Navigating the Cocoon: Mothers’ Experiences of Seeking Diagnosis and Services for Children with Disabilities in Insular Rural American Samoa

This study examines how mothers raising children with disabilities in American Samoa experience the processes of seeking diagnosis, navigating special education, and advocating for services within an insular rural context. American Samoa, an unincorporated U.S. territory located 2,600 miles from Hawaiʻi with a population under 50,000, represents a case of what we term insular rurality—a condition in which the structural disadvantages of rurality are amplified by oceanic isolation, territorial governance, and colonial history. Drawing on Interpretative Phenomenological Analysis adapted for culturally grounded focus groups and interpreted through the Fonofale model of Pacific wellness, we center the voices of 15 mothers whose children hold a range of disability diagnoses. Findings reveal two overarching themes: systemic invalidation, in which mothers encountered deficit-based assumptions, stagnant educational goals, and institutional disengagement; and parent peer support as primary infrastructure, in which mothers became de facto experts, built community-driven solutions, and envisioned more inclusive futures. Technology emerged as a contradictory force—valuable for parent learning but largely ineffective for children’s remote therapy. These findings spotlight how workforce shortages, and geographic isolation create conditions in which maternal advocacy becomes a structural necessity rather than a personal choice. Implications for rural education policy, IDEA implementation in U.S. territories, and culturally grounded family support are discussed.