照護一位亨汀頓氏症病人之護理經驗

A Nursing Experience of a Patient with Hungtington's Disease

本篇旨在描述一位76 歲亨汀頓氏症個案，因突然發病致身體外觀改變及身體功能改變照護經驗。護理期間為2013 年8 月20 日至9 月15 日，筆者運用Gordon十一項健康功能型態為評估架構，經由直接照顧、觀察、會談等技巧收集資料，發現個案有：（一）潛在危險性肺吸入；（二）身體活動功能障礙；（三）身體心像紊亂等健康問題。藉由教導正確灌食技能，訓練個案吞嚥能力，避免危險性肺吸入發生；與個案共同討論復建計畫與日常生活訓練，提升身體活動功能以增進自我照顧能力；運用跨團隊及病友、家庭等支持系統，配合懷舊治療，增加個案自我價值感，給予正向鼓勵與心理支持以協助個案與疾病共存，面對疾病造成的身體心像紊亂，建議定期辦理罕見疾病照護課程，以提升醫療團隊罕見疾病照護能力，提供病友即時性的資訊及服務。

The purpose of this article was to discuss the caring experience of a 76-year-old subject who suffered from Hengting's chorea leads to the onset of change in physical appearance and body function changes. The period of nursing care was from August 20th, 2013 to September 15th, 2013. Clinical observation, interview and direct care were used guided by Gordon's 11-item health assessment to identify nursing problems. The major nursing problems were potentially risk of pulmonary inhalation, Physical activity dysfunction, Body image disturbed. Teach proper skills-feeding, training of swallowing to avoid the risk of pulmonary aspiration, discuss to the rehabilitation plan and daily life training, improve physical activity dysfunction and enhance self-care ability. By cross-team and sufferers, family support system, and nostalgic treatment, increased sense of self-worth, give positive encouragement and psychological support to assist with disease cases coexist in the face of disease caused by changes in body image. We recommended regular handling rare disease care programs to enhance the ability of the medical team caring for rare diseases, providing patients instant information and services.