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Understanding Hope During Pediatric Cancer Clinical Trials

This study aims to understand how young people (ages 12-25) with cancer and their parents/caregivers experience hope while participating in early-phase (Phase 1/2) clinical trials. These trials are for cancers that have come back, are not responding to standard treatments, or for which there are no standard cure options. Researchers want to learn what hope means to you, what helps you keep hope, what challenges it, and how your hopes might change over time. You would share your experiences through photos and interviews. The information gathered will help create better ways to support families like yours in the future. This study does not involve new treatments, but rather focuses on understanding your journey.

Study design
This is an observational study involving about 100 participants, where researchers will gather information without testing a specific intervention.
What's involved
You would participate in photo-elicitation interviews at enrollment, and then at 3, 6, 9, and 12 months. There will also be a demographic survey at enrollment and review of your electronic medical records.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for 12 months after enrollment.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT07444216

A Longitudinal Photo-Narrative Exploration of Hope During Phase 1/2 Clinical Trials For Pediatric Cancer

Recruiting
Not specifiedAges 12+Observational
St. Jude Children's Research Hospital
~100 participants
Updated 2026-04-28 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Longitudinal Hope-themed Photo-elicitation and Photo-narrative interview
Measured over At enrollment, 3, 6, 9, and 12 months (+/-4 weeks)
+3 more outcomes measured

Conditions

Cancer, Therapy-Related

Explore related trials

Malignant Neoplasm

Where it's being run

1 sites across 1 states
Tennessee1

Study leadership

  • Alexandra Superdock, MD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital

Who to contact

Alexandra Superdock, MD
[email protected]
888-226-4343
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Be 12 to 25 years of age.
Have a primary cancer diagnosis that is relapsed, refractory, or without curative standard-of-care options as follows:
'Relapsed' disease is defined as disease recurrence following a prior complete or partial response to initial therapy.
'Refractory' disease is defined as failure to achieve remission or response with standard upfront therapy.
Diagnoses will be considered 'without curative standard of care options' if there is no evidence-based curative treatment regimen or where standard therapies offer only palliative or non-curative intent (based on the assessment of the primary attending or division tumor board).
Be enrolled OR planning to enroll in a phase 1 or phase 2 trial for cancer-directed therapy.\* Patients will remain eligible until 4 weeks after they begin trial therapy, after which they are no longer eligible unless they subsequently enroll on a different clinical trial.
Be a parent or primary caregiver to a child of any age who
Has a primary cancer diagnosis that is relapsed, refractory, or without curative standard-of-care options
Is enrolled OR planning to enroll on a phase 1 or phase 2 trial for cancer-directed therapy.\* Parents will remain eligible until 4 weeks after their child begins trial therapy, after which they are no longer eligible unless their child subsequently enrolls on a different clinical trial.
Be ≥ 18 years of age or legally emancipated
Be a physician, advanced practice provider, or nurse providing direct patient care to the patient participant and/or to the child of the caregiver participant.
Be a psychosocial clinician (e.g., social worker, psychologist, chaplain, child life specialist, music therapist, cultural navigator, etc.)
Provide direct or consultative care to pediatric or adolescent/young adult patients with relapsed, refractory, or high-risk cancer and/or their families.
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 meaningfully participate in a photo-narrative interview, as determined by the research team in consultation with the patient, caregiver, and primary oncology team. This includes, but is not limited to, individuals with profound neurocognitive impairment, non-responsiveness, or other conditions that preclude the ability to engage in basic reflection, expression, or shared conversation about images.

What this trial measures

  • Longitudinal Hope-themed Photo-elicitation and Photo-narrative interviewAt enrollment, 3, 6, 9, and 12 months (+/-4 weeks)

    Semi-structured photo-narrative interviews with patients and caregivers will include the use of longitudinal photo-elicitation methods and participant engagement in photo-narrative experiences. Clinician interviews and electronic medical record data will be triangulated to enhance our understanding of the clinical context. Interview transcripts will undergo reflexive thematic analysis to generate key themes specific to participant perspectives and experiences around hope in the setting of phase 1/2 pediatric cancer clinical trials. Interviews will be audio-recorded, professionally transcribed, and de-identified prior to analysis. Transcripts and associated metadata will be imported into a secure, password-protected qualitative data management software platform to facilitate mixed-methods analysis. Participants will be invited, but not required, to share the digital photograph files used during their interview via secure institutional email or encrypted file transfer.

  • Demographic surveyAt enrollment

    Demographic characteristics will be monitored for purposeful sampling, with the goal of reflecting the demographic characteristics of the institution and surrounding region. Collected characteristics include patient age, patient/caregiver gender, patient/caregiver race, patient/caregiver ethnicity, and patient/caregiver religious affiliation.

  • Electronic medical record (EMR) ReviewAt enrollment, 3, 6, 9, and 12 months (+/-4 weeks)

    EMR data will be used for triangulation of semi-structured photo-narrative interviews with patients and caregivers to enhance our understanding of the clinical context. Clinical factors including disease status, treatment, complications, symptoms, medical interventions/procedures, consultant involvement, unplanned hospitalizations, and end of life care will be extracted from the EHR. Clinical factors will be extracted prior to each interview to include in field notes associated with that data collection timepoint.

  • Focus groupsAt least 12 months after study enrollment

    Focus group session transcripts will undergo hybrid inductive-deductive thematic analysis to identify themes in participant reported needs and priorities, informing the development of intervention targets, format, and design. Sessions will be conducted according to the generative co-design framework for healthcare innovation and integrated with Photovoice procedures. Focus groups will be audio-recorded, professionally transcribed, and de-identified prior to analysis. Transcripts and associated metadata will be imported into a secure, password-protected qualitative data management software platform to facilitate mixed-methods analysis.