Abstract

This interpretative phenomenological analysis (IPA) explored the lived experiences of parents raising children with disabilities in American Samoa. Five participants across two focus groups shared their perspectives on navigating educational, healthcare, and community systems while supporting their children with disabilities. Using the fonofale model as a cultural framework, the study incorporated culturally responsive methodology including card sort activities to facilitate dialogue on potentially sensitive topics. Analysis followed the Nizza et al. (2021) IPA approach, progressing from exploratory notes to experiential statements, clustered themes, and finally overarching themes. Findings revealed four major themes: systemic burden on parents, structural and service gaps, cultural conflict and educational inflexibility, and vision for empowered and inclusive systems. Parents described experiences of isolation when community educators and leaders misinterpreted disability-related behaviors as poor parenting, while simultaneously developing expertise that could improve systems. The study highlighted how their current realities undermine the holistic well-being of parents and families in American Samoa. Findings also identified parent solutions that are grounded in cultural values found in the fonofale model and emphasize their hopes and suggestions for local systems for increased access to inclusive and responsive services. Trustworthiness was established through Lincoln and Guba's (1985) criteria and Tracy's (2024) concepts of provocative generalizability and thick description. Findings suggest the critical importance of culturally responsive disability support systems and the untapped potential of parental expertise in developing more effective services for children with disabilities in American Samoa and similar Pacific Islander communities.

Degree

EdS

College and Department

David O. McKay School of Education; Counseling Psychology and Special Education

Rights

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