Subjective QOL changes and associated factors in experiences of mothers nursing children (adults) with severe motor and intellectual disabilities at home.

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  • 在宅重症心身障害児（者）の母親の養育経験における主観的QOLの変化と関連要因
  • ザイタク ジュウショウ シンシン ショウガイジ(モノ)ノ ハハオヤ ノ ヨウイク ケイケン ニ オケル シュカンテキ QOL ノ ヘンカ ト カンレン ヨウイン

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The objective of this study was to reveal factors affecting subjective QOL in mothers of children (adults) with severe motor and intellectual disabilities (SMID) from both positive and negative aspects according to the life stage of their children as well as to obtain suggestions on how to support these mothers. The subjects included 6 mothers who had been living with children (adults) with SMID after adolescence. We conducted semi-structured interviews using the life-line interview method. The subjective QOL of mothers tend to be the lowest after being notified of their children's disabilities or receiving diagnose of their diseases. Thereafter, their QOL repeatedly went up and down; some mothers attempted to move forward by positively accepting the past events while others went into depression. The factors which improved their subjective QOL included realization of development of their children, social connections, regaining their social roles, and supports from families. While factors which lowered their subjective QOL included worsening of their children's health status, making a decision on a treatment for the secondary disability, the burden of "double care" of both parents and children, and decreased caring ability of the mothers themselves. These factors revealed perspectives on approaches to help mothers recovering from difficult situations at each life-stage of their children.

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