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題名 | 跨專業醫療團隊走入社區安寧服務--協助罕見疾病個案善終之經驗=The Trans-disciplinary Team on the Move to the Community Hospice: A Case Study of Home Care Patient with Rare Diseases to Obtain Good Death |
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作者 | 梅慧敏; 龍紀萱; 劉秀芬; 羅敏智; 鍾明成; 麥庭瑜; 劉青山; 巫錫霖; 邱重閔; 陳彥中; 鐘純真; 羅羽昇; 王奕山; 何怡儒; Mei, Hui-min; Lung, Chi-hsuan; Liu, Hsiu-fen; Lo, Man-chi; Chung, Ming-cheng; Mai, Ting-yu; Liu, Chin-san; Wu, Shey-lin; Chiu, Chung-min; Chen, Yen-chung; Hong, Chun-jhen; Lo, Yu-sheng; Wang, Yi-shan; Ho, Yi-ju; |
期刊 | 醫務管理期刊 |
出版日期 | 20190900 |
卷期 | 20:3 2019.09[民108.09] |
頁次 | 頁254-266 |
分類號 | 419.77 |
語文 | chi |
關鍵詞 | 罕見疾病-家族性澱粉樣多發性神經病變; 跨專業團隊; 長期照顧2.0; 社區安寧服務; 善終; Familial amyloidotic polyneuropathy; Trans-disciplinary team; Long-term care 2.0; Community hospice; Good death; |
中文摘要 | 目的:本文旨在探討以跨專業團隊提供罕見疾病-家族性澱粉樣多發性神經病變個案,因失能且不便外出就醫之居家照護服務。方法:運用個案報告分享以病歷資料、會談、觀察及實際參與照護方式收集資料,以個案為中心之整合照護服務經驗。結果:此個案初期僅由門診醫療及長照2.0居家護理服務介入,爾後轉介衛生福利部國民健康署「罕見疾病照護服務計畫」之居家照護,從單一居家護理發展到罕病團隊全程的照護,以醫院為基礎跨專業團隊提供罕病照護服務計畫,並導入社區安寧服務模式之決策期、穩定期、瀕死期、悲傷輔導期等不同階段服務,最後個案完成在宅善終之心願。結論:罕病患者屬於弱勢族群,一旦罹病將要面對身體漸進式失去功能,以及家族遺傳性陰影,最終邁向死亡。罕病照護計畫透過個案管理模式建立,以全人觀點進行整體性需求評估、運用夥伴關係為基石發展以醫院為基礎之整合服務,跨專業團隊及早介入,始能提升罕病患者生活品質及最後善終目標。 |
英文摘要 | Objectives: This study aims to investigate the home care service provided by a trans-disciplinary team to a patient with Familial Amyloidotic Polyneuropathy, who has difficulty in mobility due to his disability. Methods: The experience of a combined care integration from multi-disciplinary professionals is shared in terms of a case study. Results: This patient was originally provided with outpatient service and home care nursing intervention by Long-Term Care 2.0. Then he received home care service from "Rare Diseases Caring Project" by the Health Promotion Administration of Taiwan. From single nursing care to a medical team service, a hospital-based trans-disciplinary caring program was implemented for patients with rare disorders. In addition, a community-based hospice model, including decision-making phase, stable phase, pre-dying phase and bereavement phase, was operated to fulfill this patient's will to have a good death at home. Conclusions: Patients with rare diseases are one of the underprivileged groups. They suffer from progressive dysfunction and fear of inheritance, and move toward death. It is expected that a caring plan for patients with rare diseases is based on case management. A more flexible and creative service model can be developed to evaluate patients' needs from a holistic perspective and provide a hospital-centered service based on partnership. Early intervention of a medical trans-disciplinary team is also beneficial to enhance their life quality, and reach a good death. |
本系統之摘要資訊系依該期刊論文摘要之資訊為主。