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Please use this identifier to cite or link to this item: http://ir.jwcpe.ac.jp/dspace/handle/123456789/1091

Title: 人工呼吸器を使用するSMAⅠ型児の在宅での入浴習慣を実現する家族の思い : 当事者研究だからこそ,深まり,広がる
Other Titles: Thoughts of families who succeed in habitually bathing children with type 1 SMA fitted with artificial respirators : Concerned party research deepens and expands understanding
Authors: 雨宮, 由紀枝
Amemiya, Yukie
アメミヤ, ユキエ
Keywords: type 1 spinal muscular atrophy (SMA1)
artificial respirators
bathing care
concerned party research
Issue Date: Mar-2018
Abstract: Providing “bathing care” to children with type 1 spinal muscular atrophy (SMA1) who have a severe disability that requires the use of an artificial respirator inserted by tracheostomy, and with lifelong dysfunction of the neck muscles preventing them from holding up their own neck, is extremely challenging. To date, almost no reports have been published on the actual situation of habitually bathing in the homes of children fitted with artificial respirators. In light of this paucity of information, a concerned caregiver of a child with SMA1 took it upon herself to research and publish findings of a survey she conducted as a type of “concerned party research”. We examined the open-ended answers to questions in this survey, and in this paper shed light on the specific facts of habitually bathing and the thoughts of families who successfully overcome the challenge of bathing children with SMA1 every day.  Of the 44 people surveyed, more than 90% (40 people) bathed their child with SMA1 at least three times a week at home and half (22 people) managed to bathe their child every day. Bathing of children with SMA1 is extremely individualized and becomes increasingly difficult as the child grows. However, families and the people around them have been bathing their children using their own creative solutions. Families may struggle with bathing care, but feel joy from watching their child enjoy bathing and perceive the diverse merits of bathing that go beyond simple cleaning of the body. Families' strong desire to “allow their child to take a bath every day as normal” was found to be the motivation behind successfully achieving difficult daily bathing. It is crucial that information on the creative solutions accumulated by each family is shared, that cooperation between families and professionals is established. Furthermore, “concerned party research” conducted mainly by the parties should also become a future trend in enhancing the quality of research.
URI: http://ir.jwcpe.ac.jp/dspace/handle/123456789/1091
ISSN: 02850095
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