Insights From Bereaved Parents and Oncologists
Foundations of Communication in Uncertainty Study (FOCUS): Insights From Bereaved Parents and Oncologists
Přehled studie
Postavení
Podmínky
Detailní popis
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.
Typ studie
Zápis (Odhadovaný)
Kontakty a umístění
Studijní kontakt
- Jméno: Stephanie Gehle, MD
- Telefonní číslo: 888-226-4343
- E-mail: referralinfo@stjude.org
Studijní místa
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Tennessee
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Memphis, Tennessee, Spojené státy, 38105
- St. Jude Children's Research Hospital
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Kontakt:
- Stephanie Gehle, MD
- Telefonní číslo: 888-226-4343
- E-mail: referralinfo@stjude.org
-
Vrchní vyšetřovatel:
- Stephanie Gehle, MD
-
-
Kritéria účasti
Kritéria způsobilosti
Věk způsobilý ke studiu
- Dospělý
- Starší dospělý
Přijímá zdravé dobrovolníky
Metoda odběru vzorků
Studijní populace
Popis
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.
Studijní plán
Jak je studie koncipována?
Detaily designu
Kohorty a intervence
Skupina / kohorta |
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Parent Participants
Parents who have lost a child to cancer
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Oncologist Participants
St. Jude doctors who treated the child
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Co je měření studie?
Primární výstupní opatření
Měření výsledku |
Popis opatření |
Časové okno |
|---|---|---|
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Bereaved parents of children with cancer and oncologists reflections on communication about prognostic uncertainty during the child's cancer treatment
Časové okno: Approximately 1-3 weeks after enrollment.
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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.
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Spolupracovníci a vyšetřovatelé
Vyšetřovatelé
- Vrchní vyšetřovatel: Stephanie Gehle, MD, St. Jude Children's Research Hospital
Publikace a užitečné odkazy
Termíny studijních záznamů
Hlavní termíny studia
Začátek studia (Odhadovaný)
Primární dokončení (Odhadovaný)
Dokončení studie (Odhadovaný)
Termíny zápisu do studia
První předloženo
První předloženo, které splnilo kritéria kontroly kvality
První zveřejněno (Aktuální)
Aktualizace studijních záznamů
Poslední zveřejněná aktualizace (Aktuální)
Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality
Naposledy ověřeno
Více informací
Termíny související s touto studií
Klíčová slova
Další identifikační čísla studie
- FOCUS
Informace o lécích a zařízeních, studijní dokumenty
Studuje lékový produkt regulovaný americkým FDA
Studuje produkt zařízení regulovaný americkým úřadem FDA
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