Abstract: TH-PO0975
Understanding the Cultural Influences and Care Barriers Affecting Asian Americans and Pacific Islanders Living with IgAN
Session Information
- Diversity and Equity in Kidney Health
November 06, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Diversity and Equity in Kidney Health
- 900 Diversity and Equity in Kidney Health
Authors
- Chen, Kelly B., Stanford Health Care Corporation, Palo Alto, California, United States
- Crowe, Amanda, IgA Nephropathy Foundation, Wall, New Jersey, United States
Group or Team Name
- IgAN Foundation AAPI Team.
Background
IgA Nephropathy (IgAN) disproportionately affects people of Asian descent, with studies suggesting that Asians may account for up to one-third of new diagnoses. Despite this elevated prevalence and a general lack of awareness about IgAN, little research has examined the unmet needs and the cultural and healthcare-related challenges faced by Asian American and Pacific Islander (AAPI) individuals with IgAN in the United States. This, in turn, leaves many patients without accessible, culturally relevant resources.
Methods
The IgA Nephropathy Foundation conducted qualitative research through a series of focus groups and one-on-one interviews with 19 AAPI adults diagnosed with IgAN. Participants were recruited through nephrology clinics affiliated with four major academic medical centers located in regions with high AAPI population densities. Inclusion criteria included self-identifying as AAPI, US residency, English proficiency, and a confirmed IgAN diagnosis. Data were analyzed thematically to identify key cultural, emotional, and systemic challenges in the IgAN patient journey.
Results
Participants reported challenges commonly associated with IgAN, such as delays in diagnosis and uncertainty about disease progression. However, several barriers were unique to their AAPI background. Key themes included reluctance to disclose illness due to cultural stigma, tension between traditional eastern remedies and western medical guidance, difficulty accessing culturally appropriate, kidney-friendly dietary guidance. Some participants also delayed treatment due to family expectations or mistrust of the US healthcare system. Although all participants had health insurance, few had access to culturally competent nephrologists. Participants identified peer support groups and advocacy organizations as key sources of emotional support and education.
Conclusion
AAPI individuals living with IgAN face a distinct set of cultural and structural barriers that impact early detection, disease prognosis, and treatment decisions. To address these disparities, we need more culturally sensitive education, provider training in cross-cultural care, and stronger representation of AAPI voices in nephrology care and advocacy.
Funding
- Private Foundation Support