Navigating the Cocoon: An Interpretative Phenomenological Analysis of 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 2600 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 intensified by oceanic isolation, territorial governance, and colonial history. Data were collected through three focus groups with fifteen mothers whose children hold a range of disability diagnoses, with a card sort activity at the outset of each session serving as an idiographic anchor to protect individual voice within the group format. Analysis followed Interpretative Phenomenological Analysis adapted for focus groups (IPA-FG), proceeding from line-by-line exploratory noting through Personal Experiential Themes and Group Experiential Themes within each focus group case to cross-case convergence and divergence analysis, interpreted through the Fonofale model of Pacific wellness. 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 the 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 suggest how workforce shortages and geographic isolation create conditions in which maternal advocacy becomes a systems-level necessity rather than a personal choice. Implications for rural education policy, IDEA implementation in U.S. territories, and culturally grounded family support are discussed.