• 대한간호학회지
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• 제28권1호
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• pp.7-16
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• 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.

• 대한간호학회지
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• 제29권3호
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• pp.494-506
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• 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
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• 제10권1호
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• pp.100-112
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• 1999

이 연구는 정신지체와 자폐장애 아동의 장기적인 치료와 그 가족의 삶의 질을 향상시키는, 보다 효과적인 개입방향을 모색하고자, 1998년 9월부터 1999년 1월까지 인천광역시에 위치한 가천의대 길병원 소아정신과에 내원하여 DSM-IV에 의거한 자폐 장애 또는 정신지체 진단 기준을 만족시키며 KEDI-WISC full-scale score에 의해 장애진단서를 발급받은 만5세에서 12세 아동 41명과 그들의 어머니를 대상으로 하여, 어머니의 삶의 질과 정서적 우울에 영향을 주는 장애아동의 행동 특성과 가족환경 특성을 조사하였다. 정상대조군은 연령과 성별, 그리고 사회경제상태를 고려한 37명을 선정하였다. 어머니의 삶의 질과 정서적 우울은 한국판 스미스클라인 비챰 삶의 질 척도(K-SBQOL)와 K-BDI에 의해, 아동의 행동 특성은 KCBCL, 그리고 가정환경특성은 한국판 가정환경척도(K-FES)에 의해 각각 측정하였다. 그 결과, 어머니의 삶의 질 척도(K-SBQOL) 총점은 장애아동군이 $127.51{\pm}42.90$, 정상대조군이 $167.20{\pm}31.07$으로 통계적으로 유의한 차이를 보였다(p＝.000). 어머니의 K-BDI 점수는 장애아동군이 $15.29{\pm}10.67$, 정상대조군이 $8.71{\pm}6.91$로 유의한 차이가 있었다(p＝.003). 가정환경척도에서는 장애아동군이 정상대조군에 비하여 자립성, 지적/문화적 지향성, 그리고 능동적-여가 활동이 통계적으로 유의하게 낮았다(p<.05). 장애아동 어머니의 삶의 질은 아동의 주의집중력 문제와 가장 높은 관련성이 있었고, 가정환경척도의 응집력 소척도와 K-CBCL의 사회성 소척도가 유의한 관련성을 보였다. 장애아동 어머니의 우울은 아동의 내향화 증상과 사고장애, 그리고 가족환경척도의 응집력 소척도와 유의한 관련성을 보였다. 이상의 결과들은 장애아동의 진료에서, 아동의 주의집중력 장애와 정서적 불안정에 대한 지속적인 치료와 가정에 대한 조정이 장기적으로 부모의 삶의 질과 장애아동의 예후에 중요하다는 것을 시사한다.

• Journal of Genetic Medicine
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• 제2권2호
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• pp.83-86
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• 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.