Hope
Conditions
Keywords
Cancer Journey, St. Jude Children's Research Hospital (SJCRH), SJCRH Bereaved Parent Advisors, SJCRH Learners, Virtual Intervention
Brief summary
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.
Detailed description
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.
Interventions
OTHERDiscussion Guide
See Detailed Description
OTHERPost-session Reflection Exercise
See Detailed Description
Sponsors
St. Jude Children's Research Hospital
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
OTHER
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility of Intervention and Acceptability of Intervention Measures | 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. |
| Survey | 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. |
| Written Reflections | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Debrief Sessions | 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. |
Countries
United States
Contacts
CONTACTBrittany Cowfer, MD
PRINCIPAL_INVESTIGATORBrittany Cowfer, MD
St. Jude Children's Research Hospital
Outcome results
None listed