[[alternative]]To Explore Lived Experience And Spiritual Well-Being Of Patients With Rheumatoid Arthritis

[[abstract]] 類風濕性關節炎是一罹病時間長、病理變化不可逆、可能進展成關節變形造成殘障的疾病，對有些患者而言，疾病將帶來生活上的巨變，影響擴及身、心、靈各層面，協助重建病患之身心靈以能提升病患的生活品質是一重要的議題。 本研究的目的一為以質性研究初探台灣類風濕性關節炎患者之生活經驗。二為以質性統合分析探討類風濕性關節炎患者之靈性安適。三為以量性研究探討影響類風濕性關節炎患者靈性安適之因素。對應前述三個目的，研究設計分三部份，第一部份採現象學研究法，以立意取樣訪談病友會病患共21名，瞭解其罹病之生活經驗。第二部份以質性統合分析方式，整合現有與類風濕性關節炎「靈性安適」有關之質性研究文獻。第三部份採量性研究法，依據前二部份之研究結果，提出影響靈性安適之假說加以驗證，採橫斷性設計，方便取樣於病友會病患及北部一家醫學中心二處門診進行問卷的填寫或訪談，共回收223名有效問卷。研究工具包括史丹佛健康問卷評估、多層次健康重心量表、Jalowiec因應策略量表、社會支持量表、FACIT靈性安適量表等。 研究結果，第一部份類風濕性關節炎病患之生活經驗，共呈現四個主題，「承受身心的磨難」、「對病因的疑惑」、「挫折的求醫經驗」呈現了病患因疾病所帶來的身、心、靈個層面的衝擊，「克服疾病的挑戰」呈現出病患適應疾病的助力、態度與策略。第二部份質性研究之統合分析類風濕性關節炎病患之靈性安適，呈現病患靈性安適的四個特質，需有「與疾病共存」之覺知，藉由「重構情境」、「增長勇氣」以能「重掌控制」。第三部份病患靈性安適相關因素探討，共測試七個概念，社會人口學變項、疾病影響狀況、宗教信仰、控制信念、社會支持、因應策略與靈性安適；結果顯示靈性安適未因宗教信仰及性別而有差異；沒有經濟壓力者、傾向採取問題因應策略、社會支持越佳、傾向內在控制、醫師控制者，靈性安適越佳，而其中問題因應策略更扮演重要的中介角色。此外，日常生活功能越差者及越疼痛者，越無法感到「內在控制」及較少使用問題導向策略，而疼痛也直接衝擊靈性安適，使病患更傾向使用情緒導向因應策略，而透過宗教信仰與社會支持能增進其靈性安適。 根據本研究研究結果，能協助醫護人員了解類風濕性關節炎患者疾病所帶給病患的是整體的狀態改變，在病患調適的歷程中，應協助投注靈性力量，包括疾病照護的知識，解決日常生活問題的技巧，也應含括評估家庭互動的狀況，以營造協助病患的有利環境，而病患適應的評估應納入靈性的內涵特質。[[abstract]] Rheumatoid arthritis (RA) is a disease which is chronic, and whose pathological change has been irreversible, and which may cause joint deformation, leading to physical disabilities. Although this disease is without any immediate life threat, to some patients it may cause a drastic change in life, influencing their body, mind, and spirit. Therefore, it is an important subject to help reconstruct the patients’ body, mind, and spirit to elevate their life quality. The purposes of this study were as follows. 1. The qualitative research was used to initially explore the lived experiences of Taiwanese RA patients. 2. The qualitative meta-synthesis analysis was employed to understand the spiritual well-being of RA patients. 3. The quantitative research was used to analyze the spiritual well-being of Taiwanese RA patients, researching the related factors that influence spiritual well-being. The research design was divided into three parts. First, adopting the phenomenological approach, we use a purposive sampling to interview 21 patients belonging to a national aid group association of RA patients in order to explore the lived experience. Second, the qualitative meta-synthesis method was used to integrate the published studies that were related to the RA spiritual well-being. The third part adopted the quantitative method, based on the findings of the first two parts to propose and confirm the factors that related to spiritual well-being. The cross-section design was adopted for the convenience of sampling the patients in the national aid group of RA patients and two clinics of a northern medical center. The participants were invited to answer the questionnaires or to be interviewed. Participants were 223 patients of RA who completed the HAQ, the Multidimentional Health Locus of Control Scales, the Jalowiec Coping Scale, the ISEL, and the FACIT-Sp. According to the result of this study, the first part of RA lived experiences manifested four themes: “suffering of body and mind”, “doubting about the cause of disease”, and “feeling frustration when seeking treatment” these three themes presented how the illness influenced the patient’s body, mind, and spirit. Additionally, the fourth theme “coping with the challenge of the illness”, presented the help, attitude, and strategy the patient has while adapting to the illness. In the second part, the meta-analysis of the qualitative research presented four characteristics of the spiritual well-being of RA patients. There were, they needed to have the awareness of “living with disease.” And by “reframing the situation,” and “bolstering courage,” they could “reclaim control.” In the third part, we tested seven concepts, the demographic characteristic, disease status, religious belief, health control faith, social support, coping strategy and the spiritual well-being. Result demonstrated that spiritual well-being was not significant difference with religious belief and gender. RA patients who had lower stress in economics, tendency to adopt problem-oriented strategies, with better social support, tendency internal control, doctor control, who with better spiritual well-being. The problem-oriented strategy acts the important intermediary role in all factors. In addition, patients who had worse function of daily activities and physical pain, had more difficult to feel “the internal control” and to use the problem-oriented strategies. Problem oriented strategies and social support could directly enhance the spiritual well-being. Via the problem-oriented strategies, the function of daily activities, pain, social support, doctors’ control, and internal control can improve and enhance the spiritual well-being. Pain directly influences the spiritual well-being, making patients more inclined to employ affective-oriented strategies, which could enhance spiritual well-being through religious faith and social support. The result of this study can help medical and nursing staff to understand that the RA disease makes the whole condition of the patient changed. When the patient seeks to adapt to the illness, they should help with spiritual power including knowledge of caring for the illness, the skills of solving the problems confronted in everyday life, and evaluation of the interaction in a family. In this way, the advantageous surroundings can be created to help the patient. And evaluation of how the patient adapts to the illness should be included in the characteristics of the contents of the spiritual well-being