Caregiver–provider communication after resection of pediatric brain tumors

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  • 1 Department of Psychology;
  • 2 Department of Neurosurgery, Division of Pediatrics;
  • 3 Department of Health Behavior, School of Public Health; and
  • 4 Department of Pediatrics, Division of Hematology/Oncology, University of Alabama at Birmingham, Alabama
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OBJECTIVE

Because caregivers are a crucial part of a child’s medical care, it is important to understand how to best communicate with them during hospitalization. Qualitative research can elucidate the best strategies for effective parent–provider communication. This study aims to reveal communication styles of neurosurgery team members, and to identify areas for improvement in the future.

METHODS

Caregivers of children with a newly diagnosed brain tumor requiring neurosurgery were enrolled during their child’s hospitalization. During routine follow-up clinic visits within 3 months after diagnosis and tumor resection, caregivers participated in a semistructured interview, which assessed the quality of communication with the neurosurgery and oncology teams during hospitalization. Interviews were audio-recorded, transcribed, and coded for common themes until thematic saturation was reached.

RESULTS

During caregiver interviews (N = 22), several domains were discussed including communicating the diagnosis to the patient and siblings, to the rest of the family/support network, and with the neurosurgery team. Regarding parent–neurosurgeon communication, 82% of caregivers identified at least one positive aspect and 55% identified at least one negative aspect of communication. Caregivers who provided positive feedback appreciated that their neurosurgeon was thorough (73%), direct (27%), or compassionate (14%). They also valued when providers would speak “on my level” (18%) and would speak directly to the patient (27%). In terms of negative feedback, caregivers identified miscommunications (32%), discussing the diagnosis in front of the child before feeling prepared to do so (14%), and a lack of clarity about expectations, medications, or treatment (32%).

CONCLUSIONS

These data provide specific ways in which neurosurgery providers have communicated effectively with caregivers and identify areas for improvement. Results have been used to develop a navigator-led intervention geared toward improving parent–provider communication during hospitalization for resection of a brain tumor.

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Contributor Notes

Correspondence Brandon G. Rocque: University of Alabama at Birmingham, AL. brandon.rocque@childrensal.org.

INCLUDE WHEN CITING Published online May 29, 2020; DOI: 10.3171/2020.4.PEDS19696.

Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

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