運用混合研究探討複雜醫療照護需求兒童主要照顧者之照顧者負荷、生活品質及其家庭功能與家庭韌力

Abstract

背景及目的：複雜醫療照護需求兒童（children with medical complexity, CMC）係指需長期依賴醫療設備或管路以維持生活的慢性病兒童，雖僅佔兒童總數的0.7%至11.4%，但卻消耗大量醫療資源，並伴隨高住院率與家庭照護需求。照顧者在照護過程中常面臨經濟壓力、工作中斷與社會支持不足等挑戰，可能進一步削弱照顧能力並影響生活品質。過去研究發現，病童病情嚴重度高，會使照顧者負荷上升，此外，照顧者的負荷越大，生活品質越差。然而，目前複雜醫療照護需求兒童的照顧者負荷、生活品質與家庭功能及家庭韌力之間的相關文獻仍然不足，尤其國內相關研究仍相當缺乏。因此，本研究目的為透過量性與質性研究結合的混合研究方法，系統性探討CMC照顧者之照顧者負荷、生活品質與其家庭功能與家庭韌力之現況及關聯性，並進一步分析影響照顧者負荷及生活品質的關鍵預測因子，期能提供實證資料，以作為照護實務與政策發展之實證基礎。 研究方法：本研究於2024年4月至2025年7月期間，採用混合研究方法的收斂平行設計，量性研究部分透過立意取樣招募197位CMC主要照顧者，填寫經信效度驗證之量表，包括照顧者負荷量表（caregiver burden inventory, CBI）、生活品質量表（12-item short-form health survey, SF-12）、家庭功能量表（family APGAR Index）與家庭韌力量表中文版（Chinese version of the family resilience assessment scale, FRA-C），共獲得196份有效問卷。質性研究部分則以半結構式訪談方式，邀請8位不同背景之CMC照顧者，深入探討其照護經驗與家庭調適歷程。資料分析部分，量性數據使用IBM SPSS Statistics 27進行描述性統計、皮爾森積差相關，及多元線性逐步複迴歸分析，質性資料採用主題分析法進行分析。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：研究問卷回收有效樣本共196份，結果摘要如下：CBI平均得分為38.4（SD = 14.72），以時間負荷最高（M = 12.9, SD = 4.06, 64.5%），情緒負荷最低（M = 3.1, SD = 3.08, 15.5%）；SF-12平均得分為96.48（SD = 13.32），生理健康（M = 49.91, SD = 7.03）高於心理健康（M = 45.47, SD = 10.03），顯示心理健康受較大影響；家庭功能（APGAR）平均得分為7.23（SD = 2.51），其中「融洽度（resolve）」得分最高（M = 1.65, SD = 0.54, 82.5%）；家庭韌力（FRA-C）為122.3（SD = 17.16），其中家庭溝通歷程得分最高（M = 37.14, SD = 5.16, 82.5%），家庭組織模式範疇最低（M = 34.31, SD = 4.92, 76.2%）。相關性分析顯示，病童年齡與照顧者負荷呈負相關（r = -.26, p < .001），每日照顧時數則與照顧者負荷呈正相關（r = .27, p < .001）；照顧者負荷與生活品質、家庭功能、家庭韌力皆呈顯著負相關（r = -.87、-.75、-.82，p < .001）。多元線性逐步複迴歸結果指出，照顧者負荷（β = -.63, p < .001）與家庭韌力（β = .29, p < .001）為生活品質的重要預測因子，解釋變異量高達79.1%。質性訪談結果顯示受訪照顧者普遍經歷長期焦慮、睡眠不足與身心俱疲等挑戰，家庭關係亦因照護壓力而產生衝突，惟部分家庭展現出更強凝聚力。多數照顧者認為社會與醫療資源不足，亟需財務、心理與社區照護支持，本研究結果顯示，家庭功能與家庭韌力可在一定程度上緩衝高照顧負荷對生活品質的負面影響。 討論及結論：本研究為國內首度運用混合研究方法探討CMC照顧者之負荷、生活品質、家庭功能與家庭韌力間的關聯性，結果指出，照顧者普遍承受高強度的照護負荷，尤其是時間性與經濟性負荷最為顯著，亦與生活品質呈負相關。量性資料顯示情緒負荷偏低，但質性資料揭露潛在心理壓力與情緒耗竭，顯示問卷工具在評估潛在心理負荷方面的敏感度仍有侷限。生活品質分析顯示，心理健康構面相對脆弱，且家庭韌力與照顧者負荷為生活品質的重要預測因子，顯示需整合負荷緩解與家庭支持雙軌介入。家庭功能表現穩定，但「情感表達」與「個人成長」構面相對較弱，顯示在高壓照護情境中，易使家庭互動品質下降；家庭韌力整體良好，尤其信念與溝通歷程展現調適力，但資源組織與外部資源運用為相對弱項，反映家庭雖具備內部凝聚力，卻仍受限於外部支持系統的缺乏。質性資料亦強調，經濟條件、情感支持、家庭凝聚力為支持家庭持續應對壓力的重要來源，外部支持系統缺口會放大對照顧負荷的影響，故應對於低收入家庭、多重照護需求者及處於關鍵轉換期（如初診斷、出院、重大醫療決策）之家庭，應提供預防性介入與政策支持。本研究證實家庭功能與韌力具緩衝與保護作用，建議實務上強化全人照護與家庭支持策略，特別在關鍵時期提供多層次支持。同時，後續研究可深入探討中介與調節機制，並發展具文化適應性的評估工具與介入模式，促進CMC照護家庭的長期穩定與福祉。

Background and Purpose: Children with medical complexity (CMC) are defined as pediatric patients with chronic conditions who require long-term dependence on medical equipment or indwelling devices to sustain daily living. Although they constitute only 0.7% to 11.4% of the pediatric population, they consume a disproportionately large amount of healthcare resources and are associated with high hospitalization rates and substantial family caregiving needs. Caregivers of CMC often encounter multiple challenges, including financial strain, employment disruptions, and insufficient social support, which may further undermine their caregiving capacity and negatively affect their quality of life. Previous studies have indicated that greater disease severity in children leads to increased caregiver burden, and higher caregiver burden is associated with poorer quality of life. However, existing literature exploring the interrelationships among caregiver burden, quality of life, family function, and family resilience in the context of CMC remains limited, particularly in