Coping with Crisis and HandicapFor over 20 years I have accepted the challenge and had the privilege of caring for sick children, agonizing with their parents during periods of serious illness, which were sometimes fatal. Because of my particular interest in and concern about birth defects and genetic disease, many of these children had severe disabling handicaps, which were often genetic and included mental retardation. Hence care of these children and their families was often complicated by the presence of serious or profound genetic defects. The initial realization of the nature of the disorder invariably led to emotional . difficulties and inevitably later spawned chronic distress. For some children inexorable deterioration led to untimely deaths, while the parents agonized over their handi capped, chronically ill, or defective-but nevertheless loved--- |
Contents
The Child Dying in the Hospital | 3 |
Care of the Dying Child at Home | 13 |
The Bereaved Parent | 25 |
Copyright | |
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adolescents adults anticipatory grief Autism Child autistic children behavior bereaved parents Boston Boston University burned cancer Center CHALLELA Child Psychiatry childhood chronically ill Clin clinical communication concerned cope court cystic fibrosis Death and Dying decision developmental developmentally disabled diagnosis disabled discussion disease Disord dying child effective emotional Ethics Eunice Kennedy Shriver Euthanasia experience father fear feelings funeral genetic going grief Grollman guilt Harvard Medical School Health hospital human important individual infantile autism Institute intervention living loss Massachusetts Massachusetts General Hospital ment mentally retarded MILUNSKY mother mourning myelomeningocele normal Nurs nurse pain Pediatr physician problems professionals Psychol question Rabbi reactions relationship religious Research responsibility retarded child retarded persons Schizophr sex education sexual siblings social society staff sterilization suicide syndrome talk terminally ill Thanatology things treatment understanding University York youngster