• Journal of Korean Academy of Nursing
• /
• v.28 no.1
• /
• pp.7-16
• /
• 1998

Various difficulties and inconveniences arise from having a mentally handicapped child in a family and these place many demands on mothers. There are few studies in Korea on these demands nor on what mothers go through with their mentally handicapped daughters' menarche and puberty. The purpose of the study was to examine the experiences of mothers of mentally handicapped daughters, as it relates to their daughters' menarche and the beginning of puberty. With indepth interviews, both in person and by telephone and participant observation the study used a qualitative research methodology to attempt to understand the experiences of these mothers. The data were gathered from October 1995 to April 1996. The subjects for the research included nine mothers of mentally handicapped daughters whose ages ranged from 12 to 18 and who attended one of three special schools located in either Inchon or Seoul. The data were recorded and analyzed : meaningful statements were grouped according to subjects raised by the mothers. Content Analysis was also applied to identify similar content and confirm common experiences. and to highlight concepts and categorized them. The results of this study are as follows. Five categories were identified : mothers' emotional responses to their mentally handicapped daughters' menarche and menstration were of severe despair accompanied by anxiety, guilt, fear, anguish, shame and pity because the mothers were afraid their daughters would not be able to use appropriate hygienic measures during menstration and the mothers felt heavily burdened in having to look them. The mothers also had negative feelings about their daughters' physical development. The experience of mothers related to their daughters' possibilities for marriage and pregnancy were of powerlessness, distress, withdrawal, fear. pity and desperation and they were afraid that their daughters might be violated sexually. The mothers rejected the possibility of marriage and pregnancy for their daughters and instead planned very restricting futures for them. The mothers used various coping methods to bring meaning to their lives. Because the negative emotional responses of the mothers. nurses need to work to empower mothers to overcome these negative responses. Sex education can also play an important role especially for the daughters especially through the use of visual aids. Further, nurses should understand the tearing difficulties of mentally handicapped daughters, what mothers need and also what they experience with their mentally handicapped daughters. In conclusion, nurses should understand the negative experiences of the mothers in relation to their mentally handicapped daughters' menarche, help the mothers cope with the negative. emotions through real life education and counselling. In addition, there is a need for nursing interventions and an administrative system which will minimize the prejudices of society towards handicapped people.

• Journal of Korean Academy of Nursing
• /
• v.29 no.3
• /
• pp.494-506
• /
• 1999

The purpose of this study is to understand the structure of mothers of mentally handicapped daughters' lived experience, to apprehend the connectedness of the structure of the experience with concept of Parse's human becoming theory, and to provide a foundation for nursing research and education. Data collection was conducted from October 1995 to April 1996. Research participants were eight mothers of mentally handicapped daughters whose ages ranged from 12 to 18 attending special schools located in either Inchon or Seoul. The researcher had interviews with them over their lived experience conducted tape recorded, and made an analysis according to Parse's “human becoming research methodoloy.” The data were collected using the dialogical engagement process “I and You,” the participant researcher and the participant subject. The data were analyzed using the extraction-synthesis and heuristic interpretation. The structural integration is illustrated in the following : 1) Realizing the mother's role of mentally handicapped daughters and admitting situation. 2) Concealing a part of their relationship with others is interpreted as revealing-concealing. 3) Living a life kept moving between separating and connecting. 4) Their flight back voluntarily to improve the situation is interpreted as powering. The conceptual integration which emerged was the lived experience of mothers is powering through the revealing-concealing and connecting-separating of valuing.

• Journal of the Korean Academy of Child and Adolescent Psychiatry
• /
• v.10 no.1
• /
• pp.100-112
• /
• 1999

Objective：In life-long disabilities like autism and mental retardation, the authors thought that it is important for clinician to consider the quality of life of a primary caregiver for long-term management and prognosis. This study was to investigate the factors of children and family environment affecting the quality of life and depression in mothers with autistic and/or mentally retarded children. Methods：41 autistic and/or mentally retarded children aged 5-12 years with their mothers were surveyed from September, 1998 to January, 1999, with K-CBCL, K-BDI, K-FES, and K-SBQOL scale and compared with data from 35 normal control subjects. Results：1) Total K-BDI and K-SBQOL scores of mothers with mentally handicapped children were significantly poorer than the scores of normal control group. Independence, intellectual/cultural orientation and active recreation subscales of K-FES in mentally handicapped children were significantly decreased than those in normal control group. 2) Total K-BDI score of mothers with mentally handicapped children was correlated with their children’s behavioral problems, especially internalizing and thought symptoms, and with family cohesion, expressiveness, conflict and independence. 3) Totol K-SB quality of life score of mothers with mentally handicapped children was correlated with their children’s behavioral problems, especially attention problem, and with family cohesion, conflict, independence, intellectual/cultural orientation, and moral-religional emphasis. 4) The quality of life of mothers with mentally handicapped children was predicted by attention problem($R^2$=.36, p=.000) and social competence($R^2$=.07, p=.038) in children and family cohesion ($R^2$=.16, p=.001). 5) Depression of mothers with mentally handicapped children was predicted by internalizing symptom ($R^2$=.21, p=.003) and thought disorder($R^2$=.06, p=.048) in children and family cohesion($R^2$=.14, p=.008). Conclusion：Reducing behavioral problems and family therapeutic intervention in autistic and mentally retarded children can improve the quality of life of primary caregivers and long-term prognosis of the children, although those are not curative.

• Journal of Genetic Medicine
• /
• v.2 no.2
• /
• pp.83-86
• /
• 1998

Though Fragile X syndrome is one of the most common inherited causes of mental retardation, it is not much detected yet in Korean population. One of the reason may be that the syndrome is not well known to the special education teachers as well as to the clinicians in this country. Thus, molecular test was undertaken to screen out fragile X syndrome in 122 children of two Korean schools for emotionally severely handicapped children. The subjects were all boys, previously known as having pervasive developmental disorder with or without mental retardation. Southern blot analysis of peripheral blood showed the abnormally enlarged (CGG)n repeat sequence associated with fragile X syndrome in two children. This finding suggests that the DNA testing for fragile X syndrome is warranted for Korean high risk population and that more concern about this syndrome is needed for the professionals who work for mentally handicapped children. The issues involved in genetic counseling for fragile X syndrome are discussed.