Transitions

VIA - Transitions is an eight year longitudinal application of VIA (2000-2005) to the study of the experiences of adolescents and young adults who have chronic, function limiting conditions that historically proved fatal during childhood. Because of improvements in medical technology and care strategies, these young people are living well into adulthood, where they are faced with a medical care dilemma.

Do they continue to obtain health care from the pediatric system, which is well-versed in the care of their chronic condition, but which cannot provide effective adult-oriented care? Or do they transfer their care to the adult health care system, where they will be treated age-appropriately, but where the care of their condition may suffer due to internists’ lack of training or experience in its management in an adult? Currently, there is no universal protocol for transitioning this new health care population and both individual patients and the health care system suffer.

VIA - Transitions studies the experiences of young people with four conditions that are exemplars of the broader population of young adults with special health care needs, sickle cell disease, spina bifida, cystic fibrosis, and perinatally acquired HIV. Although the transition from adolescence to adulthood is not easy for any young person, for those with sickle cell disease, spina bifida, cystic fibrosis, and HIV, the need for increased independence coupled with the severity and chronic nature of their condition adds another layer of complexity.

VIA - Transitions will follow approximately thirty adolescents as they create three visual narratives: the first while they are still in the pediatric system, the second while they are in the process of transferring their health care, and the third when they are in adult-oriented health care, or at points several months apart if those milestones are not reached during the timeframe of the study.

VIA - Transitions is made possible in large part due to grant #K23 HD01296 from the National Institute of Child Health and Human Development as well as condition specific grants from the Deborah Munroe Noonan Foundation and the Christopher Reeve Paralysis Foundation.

Spina
Spina Bifida
Spina bifida is a birth defect of the spinal cord that often results in many patients requiring wheelchairs and other medical technology.
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Sickle Cell Disease
Sickle cell disease is an inherited condition affecting red blood cells which can cause pain crises, anemia, serious infections, and damage to vital organs.
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Cystic Fibrosis
Cystic fibrosis is an inherited condition which primarily affects the mucus production of many of the body's organs and can cause problems with breathing and digestion and makes the patient susceptible to bacterial infections.
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HIV
Human Immunodeficiency Virus (HIV) is a viral infection that compromises the human immune system, which may lead to Acquired Immune Deficiency Syndrome (AIDS).
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Publications
View Rich, M., J. L. Patashnick, et al. (2005). "Achieving independence: The role of parental involvement with adolescents with spina bifida." Journal of Adolescent Health36(2): 129
 
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