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Bereaved Parent Conversations on Hope

29 giugno 2026 aggiornato da: St. Jude Children's Research Hospital

Bereaved Parent Conversations on Hope (BeHope)

This study looks at whether it is possible and helpful to have video call conversations about how hopes can change through the cancer journey between bereaved parents and learners at a children's cancer center.

Panoramica dello studio

Stato

Non ancora reclutamento

Condizioni

Descrizione dettagliata

Primary Objectives

Aim 1: To assess feasibility and acceptability of virtual conversations about hope between bereaved parent advisors and learners at St. Jude Children's Research Hospital.

Aim 2: To evaluate impact of discussions about hope on both bereaved parent advisors and learners.

Secondary Objectives

Aim 1: To explore impact of discussion with bereaved parent advisors and subsequent reflection on participant professional identity formation.

This intervention is designed to facilitate direct conversations between learners and bereaved parent advisors about how hope evolves through the child's cancer journey. Providing a structured, virtual opportunity to discuss hope will allow learners to hear about the lived experiences of bereaved parents as they navigated pediatric cancer treatment, end of life, and bereavement. The intervention incorporates a discussion guide to support the conversation and a post-session reflection exercise. Assessments will include quantitative surveys administered pre-intervention and immediately post-intervention, as well as qualitative written reflections from participants and bereaved parents.

Both participant groups will receive an information sheet detailing the study's purpose, procedures, potential risks, and benefits. An affirmative response on the pre-intervention survey to the item, "I would like to participate in a virtual educational discussion about hope," will be considered as implied consent to participate in the educational intervention portion of the study for both participants and facilitators. Investigators plan to enroll a total of 50 learners and 25 bereaved parent advisors.

For each learner who agrees to participate, two bereaved parent advisors will be identified and scheduled to meet virtually with the learner for approximately 1 hour using a virtual platform. Prior to the meeting, bereaved parent advisors will be instructed to select 3 photos that represent how hope evolved during their child's illness journey. Both the learners and bereaved parent advisors will be provided with the discussion guide for review prior to the session. Each virtual meeting will be recorded for implementation fidelity and for reference should any learner or parent concerns arise retrospectively from the conversation.

Immediately following each virtual meeting, both the learners and bereaved parent advisors will be asked to engage in individual short (15 minute) written reflections. Following this, participants will complete additional post-intervention survey questions with data collection managed through an online software platform. A second meeting with the same parents may be held at the learners request and the parents willingness. The participants who agree to and participate in a second meeting will receive open-ended questions and be prompted to complete a timed written reflection after the second meeting.

On an approximately quarterly basis, learners who have previously completed the intervention will be invited to participate in a facilitated group debrief and reflection session. Separately, bereaved parent advisors who have participated in at least one virtual meeting in the preceding quarter will be invited to a discussion and feedback session to share about their experiences with the program. For parents who do not prefer a group meeting, an individual session will be offered. All debriefing sessions will be recorded.

Tipo di studio

Interventistico

Iscrizione (Stimato)

75

Fase

  • Non applicabile

Contatti e Sedi

Questa sezione fornisce i recapiti di coloro che conducono lo studio e informazioni su dove viene condotto lo studio.

Contatto studio

Luoghi di studio

    • Tennessee
      • Memphis, Tennessee, Stati Uniti, 38105
        • St. Jude Children's Research Hospital
        • Investigatore principale:
          • Brittany Cowfer, MD
        • Contatto:

Criteri di partecipazione

I ricercatori cercano persone che corrispondano a una certa descrizione, chiamata criteri di ammissibilità. Alcuni esempi di questi criteri sono le condizioni generali di salute di una persona o trattamenti precedenti.

Criteri di ammissibilità

Età idonea allo studio

  • Adulto
  • Adulto più anziano

Accetta volontari sani

Descrizione

Inclusion Criteria

Intervention Participants must be:

  • Students, observers, trainees, and newly hired clinicians,
  • ≥18 years old,
  • participating in or observing clinical care at St. Jude Children's Research Hospital, and
  • willing to participate in the virtual intervention and associated study activities as learners

Intervention Facilitators must be:

  • Bereaved parents,
  • ≥ 18 years old,
  • screened and cleared to volunteer as advisers with St. Jude Children's Research Hospital through Family, Guest and Volunteer Services, and
  • willing to participate in the virtual intervention and associated study activities as a facilitator

Exclusion Criteria

Intervention Participants:

  • Age < 18 years, decline participation, or unable to speak/write in conversational English.

Intervention Facilitators:

  • Age < 18 years, decline participation, or unable to speak/write in conversational English.

Piano di studio

Questa sezione fornisce i dettagli del piano di studio, compreso il modo in cui lo studio è progettato e ciò che lo studio sta misurando.

Come è strutturato lo studio?

Dettagli di progettazione

  • Scopo principale: Altro
  • Assegnazione: N / A
  • Modello interventistico: Assegnazione di gruppo singolo
  • Mascheramento: Nessuno (etichetta aperta)

Armi e interventi

Gruppo di partecipanti / Arm
Intervento / Trattamento
Altro: Educational Intervention

Intervention Participants: Students, observers, trainees, and newly hired clinicians ≥18 years old participating in or observing clinical care at St. Jude Children's Research Hospital, and willing to participate in the virtual intervention and associated study activities as learners.

