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Korean Journal of Child Health Nursing 2001;7(4):434-450.
The Lived Experience of Mothers about Rearing of School Children With Cerebral palsy.
Kyoung Seon Baek
Chung-Ang University, Korea.
Abstract
This study is designed to understand the meaning and nature of raising children with cerebral palsy. It researches the experience of mothers of schoolchildren with cerebral palsy by the research method of hermeneutic phenomenology. The study was conducted from November 10, 1999 to December 20, 2000. When children with cerebral palsy usually show symptoms in the early stage of cerebral palsy, mothers do not take children to a doctor for diagnosis. And, most of mothers have a difficult time to accept the reality; they usually respond to the initial diagnosis with shock, reproach, and deny. When mothers start recognizing the reality, they consider that their children have cerebral palsy due to the their mismanagement during pregnancy, delivery, nursing, and initial treatment. They shelter their children from view and feel guilty that they cannot afford to try folk remedies for their children. As time passes, mothers face conflicts between families in diverse ways. Families put the blame on genetic effects. Mothers-in-law give their daughters-in-law a hard time, husbands shift the responsibility of raising children onto their wives, and trouble arises between families-in-law and mothers native families. When children grow up, it is physically difficult for mothers to take care their children. In addition, they suffer from all the troubles in family due to childrens handicap. Mothers try the diverse methods of bringing up children. However, they start getting tired of raising children as they experience failures and financial difficulties. Mothers feel collapsed recalling the ways of raising children. They feel anxiety, miserable, lonely, and worrying when they think how children would attend school, make friends, and live in the future. In this stage, mothers do their best to raise their children with hope. They tend to compare their children with others without handicap and spend money and time in attempting all the treatments. When mothers and children join the society at school, they find that the society does not understand disabled people, teachers show inconsiderate attitude, friends avoid them, and children hardly follow classes. Such experiences make mothers feel angry and frustrated. However, when children adapt to school, mothers see the possibility that children could accomplish schoolwork. They appreciate teachers help and others consideration. Mothers place appropriate expectations on their children and help them to prepare for the future. I would make following suggestions based on the results. 1. As a primary basic course of rehabilitation nursing intervention, solution-centered nursing intervention system should be developed. The intervention needs to be based on the understanding of mothers, who raise children with cerebral palsy, through in-depth interview. 2. Advance researches on the development of individual nursing intervention should be conducted. Individual nursing intervention needs to prevent and release actual pain focusing on mothers raising children with cerebral palsy. 3.Integrated curriculum that help children with cerebral palsy lead a normal school life with ordinary children should be developed. 4.Basic research on using of facilities and effective application of service volunteer to help children with cerebral palsy in school needs to be conducted.
Key words: Cerebral palsy; Schoolchild education; Rearing; Lived experience
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