運用Swanson關懷理論協助家庭，面對嬰兒診斷CHARGE症候群之衝擊及護理經驗

Nursing Experiences Applying Swanson’s Caring Theory to Assist a Family Confronting the Impact of an Infant With CHARGE Syndrome

本文描述運用Swanson關懷理論協助家庭面對嬰兒診斷CHARGE症候群之衝擊及護理經驗。個案出生即有多重器官發育不全，透過基因檢測確診為CHARGE症候群。震驚悲傷的情緒加上返家照護和漫長的復健之路，是父母照護個案時面臨的最大挑戰及壓力。護理期間自2020年9月21日至2020年12月3日，筆者透過當面會談、通訊軟體聯繫及觀察等方式收集資料並撰寫成行為過程紀錄，確立主要健康問題為照顧者角色緊張， 並將護理過程歸納成：(1)家庭面對孩子診斷罕見疾病的衝擊期，(2)照護情境自醫院至居家的過渡期，(3)孩子發展遲滯的再衝擊期。以Swanson 關懷理論為護理照護指引，運用關懷理論中之「了解」、「在旁陪伴」、「為他做某些事」、「使他能夠」與「維持信念」的五大關懷核心於照護各階段並提供個別性之護理措施，傾聽父母內心的感受與鼓勵其情感的抒發，衛教相關因應策略提升父母照護的能力及建立正向之信念，緩解照顧者緊張之情緒，進而有信心勝任照顧者的角色。罕病兒家庭歷經疾病威脅與痛苦打擊，以關懷理論為基礎提供護理照護，可以協助家庭與照顧者在悲傷情境中找到能量，譜出不同的生命故事。

The purpose of this study was to explore the experiences of nurses who applied Swanson’s Caring Theory to assist coping in a family of an infant with CHARGE Syndrome. The patient was born with multiple organ hypoplasia and was diagnosed using genetic testing with CHARGE syndrome. The shock and sadness, coupled with returning home for care and the long and endless journey of rehabilitation, were the most significant challenges and pressures for the parents when taking care of the patient. The author used interviews, texting apps, and observations to collect data, and completed the recording process between September 21st and December 3rd, 2020. Based on the data, the primary nursing problem was caregiver role strain. The process of nursing was summarized as (1) the impact stage, when the family first faces the child’s diagnosis of a rare disease; (2) the transition stage from the hospital to the home in the care situation; and (3) the re-impact stage when the child experiences developmental delays. Swanson’s Caring Theory was applied in this study to guide nursing care. The five caring processes outlined in Swanson’s Caring Theory include knowing, being with, doing for, enabling, and maintaining belief. The authors used these caring processes at every stage to provide an individualized caring plan that included attentively listening to parents’ ideas, encouraging parents to express personal perceptions, providing strategies to enhance parents’ caring skills, and establishing positive beliefs to improve confidence. Nursing personnel may apply Swanson’s Caring Theory to assist families of children with rare diseases to not only gain positive beliefs in a grieving situation but also achieve a rewarding life.