This study explores how children with Down syndrome in remission from leukemia and their families experience survivorship, focusing on their daily lives, support systems and strengths and skills gained through their experience.
Who can participate?
Caregiver eligibility:
- Age 18 or older
- Capable of providing information about child's clinical symptoms and cancer history
Participant with Down syndrome eligibility:
- Ages 5 to 21
- Diagnosed with leukemia between ages 0 and 14 confirmed
- Between 6 months and 5 years after their last cancer treatment
Who cannot participate?
- Participants with a history of moderate or severe traumatic brain injury
- Participants currently undergoing treatment for another type of cancer
Where does this study take place?
Study team can meet in-person or virtually with participants within the United States. No travel is required for the study from the families.
What activities does this study involve?
- Two caregiver interviews
- One child and parent interview
- Recorded activity observations
- Caregiver questionnaires
What is the estimated time commitment of this study?
4.5 to 6 hours
What languages does this study support?
English
Is compensation provided?
Yes
If you are interested in joining the Exploring Quality of Life in Children With Down Syndrome After Leukemia study, please contact the research team at ausderaulab@education.wisc.edu.
IRB # 2025-1850