人工呼吸器をつけた重症心身障害児との関係性の獲得過程 : 保育者との関わりを通した発達的変容

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Werdnig-Hoffmann disease is a progressive muscular atrophy dystrophy, which weakens muscle functions throughout the body. This disease is characterized by difficulties in feeding, mastication, deglutition, respiration, maintaining sitting position, standing, walking, etc. Consequently, patients with this disease are required to constantly receive total medical assistance for daily life and management for artificial ventilation, using such treatments as tube feeding, artificial respiration and suction. Artificial ventilation management leads to loss of voice and muscular atrophy, causing the patient to lose most of her means of linguistic and nonlinguistic communication. In addition, during the stay in the hospital with prioritized medical care, nursing and educational care are not sufficiently provided. In order to solve these problems, it is important to promptly devise means for communication recovery and provide proper interaction for child patients, along with maintenance of safe, assisted therapeutic environments. This research examines the validity of higher-order relationships formed between the nursery care worker and severely-retarded child with Werdnig-Hoffmann disease, by identifying developmental modification of such relationships and interaction, using practical engagement observation methods. The following three experimental purposes are proposed for nursery care worker to encourage communication with child patients : (1) establishment of shared space with the child by involvement in her world for relationship building, (2) development of such space into a play space by understanding the child's interests to promote the expression of spontaneity, (3) expansion of the common play space through physical interaction. As shown in the engagement stated above, the child patient showed the ability to clearly express her limited motor functions in response to linguistic stimulus by others. As a result, it is possible to confirm whether she understands other linguistic stimulus from her expressed intentions. Also, it can be said that the resulting formed relationships are effective for the child to obtain knowledge of an object and methods for expression. It is expected that if a child patient can learn to communicate using a computer, she will be able to interact with others. This research suggests the possibility of appealing to a child's various intentions concerning how to get involved with others in the future.

著者

金森三枝
東洋英和女学院大学発達心理学

人工呼吸器をつけた重症心身障害児との関係性の獲得過程 : 保育者との関わりを通した発達的変容

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