Exploring Hope Through Photo-Narratives in Pediatric Cancer Patients and Families During Phase 12 Cancer Clinical Trials

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.

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