醫療管路留置兒童之家庭主要照顧者的轉銜照護經驗與生活品質之混合研究

Abstract

研究背景及目的： 醫療科技日新月異，急性期利用各種醫療儀器及導管延長生命於兒童加護病房隨處可見，隨著病況逐漸改善進入亞急性期，受到併發症影響導致仍無法完全移除醫療導管之病童，返家時必須留置醫療管路才能得以延續生命，然現行醫療體制中，並未設置醫療管路留置病童專屬之養護機構，以呼吸照護中心為例，大都是收治成人病患，病童與其一起接受照護，床數更是少之又少，故病童家屬多半只能選擇返家照護。在準備由醫院返家轉銜過程中，醫療人員往往未察覺其所承受壓力及挑戰，目前國內僅有成人病患家屬進行相關研究，未有家庭主要照顧者面對醫療管路留置兒童之轉銜照護相關研究。本研究將探討家庭主要照顧者面對轉銜過程產生壓力、挑戰、所需資源及對生活品質產生什麼影響，讓醫療人員能夠深入了解其經歷、感受，希望藉由本研究，提供醫療團隊參考，擬定適合醫療管路留置病童出院服務，降低再入院率，並提升其生活品質及滿意度。

研究方法： 本研究採混合性研究設計，以立意取向方式於國立台灣大學醫學院附設醫院兒童醫院之兒童加護病房、中重度加護病房、一般病房、門診，進行橫斷式資料調查、質性訪談及量性研究，於2024年5月至2024年7月間進行收案。質性研究：由研究者以一對一方式進行訪談，以半結構式訪談大綱共訪談11位家庭主要照顧者，錄音之訪談內容轉檔為逐字稿，利用Colaizzi（1978）提出現象學七步驟進行分析。收案條件為：18歲以下身上有侵入性管路留置病童及家庭主要照顧者，可以清楚國、台語溝通者，收案樣本數將以內容分析結果而定，以未出現新的概念，資料達到飽和（saturation）的狀態為止；量性研究：使用結構性問卷收集資料，包含：「家庭主要照顧者及病童基本屬性」、以「台灣簡明版世界衛生組織生活品質問卷」做為研究工具，每一題皆是採用五點式量尺測量其得分情形，得分的範圍最少是一分(選第一個量尺語詞)，最多是五分(選第五個量尺語詞)，分數越高表示生活品質越好，接著與標準常模進行分析、比對，再以SPSS 29軟體進行描述性及統計性推論分析。

研究結果： 家庭主要照顧者管路留置病童轉銜照護經驗質性分析歸納出三項主題：「管路留置決策過程」、「管路留置或設備的影響、「轉銜到康復」，結果顯示家庭主要照顧者在管路留置病童照護上，面對急性期疾病衝擊、醫療管路無法移除、親職角色轉換轉換成專業人員、出院返家轉銜照護等挑戰，家庭照顧者若是無法順利完成轉銜過程，會對其個人及家庭造成危機。家庭主要照顧者生活品質統計結果，題項平均值低於3分總計9題，得分由低至高依序為：醫療依賴(1.87)、休閒娛樂(2.23)、正面感覺(2.27)、睡眠(2.43)、整體健康(2.67)、活力(2.67)、疼痛不適(2.70)、整體生活品質(2.80)、財務資源(2.80)；四範疇最以生理健康範疇無論是在最小值(1.71)、最大值(3.86)或平均值(2.88)都低於其他範疇，平均值由最低至最高依序為：生理健康範疇、心理範疇、環境範疇、社會關係範疇，顯示照顧者生活品質因照顧管路留置病童受到影響。家庭主要照顧者生活品質在基本屬性上與「性別」、「有無其他成員協助」統計上有顯著差異(p < .05)；家庭主要照顧者生活品質與管路留置病童特性在「性別」、「使用目的」統計上有顯著差異(p < .05)，即女性家庭照顧者、家庭支持系統薄弱、照顧男生病童、醫療管路使用目的在於維持營養其生活品質感受較差。

結論： 根據研究結果，醫療團隊應提早擬定出院照護計畫，鼓勵照顧者共同參與，依照規劃及照顧者學習成效調整進度，藉此提升照顧者準備度及自信心，讓醫院返家轉銜過程順利完成。另外，如何建立一完善統合窗口，專人專責進行個案管理，減少照顧者在照護病童之際，還需肩負各項資源協調及溝通角色之重擔，都是照顧者期待在照護管路留置病童時，可以更臻完善之處。

Background/ Purpose Medical technology is advancing rapidly, and the use of various medical devices and catheters to extend life in pediatric intensive care units is common. As conditions progress into the subacute phase, children whose medical catheters can't be completely removed due to complications often require continued use of medical devices to sustain life. However, the current healthcare system lacks dedicated care facilities for children requiring catheter placement. For instance, respiratory care centers primarily admit adult patients, with limited beds available for children, forcing most families to opt for home care. During the transition from hospital to home, healthcare professionals often overlook the stress and challenges faced by primary family caregivers. Existing domestic studies focus solely on families of adult patients, with no research targeting caregivers of children with indwelling medical catheters. This study aims to explore the stress, challenges, resource needs, and quality of life impact on primary family caregivers during the transition process. By understanding their experiences and feelings, this research seeks to provide healthcare teams with insights to develop suitable discharge services for pediatric patients with indwelling catheters, thereby reducing readmission rates and improving quality of life and satisfaction.

Methods This study adopts a mixed-methods design, conducted at National Taiwan University Hospital’s Pediatric Intensive Care Unit, Moderate-to-Severe Care Unit, General Ward, and Outpatient Department between May and July 2024. For qualitative research, one-on-one semi-structured interviews were conducted with 11 primary family caregivers. The recorded content was transcribed verbatim and analyzed using Colaizzi’s (1978) seven-step phenomenological method. Inclusion criteria included children under 18 with invasive catheter placement and family caregivers proficient in Mandarin or Taiwanese. The sample size was determined based on content analysis until data saturation. Quantitative research involved structured questionnaires, covering caregiver and patient demographic characteristics and utilizing the Taiwanese version of the WHOQOL-BREF. Each item was rated on a five-point scale, with higher scores indicating better quality of life. Data were analyzed using SPSS 29 software for descriptive and inferential statistics..

Results A qualitative analysis of the caregiving experiences of primary caregivers for children with indwelling medical catheters identified three themes: "decision-making process for catheter placement," "impact of catheter placement or equipment," and "transition to rehabilitation." The findings show that caregivers face challenges, including acute disease impacts, inability to remove medical catheters, role transitions from parent to professional caregiver, and the transition from hospital to home. Failure to manage these transitions can lead to crises for both the individual and the family. Statistical analysis of caregivers' quality of life revealed nine items with average scores below 3, including medical dependency, leisure activities, and overall health. The lowest quality of life scores were in the physical health domain (average 2.88). Caregivers’ quality of life was significantly affected by their gender and availability of support (p < .05), as well as by the child's gender and catheter use purpose (p < .05). Female caregivers, those with weak support systems, caregivers of male children, and those managing catheters for nutritional purposes reported poorer quality of life.

Conclusion Based on the findings, healthcare teams should formulate discharge care plans early and encourage caregiver participation. Adjusting care plans based on caregiver learning progress can enhance preparedness and confidence, ensuring a smoother transition. Additionally, establishing a comprehensive coordination hub with dedicated case managers can alleviate the burden of resource coordination and communication, meeting caregivers’ expectations for improved care services for children with indwelling medical catheters.