PURPOSE
This study was done to explore the meaning of joys and sorrows in mothers of children with Mucopolysaccharidosis (MPS).
METHODS
The participants were 9 mothers who each had a child with MPS. Data were gathered using in-depth interviews. The interviews were recorded and transcribed verbatim. Data were analyzed using Colaizzi method.
RESULTS
The significant results from analyzing the interviews can be grouped into 12 concept descriptions, and 5 theme clusters. The essential theme clusters for the experience of the mothers were 'hopelessness about this rare disease', 'guilt because of the disease being hereditary', 'endless courses of treatment', 'wounds in the relationship', and 'relative composure of mind'.
CONCLUSION
The finding of this study offer profound information on joys and sorrows experienced by mothers of children with MPS and provide basic data for developing nursing intervention strategies for the mothers of children with rare diseases.

Citations

• Experiences of Parenting Children With Spinal Muscular Atrophy
  Hyo Jin Kim, Sun-Mi Chae
  Journal of The Korean Society of Maternal and Chil.2022; 26(3): 194.     CrossRef
• Life Experiences of Mothers in Parenting Children with Hunter's Syndrome
  Sung Ye Kang
  Journal of Korean Academy of Nursing.2012; 42(5): 609.     CrossRef

The object of this study is to provide the basic data for the caring of parents by understanding emotional status, physical status, and family support of parents with cardiac disease children. The subjects of this study were consisted of 105 parents of cardiac disease children admitted at 'G' hospital in Inchon, and 'S' hospital in Puchon. The data were collected from November 6 to December 21, 2000. Four instruments were used to collect the data : Spielberger's STIS, Cornell Medical Index(CMI), Yang's stress scale, and Moos's Family Environment Scale Form R, the latter 3 are modified by researcher. The collected data were tested using frequencies, percentiles, means, t-test, ANOVA, and Pearson correlation coefficient with SPSSWIN program. The results of this study were as follows: 1. There were statistically significant differences in degree of anxiety on age, number of children, and children's order of birth. 2. There was a statistically significant difference in degree of physical status on presence of the other patient in family. 3.There were not statistically significant differences in degree of stress and family support on demographic factors. 4.There were positive correlations between physical status and family support, and between anxiety and stress, but negative correlations between family support and stress, between anxiety and family support, between anxiety and physical status, and between stress and physical status.