Taiwan, where empirical research is notably scarce. Therefore, this study aimed to adopt a mixed-methods approach that integrates quantitative and qualitative research to systematically explore the current status and interrelationships among caregiver burden, quality of life, family function, and family resilience in caregivers of children with medical complexity (CMC). Furthermore, it sought to identify key predictors influencing caregiver burden and quality of life, with the goal of providing empirical evidence to inform clinical practice and policy development. Methods: This study was conducted from April 2024 to July 2025, utilizing a convergent parallel design within a mixed-methods framework. For the quantitative component, 197 primary caregivers of children with medical complexity (CMC) were recruited through purposive sampling. Participants completed a set of validated instruments, including the caregiver burden inventory (CBI), the 12-item short-form health survey (SF-12), the Family APGAR Index, and the Chinese version of the family resilience assessment scale (FRA-C), resulting in 196 valid responses. For the qualitative component, in-depth semi-structured interviews were conducted with eight CMC caregivers from diverse backgrounds to explore their caregiving experiences and family adaptation processes. Quantitative data were analyzed using IBM SPSS Statistics 27, including descriptive statistics, Pearson product-moment correlation, and stepwise multiple linear regression analyses. Qualitative data were analyzed using thematic analysis methods. Findings from both quantitative and qualitative components were then integrated and compared to formulate comprehensive conclusions and practical recommendations. Results: A total of 196 valid questionnaire responses were collected. The average Caregiver Burden Inventory (CBI) score was 38.4 (SD = 14.72), with the highest burden in the time-dependence subscale (M = 12.9, SD = 4.06; 64.5%) and the lowest in the emotional burden subscale (M = 3.1, SD = 3.08; 15.5%). The mean score for quality of life (SF-12) was 96.48 (SD = 13.32), with physical health (M = 49.91, SD = 7.03) scoring higher than mental health (M = 45.47, SD = 10.03), indicating a greater impact on psychological well-being. The average score for family function (APGAR) was 7.23 (SD = 2.51), with the highest score in the “resolve” item (M = 1.65, SD = 0.54; 82.5%). The average score for family resilience (FRA-C) was 122.3 (SD = 17.16), with the highest subscale in family communication processes (M = 37.14, SD = 5.16; 82.5%) and the lowest in organizational patterns (M = 34.31, SD = 4.92; 76.2%). Correlation analyses showed that the child’s age was negatively correlated with caregiver burden (r = -.26, p < .001), while daily caregiving hours were positively correlated with caregiver burden (r = .27, p < .001). Caregiver burden was significantly negatively correlated with quality of life, family function, and family resilience (r = -.87, -.75, and -.82, respectively; all p < .001). Results from stepwise multiple linear regression analysis revealed that caregiver burden (β = -.63, p < .001) and family resilience (β = .29, p < .001) were significant predictors of quality of life, accounting for 79.1% of the variance. Findings from the qualitative interviews revealed that most caregivers experienced