Intervention Facilitators: Bereaved parents ≥ 18 years old screened and cleared to volunteer as advisers with St. Jude Children's Research Hospital and willing to participate in the virtual intervention and associated study activities as a facilitator.

See Detailed Description
See Detailed Description

Cosa sta misurando lo studio?

Misure di risultato primarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Feasibility of Intervention and Acceptability of Intervention Measures
Lasso di tempo: Day 1 after virtual meeting
Feasibility will be evaluated using the Feasibility of Intervention Measure (FIM), which includes four itemized responses that are scored from one to five, such that one represents the lowest possible mean score and five the highest possible mean score. Acceptability will be evaluated using the Acceptability of Intervention Measure (AIM), which includes four itemized responses that are scored from one to five, such that one represents the lowest possible mean score and five the highest possible mean score. Feasibility and acceptability will be evaluated for the overall study cohort, including both learners and bereaved parent advisors, and by subgroup. Feasibility and Acceptability are standardly considered to be achieved with a mean score ≥3 for each. Higher scores indicate greater perceived feasibility and acceptability.
Day 1 after virtual meeting
Survey
Lasso di tempo: At enrollment and day 1 after virtual meeting
To evaluate the impact of discussions about hope on both bereaved parent advisors and learners, investigators will summarize the distribution of responses to the pre and post intervention survey items by reporting frequencies and percentages for each response category. Pre-intervention surveys will also contain demographic information.
At enrollment and day 1 after virtual meeting
Written Reflections
Lasso di tempo: Day 1 after virtual meeting
Written reflections, captured after each virtual session, will be de-identified and analyzed using content analysis, an inductive approach which may include memo-writing, codebook development, coding, reconciliation, and synthesis to identify patterns and themes that emerge from the reflections. These will be used to assess impact of the session on both learners and parent advisors.
Day 1 after virtual meeting

Misure di risultato secondarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Debrief Sessions
Lasso di tempo: Quarterly over 2 years
Quarterly debrief sessions will be offered to those who have completed the intervention separately for bereaved parent advisors and learners. Learner debriefing sessions will be recorded, transcribed, and analyzed qualitatively to assess for impact on professional identity formation. Optional parent advisor debriefs will also be recorded and analyzed to further assess impact on facilitators.
Quarterly over 2 years

Collaboratori e investigatori

Qui è dove troverai le persone e le organizzazioni coinvolte in questo studio.

Investigatori

  • Investigatore principale: Brittany Cowfer, MD, St. Jude Children's Research Hospital

Pubblicazioni e link utili

La persona responsabile dell'inserimento delle informazioni sullo studio fornisce volontariamente queste pubblicazioni. Questi possono riguardare qualsiasi cosa relativa allo studio.

Studiare le date dei record

Queste date tengono traccia dell'avanzamento della registrazione dello studio e dell'invio dei risultati di sintesi a ClinicalTrials.gov. I record degli studi e i risultati riportati vengono esaminati dalla National Library of Medicine (NLM) per assicurarsi che soddisfino specifici standard di controllo della qualità prima di essere pubblicati sul sito Web pubblico.

Studia le date principali

Inizio studio (Stimato)

1 luglio 2026

Completamento primario (Stimato)

1 luglio 2028

Completamento dello studio (Stimato)

1 ottobre 2028

Date di iscrizione allo studio

Primo inviato

24 giugno 2026

Primo inviato che soddisfa i criteri di controllo qualità

29 giugno 2026

Primo Inserito (Effettivo)

30 giugno 2026

Aggiornamenti dei record di studio

Ultimo aggiornamento pubblicato (Effettivo)

30 giugno 2026

Ultimo aggiornamento inviato che soddisfa i criteri QC

29 giugno 2026

Ultimo verificato

1 giugno 2026

Maggiori informazioni

Termini relativi a questo studio

Piano per i dati dei singoli partecipanti (IPD)

Hai intenzione di condividere i dati dei singoli partecipanti (IPD)?

Descrizione del piano IPD

Individual participant de-identified datasets containing the variables analyzed in the published article will be made available (related to the study primary or secondary objectives contained in the publication). Supporting documents such as the protocol, statistical analyses plan, and informed consent are available through the CTG website for the specific study. Data used to generate the published article will be made available at the time of article publication. Investigators who seek access to individual level de-identified data will contact the computing team in the Department of Biostatistics (ClinTrialDataRequest@stjude.org) who will respond to the data request.

Periodo di condivisione IPD

Data will be made available at the time of article publication.

Criteri di accesso alla condivisione IPD

Data will be provided to researchers following a formal request with the following information: full name of requestor, affiliation, data set requested, and timing of when data is needed. As an informational point, the lead statistician and study principal investigator will be informed that primary results datasets have been requested.

Tipo di informazioni di supporto alla condivisione IPD

  • STUDIO_PROTOCOLLO
  • LINFA

Informazioni su farmaci e dispositivi, documenti di studio

Studia un prodotto farmaceutico regolamentato dalla FDA degli Stati Uniti

No

Studia un dispositivo regolamentato dalla FDA degli Stati Uniti

No

Queste informazioni sono state recuperate direttamente dal sito web clinicaltrials.gov senza alcuna modifica. In caso di richieste di modifica, rimozione o aggiornamento dei dettagli dello studio, contattare register@clinicaltrials.gov. Non appena verrà implementata una modifica su clinicaltrials.gov, questa verrà aggiornata automaticamente anche sul nostro sito web .

Prove cliniche su Discussion Guide

3
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