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NCT Number: NCT07663539

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.

Recruiting

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Key information

Conditions

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

St. Jude Children's Research Hospital

Memphis, Tennessee, 38105, United States

Location status: Recruiting

Location contact

Stephanie Gehle, MD

CONTACT

[email protected]

888-226-4343

Stephanie Gehle, MD

PRINCIPAL_INVESTIGATOR

About this study

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.

Who can participate

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Primary outcomes

  1. Bereaved parents of children with cancer and oncologists reflections on communication about prognostic uncertainty during the child's cancer treatment

    Time frame: Approximately 1-3 weeks after enrollment.

    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.

Study contacts

Contact information is provided by the study sponsor or research team.

Stephanie Gehle, MD

CONTACT

[email protected]

888-226-4343

Sponsors and collaborators

Lead sponsor

St. Jude Children's Research Hospital

Other

Registry information

Official study title

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

Important dates

Study start
2026
Primary completion
2026
Study completion
2026
First posted
Jun 23, 2026
Registry last updated
Jul 28, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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