• Advances in medical technology and treatment options are now able to sustain the lives of many children who, as recently as 20 years ago, may not have survived. Although the exact numbers of medically fragile children are unknown, the refinement of medical care and the increasing viability of extremely preterm and very low birth weight infants have led to dramatic increases in the number of technology-dependent children.
  • Despite the level of skill and complexity involved in caring for medically fragile children, recent social and political trends have resulted in the delivery of home-based care, in which families are required to become the primary medical caregivers for their children. Families are providing a level of care in their homes that was previously done only in hospital or nursing homes.
  • It is not uncommon to find high degrees of stress in caregivers of medically fragile children, often resulting in depression, poor physical health, and social isolation. Such consequences not only limit the ability of families to care for their children effectively, but also inhibit further the development of medically fragile children already at high risk for delays.
  • Increased financial strain, extra care taking needs, uncertainty about the future, social isolation, and fatigue are some of the hardships that have been associated with caring for sick children that in turn causes distress for parents and family.
  • The long-term care of a child with complex medical needs places strains on many parents’ marriage and on the other children in the family due to the consuming nature of the child’s care requirements.
  • Recurring stresses associated with caring for a medically fragile child do not become less disruptive over time and the relentless pressure may lead to general decompensation.