運用FOCUS家庭介入措施於四度腦室出血早產兒及其家庭之照護經驗

Using the FOCUS Family Intervention for Family-Centered Care in a Premature Infant With Grade IV Intraventricular Hemorrhage

早產兒因為器官發育不成熟，有較高的合併症及死亡率，使其父母在充滿醫療的不確定性與無力感之中，進而對個人的身心健康及全家人的生活造成諸多負面的影響。本文個案為一位極低出生體重908公克的早產兒，一開始生命徵象不穩定，而後合併四度腦室出血，造成腦萎縮及腦室擴大，有極高的機率導致腦性麻痺及認知障礙。個案不僅未來需依賴他人照顧，亦可能造成家人沉重的身、心及經濟負擔。案父母在面對個案的不良預後，陷入放棄與積極救治的現實與倫理兩難，造成極大的壓力及睡眠問題。在醫療決策過程中，案父母與臨床醫護人員對個案病況與治療的認知不同，亦導致醫病關係緊張。筆者運用FOCUS家庭介入措施（FOCUS family intervention），提供以家庭為中心的支持性照護，在家庭方面：增進家庭參與、正向態度、有效的壓力因應方式、降低不確定感及負面評價；在個案方面：給予症狀處理，減少個案異常的肌肉張力及發展遲緩，使案父母在面對疾病的過程中改善因面對孩子疾病與預期照顧壓力的負向情緒、失眠症狀、失衡的家庭關係及生活品質，使個案能增進自我調節能力、減緩異常的神經發展。期望此照護經驗，提供臨床護理人員照顧有腦部損傷早產兒及其家庭之參考。

Preterm infants face increased rates of mortality and developmental complications, which are a burden on children's parents (and caregivers), who suffer from exhaustion and situational uncertainty. This case focused on an extremely-low-birth-weight (908 gm) premature infant with initial unstable vital signs complicated by a grade 4 intraventricular hemorrhage (IVH) that led to partial brain atrophy and enlarged brain ventricles. A poor neurological outcome was expected due to the high risk of cerebral palsy and impaired cognitive abilities. Long-term healthcare for this critical infant was causing tremendous physical, emotional, and financial strains on the family. The parents suffered from worries over the poor prognosis, resulting in stress, sleep disorders, and relationship difficulties with the healthcare professionals. Considering the poor prognosis of the infant, the parents faced a medical dilemma between choosing aggressive treatment and withdrawal of treatment, which led to stress and sleep disorders. Differences between the parents and health professionals regarding disease severity perception and treatment opinions further strained their mutual relationship. To ameliorate this issue, the author implemented family-centered care (the FOCUS family intervention) to help the patient and his family. This intervention is designed to increase family involvement, foster an optimistic attitude and effective stress coping techniques, and reduce uncertainty and negative emotions. For the patient, we provided symptom-relief management to improve abnormal muscle tone and development delay. Our intervention ameliorated the negative emotions, insomnia symptoms, and imbalanced family relationships and improved the life quality of the caregivers. Furthermore, the intervention enhanced the patient's autoregulatory ability, and both physical and neurological development. This case study is expected to provide experience in critical care for premature infants with a poor prognosis and their family using a FOCUS family intervention as well as to improve the quality of healthcare delivery in intensive clinical settings.