肝臟移植患孩母親的照護經驗－－前驅性研究

The Experiences of Maternal Care-giving for Children Undergoing Liver Transplantation - -A Pilot Study

本研究藉由質性研究探討母親照護膽道閉鎖患孩面臨肝臟移植之照護經驗，以立意取樣方式收案三位在中部某醫學中心接受肝臟移植患孩的母親同意參與本研究，每位母親接受訪談約3～4次，一次訪談的時間約30～60分鐘，所有訪談內容經徵求同意之後，將訪談過程錄音並謄寫成逐字稿，再以主題分析法分析研究資料。研究發現母親的照護經驗分三期：一、肝臟移植前期：巨大衝擊，但認命，積極面對、努力增進照護能力、背負照護患孩的沉重心理負擔、在期待與矛盾之間努力朝向重生的希望。二、肝臟移植住院期：兩位至親家人同時進行手術－－母親孤獨、無助、擔憂、難兼顧兩位至親家人的照顧需求、提供患孩個別性的照護訊息。三、肝臟移植後居家期：醫療團隊人員的協助不足、堅守不被感染與保護新肝臟、欣喜看到患孩排便正常且有活力的成長。由上述的研究結果建議醫護人員應評估母親對肝臟移植及相關疾病的知識及其需要，也應認知患孩是支撐母親走過肝臟移植過程的最大動力及最佳支持來源，因此接納患孩及提升對患孩的照護就是對母親最大的支持。

The aim of this qualitative research was to explore the experiences of maternal care-giving for children undergoing liver transplantation due to biliary atresia. Three voluntary mothers were recruited from a medical center in central Taiwan. Each participant was interviewed three to four times and each interview lasted thirty to sixty minutes. All interviews were tape-recorded and transcribed and data analysis was guided by the hermeneutic circle. Three aspects were emerged from the mothers’ caregiving experiences. The first aspect was named “before liver transplantation” and was characterized by accepting the child’s disease, learning and integrating new knowledge and skills into daily care-giving. Self-questioning her own caring ability, and striving for hope of a successful liver transplant. The second aspect was named “during liver transplantation and hospitalization” and was characterized by feeling helpless whilst waiting outside the operation room, and difficulties in satisfying the donor’s and the recipient’s needs simultaneously and preserving a high quality of care for her child in the intensive care unit, and concern for an individualized care of her children. The final aspect was named “after liver transplantation” and was characterized by lacking complete support health professionals, being protective of the child, and feeling grateful that the child regained health. Implications for clinical practice are discussed in terms of the assessment of the mothers’ apprehension and needs. Appreciation of the mother’s motivation to dedicate herself to care-giving for her child is realized by understanding what matters and concerns her during the process of caring.