探討口腔吞嚥困難早產兒母親返家初期之照顧經驗

背景：醫療的進步使早產兒存活率有逐漸升高的趨勢，但仍無法改變早產所帶來的神經發展障礙，完整的口腔吞嚥機制約在妊娠34週發育完成，因此在34週之前出生的早產兒，就容易出現口腔吞嚥困難的問題。早產兒出生後便入住新生兒加護病房照顧，但吞嚥困難的問題，是需要長期訓練才能逐漸改善，若早產兒出院前未能達到成熟的吞嚥能力，返家後仍須以鼻胃管餵食，這會使早產兒家庭返家後的照顧負擔增加。研究目的：本研究的目的在探討口腔吞嚥困難早產兒母親返家初期之照顧經驗。研究方法：本研究為質性研究設計，以現象學研究法進行。研究情境為臺灣中區一所醫學中心，研究對象為口腔吞嚥困難早產兒母親，採立意取樣，經其同意，逐一深入訪談。研究者於早產兒出院一個月後，訪談5位母親進行7次回溯性，半結構式深度訪談。本研究採用Creswell 及 Poth資料螺旋分析法進行分析，並依據Licon 及Guba所主張可確實性、可轉換性、可靠性、中立性等四方面來提高本研究嚴謹度。研究結果：將口腔吞嚥困難早產兒母親返家初期之照顧經驗，歸納出4項主題及11項次主題包括：不如預期的到來（成為母親的失落、母親的擔憂、異樣的眼光）、選擇面對的改變（喜憂參半的迎接、一肩擔起責任、馬不停蹄的生活）、在淬煉中求希望（盡心竭力的照顧、日積月累的進步、無微不至的呵護）及驀然回首來時路（如人飲水，冷暖自知、逆境中的體悟）。結論：口腔吞嚥困難早產兒母親在返家初期會經歷一段艱難的過渡期，比起專業醫療的協助，母親更仰賴同性質團體的支持，此經驗影響的不僅是母親個人，也包含了對父親的影響，依結果提供臨床護理、教育、政策及研究四大面向之建議，希望藉由本研究結果可提供臨床專業人員及相關機構之參考，並能主動提供早產兒母親相關照護資訊，能以母親的觀點共同參與口腔吞嚥困難早產兒之照顧。

關鍵字

早產兒；口腔吞嚥困難；母親；照顧經驗

並列摘要

Background: Advances in medical care have gradually increased the survival rate of premature infants, but however, still cannot change the neurodevelopmental disorders caused by premature delivery. The oral swallowing mechanism of newborn is completed around 34 weeks of pregnancy. Therefore, premature infants who were born before 34 week are easy to come with oral swallowing problems. Premature infants are admitted to NICU after birth and long-term training is required to gradually improve the dysphagia problems. If premature infants fail to reach mature swallowing ability before discharge from hospital, they still need nasogastric tube feeding after returning home which will also increase the loading of caregiving. Purpose: To explore the caregiving experiences of mothers of preterm infants with Oropharyngeal Dysphagia during the early stage after returning home. Methods: This study is a qualitative research designed based on the phenomenology. The research scenario is a medical center in Central Taiwan and the objects are mothers of the premature infants with oropharyngeal dysphagia. It’s a purposive sampling depth interviews with the agreement of the interviewees. The researcher has interviewed five mothers for a total 7 times retrospective, semi-structured in-depth interview one month after discharge of their premature infants. The data were analyzed based on Creswell and Poth’s data spiral analysis. The stringency of this study was also improved according to four aspects advocated by Lincoln and Guba including credibility, transferability, dependability and confirmability. Result: The experience of caregiving for premature infants with oral dysphagia have been summarized to four themes and eleven sub-themes including: Unexpected upcoming (the disappointment of being a mother, worries of mothers, different insight), Choose to face challenges (greetings with mixed blessings, be responsible, a non-stop life), Seeking hope in hard ship (dedicated careness, progress day by day, meticulous care) and Looking back through the bygone days. (only the wearer knows where the shoe pinches, comprehension in adversity) Conclusion: Mothers of premature infants with oral dysphagia will go through a tough transition period at the early stage of returning home. By this time, they are more relying on the supports from the congenial groups compare with the professional medical assistance. This experience not only affects mothers individually, but also includes the impact on fathers. According to the results, we provide recommendations for four major aspects of clinical care, education, policy and research. We hope the results of this study can offer references for clinical professionals and related institutions and can actively provide care information for mothers of premature infants, which allow them to involve in the care of premature infants with oral dysphagia together through the perspective of mothers.