About this study
When a child has cancer, families often want to know information to help them make decisions and plan for the future. Research shows that when families understand what is happening and the choices they have, they can make decisions that match their values and wishes. Talking openly with the medical team helps everyone work together. The RIGHTimeCPV study tries to support families by making sure that these talks meet the goals of everyone involved.
In this study, each family chooses someone they trust from the care team. This person is called a communication preferences companion (CPC). The CPC talks with the family about how they would like to hear updates. Some families want to hear everything at once. Others like to get small pieces of information over time. The CPC then shares this with the child’s doctor so future talks are more helpful.
Families might also have a special meeting called a communication preferences visit. During this visit, they talk about what they want to know, their worries, and how they feel about the future. These visits are recorded so that researchers can learn how to improve communication. All recordings are kept confidential, and the big-picture findings that we learn cannot be linked to any family. Families will also fill out surveys and may be asked to talk with researchers about their experience to help improve this process for future families.
This study includes children of all ages. Kids who are 12 or older can join in the visits and answer surveys. Younger kids can join some parts if they want to. A psychologist will always be nearby to help if the child or family feels upset.
The goal of the RIGHTimeCPV study is to learn insights and feedback from patients and their families about the best way to talk about how cancer may impact the future for a patient and family. If this works well, other hospitals may use the same ideas to support families. The study hopes to make these talks easier and more personal for everyone.
Eligibility overview
- Patient: age 12–25
- Cancer diagnosis with poor prognosis
- Parent or other caregiver: age 18 and older