A Process of Establishing a Behavioral Pattern by People Living with Spina Bifida to "Adjust Themselves to the Difference from Others"

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  • 二分脊椎症者の「他者との差異を繕う」行動に至るプロセス
  • ニフン セキツイショウシャ ノ 「 タシャ ト ノ サイ オ ツクロウ 」 コウドウ ニ イタル プロセス

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Abstract

The objective of this qualitative and inductive study was to determine the process how the women living with spina bifida, a congenital ailment with physical disabilities, would acquire and establish their self-management pattern in healthcare behavior in their daily life. Subjects were 15 females with mean age 36.3 years (ranged 26-44 yrs): 5 revealing their spina bifida on web pages by themselves, and 10 introduced by website managers. Data were obtained through conducting individualized and direct face to face interviews of 45 to 151 minutes long with mean length 71 minutes, audio-taping upon consent and recording with verbatim documentation later on. Then they were analyzed using the grounded theory approach. As the result, it was shown that the subjects, due to the "disability characteristics of spina bifida", realized themselves as "different from anybody else" in their daily living, had "a desire to lead an ordinary living", and retained "maintenance of self-esteem" through "adjusting themselves to the difference from others". Therefore, the women living with spina bifida tended to spend long period of time without having sufficient knowledge and understanding of their disease and had to experience unnecessary physical and psychological distresses. Thus, it was suggested that it was necessary to provide them regularly more with individualized explanation according to their developmental stage and to show them the way how to alleviate the difference from others through adjusting themselves.

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