Do you have a child between the ages of 12-17 with spina bifida, spinal cord injury, traumatic brain injury, or cerebral palsy? If so, your child may be able to take part in a research study to evaluate if smartphone apps can help them manage their self-care routines. Compensation provided.
For children with spina bifida, spinal cord injury, traumatic brain injury, or cerebral palsy, daily self-care can be a challenge. The need to manage medications, track bladder and bowel routines, monitor skin health, and assess mood changes can be difficult and time consuming. Recognizing and treating problems early can prevent the development of more serious complications down the road. Researchers are evaluating new smartphone apps to help children with complex chronic conditions better manage their self-care. These apps can be used to set medication reminders, take pictures to document potential skin conditions, and report other problems that may arise. Previous studies have shown that using this type of system may help patients improve self-care management, but researchers need more information. The goal of this study is to make these apps even more useful for people living with complex health conditions.
COULD THIS STUDY BE RIGHT FOR YOUR CHILD?
- Ages 12-17
- With cerebral palsy, spina bifida, traumatic brain injury, or spinal cord injury
- Do not live in a nursing facility, group home, or personal care home
WHAT PARTICIPANTS CAN EXPECT
Participants will take part in interviews and group discussions for one session, which will be scheduled at locations and times that are convenient for you. These meetings will last about one hour. Some participants may also be asked to try the new apps on smartphones and give feedback during additional visits. These visits can take place at various convenient locations including your home. Each visit will last approximately 30-60 minutes. Smartphones may be loaned for use during the study and will be collected at the end of the study.
IRB: STUDY20020049A- MHealth Self-Management and Support System for Chronic and Complex Health Conditions (component 1 and 2)
MEET THE RESEARCHER
Andi Saptono, PhD, is an Assistant Professor of Health Information Management at the University of Pittsburgh. Since getting his doctorate in Health and Rehabilitation Sciences, Dr. Saptono has put his experience in software design and development to use by researching innovative solutions for health problems. His previous projects include ACCESS, a system to help people with visual impairments use the internet, and VISYTER, a video networking system designed to make it easier for people living in remote areas to receive medical examinations.