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Insights From Bereaved Parents and Oncologists

27 juli 2026 uppdaterad av: St. Jude Children's Research Hospital

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.

Studieöversikt

Status

Rekrytering

Betingelser

Kommunikation

Detaljerad beskrivning

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.

Studietyp

Observationell

Inskrivning (Beräknad)

Kontakter och platser

Det här avsnittet innehåller kontaktuppgifter för dem som genomför studien och information om var denna studie genomförs.

Studiekontakt

Namn: Stephanie Gehle, MD
Telefonnummer: 888-226-4343
E-post: referralinfo@stjude.org

Studieorter

Förenta staterna
- Tennessee
  - Memphis, Tennessee, Förenta staterna, 38105
    - Rekrytering
    - St. Jude Children's Research Hospital
    - Kontakt:
      
      Stephanie Gehle, MD
      
      Telefonnummer: 888-226-4343
      
      E-post: referralinfo@stjude.org
    - Huvudutredare:
      
      Stephanie Gehle, MD

Deltagandekriterier

Forskare letar efter personer som passar en viss beskrivning, så kallade behörighetskriterier. Några exempel på dessa kriterier är en persons allmänna hälsotillstånd eller tidigare behandlingar.

Urvalskriterier

Åldrar som är berättigade till studier

Vuxen
Äldre vuxen

Tar emot friska volontärer

N/A

Testmetod

Icke-sannolikhetsprov

Studera befolkning

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

Beskrivning

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.

Studieplan

Det här avsnittet ger detaljer om studieplanen, inklusive hur studien är utformad och vad studien mäter.

Hur är studien utformad?

Designdetaljer

Antal grupper/kohorter

Kohorter och interventioner

Grupp / Kohort
Parent Participants Parents who have lost a child to cancer
Oncologist Participants St. Jude doctors who treated the child

Vad mäter studien?

Primära resultatmått

Resultatmått	Åtgärdsbeskrivning	Tidsram
Bereaved parents of children with cancer and oncologists reflections on communication about prognostic uncertainty during the child's cancer treatment Tidsram: 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.	Approximately 1-3 weeks after enrollment.

Samarbetspartners och utredare

Det är här du hittar personer och organisationer som är involverade i denna studie.

Sponsor

St. Jude Children's Research Hospital

Utredare

Huvudutredare: Stephanie Gehle, MD, St. Jude Children's Research Hospital

Publikationer och användbara länkar

Den som ansvarar för att lägga in information om studien tillhandahåller frivilligt dessa publikationer. Dessa kan handla om allt som har med studien att göra.

Användbara länkar

Studieavstämningsdatum

Dessa datum spårar framstegen för inlämningar av studieposter och sammanfattande resultat till ClinicalTrials.gov. Studieposter och rapporterade resultat granskas av National Library of Medicine (NLM) för att säkerställa att de uppfyller specifika kvalitetskontrollstandarder innan de publiceras på den offentliga webbplatsen.

Studera stora datum

Studiestart (Faktisk)

9 juli 2026

Primärt slutförande (Beräknad)

1 december 2026

Avslutad studie (Beräknad)

1 december 2026

Studieregistreringsdatum

Först inskickad

16 juni 2026

Först inskickad som uppfyllde QC-kriterierna