一位漸凍人及其家屬適應病程變化的居家護理經驗

Home Care for Disease Coping of a Family with a Amyotrophic Lateral Sclerosis Patient

本文描述居家護理師協助一位漸凍人及其家屬，在不預期的情況下面對病情急遽惡化的適應過程。個案意識清楚，面臨呼吸、消化、排泄等系統需完全仰賴管路以維持基本生理功能，這些變化造成心理上的重大衝擊，進而對未來產生無望感；家屬因無法接受個案身心遭遇巨變，進而產生否認、害怕與逃避現象。在2004年11月29日至2005年03月31日護理期間，以羅氏適應模式為護理評估指引，確立個案主要護理問題包括：呼吸道清除功能失效、危害性家庭因應能力與無望感。居家護理師從建立信任感開始，了解並尊重個案和家屬的身心感受，陪伴病人和家庭度過病程變化，協助指導個案和家屬有關疾病的照護方式，增強家庭因應疾病的能力，及個案因活動受限喪失對疾病的控制感，滿足疾病為家庭帶來的照護需要，提昇家庭的生活品質，達成個別性、整體性的護理。This case report described how a home care nurse helped an amyotrophic lateral sclerosis patient and his family adapt to a sudden downhill progress of the disease. Although the patient maintained clear consciousness, the patient lost his body functions, such as mobility and communication, and some basic physical needs had to be maintained by tubes. These changes strongly impacted the patient, and sense of hopelessness in the patient and his family. The family was too shocked and afraid to accept the changes in the patient, and the quality of the whole family's life was affected. From November 29 to March 31, 2004, a home care nurse assessed the whole family using the Roy Adaptation Model. Three health related problems were identified: ineffective airway clearance, disabling family coping and hopelessness. Beginning with building trust, the home care nurse enhanced the family's disease cognition and care skills, respected and understood the feelings of family through verbal and non-verbal communication, and finally helped the whole family face the problems caused by the disease and used the care process to improve the quality of life. This home care nursing process provided an individual and holistic care experience.