照護一位缺氧性腦病變嬰兒反覆入院及其家庭之護理經驗

新生兒「缺氧性腦病變」伴隨神經功能發展障礙，需長期特殊照顧，衝擊家庭運作。個案出生心跳停止致缺氧性腦病變，反覆呼吸道感染入院，因神經反射異常導致餵食困難及生理發展落後；家屬對個案發展有不適當期待，威脅親職依附關係連結與影響早期療育介入時機。運用兒科整體性評估及家庭功能評估，確立健康問題有:潛在危險性肺吸入、營養少於身體所需及潛在親職功能障礙。教導案父母正確灌食姿勢、改變臥位，增加對胃造口術照護知能，得以降低肺吸入風險達到安全的餵食；提供「正常發展」、「缺氧性腦病變」訊息，加強案父母對疾病現實感；建議將此殘疾嬰兒納入個案管理的對象，以延伸連續性照護及追蹤，提供此家庭更周全照護。

An infant diagnosed with neonatal hypoxic encephalopathy, accompanied by neurological development disorders, requires prolonged specialized care, significantly impacting the functioning of the infant's family. In this case study, the infant experienced hypoxic encephalopathy due to a cardiac arrest during birth, subsequently leading to repeated hospitalizations for respiratory infections. Abnormal neural reflexes resulted in feeding difficulties and severe delays in physiological development. The parents' unrealistic expectations regarding the infant's development posed a significant threat to parental attachment and hindered early intervention efforts. Utilizing the Pediatric Holistic Assessment and Family Function Evaluation for data collection and analysis, the following health issues were identified: potential risks of aspiration, inadequate nutrition, and potential parental dysfunction. To address these concerns, the parents were instructed on maintaining proper feeding posture and changing the infant's lying position. Education on gastrostomy and nursing care procedures was provided to ensure safe feeding practices and reduce the risk of aspiration. Additionally, the parents were equipped with a Normal Development Evaluation Form and information on hypoxic encephalopathy, enhancing their understanding of the condition's reality. Strong recommendations were made for the infant to be enrolled in the Case Management Project to receive ongoing comprehensive care and follow-up support for both the infant and his family. This approach aims to extend continuous care and support to ensure the well-being of the infant and his family.