重症心身障がい児の母親と社会との接点—在宅での乳幼児期の子育て体験の分析から

The Experiences of Mothers Who Raise Severely Disabled Children at Home and Their Ties with The Outside World

要旨

　目的：乳幼児期の重症心身障がい児（重症児）を育てる母親がどのように社会との接点を持つのか，そのきっかけやパターンを母親の体験から明らかにする．

　方法：6〜8歳の重症児の母親9名に出生から幼児期までの育児における母親の心理，地域社会との関係等について半構造的面接を実施し，質的記述的分析を行った．

　結果：21カテゴリー，5［大カテゴリー］が抽出された．母親は［重度な障がいの子どもと向きあう］体験を基盤に，［遠い他者に感じる冷ややかな世間］の影響を受けると［思い込みに囚われて行き場がない子育て］を体験し，［顔が見える他者からのエネルギー］によるプラスの影響があると［他者との関わりへと広がっていく自分の世界］という体験をしていた．

　結論：乳幼児期の重症児の母親は，子どもの不安定な体調や，他者を冷たく感じる体験から社会との接点をもてない状況となる．社会との接点は，家族や友人のような顔の見える他者からもたらされるパターンと，自ら身近な他者の理解を求めるパターンを認め，母親同士のつながりが重要な役割を担っていた．

　Purpose: The purpose of this study is to analyze the experiences of mothers who raise severely disabled children at home and also to discover their ties with the outside world. Particularly, we clarify a chance and pattern of the connection to the community of the mothers.

　Method: Semi-structured interviews were conducted with nine mothers of severely disabled children aged between six and eight years old. The data was qualitatively analyzed.

　Results: The results are divided into twenty-one categories and five main categories.

　The main categories are as follows:

　[A] Mothers faced the reality of raising a child with a severe disability

　[B] A frosty attitude from strangers led to [C]

　[C] The mothers became blind to the possibility that they can raise their children properly

　[D] They gained energy from positive experiences with others resulting in [E]

　[E] The mothers got out and widened their horizons

　Conclusion: We found several ways that mothers of disabled children connect to the community. The main way mothers did this was by their own efforts, and not just brought about by those close to them. Also, when the mothers faced difficulties in child-raising, they tried to gain sympathy from friends and acquaintances. In order for mothers of disabled children to widen their horizons, relationships with other mothers played a very important role.