Children with special health care needs and transition  (2018)

Researcher(s):

Project Sponsor(s)

  • Texas Department of State Health Services (DSHS)

Project Categories

Children with special healthcare needs compose 15-18% of the child and adolescent population in the United States. The majority of the older subset of this group, youths with special healthcare needs, will transition to adult services and medical care within their lifetime. Transition is not a single event, but a plan with attainable goals that encompass different domains including, but not limited to, education, medical care, vocation, and in some cases estate planning and guardianship. Although creating a transition plan should be part of the care that these youths receive from their pediatrician or general practice office, only 20% of those who need it have talked with their doctors about transitioning healthcare services to an adult healthcare provider, and fewer than a third get the anticipatory guidance they feel they need to successfully transition to adult healthcare, work, and independence.

Because of their frequent engagement with youths with special healthcare needs, healthcare professionals including physicians, nurses, and social workers are uniquely situated to affect the likelihood that youth receive the anticipatory guidance that they need in their transition to adulthood. Unfortunately, healthcare providers’ knowledge of the need for transition, barriers to transition, and experience in creating a plan for transition is limited.

This project will develop a graduate-level curriculum that focuses on youths with special healthcare needs transition (ages 14-21) based in medical home practice. It will start with a pilot curriculum that will compose one, three-credit-hour course to be implemented in a graduate-level setting.

The curriculum will be developed based on a review of evidence, best practices, and feedback from focus groups conducted specifically to explore issues related to youths with special healthcare needs transition. The four focus groups will consist of youths with special healthcare needs, parents, healthcare professionals who provide medical home services to these youths, and healthcare professionals who provide services to these youths outside of a medical home.

This course will then be evaluated, amended based on the evaluation outcomes and then finalized for the Texas Department of State and Health Services.

Providing a curriculum that presents core elements of transition, coupled with experiential application of those elements to healthcare providers who are still in training offers a foundational opportunity to affect the future practice of providers, while achieving better outcomes for youths with special healthcare needs transitioning to adulthood.