They do this through normalization, making necessary changes in their lives and adjusting to the presence of the chronic illness. These families are considered resilient that is, they are able to recover from adversities associated with chronic illness. However, various studies show that some families reorganize and actually become stronger in response to a situational crisis. A situational crisis is an unexpected crisis for which the family’s usual problem-solving abilities are not adequate. For children, it is difficult to predict accurately the progression of many serious, long-term illnesses ( Ullrich, Duncan, Joselow, et al., 2011).Ĭhronic illness is stressful and can create situational crises for families. This is referred to as the illness trajectory the course of a chronic illness and the impact on the lives of all those involved. Despite health care advances, the child and family must live with a constant physical problem and uncertainty that require consistent, ongoing attention and adaptation. Such care, which includes psychosocial support, is the most desirable and cost-effective care for both child and family.Īlthough improved quality of life and longevity are positive developments, they do present certain difficulties. Children with special needs can now be safely cared for in the home setting, with minimal periods of hospitalization. Improvements in technology, reimbursement provisions (e.g., insurance, state and federal funding), and allocation of health care resources have all affected the family’s role in caring for the child with a chronic illness. The Family of the Child with Special Health Care Needs
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