Actively Recruiting
Sharing Hope: A Longitudinal Photo-Narrative Exploration of Hope During Phase 1/2 Clinical Trials For Pediatric Cancer
Led by St. Jude Children's Research Hospital · Updated on 2026-04-28
100
Participants Needed
1
Research Sites
104 weeks
Total Duration
On this page
Sponsors
S
St. Jude Children's Research Hospital
Lead Sponsor
N
National Cancer Institute (NCI)
Collaborating Sponsor
AI-Summary
What this Trial Is About
This research aims to explore how patients and their families experience and express hope during cancer treatment in phase 1 or phase 2 clinical trials, especially for pediatric and young adult patients with relapsed, refractory, or non-curable cancers. The study focuses on understanding how hope changes over time and how healthcare providers perceive hope and goal alignment in this context. The goal is to support families better by identifying key themes and areas for improvement in hope-related care. The study is observational and uses photo-narrative interviews where participants share photos representing their hope and discuss their feelings about it. These interviews occur at enrollment and follow-up timepoints, either in-person or virtually. Clinicians will also be interviewed to gain their perspectives on patient and family hope. Additionally, focus groups involving patients, caregivers, and clinicians will help co-design a supportive care intervention based on these findings. Demographic and clinical data will be collected from medical records. Participants will engage in several interviews at enrollment, 3, 6, 9, and 12 months, sharing photos and reflections. Researchers will review electronic medical records at these times to gather clinical context. Focus groups will be held after at least 12 months to develop supportive care strategies. This process includes ongoing assessments of hope experiences from multiple perspectives, aiming to create meaningful support for families facing challenging cancer treatments.
CONDITIONS
Brief Title
A Longitudinal Photo-Narrative Exploration of Hope During Phase 1/2 Clinical Trials For Pediatric Cancer
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patient participants must be 12 to 25 years of age.
- Have a primary cancer diagnosis that is relapsed, refractory, or without curative standard-of-care options.
- Be enrolled or planning to enroll in a phase 1 or phase 2 trial for cancer-directed therapy.
- Parent or primary caregiver to a child of any age with relapsed, refractory, or non-curative cancer.
- Caregiver must be 18 years of age or legally emancipated.
- Caregiver's child must be enrolled or planning to enroll in a phase 1 or phase 2 cancer therapy trial.
- Physicians, advanced practice providers, or nurses providing direct care to patient or caregiver child.
- Psychosocial clinicians providing care or consultation to pediatric or adolescent/young adult patients with relapsed, refractory, or high-risk cancer and/or their families.
You will not qualify if you...
- Do not meet inclusion criteria.
- Decline, refuse, or are unwilling to participate.
- Are a minor without a legal guardian available or willing to provide informed consent.
- Lack the cognitive, communicative, or physical capacity to participate meaningfully in photo-narrative interviews, including profound neurocognitive impairment or non-responsiveness.
AI-Screening
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Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or virtual) to determine eligibility
Duration - At enrollment and ongoing up to 12 months
Participants receive guidance on photo-elicitation interviews and begin longitudinal photo-narrative data collection to explore hope during cancer treatment.
Interviews at enrollment, 3, 6, 9, and 12 months (+/- 4 weeks), conducted in-person or virtually
Duration - At enrollment and at 3, 6, 9, and 12 months (+/- 4 weeks)
Demographic and clinical data are collected from electronic medical records at multiple timepoints to contextualize participant experiences.
Data collection aligned with photo-narrative interview visits
Duration - At 6 and 12 months (+/- 4 weeks)
Clinicians participate in semi-structured interviews reflecting on participants' photo narratives to provide professional perspectives on hope.
2 interviews (in-person or virtual)
Duration - At least 12 months after enrollment
Participants, caregivers, and clinicians engage in focus groups to collaboratively develop and refine a supportive care intervention centered on hope.
2 focus group sessions (in-person or virtual)
Trial Site Locations
Total: 1 location
1
St. Jude Children's Research Hospital
Memphis, Tennessee, United States, 38105
Actively Recruiting
Research Team
A
Alexandra Superdock, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
3
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