RESUMO
With the increase in access to medical information, parents can acquire health information from multiple sources. An understanding of parents' reactions to a newborn infant's diagnosis of sickle cell anemia and how they acquire knowledge can identify parent beliefs and preferences about the process of sickle cell education. This study utilized a sequential exploratory mixed methods design. First, qualitative interviews were conducted with 8 parents of infants with sickle cell anemia to understand the process of health education. Second, quantitative surveys were conducted with 22 other parents to test qualitative findings. Parents of infants with sickle cell anemia expressed a high level of fear at the time of notification of a positive screen. Parents desired an understanding of how to identify acute complications of disease and how sickle cell will alter their child's life. Parents actively sought information at the time they were told their child had sickle cell disease. Sickle cell education should begin at time of notification of positive newborn screening results and address identified parent concerns. Health care providers should build trust with parents and provide them with immediate access to educational materials. Hematologists should work with primary care providers to develop complementary educational programs and resources.
Assuntos
Anemia Falciforme/psicologia , Educação em Saúde , Pais/psicologia , Viés , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pesquisa Qualitativa , Tamanho da AmostraRESUMO
To determine whether early coagulopathy affects the mortality associated with severe civilian pediatric trauma, trauma patients younger than 18 years admitted to a pediatric intensive care unit from 2001 to 2010 were evaluated. Patients with burns, primary asphyxiation, preexisting bleeding diathesis, lack of coagulation studies, or transferred from other hospitals more than 24 h after injury were excluded. Age, sex, race, mechanism of injury, initial systolic blood pressure, Glasgow Coma Scale score, Injury Severity Score, prothrombin time, partial thromboplastin time, platelet count, and international normalized ratio were recorded. An arterial or venous blood gas was performed, if clinically indicated. Coagulopathy was defined as an international normalized ratio greater than 1.2. The primary outcome was in-hospital mortality. Secondary outcomes were lengths of intensive care unit and hospital stay. Eight hundred three patients were included in the study. Overall mortality was 13.4%. The incidence of age-adjusted hypotension was 5.4%. Early coagulopathy was observed in 37.9% of patients. High Injury Severity Score and/or hypotension were associated with early coagulopathy and higher mortality. Early coagulopathy was associated with a modest increase in mortality in pediatric trauma patients without traumatic brain injury (TBI). In contrast, the combination of TBI and early coagulopathy was associated with a fourfold increase in mortality in this patient population. Early coagulopathy is an independent predictor of mortality in civilian pediatric patients with severe trauma. The increase in mortality was particularly significant in patients with TBI either isolated or combined with other injuries, suggesting that a rapid correction of this coagulopathy could substantially decrease the mortality after TBI in pediatric trauma patients.