照顧一位診斷法布瑞氏症合併中風個案之門診護理經驗

The Outpatient Care Experience of a Patient Diagnosed with Fabry's Disease Complicated by Stroke

高雅珍(Ya-Jhen Gao)

法布洛氏症 ； 罕見疾病 ； 健康識能 ； 自立支援 ； Fabry's disease ； rare diseases ； health literacy ； self-supporting care

志為護理-慈濟護理雜誌

23卷4期（2024 / 08 / 01）

112 - 120

繁體中文;英文

本文為照顧一位診斷法布瑞氏症合併中風之門診護理經驗，護理期間自2022年07月01日至07月29日。運用Gordon功能性健康型態工具及病歷查閱等方式收集資料，此個案因疾病失能導致生活無法自理，主要家庭照顧者對罕見疾病認知不足及缺乏居家照護健康識能，加重照顧負荷壓力，確立有：「身體活動功能障礙」、「照顧者角色緊張」、「照顧者壓力過度負荷」等健康問題。護理措施運用自立支援照護概念，維持及提升個案自立支援和家庭復原力。建議藉此門診經驗能更加重視罕見疾病家庭疾病認知和心理負荷照護需求。冀望落實心理支持及政策資源介入的有效運用，護理過程能更邁進以病人、家庭、社區為中心的護理價值。

The outpatient nursing experience of a patient who was diagnosed with Fabry's disease and a stroke was detailed in this study. The nursing period was from 1 July to 29 July 2022. The data was gathered via the application of Gordon's Functional Health Patterns assessment and a comprehensive review of medical records. The patient's primary family caregivers were uninformed regarding the rare disease, which hindered their ability to carry out activities of daily living. This further compounded the caregiving burden. Identified medical problems included "Impaired Physical Mobility," "Caregiver Role Strain" related to lack of information about swallowing difficulties and diet, and "Excessive Caregiver Burden." Intervention included utilizing the principle of self-supporting care and improving the family's and patient's capacity for independent living. This outpatient experience suggests prioritizing the identification of rare diseases within families and attending to the associated caregiving requirements. The expectation is that by employing policy resources and psychological support measures to implement effective interventions, nursing processes will progress toward adopting a care approach centered on the patient, family, and community.