Quality of Communication in Pediatric Oncology (QCOM), Massachusetts, Tennessee, and Missouri, 2018-2020 (ICPSR 38457)

Version Date: Jun 29, 2022

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Principal Investigator(s):
Bryan A. Sisk, Washington University in St. Louis. School of Medicine

Series:

https://doi.org/10.3886/ICPSR38457.v1

Version V1

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Summary

For parents of pediatric oncology patients, high-quality communication supports peace of mind, hopefulness, trust in physicians, and feeling validated. In order to improve communication and understand how it functions between caregivers, patients, and clinicians, the research team interviewed 80 parents of children with cancer from three different academic centers, with interviews focusing on experiences with communication with medical team staff. They recruited participants across sites, child age at diagnosis, and time points (during treatment, post-treatment or survivorship, and bereavement). Interviews followed semi-structured interview guides and were analyzed using content analysis with consensus and individual coding.

Citation

Sisk, Bryan A. Quality of Communication in Pediatric Oncology (QCOM), Massachusetts, Tennessee, and Missouri, 2018-2020. Inter-university Consortium for Political and Social Research [distributor], 2022-06-29. https://doi.org/10.3886/ICPSR38457.v1

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Funding

Conquer Cancer Foundation (Young Investigator Award), National Institutes of Health. National Center for Advancing Translational Sciences (UL1 TR0002345)

Subject Terms

Geographic Coverage

Restrictions

This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2018-10-01 -- 2020-03-31

Date of Collection

2018-10-01 -- 2020-03-31

Data Collection Notes

  1. This study is part of Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.

  2. ICPSR has zipped the 76 interview transcripts into a qualitative data package. This package is available for restricted download. Please refer to the ICPSR README documentation for more information.

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Study Purpose

The purpose of this study is to identify and define functions of communication between parents/caregivers and medical care teams in pediatric oncology.

Study Design

The research team recruited participants from one of three research hospitals with pediatric oncology units across the United States, identifying them through patient lists, inpatient census, and outpatient schedules. Potential participants were approached via phone call, mail, or in person. Semi-structured interviews were conducted by phone using an interview guide informed by the research team's previous work and pilot interviews. Interviews were audio-recorded and professionally transcribed, lasting between 24 and 108 minutes. Two members of the research team coded all transcripts with Dedoose software using a combination of consensus and individual coding, guided by semantic content analysis and thematic analysis.

Sample

The researchers employed stratified sampling with the following strata, aiming for 12 to 15 caregivers per stratum: time point (treatment less than 1 month, survivorship greater than 6 months, or bereavement less than 6 months), child's age at diagnosis (12 years and younger or 13 years and older), and study site. Caregivers were eligible for the study if they were the family member most involved in communicating with clinicians, if their child was younger than 18 years old at time of enrollment or death, and spoke English.

Time Method

Cross-sectional

Universe

Parents of children who had been diagnosed with cancer and were currently receiving or had received treatment at one of the three study sites.

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

Description of Variables

In the interview, participants were asked about their communication and interaction experiences with the medical team while their child was being treated for cancer. Caregivers provided examples of good and poor communication toward their child and themselves. Participants gave perspectives about interactions with doctors, nurses, and specialists during different phases of treatment as applicable (at diagnosis, treatment, remission, or during bereavement), specifically what went well, what was hard to discuss, and what they wished the team members had discussed with them. Finally, participants offered advice for medical teams talking to a family about a child's cancer diagnosis, as well as for the family receiving the diagnosis.

Participants also completed a demographics survey containing the following items: sex, age, relationship to child, education, race, ethnicity, relationship status, religion, child's sex, child's age at diagnosis, and type of cancer diagnosed.

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Original Release Date

2022-06-29

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.