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

Stephanie Kilinc, Carol Campbell, Ali Guy, Anna Van Wersch

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People with epilepsy 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 people with epilepsy experience healthcare in the context of their lives.
Semi-structured interviews were conducted with thirty nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis 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 people with epilepsy require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for people with epilepsy, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.
Original languageEnglish
Article number106674
Number of pages7
JournalEpilepsy and Behavior
Early online date27 Nov 2019
Publication statusPublished - 31 Jan 2020


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