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EARLY INTERVENTIONS FOR CHILDREN WITH NEURODEVELOPMENTAL DISABILITIES: EXPERIENCES OF RACIAL-ETHNIC DIVERSE CAREGIVERS

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posted on 2024-07-19, 17:16 authored by Mehreen Zehra HassanMehreen Zehra Hassan

Recent years have brought significant advances in interventions for developmental disabilities, emphasizing family-centered strategies and highlighting the importance of sociocultural context and family structures for providing context-specific interventions. Despite these advances, many families continue to struggle with understanding or accepting developmental disabilities, complicating intervention progress. This complexity is exacerbated for racially and ethnically diverse caregivers adapting to a new culture, as cultural differences influence how disabilities are perceived and managed.

This dissertation investigates the role of culture in the experiences of diverse caregivers of children with developmental disabilities. Guided by Bronfenbrenner’s bioecological systems theory and Berry’s acculturation theory, it examines how cultural adaptation impacts caregiving. Study 1 captures caregivers' lived experiences, revealing the dual challenges of stigma and negative community attitudes. Despite these obstacles, their resilience shines through, supported by culturally sensitive coaches. Study 2 examines the relationship between caregivers' acculturation strategies and parenting stress, finding that marginalization and separation increase stress, while integration and assimilation do not significantly impact it. Notably, longer residency in the U.S. correlates with lower satisfaction with interventions, regardless of acculturation strategies.

These findings underscore the urgent need for culturally sensitive support systems and the establishment of trustful relationships between service providers and caregivers. Recommendations include the involvement of translators, educators, and community resources to deliver holistic, culturally attuned support. Policymakers are urged to design flexible programs that cater to the unique needs of diverse families, enhancing their interaction with healthcare services and interventions.

In essence, this dissertation underscores the critical role of cultural context in shaping caregiving experiences. It passionately argues for a comprehensive support approach that embraces the rich diversity and distinct challenges faced by caregivers, paving the way for more effective and empathetic care strategies.


Funding

The Purdue Autism Research Center

Purdue University Center for Families

History

Degree Type

  • Doctor of Philosophy

Department

  • Human Development and Family Studies

Campus location

  • West Lafayette

Advisor/Supervisor/Committee Chair

Amy J. Schwichtenberg

Additional Committee Member 2

Carolyn E. McCormick

Additional Committee Member 3

Zoe Taylor

Additional Committee Member 4

Xiang Zhou

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