先天性心臟病青少年的健康需求與家庭照護

先天性心臟病為最常見的先天性畸形，有鑑於醫療技術的進步使得全球先天性心臟病存活率大幅提升，在新生兒、嬰兒和兒童可治療的條件下，高逾九成的先天性心臟病患者可存活至成年，期間仍需長期的追蹤與照護，當先天性心臟病逐漸演變成慢性疾病，也顯示出先天性心臟病患者會因其各個發展階段進而產生不同的健康需求和挑戰；其中，青少年時期正是由兒童蛻變為成人的重要階段，歐洲心臟學會建議兒科轉介至成人先天性心臟病門診的年齡為18-21歲，但依據臺灣的醫療狀態顯示目前多為兒科醫師從兒童心臟病患者診斷初期持續照護至成年，因此，兒童成長過程中，主要以父母為主的醫療決策，至成人時期更呈現健康自我管理與轉介的重要性。在患者及家屬對於疾病本身和未來變化不夠瞭解的狀況下，容易導致青少年於未來生活、職場選擇及家庭規劃面臨社會角色功能的問題，護理的介入與協助可提供較完善的規劃與管理，故本文希望藉由探討先天性心臟病青少年的健康需求與家庭照護，關注青少年往後可能面臨的生理、心理、靈性與社會的發展狀態，並思考未來成人先天性心臟病可能提供的照護趨勢。

關鍵字

青少年；先天性心臟病；轉介；健康需求；家庭照護

並列摘要

This article discusses the health and family care needs of adolescent patients with congenital heart disease CHD. CHD is one of the most common congenital defects with unique health needs and challenges throughout the life of these affected. More than ninety percent of the CHD patients can grow into adulthood with continuous medical care and surveillance. The European Society of Cardiology suggested that the care for pediatric CHD patients be transitioned into an adult cardiology clinic between 18 and 21 years of age. However, most adult CHD patients in Taiwan are being cared for by pediatric cardiologists. This decision is usually made by their parents instead of the patients. The knowledge on self-health management and the importance of the transition of care should be discussed as early as childhood. Proper nursing management and interventions focus on the physical, psychological, spiritual, and social development aspects of care, providing knowledge on the disease process and the prognosis may prepare adolescent CHD patients to face difficulties that they may encounter in their future societal role, living, career decision and family planning.

並列關鍵字

adolescent ； congenital heart disease ； transition ； health needs ； family care

參考文獻

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先天性心臟病青少年的健康需求與家庭照護

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