背景：世界衛生組織建議生命受限情況之兒童及青年應及早接受「安寧緩和療護」以提升其生活品質。然尚未有足夠文獻探討安寧緩和療護服務在亞洲這類兒科族群的照護需求及其末期照護的脈絡。本研究目的為探討生命受限情況兒童及青年之盛行率及其趨勢、健康照護服務之利用率及照護需求。
方法：本研究採用混和性研究法:量性觀點:採用回溯性世代研究法，資料來源為衛生福利部衛生福利資料科學中心，(1)計算2008至2017年間0至25歲生命受限情況兒童及青年之盛行率，以及其在安寧緩和療護和其他健康照護服務的利用率；(2)分析安寧緩和療護介入之預測因子；(3)以系統性文獻回顧和(4)以回溯性世代研究法，探討安寧緩和療護對生命末期照護和死亡地點之影響；質性觀點:(5)針對13位兒科專業人員之質性訪談資料進行次級資料分析，以主題分析法探討安寧緩和療護的介入方式和時機；(6)採用紮根理論研究法，運用半結構式訪談9位父母及13位專業人員，建構生命受限情況兒童及家庭之照護需求理論。
結果：綜合十年資料發現台灣生命受限情況兒童及青年之盛行率自每10萬人59.4人上升至81.0人，其中6,863位死亡兒童及青年中僅有14.3%曾轉介過安寧緩和療護服務。16歲以上、死亡前一年有較高醫療照護利用、具特殊診斷、入院後非短期內死亡，以及居住於最都市化地區者有較高機會能接受到安寧緩和療護服務。尚未有足夠證據支持此服務能降低住院天數、死亡前接受心肺復甦術或是降低死亡地點在醫院的比例。照護需求包含:(一)照護指導、(二)終身規劃、(三)持續性支持保障、(四)尋找意義。
結論/建議:本研究凸顯生命受限情況兒童及青年對安寧緩和療護資源的高度需求，以及跨專業團隊及持續性照護的重要性。未來尚須探討特定診斷族群較不易獲得安寧緩和療護的原因，及探討早期介入安寧緩和療護者，生命末期仍有高度住院需求及選擇在醫院死亡之現象。建議及早討論生命末期照護外，須依照家庭個別化需求進行終身規劃，協助父母掌握孩子的日常照護及正常化發展。

Early involvement of palliative care (PC) is recommended for children and young adults with life-limiting conditions (LLCs). This dissertation aimed to explore pediatric PC needs in Taiwan, in terms of prevalence, predictors, impacts, and caregiving experiences among children and young adults with LLCs. A mixed-methods design comprised quantitative methods using data from the Health and Welfare Data Science Center to estimate the prevalence of needs among children and young adults aged 0-25 between 2008 and 2017 in Taiwan, a retrospective cohort study (n=6,863) and a systematic review to determine predictors of PC, and its impact on end-of-life (EoL); qualitative methods to explore PC needs using a qualitative secondary analysis (n=13) and a Grounded theory approach (n=22). The prevalence of LLC has increased from 59.4 to 81.0 per 10,000 population in Taiwan. Only 14.3% of such patients were referred to PC prior to their death. Patients were more likely to access PC if they were: older, had higher hospital use; had a specific diagnosis and lived in highly urbanized area. PC was found to be associated with a decrease in intensive care use and late transition to hospitals. The need for shared knowledge regarding wishes for care and EoL decision-making with family members triggered PC initiation. Four key elements of caregiving needs emerged: (1) care guidance, (2) lifelong planning, (3) continued assurance of support, and (4) a search for meaning. This study demonstrates priorities for a multidisciplinary involvement and continuity of support intended to address the needs of children and families by helping with lifelong planning and enabling mastery of daily care.

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