About this study
When a child has cancer, doctors and families do not always know what will happen. They may need to make important choices even when there are many unknowns. Talking about this uncertainty can be hard. Doctors have little guidance on how to have these conversations with families. This study aims to find better ways for doctors and families to talk about a child’s cancer and how uncertainty may affect them
The FOCUS study includes parents whose child died from cancer. It also includes doctors who cared for those children. Researchers will talk with parents and doctors in separate interviews. They will ask about times when the future was uncertain during cancer treatment and how they experienced not knowing what would happen. They will ask for ideas on the best ways to talk about these hard topics.
Each person in the study will take part in one interview that lasts about 30–90 minutes. The interview can be done in person or by phone. Parents and doctors will be invited to meet again after the interviews to see what we learned from the study.
Researchers will look for common themes in the interviews to understand different experiences with talking about uncertainty. They will share recommendations from parents and oncologists about how we should talk about uncertainty during cancer treatment. They will also learn how parents and oncologists feel uncertainty affected them and the child.
What researchers learn may help doctors have clear, compassionate conversations with families facing uncertainty. It may also help improve support for families during a child's illness and after the death of a child.
Eligibility overview
- Adults age 18 or older, or adults who are legally independent (emancipated)
- Parents whose child who received cancer care at St. Jude and died 6–24 months ago
- The child's main cancer doctor (primary oncologist) at St. Jude