Graduation Year
2026
Document Type
Capstone Project
Research Type
Qualitative
Degree Name
Doctor of Occupational Therapy
Department
Occupational Therapy
Program Chair
Kitsum Li, OTD, OTR/L, CSRS
Faculty Mentor
Laura Greiss Hess, PhD, OTR/L
Content Expert
Meghan Wentzel, OTD, MA, OTR/L
Site Mentor
Kellie Davis, MOT, OTR/L
Community Partner
Little Hands
Abstract
Abstract
Background: Caregivers of children with neurodevelopmental disorders or developmental differences often experience increased rates of stress, systemic barriers, and disruptions to family occupations (Angell et al., 2016). For underserved caregivers, defined as caregivers who identify as either low-income, immigrant, or non-English-speaking, the experiences may be further exacerbated due to language barriers, financial strain, or systemic inequities (Caicedo, 2014; Rodriguez & Dobler, 2021). However, a gap remains in the OT literature exploring the lived experiences of underserved caregivers. In particular, understanding how cumulative trauma shapes the everyday occupations of this population.
Purpose: The purpose of this study was to examine the lived experiences of underserved families raising children with neurodevelopmental disorders through a trauma-informed, occupation-centered lens to answer the following research question: How do underserved caregivers (classified as either low-income, immigrant, or non-English speaking) of children with neurodevelopmental disabilities or developmental delays experience and navigate cumulative trauma, and how do these experiences shape their occupational engagement and family life?
Design/Methods: This qualitative phenomenological study included six underserved caregivers in Marin County who were raising a child with a neurodevelopmental disorder or developmental delay. Participants were recruited through convenience and snowball sampling and completed one 40–90-minute semi-structured interview in their preferred language, English or Spanish. Interviews were guided by trauma-informed care (TIC) principles and the Person-Environment-Occupation (PEO) model to explore family occupations and experiences of cumulative trauma, systemic barriers, and strategies for navigating challenges. Interviews were transcribed verbatim and analyzed through open and axial coding, with ongoing faculty review to identify patterns and develop themes.
Results: The following three themes emerged from five caregiver interviews: (1) cumulative trauma occurs across multiple contexts, (2) the occupational impact of cumulative trauma, and (3) evolution of identity and occupational engagement. Caregivers described intersecting experiences of immigration-related trauma, financial hardship, diagnostic uncertainty, and cultural/intergenerational expectations that influenced family occupations, including leisure, sleep, and community participation.
IRB Number
11363