title: Ethical dilemmas in the pediatric hemophilia community.
abstract: How can pediatric nurses best advocate appropriately and knowledgeably for patients with hemophilia in our rapidly changing health care system. This commentary raises many questions, questions that can provide the basis for discussion among parents, providers, and payors. Children with hemophilia have benefited greatly by the creation of comprehensive care teams that support home treatment (Butler, 1998). Ongoing excellence in home care can be achieved by parents' and patients' self-advocacy. The hemophilia community's self-advocacy has been so successful as demonstrated by the move to home care, self-infusion, and the Ricky Ray legislation. This community has an ownership of its preventive care and recognizes that federally funded centers of excellence exist by the use of the family's tax dollars and the patient's patronage. Hemophilia programs are a model for further examination for preventive self-care in other chronic disease states.
authors.affiliation: Olsten Health Services, Melville, NY, USA. jschaefer@mindspring.com
authors.forename: J
authors.initials: J
authors.lastname: Schaefer
mesh_terms: D002648:Child; D002675:Child, Preschool; D003152:Community Health Nursing / Q000379:methods*; D004992:Ethics, Medical; D005164:Factor IX / Q000627:therapeutic use; D005169:Factor VIII / Q000627:therapeutic use; D005260:Female; D006467:Hemophilia A / Q000188:drug therapy* / Q000451:nursing*; D006699:Home Care Services / Q000592:standards / Q000639:trends; D006801:Humans; D008297:Male; D010371:Pediatric Nursing / Q000379:methods; D011787:Quality of Health Care; D014481:United States
chemical_list: D005169:Factor VIII; D005164:Factor IX