[[alternative]]The Change of Functional Status, Psychological Distress, Sense of Coherence and Caregiver Burden in Patient with First-Time Stroke: A Longitudinal Study

[[abstract]]由於醫療照護品質的進步，腦血管疾病的死亡率有下降的趨勢，但隨著人口老化，其盛行率及中風存活者人數則大幅提升，疾病所伴隨而來的失能與後遺症，不僅影響日常生活功能，造成心理困擾，更影響生活適應情形，後續長期照護問題，亦成為社會及醫療保健系統重大負擔。本研究目的主要是，探討研究對象初次腦中風病人診斷六個月內之身體功能恢復與照顧者負荷和生活適之變化趨勢和軌跡類型與相關因素。研究對象來源為北區某所醫學中心之初次腦中風病人與其主要照顧者，以方便取樣方式共收集101對，採縱貫性研究法，收集資料的時間點分別為病人發病一週內(T1)、發病後一個月(T2)、三個月(T3)及六個月(T4)，共有四個時間點。過程中，同時收集病人與主要照顧者之資料，前兩個時間點在病房進行訪談，後三個時間點是至個案居家住所進行訪視。資料收集採用量表調查法，研究工具包括人口學基本資料、腦中風病人功能狀態、心理困擾、生活適應及照顧者負荷量表，資料分析運用廣義估計模式進行發展趨勢與相關因素探討，並以潛在成長模式進行軌跡類別之分析。研究結果顯示，腦中風病人與照顧者於診斷後六個月期間，病人身體功能恢復隨時間整體平均明顯進步，生活適應變化趨勢並未受時間有所影響。具有多樣性變化，其功能復原軌跡分為三種類別「低功能緩慢復原」佔28.7%、「低功能快速復原」佔36.6%、「高功能持平復原」佔34.7%，相對於「高功能持平復原」組，成為「低功能緩慢復原組」軌跡組之相關因素：教育程度、中風疾病嚴重度與中風危險因子數，成為「低功能快速復原」軌跡組之相關因素：復健及生活適應力。就照顧者而言，負荷隨時間平均分數有逐漸下降趨勢，生活適應則隨時間逐漸增加。針對照顧者負荷可分為三種軌跡類別「低負荷」佔44.6%、「中度負荷」佔39.6%及「高度負荷」佔15.8%。軌跡組以「高度負荷」軌跡為參考組，發現男性、低焦慮且病人身體功能復原較好者容易發展為「低負荷」軌跡組。照顧者無配偶且低焦慮者則容易歸屬在「中度負荷」軌跡組，顯示發病初期高焦慮情緒是引發照顧者高負荷感受之重要因素。在動態變項中，憂鬱是影響功能復原軌跡發展的阻力；焦慮及社會支持是影響病人生活適應的助力。而焦慮是同步影響照顧者負荷起始狀態與軌跡發展的危險因子；焦慮和憂鬱則是影響照顧者生活適應之助力與阻力。最後，以雙軌跡模式驗證病人身體功能復原與照顧負荷感受度之間的因果關係，從病人身體功能狀復原佳可預測照顧者負荷程度偏低，但照顧者負荷高不一定是照顧功能復原不佳的病人，顯示照顧者負荷概念為多面向樣貌。本研究重要發現有助於臨床護理人員瞭解初次腦中風病人在疾病復原歷程中，因著起始點與動態因素的影響有不同復原軌跡發展，而隨著病人功能復原狀態不同，照顧者亦有不同的負荷程度表現，兩者是共存與彼此牽動的關係。因此，對於透過如何增進病人復原成效、減少照顧者負荷與增加他們生活適應力是極為重要的。建議未來的臨床照顧實務，應強化病人和照顧者為中心的照護模式，以家庭為單位，評估家庭功能與關係，提供他們更多的協助與資源；並納入照顧者的能力評估，了解照顧者需求，以提供早期及持續性的協助；針對出院病人與照顧者，提供完整的出院準備計畫，包括病程進展、復原歷程可能面對問題、預防中風復發、照顧技巧、輔具使用與社會福利資源等內容，讓照顧者有充分時間學習；提供病人與照顧者問題解決技巧和因應能力課程，以及情緒與靈性支持，讓他們更具信心與能力面對不同時期的挑戰，在生命歷程中找尋意義；最後，建立病人和照顧者與醫療人員之間良好的溝通管道，將他們視為照顧團隊伴伙之一，藉由他們的回饋與建議，能提供最佳的照護與服務品質。[[abstract]]As the quality of medical care advances, the mortality rate of cerebrovascular disease has a downward trend, but with the aging population, the prevalence and the number of stroke survivors increased significantly. The disability and complications of the stroke not only affect the daily living activity and psychological distress, but also affect the ability of adaptation to life, become a long-term care problems, and be a major social and health care system burden.The purposes of this study were: 1. to explore the 6th month growth trend and trajec-tory types of the physical function recovery, caregiver burden, and life adaption of the first diagnosed stroke patients; 2. to examine the factors that predict the growth trend, trajectory types of the physical function recovery, caregiver burden, and life adaption of the first diagnosed stroke patients. A longitudinal design with convince sampling was conducted to recruit fist-time stroke patients and main caregivers from one medical center of northern Taiwan. Data were collected at four time points after stroke: T1(1-7 days)、T2(4-6 weeks)、T3( 12-14 weeks) and T4(24-26 weeks). Information of patient and main caregiver were also collected in two ways: 1. In ward interview: T1 and T2; 2. In patient house interview: T2, T3 and T4. The researcher conducted data collection using 5 structured questionnaires: the patient demographics data, functional status, psychological distress, sense of coherence and caregiver burden. The Generalized Estimating Equation (GEE) was used to explore the trend of development and related factors of dependent variables. And then, Latent Class Growth Analysis (LCGA) was conducted to analyze the trajectory types.The results shows the average physical function of stroke patients and caregivers improved significantly within 6 months after stroke, but the