A family perspective: how this product can inform and empower families of youth with spina bifida

Pediatr Clin North Am. 2010 Aug;57(4):919-34. doi: 10.1016/j.pcl.2010.07.012.


This article focuses on how the Life Course Model Web site can help family members build on the strengths of individuals with spina bifida and address areas of difficulty. A developmental perspective is adopted, which maintains that the Life Course Model Web site is useful at all stages of development, with the information provided for families at one stage of development building on the information provided for those at earlier stages of development. A brief overview is provided of relevant theories that supported the development of the Life Course Model. There is a review of the literature on the adjustment of families of individuals with spina bifida and the psychosocial adjustment of affected youth. How families may benefit from engagement with the 3 content areas covered by the Web site is discussed, namely child health and the transfer of medical management from parent to child (health/self-management), the development of social relationships (social relationships), and the achievement of milestones during emerging adulthood, including achievements in the areas of education and employment (education, employment, and income support).

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.
  • Review

MeSH terms

  • Computer Simulation*
  • Family / psychology*
  • Guidelines as Topic*
  • Humans
  • Internet*
  • Quality of Life / psychology*
  • Spinal Dysraphism / psychology
  • Spinal Dysraphism / therapy*
  • Young Adult