Adolescent Transition Project

Medical Self-management in Transition Literature Review

It is normal and expected for parents to manage health issues for young children.  As children with disabilities age, they should manage more of their care. Little is known about transition of health self-management to adolescents and young adults with developmental disabilities. This project is a mentored research project with the Division of Human Development and Disability (DHDD) at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. It consists of an extensive literature review on current approaches, strategies, and issues in health self-management during the transition period for individuals with disabilities, with special attention to the DHDD priority conditions (spina bifida, muscular dystrophy, Fragile X, hearing loss, ADHD, and Tourette syndrome). The literature review will consist of an examination of best practices in general self-management behaviors, including medication regimen management, health care appointment scheduling, and assumption of leadership in discussions with health care providers. The review will also examine specific behaviors relevant to each priority condition, including management of continence for young people with spina bifida and elimination of knowledge gaps about health and physiology for young people with hearing loss. One purpose of this study is to inform the DHDD so that projects the agency conducts can expand to include transition age individuals and adults, and so that  best practice strategies can be utilized in these efforts.  In addition to informing DHDD, the project will consist of developing a position paper based upon the literature review and dissemination of findings to national audiences of researchers, providers, and health promotion practitioners.

 

This project is funded through the Association of University Centers on Disability/National Center for Birth Defects and Developmental Disabilities grant number CRA:2008-1