trend of life adaption were not affected as time went, the trajectory of functional recovery can be classified into three types: “low-performance and slowly recovery” about28.7%, “low-performance and rapidly recovery” about36.6% and “high-performance and flat recovery” about34.7%. In contract with the group of “high-performance and flat recovery”, factors lead to “low-performance and slowly recovery” group were education, severity of stroke and amount of risk factors of stroke. Factors lead to “low-performance and rapidly recovery” group were rehabilitation and life adaption. For caregivers, the average score of burden decreased and life adaption increased as time went. The trajectory of caregiver burden can be classified into three types: low burden (44.6%), moderate burden(39.6% )and high burden(15.8%). High burden group as reference group, caregivers who were male, low anxiety and good physical function recovery were easier to become low burden group, while caregivers without spouse and low anxiety were tend to become moderate burden group, which means high anxiety was an important factor to induce caregiver high burden in the stroke patient’s early stage. Depression will against the development of functional recovery, anxiety and social support will be helpful to life adaption among stroke patient. Anxiety was the factor affects both of caregiver burden and trajectory development. Anxiety and depression were factors bring positive and negative affect to caregiver’s life adaption. Dual trajectory model was used to verify the cause and effect between the recovery of stroke patient’s physical function and caregiver burden. Low caregiver burden can be estimated from good recovery of physical function, but high caregiver burden will not fully caused by bad recovery of physical function, which shows the various domain of caregiver burden. Findings of this study will help clinical nurses to understand the different recovery trajectory development caused by the starting point and dynamic factors in the process of disease recovery among first diagnosed stroke patients, and different caregiver burden performance follow with various physical function recovery of stroke patients, the two are coexistence and affect each other. Therefore, it is extremely important to reduce the burden on caregivers and increase their resilience to life by improving patient recovery outcomes. Recommendations for future clinical care practices should be to strengthen patient and caregiver-centered care models, family-based assessment of family functions and relationships, to provide them with more assistance and resources, to assess the ability of caregiver, to understand caregiver needs, and to provide early and sustained assistance. Provide a complete discharge preparation plan for discharged patients and caregivers, including progression of the disease, possible recovery problems, preventing of stroke recurrence, caregiving skills, accessory aids and social welfare resources. Allow caregivers to have sufficient time to learn. Provide patient and caregiver problem-solving skills and coping skills courses, as well as emotional and spiritual support, so that they have more confidence and ability to face the challenges of different periods, and to find meaning in the life course. Finally, establish a good communication channel between the patients, the caregiver and the medical professional staff, treating them as one of the care team, and with their feedback and advice, can provide the best care and service