"We're Trapped": Maternal Well-Being and Caregiving for Children With Developmental Disabilities in American Samoa

Mothers raising children with developmental disabilities in American Samoa navigate caregiving within fa'a Samoa (the Samoan way of life), where family, culture, and spirituality are deeply intertwined. Yet, the lived experiences of these mothers remain largely undocumented. This study explored how mothers make meaning of caregiving and its implications for holistic well-being within this unique cultural and geographic context. Using interpretative phenomenological analysis with culturally congruent focus group methods, 15 mothers participated across three focus groups. Data were interpreted through the Fonofale model, a Pacific framework conceptualizing well-being through interconnected cultural, spiritual, physical, mental, and familial dimensions. Two superordinate themes emerged: (a) impossible choices between inadequate on-island services and family-fragmenting off-island care and (b) painful tensions between cultural expectations of obedience and children's disability-related behaviors, often leading to stigma and isolation. Across both themes, mothers described strain across every dimension of the Fonofale, revealing caregiving as a totalizing experience affecting cultural belonging, family integrity, spiritual life, and emotional well-being. Findings highlight the need for culturally embedded developmental disability supports that strengthen rather than fracture Pacific family and community systems.