Sharing Hope: A Longitudinal Photo-Narrative Exploration of Hope During Phase 1/2 Clinical Trials For Pediatric Cancer
St. Jude Children's Research Hospital
Summary
The purpose of this study is to find better ways to help support families in their hopes during cancer treatment. Primary Objective * To characterize themes related to how patients and parents/caregivers narrate their experience of 'hope' when receiving cancer therapy on a phase 1/2 clinical trial, with a focus on whether, why, when, and how patients' and caregivers' hopes adapt to changing circumstances. * To engage patients, caregivers, and clinicians in focus groups to identify strengths, weaknesses, opportunities, and threats to hope during phase 1/2 clinical trial participation and facilitate the co-design of a stakeholder-driven supportive intervention related to hope based on focus group recommendations. Secondary Objective * To describe health care provider perspectives on patient and family hope and goal-care concordance in the context of phase 1/2 clinical trials.
Description
This is an observational study where findings will inform the future development of an intervention; this study itself does not involve the implementation or testing of an intervention. The research methods used to obtain observational data are photo-narrative interviews and focus groups. * Semi-structured participant-generated photo-elicitation interviews: At enrollment, participants will receive guidance on the structure, format, and purpose of photo-elicitation (also called photo-narrative or photovoice) interviews. Prior to each interview, participants will receive guidance in selecting 1…
Eligibility
- Age range
- 12+ years
- Sex
- All
- Healthy volunteers
- Not specified
Inclusion Criteria: Patient participants must * Be 12 to 25 years of age. AND * 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…
Location
- St. Jude Children's Research HospitalMemphis, Tennessee