PURPOSE: To determine whether there is a discrepancy between the medical professions perception of what patients should know and that of the patients themselves, we studied patients need to be informed about different aspects of epilepsy and compared findings with medical personnels perceptions of the issue.
METHODS
Our study population consisted of 39 patients with epilepsy from the inpatient epilepsy unit, and 51patients from the outpatients clinic of the S. University Hospital between July and November 1997. However, the patients who declined to participate or who were not able to understand the directions and content of the questionnaire were excluded. The medical personnel participated in this study were 56 residents or nurses who were working in either Neurology or Neuro surgery Units. The questionnaire consisted of 6 categories with a total of 79 questions. The responses were indicated on a 5point Likert scale with 5 indicating the highest need . The data were analyzed with descriptive statistics, students t-tests, and chi-square.
RESULTS
Of the 90 patients and 56 medical personnel studied, the need for lifestyle information such as smoking, drinking, sleep, driving, employment, and marriage was significantly higher from medical personnel than that of the patients(p=0.00). Regarding medical knowledge about epilepsy, the patients group had higher scores in the need for information on the structure of the brain (p=0.00), whereas medical personnel had higher scores on the symptoms of epilepsy. There was no correlation between the length of epilepsy and the need for information on every item on the questionnaire. The patients had higher rank regarding diet, although it was not significantly different from the medical personnel. Regarding antiepileptic drugs and what to do when there is an attack, medical personnel scored higher. The items on which the patients group scored higher than 4.5 were the possibility of inheritance, the factors that might reduce the number of attacks, the period of usage of AED, and the food they have to avoid or the food they have to take to reduce seizure attacks.
CONCLUSIONS
Our study indicates that the patients group requires higher educational need in the structure of the brain, diet, and surgical treatment, but less in lifestyles and what to do when there is an attack. The educational program for the patients with epilepsy should emphasize medical knowledge with regard to brain anatomy, what to eat and what to avoid, and details of surgical treatment.
The purpose of this study was to test the effects of a epilepsy education program as a nursing intervention for patients with epilepsy. A quasi treatment research (non equivalent control group pretest-posttest design) was used in this study. The subjects were 40 epilepsy patients visiting an outpatient department of a general hospital in Daegu city(treatment group : 20 patients, control group : 20 patients). The study was carried out from June, 19998 to September, 1998. Data was collected before the education program(pretest), immediately after(posttest 1) and 4 weeks later(posttest 2) and were analyzed with repeated measures ANOVA, t-test, Chi-square test and Pearson correlation coefficient. The results are as follows : There was a significant difference in epilepsy self efficacy between two groups(F=26.27, p=.000). There was a significant difference according to pretest, posttest 1 and posttest 2(F=111.20, p=.000), and interaction effect between treatment and time(F=109.42, p=.000). There was a significant difference in epilepsy self management between two groups(F=78.02, p=.000). There was a significant difference according to pretest, posttest 1 and posttest 2 test(F=94.02, p=.000), and interaction effect between treatment and time(F=88.14, p=.000). There was a significant correlation(r=.76, p=.000) between epilepsy self efficacy and epilepsy self management. These results suggest that a epilepsy education program is effective in promoting self efficacy and self management of the patient with epilepsy. Thus this program can be recommended as an effective nursing intervention for the epilepsy patients.
The purpose of this research was to identify the effect of human potential seminars on the perceived stigma of adults with epilepsy. the research employed a quasi experimental design and unequivalent control group pre-post design. The test was conducted on 15 adults with epilepsy attending one psychiatric out-patient clinic in Masan City, Korea. The stigma questionnaire was used as a pre-test to these patients. HPS was done ten times for five weeks from May 6, to July 26, 1996. The stigma questionnaire was again given, but this time as a post test. The control group of 14 adults with epilepsy were receiving medication at the same clinic. The human potential seminars were structured by Mcholland(1972) and translated by Lee, Hae Seung(1990). The stigma research tool was modified and revised to be appropriate to Korean culture. It consisted of 15 sentences. The internal consistency was 0.92 with Crombach's alpha. Research results are as follows. 1) To determine the homogeneity of the experimental and control groups. the pre-stigma results were used and democratic-sociologic characteristics, job characteristics and disease related variables were compare. There was no significant difference between the two groups. 2) To identify the relationship between stigma and patient characteristics a pre-test was done. The study used both Mann-whitney U-test and ANOVA test for statistical analysis. The variables related to stigma were the reason of unemployment and age at onset of epilepsy. 3) The test results of the effect of the human potential seminars on stigma in the patients with epilepsy, showed that stigma in the experimental group was lower than in the control group. the statistical method used to determine the difference between pre and post stigma results was the Wilcoxon signed rank test. The test results were statistically significant at the one percent level. 4) As a follow-up evaluation, ten more patients(66.7% of the total) were additionally tested. In order to investigate f the stigmas were different between the pre, post and follow-up, Repeated measure ANOVA was used. The test results showed that the stigma scores were statistically different between the three groups at the one percent level(F=10.076, d.f.=2, p=0.00).
