成人中重度腦性麻痺患者之家庭照顧經驗探討

研究背景：腦性麻痺(Cerebral Palsy)為孩童常見的動作發展疾患，然而隨著公共衛生的進步及醫療技術的發展，腦性麻痺者大部分都會長至成人階段，其兒童時期在動作功能、認知或感覺功能上的障礙，至成人階段可能會衍伸在肌肉骨骼變形、疼痛、疲乏等問題，進而造成日常生活自理依賴或活動受限，也可能因為認知或溝通功能上的障礙而影響社會參與，尤其是肢體障礙程度嚴重之腦性麻痺者，粗大動作分類系統(Gross Motor Function Classification System, GMFCS) III-V級者，家庭照顧者自其幼年時期就投入沉重的照顧工作，至成人階段此族群在功能上的改變可能會導致照顧需求更加複雜進而影響照顧者之生活品質，然而國內尚沒有關於此族群照顧者之相關研究。研究目的：瞭解成人中重度腦性麻痺者之家庭照顧經驗，作為提供實務工作及後續研究發展之方向參考。方法：使用質性研究之以紮根理論(grounded theory)為主要研究方法，透過理論取樣四位成人中重度腦性麻痺之主要照顧者參與研究，使用一對一半結構式深入訪談及觀察方式搜集照顧經驗之資料，後續使用紮根理論之開放編碼、主軸編碼及選擇編碼為主要分析方式，並使用三角查證法、參與研究者審核及省思日誌三種方式來提昇研究的嚴謹程度。研究結果：成人中重度腦性麻痺之照顧經驗共有四個核心範疇，包含：先備經驗的塑形、兼顧不同的職能角色、外界資源的灌注、以及照顧歷程的調整與平衡。整體照顧經驗模式示意為—一朵向日葵花的成長、先備經驗如同種子具有與生俱來特質，每個照護家庭如同孕育花朵的土壤，但腦性麻痺者在發芽成長過程中較多土中石頭限制（成長過程艱辛），照顧者也需同時關注莖葉的長成（其他職能角色），成長過程中受到陽光（同儕支持團體）、雨水（社會福利）、及肥料（照護專業）之灌溉而生長。這些因素對照顧經驗成長的影響是動態且持續的；照顧歷程雖曲折且艱辛，但最終能開花，意指照顧經驗在歷經許多磨難與妥協後，獲得平衡與收穫，照顧者體悟到正向經驗與成就感，然而在面對未來照顧者老化的照顧議題，如同花凋謝之後的去向，對照顧者而言是一個仍未知的未來。結論：成人中重度腦性麻痺者之家庭照顧經驗是一個多元、動態、個別化且不斷改變的過程，對於照顧者來說需要經過許多的妥協和調整才能達到一個平衡的狀態，因此無論實務工作、未來相關研究或介入策略的發展都需要更為著重以家庭為中心的思考方式，並且從長期的觀點來思考切實的照護目標及整體服務策略，以使照顧者在腦性麻痺者成長過程中，減少掙扎與負荷，使二者能更享有自主而安適的生活品質。

關鍵字

腦性麻痺；成人中重度腦性麻痺者；照顧經驗；紮根理論

並列摘要

Introduction Cerebral Palsy (CP) is a common major disabling disorder in childhood. Due to the progressing of public health and medical techniques, most of the CP will live up to adulthood. Moreover, the disability of motor, cognitive and sensory function in CP children may increase the dependence of activity of daily living due to musculoskeletal deformation, chronic pain and fatigue in adulthood. Lack of cognitive function and communication skills of CP, especially those with moderate to severe motor disabilities (The Gross Motor Function Classification System, GMFCS, level III-V), may also cause poor social participation which is important in adolescence and adult CP. The caregivers of CP, usually their parents, may encounter more caring complexity and feel overwhelmed as their children grow up, hence lead to their unsatisfactory quality of life. However, the current researches in caring experience of caregivers of CP adults are limited in Taiwan. Objective To explore the caring experience of caregivers of adults with moderate to severe CP and provide guidance for future clinical health professions cares and further researches. Methods This research was based on qualitative methodology and using the Grounded Theory approach. Theoretical sampling was used to recruit 4 caregivers of adult of moderate to severe CP. The data were collected by individual semi-structured in-depth interviews and observation; analyzed by open coding, axial coding and selective coding. Triangulation, participant review and self-reflexivity note were used to improve the credibility of the research. Results The caring experience mode of adult with moderate to severe CP was described as the thriving of a sunflower. Four core themes categorized from interviews were: Formation of predisposing elements, The management of occupational roles, Social support, and the adjustment and balance between caregivers’ life quality and caregiving process. . Caring experience was compared to the bloom sunflower. . The predisposing elements were the seeds born with their unique nature and the family environment was the soil nourishing the whole flower. Moreover, the challenges and obstacles accompanied by the growth of CP were like the stones in the soil that may discourage the growth of sunflower. The caregiver of CP have to manage their other occupational roles simultaneously like the plant also needs to sustain its steam and leaves. The social support, including peer groups, social welfare and health professionals were vital for caregiver by providing the important information of caring works like the sunflower needs the sun, rain and fertilizer to grow. The impact of these factors on the caring experience was dynamic and continuous. A balanced life of caring indicates the balance between the frustration and the sense of accomplishment derived from the caring experience. Although this balance of caring life may not be the best quality of life for caregivers, it may represent as the most ideal caring experience like the sunflower looks imperfect but still blossom. The caring experience in CP adulthood may reach a balance status via a long period of compromise and adjustment, like the bending but balance steam of sunflower. However, the future aging issue of caregiver of CP adult were still unknown, as the unclear future when sunflower have withered away. Conclusion The caring experience of caregiver of adult with moderate to severe CP is a diversified, dynamic and constantly changing process. The balance status of the period of caring CP adult may undergo the process of ongoing adjustment and compromise, thus the clinical practice and future research need to emphasize on family-centered approach and lifelong perspective for providing the demanding service and policy development. Therefore, the caregiver would reduce the struggle and burden as CP growth and increase the quality of life of both of them.