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Life Experiences of Mothers in Parenting Children with Hunter's Syndrome
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Sung Ye Kang
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J Korean Acad Nurs 2012;42(5):609-621. Published online October 31, 2012
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DOI: https://doi.org/10.4040/jkan.2012.42.5.609
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 Abstract
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Purpose
The purpose of this study was to explore the experiences of Korean mothers in parenting children with Hunter's syndrome, an X linked recessive genetically inherited disease usually affecting boys.
Methods
Data were collected from 14 mothers having children with Hunter's syndrome, through two focus group interviews and individual in-depth interviews. Qualitative data from the field notes and transcribed notes were analyzed using the grounded theory methodology developed by Strauss & Corbin (1998).
Results
The core category about the process of rearing children with Hunter's syndrome was identified as "navigating in the maze". The process of rearing children with Hunter's syndrome passed through three phases; 'entering an unknown region', 'struggling to escape from the unknown region', 'settling down in the unknown region'.
Conclusion
In this study "navigating in the maze", as the core category deeply showed joys and sorrows of mothers in the process of rearing their children with Hunter's syndrome. In this rearing process they gradually adjusted themselves to their given condition. Also they gained initiatively coping strategies to care for, and protect their children. Therefore health care providers can establish supportive programs in the clinical field to empower these mothers by reflecting their proactive coping strategies.
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Citations
Citations to this article as recorded by  - Optimizing Engagement: Factors Influencing Family Participation in a Positive Parenting Program among Vulnerable Households with Young Children
Hector Cebolla, Juan Carlos Martín, María José Rodrigo
Psychosocial Intervention.2025; 34(1): 53. CrossRef - The Experiences and Challenges of Mothers of Adult Patients with Mucopolysaccharidosis; Mothers of Adults with Severe Mucopolysaccharidosis
Yukiko SAKAGUCHI, Kyoko KUBO
Asian Journal of Human Services.2023; 25: 67. CrossRef - A systematic review and integrative sequential explanatory narrative synthesis: The psychosocial impact of parenting a child with a lysosomal storage disorder
Sadie Hassall, Debbie Michelle Smith, Stewart Rust, Anja Wittkowski
Journal of Inherited Metabolic Disease.2022; 45(3): 406. CrossRef - Experiences of Parenting Children With Spinal Muscular Atrophy
Hyo Jin Kim, Sun-Mi Chae
Journal of The Korean Society of Maternal and Child Health.2022; 26(3): 194. CrossRef - Hermeneutic Phenomenological Study on Caring Experience of the Mothers of Children with Epilepsy
Woo Joung Joung, Myungsun Yi
Journal of Korean Academy of Nursing.2017; 47(1): 71. CrossRef
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The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis
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Sung Ye Kang
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J Korean Acad Nurs 2008;38(6):802-812. Published online December 31, 2008
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DOI: https://doi.org/10.4040/jkan.2008.38.6.802
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Abstract
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Purpose
The purpose of this study was to identify and describe phenomenological structures of the lived experience of struggling against an illness for patients with Amyotrophic Lateral Sclerosis (ALS).
Methods
The participants were 7 patients with ALS recruited by snowball sampling who agreed to participate in this research and could verbally communicated with the researcher. Data were collected by long term-repeated interviews with participants in their own homes. Data were analyzed using Colaizzi's method of phenomenology.
Results
Four categories were extracted as follows: 'Being seized with fear of death', 'Living a marginal life', 'Accepting hard fate', and 'Clinging to faint life'. Seven theme clusters were identified as: 'Wandering to find a healing method with ominous signs in the body', 'Having a diagnosis of ALS is like a bolt from the blue and struggling against illness with faint hope', 'Being forced out to the edge of life with anguish', 'Filling one's heart with hatred and longing toward becoming estranged from the world', 'Living with stigma as a stumbling block with bitter grief in one's heart', 'Accepting every things as one's fate with self controlled fear of death', and 'Attaching to desire to live'.
Conclusion
The results of this study can be used to develop the programs to support patients with ALS and their family.
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Citations
Citations to this article as recorded by - The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions
Yamile Molina, Seung W. Choi, David Cella, Deepa Rao
International Journal of Behavioral Medicine.2013; 20(3): 450. CrossRef - Joys and Sorrows in Mothers of Children with Mucopolysaccharidosis
Hye-Sook Park, Kwuy-Bun Kim
Journal of Korean Academy of Child Health Nursing.2011; 17(1): 58. CrossRef
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Experience of Patients Living with Chronic Renal Failure
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Sung Ye Kang, Byung Sook Lee
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Journal of Korean Academy of Nursing 2001;31(4):525-537. Published online March 29, 2017
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DOI: https://doi.org/10.4040/jkan.2001.31.4.525
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Abstract
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The Purpose of the study was to understand the experience of chronic renal failure
patients for the qualified individual care for them. The purpose of this study was to
explore the experience of patients living with chronic renal failure and to identify the
meaning and structure of their experience.
The subjects were four patients, two females and two males. The age range was from
21 to 54. Data was collected with a few in-depth interviews by the authors until the
data was fully saturated. The framework and methodology of this study was based on
Parse's "Human Becoming methodology," an existential phenomenological research
method
ology.
The findings of this study were as follows. Three experience structures of chronic renal
failure patients were :
1. Sufferings and conflicts originated in the frustration caused by uncurable disease.
2. Dependence upon God and significant others with complex emotions.
3. Acceptance of sufferings, emerging hope for serving people, and gratitude for living.
In conclusion the experience of chronic renal failure patients could be described from the
findings (three structures) as "Experiencing the sufferings, conflicts originated in the
frustration caused by uncurable disease, dependence upon God and significant others
with complex emotion, acceptance of the suffering and hope for serving people, and
gratitude for living." The three structures of the lived experience of patients with
chronic renal failure, the findings of this study, could be explained by the three concepts
of "Theory of Human Becoming," the first structure could be explained with values, the
second with revealing-concealing, and the third with transforming.
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