“We’re Trapped”
Maternal Well-Being and Caregiving for Children With Developmental Disabilities in American Samoa
Bibliographic Data
| ID | 24228946 |
|---|---|
| Authors | Elizabeth A Cutrer‐Párraga (0000-0001-8038-1752, Brigham Young University), Sara Ditto (Brigham Young University), Lorena Seu (Connections-The Learning Resource), Isabel Medina Hull (0009-0002-6961-9525, Alpine School District), G E Kawika Allen (0000-0002-0009-8170, Brigham Young University), Rebecca R Winters (Brigham Young University), Ofa Hafoka Kanuch (0000-0002-7464-0479, Brigham Young University), Cameron Hee (Brigham Young University), Melia Fonoimoana Garrett (Nebo School District), Kristofer J Urbina (Brigham Young University) |
| Year | 2026 |
| Pages | 10497323261479883-10497323261479883 |
| Publication date | 2026-10-14 |
| Open Access | No |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/10497323261479883 |
| PMID | 42875017 |
| OpenAlex | W7221775381 |
| Language | EN |
| References cited | 42 |
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.
American samoa · caregiving · cultural belonging · cultural stigma · Developmental disabilities · Emotional well-being · family fragmentation · maternal well-being · mothers of children with disabilities · Samoan culture · spiritual well-being · Disability Rights and Representation · Family and Disability Support Research · Family Caregiving in Mental Illness
Interpretative phenomenological analysis.
The Evolution of Discipline Practices
Naturalistic Developmental Behavioral Interventions
Ole Taeao Afua, the New Morning
Purposive sampling
The Impossible Subject
Culture-Centered Psychotherapy Preferences for Polynesian Americans
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Mirrors for Pacific Islander Children
Reflexivity Across the Research Process
Developing an Interpretative Phenomenological Approach to Focus Group Data
Reflecting on the Use of IPA with Focus Groups
Factors contributing to the implementation of inclusive education in Pacific Island countries
Reconceptualising inclusive education in the Pacific
Native Hawaiians and psychology
O le tagata ma lona aiga, o le tagata ma lona fa’asinomaga (Every person belongs to a family and every family belongs to a person)
Causal Attributions for Problematic Family Interactions
Hub and Spokes in Intellectual Disability Mental Health Support
Positioning Positionality and Reflecting on Reflexivity
Sample Size in Qualitative Interview Studies
An Interpretative Phenomenological Analysis That Seeks to Describe and Understand the Personal Experience of Burnout in General Practitioners
Should Interpretative Phenomenological Analysis (IPA) be Used With Focus Groups? Navigating the Bumpy Road of 'Iterative Loops,' Idiographic Journeys, and 'Phenomenological Bridges
Culturally Responsive Focus Groups
| Highly cited | No |
|---|