Insights From Bereaved Parents and Oncologists
Foundations of Communication in Uncertainty Study (FOCUS): Insights From Bereaved Parents and Oncologists
研究概览
地位
条件
详细说明
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.
研究类型
注册 (估计的)
联系人和位置
学习联系方式
- 姓名:Stephanie Gehle, MD
- 电话号码:888-226-4343
- 邮箱:referralinfo@stjude.org
学习地点
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Tennessee
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Memphis、Tennessee、美国、38105
- 招聘中
- St. Jude Children's Research Hospital
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接触:
- Stephanie Gehle, MD
- 电话号码:888-226-4343
- 邮箱:referralinfo@stjude.org
-
首席研究员:
- Stephanie Gehle, MD
-
-
参与标准
资格标准
适合学习的年龄
- 成人
- 年长者
接受健康志愿者
取样方法
研究人群
描述
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.
学习计划
研究是如何设计的?
设计细节
队列和干预
团体/队列 |
|---|
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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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研究衡量的是什么?
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Bereaved parents of children with cancer and oncologists reflections on communication about prognostic uncertainty during the child's cancer treatment
大体时间: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.
|
合作者和调查者
调查人员
- 首席研究员:Stephanie Gehle, MD、St. Jude Children's Research Hospital
出版物和有用的链接
研究记录日期
研究主要日期
学习开始 (实际的)
初级完成 (估计的)
研究完成 (估计的)
研究注册日期
首次提交
首先提交符合 QC 标准的
首次发布 (实际的)
研究记录更新
最后更新发布 (实际的)
上次提交的符合 QC 标准的更新
最后验证
更多信息
与本研究相关的术语
其他研究编号
- FOCUS
- NCI-2026-05231 (注册表标识符:NCI Clinical Trial Registration Program)
药物和器械信息、研究文件
研究美国 FDA 监管的药品
研究美国 FDA 监管的设备产品
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