For most parents, the day their child is born is one of the most joyous occasions of their lifetime. And, for most of those parents, one of their first reactions is the sense of relief to see their child is a normal and healthy baby. But, for many parents, that birth is the beginning of a long struggle with chronic illness.
Chronically ill children are those with either serious or chronic physical, medical and/or developmental conditions that require extensive preventative and maintenance care beyond what is required of typically healthy children. The most common chronic illnesses in children are asthma, diabetes, cancer, AIDS, and congenital heart problems. According to the American Academy of Pediatrics, 15 to 20 million children have severe health conditions that are likely to require extensive daily caregiving.
Regardless of the disease, the stress suffered by families is remarkably similar. Mothers and fathers both typically experience guilt, anger and sheer exhaustion. Mothers experience lack of confidence in illness management, assume primary responsibility for that management and see the illness as the foreground of family life. Fathers, on the other hand, generally experience feelings of lower self-esteem and experience more negative effects of the illness on themselves and their work.
Chronic illness among children can be tough on siblings as well. Research has shown that siblings of children with chronic illness can also experience low self-esteem, social withdrawal, increased physical complaints, and have difficulty at school.
While the strain of chronic illness can seem overwhelming to families, support IS available! Many hospitals, physician’s offices and clergy can guide parents to support groups and respite care organizations that can ease the burden and lighten the spirits of families struggling with chronic illness.
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