Alvarez, M. B. A phenomenological study of how the experiences of Spanish-speaking parents/caregivers in a pediatric intensive care unit compare to the principles of Patient-and Family-Centered Care, New York University, Ph.D. April 20, 2020.
The purpose of this phenomenological study was to explore the experiences of Spanish speaking parents/family caregivers who had a child in a pediatric intensive care unit (PICU) and to compare the emerging lifeworld themes found in their narratives with the core concepts of the Patient-and Family-Centered (IPFCC) model: dignity and respect, information sharing, participation, and collaboration. A descriptive interpretive design was used with a purposive homogenous sample to reflect the experiences of Spanish-speaking parents/family caregivers of a child who had been admitted to a PICU between 2016 and 2018. Open-ended in-depth interviews were conducted with 36 parents/family caregivers between February and December 2018. The study participants had PICU experiences in 10 hospitals—five in New York, four in New Jersey, and one outside the United States. Interview data were audio-recorded, transcribed, and analyzed using the NVivo12-Plus software. Four main themes emerged from the data analysis: (1) “See our humanity and show us yours;” (2) “Ask us and take time to listen, we have valuable information;” (3) “If we are not part of the team, there is no progress;” and (4) “For the time we are here, your workplace is our home.” The findings of this study provide a deeper understanding of the experiences of Spanish-speaking parents/caregivers during the continuum of a PICU admission. When compared to the PFCC model, the study reveals that Spanish-speaking families are not consistently receiving optimal patient- and family-centered care. Further research is needed to understand the barriers to a consistent application of the model with diverse groups. Participatory approaches in research design and implementation to better understand diverse cultural perspectives and structural inequalities are recommended.
|Commitee:||Goldín, Liliana, Gonzales, Guillermo Ernest|
|School:||New York University|
|School Location:||United States -- New York|
|Source:||DAI-A 81/11(E), Dissertation Abstracts International|
|Keywords:||Health Care, Patient- and Family-Centered Care, Pediatric Intensive Care, Phenomenology, Social Work, Spanish-speaking parents/family caregivers|
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