Journal List > J Korean Acad Nurs > v.47(3) > 1003237

Shon and Joung: Illness Experience of Married Korean Women with Epilepsy



The purpose of this study was to understand and describe the illness experience of married Korean women with epilepsy.


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.


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.


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.


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Table 1.
Demographic and Illness-Related Characteristics of the Participants
No. Age (year) Duration of marriage (year) Education Occupation Number of children Duration of illness (year) Seizure type* Seizure frequency Diagnosis (before or after marriage)
1 44 17 High school None 1 41 4 1 After
2 46 15 (separated) University Full time none 29 4 1 Before
3 50 13 High school None none 7 3 1 After
4 34 8 University None 1 22 2, 3 3 Before
5 35 1.6 College Part time none 31 4 4 Before
6 40 10 High school None 2 15 3, 4 4 Before
7 46 13 (divorced) University None none 38 2, 4 2 Before
8 39 16 High school Full time 2 16 2 2 Before
9 34 7 High school None 2 33 4 2 Before
10 41 7 High school None 2 29 1 2 Before
11 55 23 (bereaved) Middle school Part time 2 43 1 3 Before
12 64 37 College None 1 46 3 2 Before

*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
Themes Meaning units Identification number of patients
Undermined self-esteem with stigma of Feeling devalued P1, P2, P3, P4, P5, P6, P7, P8, P9, P10, P11, P12
being epileptic Fear of exposure P2, P3, P4, P5, P6, P7, P8, P9, P10, P12
Feeling of shame P2, P3, P4, P5, P7, P11
Limited social interaction Suffer in silence P1, P2, P3, P4, P5, P6, P7, P9, P10, P12
Loneliness P2, P4, P5, P6, P7, P9, P10, P12
Isolation P2, P4, P5, P6, P7, P9, P10
Depression P2, P4, P5, P6, P7, P9, P10, P11
Suffering sorrow as a ‘disqualified being’ Giving up P1, P2, P3, P4, P8, P10, P11, P12
Feeling excluded P2, P6, P7, P9, P11, P12
Being rejected P1, P5, P6, P7, P9
Anger against overprotection P3, P4, P8, P11, P12
Shuttling back and forth across the boundary between Oblivion to the disease P1, P2, P3, P4, P8, P11
healthy and epileptic Being downhearted P2, P7, P8, P9, P10, P11
Ignorance and uncertainty P1, P2, P3, P4, P6, P7, P8, P9, P10, P11, P12
Rejection to medication P1, P2, P3, P4, P6, P7, P8, P9, P10, P11, P12
Desperate struggle to meet the expectation of Fulfilling responsibility P1, P2, P3, P6, P7, P8, P9,P10, P11, P12
given role Ambivalence P1, P2, P3, P5, P10, P11, P12
Noncompliance P6, P8, P9, P10, P11
Self-empowering through self-management and Self-restriction P1, P2, P3, P4
realization Realization P1, P2, P3, P4, P6, P7, P8, P9, P11, P12
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