背景:嚴重腦損傷病童需接受多種侵入性治療,甚至面臨維生醫療的抉擇。父母參與病童醫療決策承受多重壓力與挫折,然目前卻沒有研究探討其決策心路歷程的本質。

目的:探討嚴重腦損傷病童之父母參與醫療決策心路歷程的本質結構。

方法:採「立意取樣」,自 2015 年至 2017 年間於南部某醫學中心兒童加護病房,選出研究者曾參與照護之 2 位嚴重腦損傷病童,徵得其父母的同意後,共有 3 位父母參與此研究。採用「描述現象學」研究法,以半結構式的訪談大綱作為指引,進行深度訪談。所得的文本依據 Colaizzi(1978)現象學分析步驟進行分析歸納。

結果:父母參與醫療決策之心路歷程則包含八個主題組型,分別為四種正向經驗:(一)不棄的愛、(二)為孩子發聲、(七)永生福氣、(八)轉化和諧,及四種負向經驗:(一)非我所願;(二)不解命運;(三)悔恨罪惡;(四)埋葬希望的心路歷程轉折。研究結果發現父母決策心路歷程的本質為「轉化希望」,突顯希望感對父母因應孩子嚴重腦損傷之過渡的重要性。

結論/建議:本研究發現父母經歷正負向經驗轉換的心路歷程,其中信仰帶給父母的希望感為面對孩子嚴重腦損傷時之醫療決策有重大影響。臨床醫護人員應建立信任與良善健康溝通互動的環境,提供文化融合性照護,再賦權給父母參與困難的醫療決策。未來研究可持續探討文化融合性照護幫助父母評估孩子醫療的利弊得失與面對喪子之慟的短期和長期成效。本研究結果可增進醫護人員對嚴重腦損傷病童之父母參與醫療決策經驗的整體性瞭解。期能成為臨床醫護人員協助家屬面對困難醫療抉擇時,尋找著力點之重要參考資料,落實以家庭為中心之照護,達成「參與式醫療決策」的目的。

Parents who have a child diagnosed with severe brain injury participate in making difficult medical decisions for their child. The present study aimed to explore the psychological process of parents’ participation in decision making for children with severe brain injury. In-depth semi-structured interviews were conducted with three parents of two children with severe brain injury at a medical center in southern Taiwan between 2015 and 2017. Data were collected and analyzed using Colaizzi’s (1978) phenomenological approach. Eight themes were conducted, including four positive experiences: (1) not giving up on love, (2) speaking for the child, (3) forever blessed, (4) transforming to harmony, and four negative experiences: (1) not doing on my will, (2) not understanding fate, (3) being regret and guilty, (4) burying the hope. Finally, “transforming hope” emerged as the essence of the parents’ experience. Practice implications and recommendations include establishing an environment that builds trust and good health communication, providing culturally congruent care and support before empowering parents to make difficult decisions.

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