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Abstract
Purpose
The purpose of this study was to understand and describe the illness experience of married Korean women with epilepsy.
Methods
Data were collected during 2015~2016 through individual in-depth interviews with 12 married women with epilepsy. Verbatim transcripts were analyzed using Giorgi's phenomenological analysis to uncover the meaning of the illness experience of the participants.
Results
The study results showed that the illness experience of married Korean women with epilepsy was clustered into a specific description of situated structure and a general description of situated structure. Six themes from 20 meaning units were identified: 1) Undermined self-esteem with stigma of being epileptic; 2) Limited social interaction; 3) Suffering sorrow as a ‘disqualified being’; 4) Shuttling back and forth across the boundary between healthy and epileptic; 5) Desperate struggle to meet the expectation of given role; 6) Self-empowering through self-restriction and realization.
Conclusion
The findings from this study show that both the enacted and felt stigma of epilepsy impact on the life of married Korean women with epilepsy. Although the participants face social and interpersonal restriction and prejudices, they try their best to fulfill their role rather than to be cared for as patients. As the stigma and hardships of the participants are related to lack of knowledge, health professionals should focus not just on clinical intervention but also on providing targeted educational programs and counseling for these women to dispel the stigma of the disease and to increase their quality of life.
References
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Table 1.
Demographic and Illness-Related Characteristics of the Participants
*Seizure type 1=severe generalized convulsive seizures which are often accompanied by secondary traumatic injury; 2=infrequently occurring generalized convulsive seizures with no secondary traumatic injury; 3=complex partial seizure without generalization; 4=subjective sensory or psychic symptoms without any motor signs; †Seizure Frequency 1=none within a year; 2=more than once a year; 3=more than once a month; 4=more than once a week.
Table 2.
Specific General Situated Structure of the Illness Experience of Married Korean Women with Epilepsy
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