重症心身障害がある子どもの食の変化を通しての親の思い

Exploring Parents' Feelings through Changes in Feeding of Children with Severe Motor and Intellectual Disabilities

要旨

　目的：重症心身障害がある子どもの食の変化を通しての親の思いを明らかにする。

　方法：重症心身障害があり食が変化した18歳未満の子どもの親21人を対象に、半構成式面接を行い、データは質的に分析した。

　結果：親の思いは、【今できることを守り保ちたい】【あるべき親でいなくては】【食事のことがうまくいかずどうすればいいのか】【食の変化に親としてどうなのか揺れる】【子どもが楽に食事が摂れるようにしよう】【子どもなりの食のあり方を大切にしたい】【私なりのやり方でいい】【食の変化を経て家族と穏やかに過ごす幸せを感じる】【食の変化で子どもを受け入れてもらえないのは辛い】【食事のことで助けを得るのは難しい】から成っていた。

　結論：食の変化を経て、親は食やその変化に対する思いを抱いていた。親子の食のあり方を捉え直し、また、親としての思いも変化していた。親の、食やその変化に対する思いに着目した支援の必要性が示唆された。

　Purpose: To explore parents' feelings through changes in feeding of children with severe motor and intellectual disabilities.

　Methods: Semi-structured interviews were conducted with 21 parents of children younger than 18 years, who had severe motor and intellectual disabilities, and whose feeding method had changed. The data were analyzed qualitatively.

　Results: Parents' feelings formed the categories of {Wanting to keep and maintain what my child has now}, {Not knowing what I should do when feeding is not going well}, {Having to be an ideal parent}, {Being uncertain about how I am as a parent regarding a change in feeding}, {Wanting to make it easier for my child to eat/feed}, {Willing to respect my child as he/she is regarding feeding}, {Being content with doing in my own way}, {Feeling happy when we spend a peaceful time as a family through changes in feeding}, {Feeling hurt that my child is not accepted due to changes in feeding}, and {Experiencing difficulty in receiving help about feeding}.

　Conclusion: Through changes in feeding, parents experienced feelings about feeding and its changes. They reperceived how feeding should be for parents and their children, and their feelings as a parent changed. These findings suggested that nurses must focus on parents' feelings about feeding and its changes.