主要照顧者面對初次化學治療返家之癌症病童居家照護的經驗

The Cancer-Child Homecare Experiences of Primary Caregivers after Discharge from the First Phase of Chemotherapy

朱怡勳(I‐Hsun Chu) ； 鄭夙芬(Su‐Fen Cheng) ； 吳維紋(Wei‐Wen Wu) ； 邱慧洳(Hui‐Ju Chiu) ； 梁淑媛(Shu‐Yuan Liang)

《護理暨健康照護研究》 11卷3期 (2015/09) Pp. 187-197

https://doi.org/10.6225/JNHR.11.3.187

摘要

背景：由於住院天數的縮短，主要照顧者需於短時間內學習病童返家後的居家照護。罹癌病童之主要照顧者於病童返家後需隨時察覺治療副作用、協助病童獲得足夠的營養及預防感染等，這些需要獨力完成的居家照顧可能會讓主要照顧者產生極大壓力及心理負荷。目的：了解主要照顧者面對初次化學治療返家後之癌症病童居家照護的經驗。方法：以描述性質性研究之深度訪談法進行，訪談15位主要照顧者。結果：共涵蓋三個主題與十個次主題，在「居家生活型態呈現混亂」主題中有三個次主題，分別為「家庭生活忙碌、慌亂、緊湊」、「試圖掌控居家照護所有的事物而感到精疲力竭」、「難以全面顧及其他成員的照顧」。在「對居家照護能力沒信心」主題中有三個次主題，分別為「對照護環境安全的擔心」、「食物選擇及準備的困擾」、「協助餵藥或需親自注射藥物的擔憂」。在「面對疾病照顧的調適」主題中有四個次主題，為「獨立扛起照顧責任」、「擔心病童出現緊急狀況」、「面對孩子身心變化卻無法幫忙」、「學習正向調適、感恩惜福」。結論／實務應用：初次返家後之照護以第一週壓力最大，尤其是前三天，可能會造成家庭功能失衡。若醫護人員能於病童返家後3天內，主動關懷並提供問題解決，將可協助主要照顧者學習自我調適，增加照護的信心。研究結果可提供醫護人員對返家照護參考，讓病童返家後能得到更好的照護品質。

關鍵字

兒童癌症 ； 居家照護 ； 主要照顧者 ； 化學治療 ； 質性研究

並列摘要

Background: With the increasing success in treating cancers and the shortened length of cancer‐related hospitalization, the primary caregivers for children with cancer must increasingly provide post‐discharge care of their children at home. However, the demands of being vigilant with regard to the side effects of treatment, providing adequate nutrition, and preventing infection in these children after returning home place high levels of stress and emotional burden on the primary caregivers. Purpose: The purpose of this descriptive qualitative study was to understand the experiences of primary caregivers in providing initial care at home to their children with newly diagnosed cancer after the first round of chemotherapy. Methods: In this descriptive qualitative study, in‐depth interviews with 15 primary caregivers were conducted. Results: The results revealed the following three themes and 10 sub‐themes. Theme one: chaos in home life (sub‐themes: family life characterized by busyness and fluster, exhaustion resulting from attempting to take control over all aspects of homecare, and inability to attend to the needs of other family members). Theme two: lack of confidence in the ability to provide home care (sub‐themes: concerns regarding the safety of the home environment, apprehensions about food selection and preparation, and worries about assisting in administering medications/injections). Theme three: taking ownership and making adjustments to provide care (sub‐themes: providing care independently, fears about potential emergency situations, feelings of helplessness in encountering physical or psychological changes in his/her child, and learning to make positive adjustments with thankfulness). Conclusions/Implications for Practice: The participants experienced their highest levels of stress during the first week, especially during the first 3 days after hospital discharge. Thus, the first 3 days after discharge is the optimal time for healthcare professionals to proactively provide care and resolve potential problems. The confidence of participants to provide effective care increased with time as they gradually adapted to the changes. These findings offer healthcare providers insight into providing quality post‐discharge care for children with cancer.

並列關鍵字

childhood cancer ； home care experience ； primary caregivers ； chemotherapy ； qualitative research

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