[Updated on Apr. 18] Integration of CiNii Articles into CiNii Research

Change in Perception of Role among Amyotrophic Lateral Sclerosis (ALS) Patients : From Discontinuity to Continuity

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  • 筋萎縮性側索硬化症(ALS)患者の役割認識の変化 : 非連続性から連続性へのプロセスを通して
  • キン イシュクセイ ソクサク コウカショウ(ALS)カンジャ ノ ヤクワリ ニンシキ ノ ヘンカ : ヒレンゾクセイ カラ レンゾクセイ エ ノ プロセス オ トオシテ

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Abstract

The aims of the present study were to elucidate the change in perception of role among ALS patients and to elucidate the processes of change in perception of role and of destruction and rebuilding of identity. Interviews were conducted with twelve ALS patients in 2010. The analysis was carried out using grounded theory. The keywords of the analysis were discontinuity and continuity. With the progression of the disease, patients experienced negative discontinuity and loss of role, resulting in destruction of identity and a raise in doubt as to whether there was a value in living. Nevertheless, they began to search for 'something they could do' and to search for the self. They had begun to lose sight of, while at the same time starting the search for the value in living. Becoming aware of the continuity of their individuality allowed them to rebuild their identity. Regarding the loss of role, meanwhile, the search for a way of contributing and the search for the value in living led the patients to role continuation and new roles, which promoted the rebuilding of identity. As continuity was taken as the basis in the transition to a new role, the new role could be seen as another aspect of continuity.

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