About this study
Families often talk about how hope helps them cope with the stress and uncertainty of cancer treatment. But hope can mean many different things and can change over time. There is no standard way in health care to talk about hope with families in this situation. Because of this gap, doctors and researchers need a better understanding of how hope is experienced during cancer treatment.
This study is being done to learn what hope means to patients, caregivers, and clinicians during cancer treatment. The study focuses on children and young adults with advanced cancer who are starting a phase 1 or phase 2 clinical trial, along with their parents or other caregivers. Phase 1 and 2 clinical trials are research studies that test new treatments. Clinicians who care for these patients are also included in the study. The goal is to listen carefully to real experiences so that future support for families can be improved.
The study has 2 main parts. In the first part, patients and caregivers meet with a researcher about every 3 months for up to a year. They are asked to share photos and stories that show what hope looks like to them at that time. Photos are used because some feelings are hard to explain with words alone. Participants also answer a short set of questions about hope. Researchers may also talk with clinicians to better understand the patient’s medical care.
In the second part of the study, patients, caregivers, and clinicians join small-group discussions. These small groups talk about what helps them feel hopeful, what makes hope harder, and what kind of support families may need. Together, the group shares ideas to help design a future supportive care tool.
What we learn from this study may guide better communication and support for families facing advanced cancer in the future.
Eligibility overview
- Child or young adult with advanced cancer that is relapsed, refractory, or without curative standard‑of‑care options
- Patient is enrolled or planning to enroll on a phase 1 or phase 2 cancer clinical trial
- Patient age is 12 years or older or a parent or legally authorized caregiver of a child of any age with advanced cancer
- Treating clinicians involved in the patient’s care may also take part