腦性麻痺兒童及其照顧者生活品質之影響因子

Abstract

背景與問題：腦性麻痺(cerebral palsy)是最常見且會造成孩童長期運動功能障礙的小兒病症，其動作控制困難與伴隨的障礙影響孩童的日常生活及其生活品質(quality of life)。此外，由於腦性麻痹孩童照顧者不僅長期照護孩童的健康與生活，更同時面對因照護孩童對自我與家庭生活所產生的衝擊，因此其生活品質也受到影響。 過去文獻指出孩童的功能與情境因子與腦性麻痺孩童及其照顧者的生活品質相關。「國際功能、失能與健康分類系統(International Classification of Functioning, Disability and Health, ICF)」涵蓋各種影響人類生活品質的健康相關因子，因此本論文依循ICF統整文獻與臨床觀察之經驗，以統整探討可能影響腦性麻痺孩童及其照顧者生活品質之因子。 目前已有許多文獻探討腦性麻痺孩童生活品質的影響因子，然而這些文獻有以下四項主要限制：(一) 使用一般型問卷(generic questionnaire)，而非特定情況/疾病問卷(condition-specific questionnaire)量測生活品質；(二) 使用的生活品質問卷著眼於孩童的能力與限制，與世界衛生組織(World Health Organization)所定義的生活品質概念不一致；(三) 未以ICF為架構全面性地探討影響腦性麻痹孩童生活品質的影響因子；(四) 部分於文獻與臨床觀察中，可能會影響腦性麻痺孩童生活品質的重要因子未被考量，例如早產、利他行為、家庭因應模式等。 此外，目前僅有五篇文獻探討腦性麻痹孩童照顧者生活品質的影響因子，且有以下三項主要限制：(一) 未以ICF為架構全面性地探討可能影響腦性麻痹孩童照顧者生活品質的孩童相關因子(child characteristics)、照顧者相關因子(caregiver characteristics)，與環境因子；(二) 使用的生活品質問卷著眼於照顧者的生活能力，與世界衛生組織所定義的生活品質概念不一致；(三) 部分文獻使用單變量分析(univariate analysis)，未控制共變數(covariate)可能的影響。因此亟需進一步探討腦性麻痺孩童及其照顧者生活品質之影響因子，以協助臨床工作者有效地改善腦性麻痺孩童及其照顧者的生活品質。 目的：本研究目的為依據ICF，全面性探討腦性麻痺孩童及其照顧者生活品質的影響因子。 方法：研究樣本為來自全台灣幼稚園、小學、腦性麻痺協會，以及台北、台中、高雄之醫療院所轉介之四至十二歲腦性痲痺孩童及其照顧者。本研究分別使用腦性麻痺兒童生活品質問卷(Cerebral Palsy Quality of Life for Children，簡稱CP QOL-Child)照顧者填答版本(proxy-report form)與台灣版世界衛生組織生活品質問卷(World Health Organization Quality of Life-BREF-Taiwan version，簡稱WHOQOL-BREF -TW)分別評量腦性麻痺孩童與其照顧者之生活品質，並依據ICF蒐集影響腦性麻痺孩童及其照顧者的健康狀態(health condition)、身體功能與構造(body functions and structures)、活動與參與(activity and participation)及情境因素(contextual factors) (包含個人因素與環境因素)等變項相關資料，以多元線性迴歸分析(multiple linear regression analysis)來建構影響腦性麻痺孩童及其照顧者生活品質的迴歸模式以確認其影響因子。其中，以CP QOL-Child的七個領域與WHOQOL-BREF-TW的四個領域為依變項，腦性麻痺孩童及其照顧者的健康狀態、身體功能與構造、活動與參與及情境因素等相關變項資料為獨立變項。此外，並以驗證性因素分析(confirmatory factor analysis)確認所使用的CP QOL-Child之建構與避免模式中因子間的共線性(multicollinearity)問題。 結果：共167位腦性痲痺孩童及其照顧者符合本研究取樣條件，且同意參與本研究。腦性麻痺孩童平均年齡為9.06歲(標準差為2.16歲)，男性(56.3%)多於女性。約七成(69.5%)孩童能獨立行走或以手持助行輔具(hand-held mobility devices)行走。孩童的照顧者多為孩童家長(95.8%)，女性(86.2%)較男性多，平均年齡為40.23歲(標準差為5.43歲)。孩童生活品質的七個迴歸模式指出其影響因子包含孩童的健康狀態(腦性麻痺類型、粗動作與精細動作功能嚴重度、其他疾病)、身體功能與構造(行為與情緒、視覺損傷與聽覺損傷)、個人因素(孩童出生序)、環境因素(孩童的學校類型、目前接受的復健醫療服務、家長的年紀、照顧者的精神健康、親職壓力與婚姻狀態、母親國籍、家庭的社經地位、家庭生活衝擊、家庭因應模式與家中是否請幫傭)、孩童的慣用手，及照顧者與孩童的關係。 照顧者生活品質的四個迴歸模式指出其影響因子包含孩童相關因子(年紀、腦性麻痺類型、精細動作功能嚴重度、其他疾病、行為與情緒、視覺損傷與聽覺損傷)、照顧者相關因子(精神健康、親職壓力、婚姻狀態、社經地位)、環境因子(孩童的長期用藥、學校類型與目前接受的復健醫療服務、照顧者配偶年紀、家庭生活衝擊、家庭因應模式，與家中是否請幫傭)。 結論：本研究結果有助於瞭解腦性麻痺孩童與其照顧者生活品質的影響因子，這些因子可列為評估腦性麻痺孩童生活品質的項目，作為臨床工作者擬定介入方案的參考，也可作為醫療、教育、社會福利相關主管單位擬定預防措施之參考，以改善腦性麻痺孩童及其照顧者的生活品質。

