Insights From Bereaved Parents and Oncologists

Foundations of Communication in Uncertainty Study (FOCUS): Insights From Bereaved Parents and Oncologists

Investigators want to find better ways for doctors and families to talk about cancer and how uncertainty may affect a child's life.

Study Overview

• Status: Not yet recruiting
• Conditions: Communication

Detailed Description

Primary Objective

• To characterize how bereaved parents of children with cancer and their child's oncologist perceive their experience with communication about prognostic uncertainty during the child's cancer journey and during bereavement.

Secondary Objective

• To elicit parents' and oncologists' preferences and recommendations for how clinicians should talk with children and families about prognosis in the setting of uncertainty.

This study aims to explore bereaved parents' and oncologists' reflections on communication about prognostic uncertainty during the child's cancer treatment. Parents who have lost a child to cancer and the doctors who treated them will be invited to join this study.

Participants who opt to participate in the study will engage in an audio recorded semi-structured interview with a researcher, virtually or in person (at their discretion) to share their perspectives and recommendations based on their experience. Throughout the interview, the interviewer has the option to ask additional questions (i.e., probe with questions not in the interview guide) to respond to comments made by the participant and honor the topics of interest to that given participant. The participant will be provided an opportunity to add any details or comments at the end of the interview if he/she would like to share additional information.

Following completion of the qualitative portion of the interview, the researcher will ask the participant several questions from a demographic form. The demographic form will include questions related to participant age, race/ethnicity, state/country of residence for bereaved parents, and years of clinical practice for oncologists.

• Study Type: Observational
• Enrollment (Estimated): 50

Contacts and Locations

• Study Contact: Name: Stephanie Gehle, MD; Phone Number: 888-226-4343; Email: referralinfo@stjude.org

Study Locations

• United States
  • Tennessee
    • Memphis, Tennessee, United States, 38105
      • St. Jude Children's Research Hospital
      • Contact: Stephanie Gehle, MD; Phone Number: 888-226-4343; Email: referralinfo@stjude.org
      • Principal Investigator: Stephanie Gehle, MD

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: N/A

• Sampling Method: Non-Probability Sample

Study Population

Parents who have lost a child to cancer and the doctors who treated them.

Description

Inclusion Criteria:

• All participants must be ≥ 18 years of age or legally emancipated

• Parent Participants must have a child who:

  • Received cancer care from a clinician at St. Jude, as documented in the electronic medical record, AND
  • Died at least 6 months prior to enrollment, but no more than 24 months prior to enrollment.

• Oncologist participants at St. Jude must:

  • Be listed as the primary oncologist as documented in the electronic medical record, AND
  • Have the respective patient's parent agreement to participate in the study.

Exclusion Criteria:

• Declining, refusal, or unwillingness to participate
• Inability or unwillingness of research participant to give informed consent.

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort
Parent Participants; Parents who have lost a child to cancer
Oncologist Participants; St. Jude doctors who treated the child

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Bereaved parents of children with cancer and oncologists reflections on communication about prognostic uncertainty during the child's cancer treatment	The analysis plan for this study is to apply reflexive thematic analysis as described by Braun and Clarke, involving the following six step process: 1. Familiarization with the data, 2. Generating initial codes, 3. Generating initial themes, 4. Reviewing themes, 5. Refining, defining, and naming themes, 6. Writing up a narrative of results. Investigators will conduct individual interviews with participants and code transcripts independently to identify salient themes from each cohort, subsequently compare codes across cohorts to explore and characterize areas of convergence and divergence and use a matrix approach to facilitate this comparative analysis. Interviews will be recorded, transcribed, and de-identified prior to analysis. MAXQDA, a sophisticated qualitative analysis software system, will be used to conduct and synthesize analysis.	Approximately 1-3 weeks after enrollment.

Collaborators and Investigators

• Sponsor: St. Jude Children's Research Hospital
• Investigators: Principal Investigator: Stephanie Gehle, MD, St. Jude Children's Research Hospital

Publications and helpful links

Helpful Links

• St. Jude Children's Research Hospital
• Clinical Trials Open at St. Jude

Study record dates

Study Major Dates

• Study Start (Estimated): July 1, 2026
• Primary Completion (Estimated): September 1, 2026
• Study Completion (Estimated): September 1, 2026

Study Registration Dates

• First Submitted: June 16, 2026
• First Submitted That Met QC Criteria: June 16, 2026
• First Posted (Actual): June 23, 2026

Study Record Updates

• Last Update Posted (Actual): July 2, 2026
• Last Update Submitted That Met QC Criteria: July 1, 2026
• Last Verified: July 1, 2026

More Information

Terms related to this study

• Keywords: Oncologist; Prognostic Uncertainty; Bereaved Parents
• Additional Relevant MeSH Terms: Behavior; Communication
• Other Study ID Numbers: FOCUS

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No