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Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity: a Qualitative Study

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Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Background

Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Hispanic children face many challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents with limited English proficiency (SSP-LEP).

Methods

This was a qualitative study of 70 children of Spanish-speaking caregivers, enrolled in a complex care program of a tertiary care children’s hospital in North Carolina. Secondary source data were abstracted logs of care coordination tasks maintained by the program’s two bilingual care coordinators for a median observation period of 45 months, and complemented by data from care coordinator interviews. Data were entered and coded in ATLAS.ti. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers.

Results

Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified as follows: (1) caregivers faced many communication challenges primarily because of language barrier. (2) Multiple factors at caregiver, provider, and system levels, in addition to language barrier, contributed to communication challenges. (3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual coordinators.

Conclusion

SSP-LEP face unique communication challenges resulting in negative impact on the healthcare of their CMC. Bilingual coordinators can help improve communication between SSP-LEP and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.

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Data Availability

The qualitative dataset generated and/or analyzed during the current study are not publicly available because of the potential for compromising privacy of individuals, but summarized data are available from the corresponding author on reasonable request.

Code Availability

Not applicable.

Abbreviations

CMC:

Children with medical complexity

EMR:

Electronic Medical Record

SSP-LP:

Spanish-speaking parents/caregivers with limited English proficiency

LEP:

Limited English proficiency

WFHS:

Wake Forest Health Sciences

BCH:

Brenner Children’s Hospital

CSHCN:

Children with special healthcare needs

PECP:

Pediatric Enhanced Care Program

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Acknowledgements

We thank Ms. Aura Rosado and Ms. Vanessa Ortiz for participating in interviews about children with medical complexity, and Dr. Emily Ware MD, MSN for assistance with literature review.

Funding

Dr. Nageswaran was supported by Healthy Tomorrow’s Partnership for Children Program Grant from the Health Resources and Service Administration (H17MC11228) and Integrated Community Systems for CSHCN Grant from the Health Resources and Service Administration (D70MC23061).

Author information

Authors and Affiliations

  1. Department of Pediatrics, Wake Forest School of Medicine, 1 Medical Center Blvd, Winston-Salem, NC, 27157, USA

    Savithri Nageswaran

  2. Levine Children’s Hospital, Atrium Health, Charlotte, NC, USA

    Margaret B. Ellis

  3. Department of Pediatrics, UT Southwestern Medical Center, Dallas, TX, USA

    Mark S. Beveridge

Authors
  1. Savithri Nageswaran
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  2. Margaret B. Ellis
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  3. Mark S. Beveridge
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Contributions

All authors have read and approved the manuscript.

SN conceptualized and designed the study, analyzed the data, interpreted the results, drafted the manuscript, approved the submitted version, and agreed to be personally accountable for the authors’ contributions and the accuracy or integrity of any part of the work.

MBE interpreted the results, conducted literature review, revised the manuscript, approved the submitted version, and agreed to be personally accountable for the authors’ contributions and the accuracy or integrity of any part of the work.

MSB collected data, analyzed data, interpreted the results, revised the manuscript, approved the submitted version, and agreed to be personally accountable for the authors’ contributions and the accuracy or integrity of any part of the work.

Corresponding author

Correspondence to Savithri Nageswaran.

Ethics declarations

Ethics Approval and Consent to Participate

The Wake Forest Health Sciences Institutional Review Board approved the study protocol. Written informed consent was waived. This manuscript reports aggregate data and does not report private information from any one individual.

Conflict of Interest

The authors declare no competing interests.

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Margaret B. Ellis and Mark S. Beveridge affiliations changed from Wake Forest School of Medicine, Winston-Salem, NC, USA.

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Nageswaran, S., Ellis, M.B. & Beveridge, M.S. Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity: a Qualitative Study. J. Racial and Ethnic Health Disparities 9, 2218–2226 (2022). https://doi.org/10.1007/s40615-021-01161-x

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  • DOI: https://doi.org/10.1007/s40615-021-01161-x

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