Bereaved Parent Conversations on Hope
Bereaved Parent Conversations on Hope (BeHope)
調査の概要
詳細な説明
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.
研究の種類
入学 (推定)
段階
- 適用できない
連絡先と場所
研究連絡先
- 名前:Brittany Cowfer, MD
- 電話番号:888-226-4343
- メール:referralinfo@stjude.org
研究場所
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Tennessee
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Memphis、Tennessee、アメリカ、38105
- St. Jude Children's Research Hospital
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主任研究者:
- Brittany Cowfer, MD
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コンタクト:
- Brittany Cowfer, MD
- 電話番号:888-226-4343
- メール:referralinfo@stjude.org
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-
参加基準
適格基準
就学可能な年齢
- 大人
- 高齢者
健康ボランティアの受け入れ
説明
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.
研究計画
研究はどのように設計されていますか?
デザインの詳細
- 主な目的:他の
- 割り当て:なし
- 介入モデル:単一グループの割り当て
- マスキング:なし(オープンラベル)
武器と介入
参加者グループ / アーム |
介入・治療 |
|---|---|
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他の: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
|
この研究は何を測定していますか?
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
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Feasibility of Intervention and Acceptability of Intervention Measures
時間枠:Day 1 after virtual meeting
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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.
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Day 1 after virtual meeting
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Survey
時間枠:At enrollment and day 1 after virtual meeting
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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.
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At enrollment and day 1 after virtual meeting
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Written Reflections
時間枠:Day 1 after virtual meeting
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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.
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Day 1 after virtual meeting
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二次結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
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Debrief Sessions
時間枠:Quarterly over 2 years
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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.
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Quarterly over 2 years
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協力者と研究者
捜査官
- 主任研究者:Brittany Cowfer, MD、St. Jude Children's Research Hospital
出版物と役立つリンク
研究記録日
主要日程の研究
研究開始 (推定)
一次修了 (推定)
研究の完了 (推定)
試験登録日
最初に提出
QC基準を満たした最初の提出物
最初の投稿 (実際)
学習記録の更新
投稿された最後の更新 (実際)
QC基準を満たした最後の更新が送信されました
最終確認日
詳しくは
本研究に関する用語
キーワード
その他の研究ID番号
- BeHope
個々の参加者データ (IPD) の計画
個々の参加者データ (IPD) を共有する予定はありますか?
IPD プランの説明
IPD 共有時間枠
IPD 共有アクセス基準
IPD 共有サポート情報タイプ
- STUDY_PROTOCOL
- SAP
医薬品およびデバイス情報、研究文書
米国FDA規制医薬品の研究
米国FDA規制機器製品の研究
この情報は、Web サイト clinicaltrials.gov から変更なしで直接取得したものです。研究の詳細を変更、削除、または更新するリクエストがある場合は、register@clinicaltrials.gov。 までご連絡ください。 clinicaltrials.gov に変更が加えられるとすぐに、ウェブサイトでも自動的に更新されます。
Discussion Guideの臨床試験
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London Health Sciences CentreUniversity of Western Ontario, Canada; Synaptive Medicalわからない脳損傷、慢性 | 小脳性認知情動症候群 | 小脳無言症
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Andrew ParrentUniversity of Western Ontario, Canada; Synaptive Medicalわからない側頭葉てんかん