Experiences of Individuals Living with Neuromuscular Illness in Long Course: Palliative Care for Their Psychological Distress

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  • 神経難病とともに生きる長期療養者の病体験: 苦悩に対する緩和的ケア
  • シンケイ ナンビョウ ト トモニ イキル チョウキ リョウヨウシャ ノ ビョウ タイケン クノウ ニ タイスル カンワテキ ケア

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Progress in medical technology and treatment has led to individuals with progressive neuromuscular illnesses surviving for longer periods of time. These patients may experience various distresses. In order to facilitate palliative care for them, the purpose of this study was to identify the experiences of in-home care patients living with progressive neuromuscular illnesses during long course. Data were obtained from semi-structured interviews with nine sets of patients and their families. A qualitative induction analysis was applied to extract domains and categories of their illness experiences.<BR>Six domains with twelve categories of psychological distress of the patients were identified. The domain«somatic symptoms and difficulties in their daily lives»seemed to lead to the other categories of psychological distresses. The following ten categories were extracted as reflecting the mental support of the patients: [symptoms management], [gratefulness toward being able to perform some physical functions], [renewed spirits in facing up to their illness], [achieving their roles within their families], [hope], [sense of relief derived from medical services], [gratitude for the thoughtfulness of their families], [gratitude for the consideration of others], [religious beliefs] and [unconquerable personality]. It became evident that the psychological state of the patients fluctuates between the weight of distress and the mental support that they feel. This study suggests that nurses should precede direct approaches towards resolving somatic symptoms and difficulties in their daily lives. Then we should work together with patients and their family to find mental support, and to transform psychological distress into mental support as means of palliative care.

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