Spina Bifida

VIA - Spina Bifida is a study of children and adolescents ages ten and up who live with spina bifida. One of the most common major congenital malformations, spina bifida is an incomplete development of the spinal cord that often results in partial or complete paralysis below the level of the defect. The severity of spina bifida can range from an individual who shows no signs of paralysis to paraplegia or quadriplegia.

Many individuals use wheelchairs or other mobility aids, many need regular urinary catheterization, and some have learning disabilities and other cognitive difficulties. The rate of new births with spina bifida has dropped precipitously over the last 30 years, while those who are born are living longer, creating a new health care population, young adults with special health care needs.

As part of the VIA – Transitions study, the spina bifida portion investigates the experience of living with spina bifida from the patient's perspective, seeking improved understanding of patients' day-to-day lives, their problems, issues, and concerns; examines the relationship of the patient with spina bifida and, by extension, any disabling condition, with the health care system:

their clinician-patient relationships, health care insurance/financing issues, and access to care; and focuses on challenges patients encounter and successes they celebrate as they transition from pediatric to adult care.

VIA - Spina Bifida is made possible in large part due to grant funding received from the Deborah Munroe Noonan Memorial Fund and the Christopher Reeve Paralysis Foundation.

 

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.

A participant tells what
doctors shouldn’t do
>> Watch video


A participant takes the
camcorder skiing
>> Watch video


Choosing between
crutches and a
wheelchair
>> Watch video

Requires Quicktime 7

Researchers
Core Staff:
Michael Rich
Jennifer Patashnick
Julie Polvinen
Julia Szymczak
Richard Chalfen

Other Staff:
Kevin Taylor Anderson
Julie Crinière

 
Center on Media and Child HealthPrivacy Policy & Terms of UseChildren's Hospital Boston