A Multiple-Stakeholder Perspective of Patient–Provider Communication Among Families With Rare Diseases in Taiwan Through a Cross-Cultural Lens

Jinli Wu, Hsinyi Hsiao, Lei Chen, Chun-Ying Weng, Pao-Sheng Chang, Shao-Yin Chu


Using a cultural lens and engaging all stakeholders’ perspectives (e.g., patients, family caregivers, and health care and community providers), this study aimed to understand risk factors that hinder effective patient–provider communication (PPC) among families experiencing rare diseases in Taiwan. Findings from five focus group discussions with 40 participants recruited using purposive sampling suggest various risk factors related to effective PPC, including high regard for authority, face-saving communication, keeping harmonious relationships with providers, low socioeconomic status, patients’ and caregivers’ limited disease literacy, symptom-oriented communication habits, limited channels for timely PPC, discordant information from different sources, forgetting to keep daily records of the disease, and confusion about seeking specialists’ assistance. Families with rare diseases in Asian communities would benefit from culturally tailored services and educational programs to enhance their disease-specific health literacy, motivation, engagement, and communication skills. Structural barriers could be tackled by providing integrated care coordinating cross-departmental communication between medical and social services.


patient–provider communication, rare diseases, culture, focus group, qualitative research

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