類風濕性關節炎病人生病知情與疾病適應之探究

Disease cognition and adaptation in patients with rheumatoid arthritis

目標：類風濕性關節炎是病因不明的自體免疫疾病，國人盛行率約0.4%，發病年齡在30-50歲之間。女性發生率與盛行率高於男性，男性死亡率高於女性。只能控制病情難以治癒。本研究目的在瞭解類風濕性關節炎病人從症狀出現、疾病診斷到治療的經歷，探究病人生病後的社會心理歷程及適應經驗。方法：採質性研究焦點團體訪談收集資料，招募31位類風濕性關節炎病人，以半結構訪談大綱進行6個焦點團體，並將訪談資料轉成逐字稿進行內容分析。結果：疾病歷程分四面向：1.對於疾病症狀的忽視、忍耐等導致延遲診斷治療使病人處於混亂狀態；2.治療中病人長期面對疼痛、關節變形等壓力；3.病人因疾病難以解釋承受病恥感；4.病人需學習帶病生活重拾身心平衡。結論：本研究發現類風濕性關節炎病人若能自我寬容、重塑生活秩序與自我意識有較佳疾病適應。建議醫療體系於免疫系統疾病診斷與治療提供整合性服務，醫院社工師宜主動關懷病人，以個案管理輔助病人自我疾病照護與連結社會支持。

Objectives: Rheumatoid arthritis (RA) is a chronic, progressive inflammatory autoimmune disease with unknown etiology. Its prevalence in the Taiwanese population is approximately 0.4%. RA primarily affects individuals aged 30–50 years. The incidence and prevalence of RA are higher in women than in men. Although RA cannot be cured, it can be managed and controlled. This qualitative study explored disease awareness and adaptation in patients with RA. Their subjective perspectives and psychological adjustment needs were assessed to enhance well-being and quality of life. Methods: Six focus groups were conducted with patients with RA (N=31). The focus groups were guided by a semistructured interview framework. The discussions were audio-recorded, transcribed verbatim, and subjected to content analysis to identify key themes and insights. Results: Content analysis revealed four distinct phases: initial symptom manifestation, characterized by confusion and delayed diagnosis; ongoing treatment, characterized by pain, deformities, and distress; stigma and self-deconstruction arising from unexplained symptoms; and eventual adaptation through attitude adjustments, disease acceptance, and increased social participation. Disease adaptation facilitated coexistence with the condition. Conclusions: Disease adjustment, self-compassion, and identity reconstruction play key roles in adapting to RA. We recommend integrating multidisciplinary health-care resources to provide comprehensive care, encouraging active involvement of hospital social workers in addressing patients’psychosocial needs, and establishing a case management system to enhance patients’self-management skills and access to essential social support services.