A patient-centered approach to understanding long-term psychosocial adjustment and meaning-making, 15 to 20â¯years after epilepsy surgery.
Epilepsy Behav
; 102: 106656, 2020 01.
Article
en En
| MEDLINE
| ID: mdl-31778879
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 (2-5â¯years). Currently, however, there is a lack of qualitative research examining longer-term (>15â¯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 20â¯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 20â¯years ago (24 females; 26 left-sided). Median age at habitual seizure onset was 9.7â¯years (Interquartile range; IQRâ¯=â¯13.8), and at surgery was 31â¯years (IQRâ¯=â¯12). Median length of follow-up was 18.4â¯years (IQRâ¯=â¯4.3). Comprehensive one-on-one interviews (median timeâ¯=â¯86â¯min, IQRâ¯=â¯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 (<5â¯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.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Atención Dirigida al Paciente
/
Lobectomía Temporal Anterior
/
Narración
/
Epilepsia
Tipo de estudio:
Observational_studies
/
Prognostic_studies
/
Qualitative_research
Límite:
Adult
/
Female
/
Humans
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Male
/
Middle aged
Idioma:
En
Revista:
Epilepsy Behav
Asunto de la revista:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
Año:
2020
Tipo del documento:
Article