chronic anxiety, sleep deprivation, and physical and emotional exhaustion. Caregiving stress also led to conflicts in family relationships, although some families demonstrated greater cohesion in the face of adversity. Many caregivers reported a lack of sufficient social and medical resources, highlighting the urgent need for financial, psychological, and community-based caregiving support. The results of this study suggest that family functioning and resilience can partially buffer the negative impact of high caregiving burden on quality of life. Discussion and Conclusion: This study is the first in Taiwan to employ a mixed-methods approach to examine the interrelationships among caregiver burden, quality of life, family function, and family resilience in caregivers of children with medical complexity (CMC). The findings indicate that caregivers generally face a high level of caregiving burden, with time-related and financial burden being the most prominent, and both are significantly negatively associated with quality of life. While quantitative data showed relatively low levels of emotional burden, qualitative findings revealed substantial psychological stress and emotional exhaustion, suggesting limitations in the sensitivity of the quantitative instruments in capturing latent emotional distress. Analysis of quality of life further indicated that mental health was more vulnerable than physical health. Family resilience and caregiver burden emerged as significant predictors of caregivers' quality of life, underscoring the need for dual-focused interventions that simultaneously address burden alleviation and family support enhancement. Family function appeared to be generally stable; however, the domains of emotional expression and personal growth were relatively weaker, suggesting that high-stress caregiving environments may compromise the quality of family interactions. Family resilience was found to be relatively strong overall, particularly in terms of belief systems and communication processes, which demonstrated adaptability. Nevertheless, organizational patterns and utilization of external resources were identified as weaker components, reflecting that although families may possess strong internal cohesion, they often remain limited by insufficient external support systems. Qualitative data further emphasized the importance of financial conditions, emotional support, and family cohesion as critical factors that sustain families in coping with prolonged caregiving stress. Gaps in external support systems were found to exacerbate the impact of caregiver burden. Therefore, preventive interventions and policy support should be prioritized for low-income families, those with multiple caregiving demands, and families undergoing critical transitions (e.g., initial diagnosis, hospital discharge, or major medical decision-making). This study confirms the buffering and protective roles of family function and resilience. Practically, it is recommended that holistic care and multi-level family support strategies be strengthened, particularly during high-risk transitional periods. Future research should explore potential mediating and moderating mechanisms and develop culturally adapted assessment tools and intervention models to promote the long-term stability and well-being of families caring for CMC.