Background: Cerebral palsy (CP), the most common cause of long-term disability in children, permanently impairs motor development and restricts daily life and quality of life (QOL). In addition, the long-term and intense care of children with CP is burdensome and impacts negatively on caregivers’ QOL. Children’s functioning and contextual factors have been shown to be correlated with the QOL of children with CP and their caregivers. The International Classification of Functioning, Disability and Health (ICF) encompasses all aspects of human health and health-relevant components of QOL. The ICF serves as a framework to organize these factors influencing the QOL of children with CP and their caregivers in this dissertation. Many studies have investigated the determinants of the QOL in children with CP. However, these studies had four main limitations, as follows: (1) using generic rather than condition-specific QOL measures, (2) adopting QOL measures focusing on a child’s capability or limitations, which is not consistent with the construct of QOL defined by the World Health Organization (WHO), (3) not considering determinants comprehensively from the entire scope of the ICF, and (4) not considering some possible determinants, such as premature birth, prosocial behavior, and family coping patterns. As regards the determinants of QOL of their caregivers, only five studies examined determinants of the QOL of caregivers of children with CP to date. These studies had three main limitations: (1) failure to consider factors comprehensively and simultaneously based on the entire scope of the ICF from the three categories of child characteristics, caregiver characteristic, and environmental factors; (2) using life ability-focus QOL measures and adopting a construct of QOL different from that of the WHO; and (3) using univariate analyses without controlling for the confounding effects of covariates in several studies. Therefore, the determinants of the QOL of children with CP and their caregivers have remained unclear, which hinders intervention planning and QOL improvement. Objective: This dissertation aims to investigate the determinants of QOL of children with CP and their caregivers respectively based on a comprehensive approach with the ICF. Method: Children with CP and their caregivers were recruited if children had a diagnosis of CP and children were aged between 4 and 12 years. QOL of children was assessed by a proxy-report form of the Cerebral Palsy Quality of Life for Children (CP QOL-Child) and QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). In addition, using the ICF, a range of variables were measured as predictors of QOL relating to child’s and caregivers’ health condition, body functions and structures, activity and participation, as well as contextual factors (including personal factors and environmental factors). According to the respective constructs of the CP QOL-Child and WHOQOL-BREF-TW, seven and four multiple regression models were used to identify the predictors of QOL of children with CP and their caregivers respectively. Confirmatory factor analyses were conducted to validate the construct of the CP QOL-Child and to avoid the multicollinearity problem among the predictors. Results: A total of 167 children with CP and their caregivers were recruited. The mean age of the children was 9.06 years (SD: 2.61 years), with more boys (56.3%) than girls. Most children (69.5%) were ambulatory with or without hand-held mobility devices. With regard to caregivers, most caregivers were parents of the children (95.8%), with more females (86.2%) than males. The mean age of the caregivers was 40.24 years (SD: 5.43 years). Seven multiple regression models showed that determinants of the QOL of children with CP were as follows: child’s health condition (type of CP, gross and fine motor impairment, other diseases), body functions and structures (behavior and emotions, visual impairment and hearing impairment), personal factors (child’s birth order), environmental factors (child’s school setting, current rehabilitation services, and parents’ age, caregiver’s general mental health, parenting stress, and marital status, mother’s nationality, socioeconomic status, family life impacts, family coping patterns, domestic helper), child’s hand preference and caregiver’s relationship with child. Four multiple regression models revealed that the determinants of QOL of caregivers of children with CP encompassed child characteristics (age, type of CP, fine motor impairment, other diseases, behavior and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, and socioeconomic status), environmental factors (child’s medication, school setting, and current rehabilitation service, caregiver’s spouse’s age, family life impacts, family coping patterns, and domestic helper). Conclusion: Knowledge of the determinants of QOL identified in the two studies in this dissertation could serve as a guide in a holistic approach to evaluation and intervention to help clinicians to plan intervention and educational programs targeted at these determinants to improve the QOL of children with CP and that of their caregivers.