Care Burden and Quality of Life among Caregivers in Pediatric Respiratory Home Care: A Preliminary Report

Abstract

<p>研究背景與目的：由於醫療科技與照護品質的進步，呼吸重症兒童存活率提升，需要長期呼吸照顧的兒童及需求日漸增多，包含就醫、照護、就學、成長等長期的、多方面的撫育照顧需求。本研究目的如下：1.了解居家呼吸照護兒童與家庭照顧者的人口學特質，2.探討照顧者負荷與生活品質。研究方法：本研究為橫斷性研究，採立意取樣。收案對象為居家使用呼吸器30天以上或有氣切造口之18歲以下兒童的家庭照顧者。本研究首先利用問卷評估居家呼吸照護兒童的特質及功能行為量表、家庭照顧者人口學特質與其家庭特性。並另外以問卷了解家庭照顧者的照顧負荷，家庭照顧者的生活品質則以世界衛生組織生活品質-台灣簡明版之問卷作為評量。本研究收集之資料，依據研究目的，進行描述統計結果，敘述分析其特性。研究結果：本研究收集有效問卷共計102位家庭照顧者，90%之家庭照顧者為母親，平均年齡41.2±9.7歲，照顧者有一半以上提供全日照護，83人加入相關社群支持團體。居家照護兒童平均年齡7.8±5.4歲，男童59位，使用呼吸器者有96人，氣切照護52人，到校上學55人，主要診斷為中樞神經系統與神經肌肉疾病居多，過去一年住院原因以肺炎為主(38%)。本研究對象之照顧負荷以社會負荷最高，依序為經濟、心理與生理負荷，負荷指數皆大於70%。生活品質則以社會關係範疇之滿意程度最高，最低為心理健康範疇。結論：本研究結果發現兒童居家呼吸照護具有長期、多元、仰賴照顧特質，主要照顧者之照顧工作複雜且不容易取代的特性，導致其高照顧負荷，與生活品質滿意度低。建議應了解長期呼吸照護兒童家庭照顧者之需求，提供資源與社會支持，以減緩照顧負荷，並促進家庭功能與生活品質。</p> <p> </p><p>Background and Purpose: The increased care burden among home caregivers results in significant stress. This preliminary report aimed to evaluate the pediatric respiratory home caregivers’ burden and quality of life (QOL). Methods: This cross-sectional study used purposive sampling to prospectively recruit children re-ceiving pediatric respiratory home care and their caregivers. Eligible children were defined as children younger than 18 years who had used home ventilators for more than 30 days or who needed tracheostomy care. The Caregiver Care Burden Scale was used to investigate the caregivers’ physiological, psychological, social and economic burdens. QOL was assessed using a brief version of the QOL scale developed by the World Health Organization (WHOQOL-BREF). Results: A total of 102 pairs of chil-dren and caregivers were included. Caregivers’ mean age was 41.2±9.7 years, and 90% were mothers of home care children. Children’s demographic and clinical char-acteristics were: age 7.6±5.4 years, ventilator-dependent (n=96), tracheostomy (n=52), with major diagnoses of central nervous system disorders (44%) and neuromuscular dystrophy (23%). Social burden was the highest care burden, and the four care burden domains were all above 70%, indicating a medium level of care burden. Psychological QOL had the lowest score among the four QOL domains. Conclusions: Pediatric res-piratory home care is long-term, multidisciplinary, and highly-dependent. The overall care burden and QOL of home caregivers are at a medium level. Psychosocial support and focusing on caregivers’ needs and general health may reduce caregivers’ care burden, improve QOL and enhance family dynamics in pediatric respiratory home care.</p> <p> </p>