疫情期間照護癌症末期兒童之在宅臨終經驗

Experience of Home-Based Hospice Care for a Child with Advanced Cancer during the COVID-19 Pandemic

江戴圓(Tai-Yuan Chiang) ； 張詩吟(Shin-Yin Chang) ； 盧忻燕(Hsin-Yen Lu) ； 嚴從毓(Tsung-Yu Yen) ； 勞萱之(Hsuan-Chih Lao) ； 胡蓮芬(Lien-Fen Hu)

《安寧療護雜誌》 27卷1期 (2023/03) Pp. 64-78

https://doi.org/10.6537/TJHPC.202303_27(1).05

摘要

本文描述在新冠肺炎疫情期間，安寧居家團隊首次照護末期兒童在宅臨終經驗，不僅須面臨有別於以往成人的照護模式，以及疫情下未知的染疫風險，照護過程實屬充滿挑戰性。照護期間2021年8月12日至9月21日，團隊經由陪伴、傾聽、會談及直接照護等方式，收集生理、心理、社會及靈性等層面資料，確立主要健康問題：疼痛、照護技巧不足及家庭之預期性哀傷。針對問題進行文獻搜尋並提供個別性的護理措施，安寧居家團隊偕同原主治醫師進行居家訪視照護，並與案家建立通訊群組保持連繫，以即時止痛藥物的調整；協助和教導案父母運用翻身擺位、皮膚照護、手足護理和口腔清潔等舒適照護，以增進病童身體舒適度及案父母照顧的成就感；偕同心理師及關懷師的介入，以遊戲方式與案童、案手足建立關係，並提供及運用繪本陪伴和引導，共同陪伴家庭經歷悲傷和在宅臨終的預備，以完成病童在宅度過餘生之心願，落實安寧療護之照護精神，希望藉由分享此照護經驗，提供未來照護類似病童之參考。

關鍵字

新冠肺炎 ； 末期兒童 ； 安寧居家療護 ； 疼痛 ； 預期性哀傷

並列摘要

This paper recounts the experience of the hospice home care team as it provided home-based end-of-life care for terminally ill children for the first time during the COVID-19 pandemic. It documents the various challenges faced by the team during the care process as they dealt with a care model distinct from the conventional one designed for adults and the unknown risk of infection during the pandemic. The care took place between 12 August and 21 September 2021, during which the team collected physiological, psychological, social, spiritual, and other information to establish the key health issues-pain, inadequate care skills, and anticipatory grief of family members-by means such as companionship, listening, interviews, and direct care. Based on these factors, efforts were made to conduct a literature search and provide individualized nursing interventions. The team also offered home visits and home-based care alongside the original attending physician and set up a messaging group to stay connected with the patient's family members, to adjust the pain medications on the spot, and teach and assist the parents in employing comfort care skills such as patient turning and positioning, skin care, hand and foot care, and oral hygiene. This aimed to not only improve the physical comfort of the terminally ill child but also give the parents a stronger sense of achievement as caregivers. Moreover, together with the intervention from psychologists and spiritual care workers, the team engaged with the child and his siblings through games and offered them picture books for supporting and guiding them. The team embodied the spirit of hospice care by keeping family members company through grief, the preparations for home-based end-of-life care, and fulfilling the child's wish to spend the last days of life at home with the interventions of a psychologist and a care specialist. By sharing this care experience, this paper hopes to serve as a frame of reference for future care practices for terminally ill children in similar circumstances.

並列關鍵字

COVID-19 ； terminal childhood cancer ； hospice home care ； pain ； anticipatory grief

參考文獻

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