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Illness Experience of Married Korean Women with Epilepsy
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Young-Min Shon, Woo Joung Joung
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J Korean Acad Nurs 2017;47(3):289-304. Published online January 15, 2017
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DOI: https://doi.org/10.4040/jkan.2017.47.3.289
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Abstract
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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.
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Citations
Citations to this article as recorded by 
- Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy—Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy
Churl‐Su Kwon, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen Epilepsia.2022; 63(3): 573. CrossRef - Structural Equation Modeling on Health-Related Quality of Life in Adults with Epilepsy
Jeong Ok Ko, Myung Ha Lee Journal of Korean Academy of Nursing.2017; 47(5): 624. CrossRef
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Hermeneutic Phenomenological Study on Caring Experience of the Mothers of Children with Epilepsy
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Woo Joung Joung, Myungsun Yi
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J Korean Acad Nurs 2017;47(1):71-85. Published online February 28, 2017
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DOI: https://doi.org/10.4040/jkan.2017.47.1.71
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Abstract
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Purpose
The purpose of this study was to develop a deeper understanding of the experience of mothers caring for children with epilepsy.
Methods
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.
Results
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.
Conclusion
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.
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Citations
Citations to this article as recorded by 
- Development of a parent questionnaire to assess treatment adherence for a child or adolescent with epilepsy
Juna Lee, Ju Young Yoon Epilepsy & Behavior.2023; 140: 109112. CrossRef - A Predictive Model of Resilience in Mothers of Children with Developmental Disabilities
Youyoung Cho, Hyeonok Kim Journal of Korean Academy of Nursing.2022; 52(4): 407. CrossRef
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Decision Making Experience on Breast Reconstruction for Women with Breast Cancer
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Myungsun Yi, Woo Joung Joung, Eun Young Park, Eun Jin Kwon, Haejin Kim, Ji Young Seo
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J Korean Acad Nurs 2016;46(6):894-904. Published online December 30, 2016
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DOI: https://doi.org/10.4040/jkan.2016.46.6.894
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Abstract
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Purpose
The purpose of this study was to explore decision making experiences of Korean women with breast cancer who underwent breast reconstruction with/after a mastectomy.
Methods
Data were collected during 2015-2016 through individual in-depth interviews with 10 women who had both mastectomy and breast reconstruction, and analyzed using phenomenological method to identify essential themes on experiences of making a decision to have breast reconstruction.
Results
Five theme clusters emerged. First, “expected loss of sexuality and discovery of autonomy” illustrates various aims of breast reconstruction. Second, “holding tight to the reputation of doctors amid uncertainty” specifies the importance of a trust relationship with their physician despite a lack of information. Third, “family members to step back in position” describes support or opposition from family members in the decision making process. Fourth, “bewilderment due to the paradox of appearance-oriented views” illustrates paradoxical environment, resulting in confusion and anger. Lastly, “decision to be made quickly with limited time to oneself” describes the crazy whirling process of decision making.
Conclusion
Findings highlight aims, worries, barriers, and facilitators that women with breast cancer experience when making a decision about breast reconstruction. Deciding on breast reconstruction was not only a burden for women in a state of shock with a diagnosis of breast cancer, but also an opportunity to decide to integrate their body, femininity, and self which might be wounded from a mastectomy. These findings will help oncology professionals provide effective educational counselling before the operation to promote higher satisfaction after the operation.
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Citations
Citations to this article as recorded by 
- Influence of body image on quality of life in breast cancer patients undergoing breast reconstruction: Mediating of self‐esteem
Yunhee Jang, Mihyeon Seong, Sohyune Sok Journal of Clinical Nursing.2023; 32(17-18): 6366. CrossRef - Effects of decision aids on breast reconstruction: A systematic review and meta‐analysis of randomised controlled trials
Shu Yang, Lin Yu, Chunmiao Zhang, Mengmeng Xu, Qi Tian, Xuan Cui, Yantong Liu, Shuanghan Yu, Minglu Cao, Wei Zhang Journal of Clinical Nursing.2023; 32(7-8): 1025. CrossRef - “Struggling to Accept the New Breast as Part of My Body” – The Challenge of Immediate Breast Reconstruction in Women With Breast Cancer
Jeehee Han, Juhye Jin, Sanghee Kim, Dong Won Lee, Sue Kim Cancer Nursing.2022; 45(4): 262. CrossRef - Do COVID-19–Related Treatment Changes Influence Fear of Cancer Recurrence, Anxiety, and Depression in Breast Cancer Patients?
Soo Yeon Kim, Sue Kim Cancer Nursing.2022; 45(2): E628. CrossRef - A Decision Tree Model for Breast Reconstruction of Women with Breast Cancer: A Mixed Method Approach
Eun Young Park, Myungsun Yi, Hye Sook Kim, Haejin Kim International Journal of Environmental Research and Public Health.2021; 18(7): 3579. CrossRef - The Lived Experience of Body Alteration and Body Image with Regard to Immediate Breast Reconstruction among Women with Breast Cancer
Jeonghee Ahn, Eunyoung E Suh Journal of Korean Academy of Nursing.2021; 51(2): 245. CrossRef - Factors Influencing Quality of Life Among Breast Cancer Patients Following Immediate Breast Reconstruction
A Young Kim, Jeong Hye Kim Asian Oncology Nursing.2020; 20(1): 1. CrossRef - Korean Translation and Psychometric Evaluation of Korean Version EORTC QLQ-BRECON23
Soo-Kyung Bok, Youngshin Song, Ancho Lim, Hyunsuk Choi, Hyunkyung Shin, Sohyun Jin International Journal of Environmental Research and Public Health.2020; 17(24): 9163. CrossRef - Operation Experiences of Women with Breast Cancer
Hyeon-Young Kim, Sun Hwa Shin Journal of Korean Academy of Fundamentals of Nursing.2020; 27(2): 129. CrossRef - “Waiting for breast reconstruction”: An interpretative phenomenological analysis of heterosexual couples’ experiences of mastectomy for breast cancer
Kristopher Lamore, Cécile Flahault, Léonor Fasse, Aurélie Untas European Journal of Oncology Nursing.2019; 42: 42. CrossRef - Breast reconstruction statistics in Korea from the Big Data Hub of the Health Insurance Review and Assessment Service
Jae-Won Kim, Jun-Ho Lee, Tae-Gon Kim, Yong-Ha Kim, Kyu Jin Chung Archives of Plastic Surgery.2018; 45(05): 441. CrossRef
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