喘息服務對身心障礙兒童主要照顧者之照顧負荷的影響：混合性研究

Abstract

研究目的：隨著人口老化與慢性病人口的增加，臺灣近年來在長期照護政策方面不斷推陳出新，但主要照顧者的角色仍至關重要，尤其身心障礙兒童主要照顧者在漫長的照護過程中面臨著巨大的負擔。喘息服務被視為一項可能提供支持的機制，然而，現有研究主要著重於老年人的照顧者，對兒童照顧者的關注相對不足。因此，本研究旨在深入探討臺灣身心障礙兒童主要照顧者對喘息服務使用的感受，以及評估喘息服務對其照顧負荷的實際影響。 研究方法：本研究採混合研究（mixed-methods research）之解釋性序列性研究設計進行，於2024年4月至2025年10月期間以橫斷式方式收集資料，量性部分透過立意取樣邀請121位符合兒童喘息服務申請資格的主要照顧者填寫基本資料問卷及CBI照顧者負荷量表（Caregiver Burden Inventory, CBI），共獲得118份有效問卷。質性研究部分以半結構式的深度訪談，邀請7位不同背景之身心障礙兒童的主要照顧者，引導其分享使用或未使用喘息服務之經驗、曾遇到的實際問題及因應方式。資料分析部分，量性數據使用 SPSS 統計軟體進行資料分析，以多元線性迴歸分析照顧負荷的相關因素，質性資料則採用內容分析法進行分析。最後透過整合和對比量性研究與質性研究結果，提出結論及建議。 研究結果：本研究共納入 118 位身心障礙兒童及其主要照顧者。照顧者以女性為主，平均年齡約 42 歲，半數照顧年數在五年以內（47.4%），受照顧之身心障礙兒童平均年齡為 7.7 歲，以神經及心智功能相關（第一類）障礙為主（56.8%），39%同時具有兩類以上障礙，嚴重程度以重度障礙最多（31.4%），30.5%兒童帶有管路。量性結果顯示，照顧者之照顧負荷量表平均為 40.2 分（標準差 13.7），顯示整體照顧負荷程度偏高；愧疚感平均為 49.1 分（標準差32.0）。CBI各面向中，以時間負荷最高，其次為生理負荷，而情緒負荷最低。喘息服務整體使用率為 29.7%，以使用居家型服務為主，使用動機多與時間彈性及實際照顧需求相關。照顧者是否會使用喘息服務的顯著相關因子為兒童患有的身心障礙類別數（1類或多類）與是否需管路照護，顯示兒童照顧需求較高之主要照顧者較可能使用喘息服務。在照顧者負荷方面，是否使用喘息服務與照顧負荷之雙變項分析（Bivariate Analysis）中未達統計上的顯著差異（p = 0.078），但在多元迴歸分析中，納入障礙類別數或管路照護之交互作用後，喘息服務對照顧負荷呈現顯著正向影響，顯示其效果具有情境依賴性，此外，照顧者自評健康狀況與愧疚程度為影響照顧負荷之主要預測因子，健康狀況較差及愧疚感較高者，其照顧負荷顯著較高。 質性結果指出，使用喘息服務的照顧者多將其視為生活調節策略與暫時休息的重要支持資源，惟實際使用仍受與照顧人員之信任感及照顧安全之顧慮影響；未使用者並非無需求，但因病童對照顧者的依賴、照顧者對他人照顧之信任有所顧慮，或家庭中有其他人員可以幫忙，加上認為申請過程麻煩，因而暫時以家庭內部支持作為主要因應方式。 結論：本研究結果顯示，身心障礙兒童的主要照顧者長期承受高度照顧負荷，尤其在時間與生理面向最為明顯。照顧者的健康狀況與愧疚感與照顧負荷呈顯著關聯，顯示其個人心理與身體狀態對照顧壓力影響甚鉅。喘息服務對照顧負荷的效益具情境依賴性，在照顧對象同時具有多重身心障礙或帶有管路等情境下，其影響效果更為明顯；然而，部分照顧負荷較高的家庭，雖然聽過喘息服務，但並未去深入了解其內容，或基於心理層面的顧慮而未實際使用喘息服務。這些發現提醒臨床與政策實務，需及早辨識高負荷之家庭，提供清楚且可行的資源指引，並優化喘息服務的制度彈性與人力穩定性，以減緩照顧者長期負荷並支持家庭功能。

Objective: Family caregivers play a critical role in Taiwan’s long-term care system; however, research has predominantly focused on caregivers of older adults, with limited attention to primary caregivers of children with disabilities. Respite care is considered a potential supportive mechanism, yet its actual impact on caregiver burden among this population remains underexplored. This study aimed to examine caregiver burden and to explore the experiences of primary caregivers of children with disabilities regarding respite care, as well as to assess its impact on caregiving burden. Methods: This study employed a cross-sectional explanatory sequential mixed-methods design conducted between April 2024 and October 2025. In the quantitative component, purposive sampling was used to recruit 121 primary caregivers eligible for children’s respite care services, yielding 118 valid questionnaires that included demographic information and the Caregiver Burden Inventory (CBI). The qualitative component comprised semi-structured interviews with seven caregivers, exploring their experiences with respite care use or non-use, encountered challenges, and coping strategies. Quantitative data were analyzed using SPSS, with multiple linear regression used to examine factors associated with caregiver burden. Qualitative data were analyzed using content analysis. Findings from both components were integrated to inform conclusions and recommendations. Results: A total of 118 primary caregivers of children with disabilities were included. Most caregivers were female, with a mean age of approximately 42 years, and 47.4% had provided care for less than five years. The children had a mean age of 7.7 years; the majority had neurological or intellectual disabilities（56.8%）, 39% had two or more types of disabilities, 31.4% were classified as having severe disabilities, and 30.5% required medical device care. Quantitative findings indicated a moderate-to-high level of caregiver burden, with a mean CBI score of 40.2（SD = 13.7）and a mean guilt score of 49.1（SD = 32.0）. Among burden dimensions, time-related burden was the highest, followed by physical burden, whereas emotional burden was relatively low. The overall utilization rate of respite care was 29.7%, with home-based services being the most commonly used. Respite care utilization was significantly associated with the number of disability types and the need for medical device care. Bivariate analysis showed no significant association between respite care use and caregiver burden（p = 0.078）. However, in multiple regression models incorporating interaction terms with disability complexity or medical device care, respite care demonstrated a significant effect on caregiver burden, indicating a context-dependent impact. Caregiver self-rated health status and guilt were identified as the primary predictors of caregiver burden. Conclusion: Primary caregivers of children with disabilities bear long-term and complex caregiving responsibilities, with caregiver burden particularly pronounced in time-related and physical dimensions. Caregiver health status and guilt are significantly associated with caregiving burden. The effect of respite care on caregiver burden appears to be context-dependent, with greater benefits observed among caregivers facing higher care complexity. These findings highlight the importance of early identification of high-burden families, improved access to information, and enhanced flexibility of respite care services to reduce long-term caregiver burden and support family caregiving.