychosocial outcomes. Using a grounded theory approach, we explored how patients reflected on and made sense of their adjustment trajectories, 15 to 20 years after surgery. This included the impact of surgery on their sense of self and broader psychosocial functioning.

Methods

We recruited 40 adult patients who had undergone anterior temporal lobectomy (ATL) 15 to 20 years ago (24 females; 26 left-sided). Median age at habitual seizure onset was 9.7 years (Interquartile range; IQR = 13.8), and at surgery was 31 years (IQR = 12). Median length of follow-up was 18.4 years (IQR = 4.3). Comprehensive one-on-one interviews (median time = 86 min, IQR = 28) were used to elicit patient experiences of their surgery and subsequent psychosocial outcomes. Data were analyzed using a grounded theory inductive–deductive process.

Results

Patient narratives revealed a common process of psychosocial change and meaning-making triggered by surgery, which was often perceived as a major turning point in life. Patients reflected on moving through an early postsurgical period (< 5 years) of upheaval and psychological disequilibrium. While this period was often remembered as stressful, difficulties were softened and/or reframed in hindsight. Through this process of reframing and meaning-making, patients were able to reestablish equilibrium and a sense of normality. Differences were evident in how patients navigated the process of meaning-making, and the extent to which they felt surgery had changed their self-identity.

Discussion

We propose a model of postsurgical meaning-making, evident in the narratives of patients who have undergone ATL, providing a new perspective on long-term psychosocial outcomes. This model contributes to our understanding of patient well-being and quality of life, by acknowledging the active role that patients play in seeking to create their own sense of normality after epilepsy surgery.

Introduction

Epilepsy surgery is the recommended treatment for patients with drug-resistant focal epilepsy, often resulting in better seizure and quality of life outcomes compared with ongoing treatment with medication [1]. Our current understanding of the impact of surgery on psychosocial functioning primarily spans the presurgical to initial five-year postsurgical period. This research has been invaluable for informing the short- to medium-term clinical management of patients undergoing this procedure by shedding light on the complex processes of learning to live without epilepsy or facing the uncertainty and disappointment of seizure recurrence [[2], [3], [4], [5], [6], [7]]. For some, successful surgery can result in a paradoxical increase in psychological distress and a process of identity change [3,4,8], and this research has provided clinicians with valuable information for improving early postsurgical psychosocial support [8]. Our understanding of the longer-term psychosocial adjustment process, however, is limited.

Research into long-term (> 15 years) psychosocial outcomes of epilepsy surgery generally shows improvements along with improved quality of life, particularly for those who achieve good seizure outcome [[9], [10], [11], [12], [13]]. Much of this research, however, focuses on the achievement of specific social milestones, commonly driving, employment, and rates of marriage. Alternatively, research focusing on psychological outcomes has been predominantly restricted to a few studies examining rates of depression and/or anxiety long-term [[14], [15], [16], [17]]. Far less is known about patient perspectives of the outcomes of their surgery, the possible resolution of early adjustment issues, and broader markers of psychosocial functioning. Likewise, no research has examined the active role that patients might play in making sense of their surgical outcomes and its impact on self-identity, despite two long-term studies alluding to the occurrence of ‘identity crises’ after the early follow-up period [17,18].

Qualitative research is key to achieving this deeper level of psychological understanding. Qualitative research provides valuable insights into the experience of living with epilepsy across the lifespan [[19], [20], [21], [22]], and allows researchers to examine the phenomenology of patient experiences and psychosocial processes not captured by statistical methods. To date, however, there are only two qualitative studies of the longer-term psychosocial outcomes of epilepsy surgery [17,23]. One of these, from our research group, focused specifically on patient experiences as they relate to the achievement of social milestones [23], while the other focused on patient expectations and the perceived costs and benefits of surgery [17]. No study to date has explored the psychosocial adjustment trajectories of patients in detail, including any impact on patient self-identity, giving rise to the aim of this study. In particular, we sought to develop a model of the process by which patients adjust to and make sense of their decision to undergo epilepsy surgery and its subsequent impact on their long-term psychosocial functioning.