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The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study
Journal article   Open access   Peer reviewed

The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study

Nicola Brodie, Bruce Bernstein, Francis McNesby and Renee Turchi
Global pediatric health, v 6, pp 2333794-2333794X19851390
Jan 2019
DOI: https://doi.org/10.1177/2333794X19851390
PMID: 31211182
url
https://doi.org/10.1177/2333794x19851390View
Published, Version of Record (VoR)CC BY-NC V4.0,  Open
url
https://doi.org/10.1177/2333794X19851390View
Published, Version of Record (VoR) Open

Abstract

Children and youth with special health care needs (CYSHCN) comprise a growing proportion of the pediatric population; the patient- and family-centered medical home provides a comprehensive model for caring for these patients. Given the limited literature available as well as extreme patient vulnerability, we sought to understand the experience of Latino parents in caring for their CYSHCN within our patient-centered medical home in an urban neighborhood in North Philadelphia. A convenience sample of 14 mothers or grandmothers of CYSHCN participated in semistructured interviews, which were analyzed using a thematic, constant comparative approach to identify common themes. Themes identified included “Waiting,” “Communication/Trust,” “All-Consuming Requirements of Care/Sacrifice,” and “Fate/Faith/Blessings.” These themes corresponded with identified goals of the patient-centered medical home. Our findings suggest that the principles of the patient-centered medical home can be applied in unique ways to caring for this unique patient population.

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7 citations in Scopus

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