The purpose of this study was to explore the psychosocial adjustment process in adolescents with epilepsy in the context of Korean society and culture.
A grounded theory method was used for data collection and analysis. Participants for this study were 9 adolescents who regularly visited an epilepsy clinic in a university hospital. The data was collected through in-depth interviews during the period from November, 2002 to June, 2003. Data collection and analysis were performed simultaneously.
Twenty-three categories emerged including ‘ suffering’, ‘ psychological stigma’, and ‘ social isolation from one's peers’. Categories were divided into paradigms which consisted of conditions, actions/ interactions, and consequences. ‘ Reconstructing life’ was the core category in this study. The theoretical scheme was described by organizing categories around the core category.
This study provides a framework for the development of individualized nursing interventions to care for adolescents with epilepsy.
The purpose of this study was to develop a deeper understanding of the experience of mothers caring for children with epilepsy.
Data were collected through individual in-depth interviews and observation from 12 mothers of children with epilepsy. Data were collected from December, 2014 to February, 2015 and analyzed using van Manen's hermeneutic phenomenological methodology to identify essential themes of their experience.
The essential themes that fit into the context of the 4-existential grounds of time, body, other people, and space were: Lived time-ongoing influence of the past, living in insecure present, fearful future with no answer; Lived body-bonded body, burned out state; Lived other-burden but also support, shrunken down; Lived space-narrowed range of activity, widened horizon.
The findings in this study show in-depth understanding of the hardships of mothers who are caring for children with epilepsy. The beauty and greatness of these mothers are revealed through the analysis of various phenomenological materials such as literary and artistic work reflecting socio-cultural context, as well as vivid care experiences of mothers of children with epilepsy. This will be helpful in increasing understanding of the nature of caregivers' experience for medical professionals dealing with patients and caregivers. Also it helps to improve the understanding of the disease among the general public, followed by a more warming and caring attitude towards patients and family members. Finally, it will enhance psychological well-being and overall quality of life of the epileptic children and their families.
This study aimed to identify variables influencing the health-related quality of life (HRQoL) of adults with epilepsy in order to establish a structural model and design an intervention strategy to improve patients’ HRQoL.
The selected subjects were 212 patients with epilepsy aged between 18 and 70 years who were currently receiving treatment from hospital, general hospital, and clinic. They were surveyed using a structured questionnaire.
The goodness of fit measures of the final hypothetical model were as follows: c2/df=2.51, GFI=.91, AGFI=.90, CFI=.96, SRMR=.04, NFI=.93, and RMSEA=.08. The major variables influencing the HRQoL of adults with epilepsy were epilepsy self-efficacy, depression, social support, and side effects of anti-epileptic drugs (AEDs), which were significant in the mentioned order, whereas the duration of AEDs use and perceived stigma did not show any effects. Six variables accounted for 75.6% of HRQoL. Variables having a direct and total effect on the HRQoL of adults with epilepsy were the side effects of AEDs, social support, epilepsy self-efficacy, and depression, and those with an indirect effect were the side effects of AEDs and social support.
It is necessary to accurately identify the side effects of AEDs in adults with epilepsy and accurately observe the physical changes caused by depression. In addition, it is imperative to establish an active and effective nursing intervention program to strengthen the self-efficacy of the patients and to improve their quality of life through social support provided by family members and medical professionals.
This concept analysis was done to clarify ‘uncertainty in epilepsy’.
Walker and Avant's methodology guided the analysis. In addition, the concept was compared with uncertainty in other health problems.
‘Uncertainty in epilepsy’ was defined as being in the condition as seen from the epilepsy experience where cues were difficult to understand because they changed, were in discord with past ones, or they had two or more contradictory values at the same time. Uncertainty in epilepsy is evolved from appraisal of the epilepsy experience. As a result, uncertainty leads epilepsy patients, their family or health care providers to impaired functioning and proactive/passive coping behavior.
Epilepsy patients with uncertainty need to be supported by nursing strategies for proactive, rational coping behavior. This achievement has implications for interventions aimed at changing perception of epilepsy patients, their families or health care providers who must deal with uncertainty.
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.
The purpose of this study was to verify effects of the Empowering A Self-Efficacy (EASE) program on self-efficacy, self-management, and child attitude toward illness in children with epilepsy.
This was a quasi-experimental study with a non-equivalent control group pre-post test design. Participants were 10 to 15 year old children with epilepsy (11 in the experimental group and 10 in the control group) who were registered at one hospital in S city. The experimental group received the EASE program for 3 weeks. In the first week, a group meeting lasting 570 minutes was conducted on a single day. Over the next two weeks, telephone counselling was conducted twice a week. Data were analyzed using SPSS 18.0.
There was a significant difference of pre-post evaluation of the epilepsy self-management scores in the experimental group. However, differences between the experimental group and the control group for seizure self-efficacy and child attitude toward illness were not significant.
This is the first study in Korea to develop and evaluate an intervention program for children with epilepsy. Further studies are needed to confirm the effects of the EASE program.