罕見疾患的家庭壓力因應與需求──以高雄市為例

Stressors Coping and Needs of the Families with Rare Disorders

本研究採質性研究，進行半結構訪談，以設籍於高雄市，且領有罕病身心障礙手冊及其家人為對象，共21個罕病家庭36人完成訪談，旨在探討罕見疾病家庭的壓力因應與需求。研究過程，研究團隊維持中立並遵守研究倫理，以維護受訪者權益與確保訪談資料的真實性。資料分析依序進行編碼、概念化、建構類別、信度分析與效度檢核等，獲致研究的重要結論包括：首先，罕病家庭最大壓力來自照護患者，期望社福制度放寬照護限制，並提供臨時托育的喘息服務。其次，影響家庭生態系統，如生育計畫、經濟平衡與家人關係，若家庭成員能夠互相扶持與共同分擔，不僅可以維繫家庭和諧，亦能共同解決問題。第三，適當的社會比較有助於罕病家庭的壓力紓解，若能透過媒體報導，增進社會大眾的瞭解程度，應有助於罕病家庭建立正向的社會互動。第四，罕見疾病的異質性高、診療不易，常伴隨復健需求，故罕病家庭期待得到更好的醫療服務品質，希望政府鼓勵專業研發來提升醫療效果，並在診治過程受到尊重。另外，期望在教育、就業與安養，能獲得整合服務，並呼籲政府「建立有尊嚴的照護制度」。總之，罕病家庭亟需社會大眾、社會福利、醫療與教育等單位及政策規劃者的深層同理與關懷，妥善規劃罕病家庭支持系統並能提供整合性的安置服務，應是最迫切需求。

This current study aims to survey the stress coping and needs of families with rare disorder patients. Using qualitative methodology, semi-structured interviews were conducted with 36 family and patients from 21 families with rare disorder patients in Kaohsiung City. The research team maintains neutrality and adheres to the ethical standard during the data collecting process to protect the interviewees' rights and confidentiality while ensuring the authenticity of the content. Interview data were coded, conceptualized, categorized, and checked for reliability and validity. The study concluded that the biggest stressor of the families with rare disorder patients comes from caring for the patient. Families hope that social welfare policy can be more adaptable and can provide respite services, such as temporary care release, for the family. Second, family ecological system was impacted. Family burden from caring would be lessened if family events, such as having new baby, balancing family finances, and maintaining family relationships, could be shared among family members. Third, increasing social acceptance and acknowledgment of rare disorders through education via mass media would help relieve family stress. Fourth, patients with rare disorders often need alternative treatment and rehabilitative needs. These families hope for improved neath care quality, more governement resrouces for research to enhance treatment efficacy, and more respect and empathy in the treatment process. In all, families with rare disorder patients expect a more coordinated plan that addresses patients' education, career, and health care needs. They call for the government to establish a more respectful health care system as these patients need more social acceptance as well as more empathic care from people and policy makers in the social welfare, education, and medical systems.