Title

Negotiating the boundaries of the medical model: Experiences of people with epilepsy

Document Type

Article

Source of Publication

Epilepsy and Behavior

Publication Date

1-1-2020

Abstract

© 2019 Elsevier Inc. People with epilepsy (PWE) continually report dissatisfaction with the support they receive, particularly in regard to their psychological wellbeing. With its focus on optimal seizure control, epilepsy treatment is entrenched in the medical model of illness, despite growing evidence of the broader psychosocial impact of the condition. This study aimed to explore how PWE experience healthcare in the context of their lives. Semistructured interviews were conducted with thirty-nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis (IPA) was conducted, and three superordinate themes were identified. Firstly, “negotiating the space between health and illness” identified how participants rejected the illness identity and struggled with a treatment regime, which reminded them of the longevity of their condition. Secondly, “tensions in adopting a biomedical perspective” considered how medical professionals overlooked the negative side effects medication had on participants' lives, in favor of optimal seizure control. Thirdly, “the need for broader support” highlighted the additional psychosocial support PWE require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for PWE, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.

ISSN

1525-5050

Publisher

Academic Press Inc.

Volume

102

First Page

106674

Disciplines

Medicine and Health Sciences | Psychology | Social and Behavioral Sciences

Keywords

Epilepsy, Healthcare experience, Interpretative phenomenological analysis, Person-centered healthcare, Psychosocial support, Qualitative

Scopus ID

85075523542

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

Indexed in Scopus

yes

Open Access

yes

Open Access Type

Green: A manuscript of this publication is openly available in a repository

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