障害をもつ乳幼児の家族の日常生活における体験に関する研究 : 家族のノーマリゼーションを視点としたmeta-study  [in Japanese] CONDITIONS OF NORMALIZATION FOR FAMILIES OF CHILDREN WITH DISABILITIES  [in Japanese]

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Abstract

本研究の目的は,障害をもつ乳幼児の家族の日常生活における体験を家族のノーマリゼーションの視点から体系的に表現することである。千葉大学看護学部小児看護学教育研究分野から最近5年間に発表され,障害を持つ乳幼児の家族の体験について詳細な記述がされている修士論文と,乳幼児期の障害児をもつ家族を研究対象とした原著論文を分析対象とし,Patersonのmeta-studyの手法を参考に分析を行った結果,次の内容を得た。1)障害をもつ乳幼児の家族のノーマリゼーションの過程は,児の身体状態の管理の困難さにより,3つのパターンに分類された。2)児の身体状態の管理が困難な家族では,家族は児の身体管理を中心に生活しており,生活リズムが整えられにくく,家族のノーマリゼーションは低い状況にあると考えられた。また,母親がひとりで育児の責任を負い,負担の大きい状況であった。児の身体状態の改善や家族の対処方法の習得から,家族が児の身体状態の管理に自信をもてるようになると,児の世話を家族の日常生活に組み込みやすくなり,家族の生活リズムが整えられやすくなっていた。3)児の身体状態が安定しており,児の睡眠パターンが安定している家族では,早期から家族の生活リズムが整えられやすく,家族のノーマリゼーションは比較的高い状況にあると考えられた。しかし,これらの家族でも,家族内のサポートや社会資源の利用は少なく,母親の負担は大きいと考えられた。4)医療的に新たなケアを導入する必要があった家族では,ケアの導入による一時的な混乱のため,家族のノーマリゼーション状況は著しい落ち込みが見られた。その後,ケア導入による児,家族の利益が知覚されると,家族のノーマリゼーショ

The purpose of this study was to systematize experiences of daily life in families of children with disabilities, in terms of family normalization. The results of selected theses and research published in the past 5 years were reanalyzed using meta-data-analysis, according to the methods described by Paterson. Permissions from authors regarding secondary analyses of theses were obtained in advance. Phrases representing family normalization were extracted from statements relevant to the daily life of families. All phrases were contrasted and compared, noting similarities and differences, and placed in a figure constructed using two axes: a horizontal axis indicating growth and development of the child and the accumulation of caring experiences by the family; and a vertical axis indicating the condition of family normalization. The following results were obtained: 1) Three trajectories were identified to explain changes in family normalization according to difficulties in physical management of children. 2) Families with children in whom physical conditions were unstable and easily deteriorated regarded physical management of the child as the focus of daily life. These families tended to experience difficulty in regulating daily life, and condition of family normalization thus seemed low. In addition, mothers took full responsibility upon themselves for providing care for the child and undertook severe burdens in these families. As condition of the child improved and family members acquired confidence in skills, families integrated care into daily routines and regulated daily life appropriately. 3) Families with children in whom physical condition was stable were able to regulate daily life from an early stage and condition of family normalization seemed relatively high. 4) Families that needed to introduce new medical care for children experienced temporary confusion that conspicuously lowered family normalization. After recognizing the benefits of the introduced care, condition of family normalization recovered p

Journal

  • 千葉看護学会会誌

    千葉看護学会会誌 11(1), 71-78, 2005-06-30

    千葉看護学会

Codes

  • NII Article ID (NAID)
    120005919533
  • Text Lang
    JPN
  • Article Type
    journal article
  • ISSN
    1344-8846
  • Data Source
    IR 
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