Publications (2)3.89 Total impact
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Article: Newborn screening for cystic fibrosis: parents' preferences regarding counseling at the time of infants' sweat test.
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ABSTRACT: Newborn screening (NBS) protocols for cystic fibrosis (CF) are the first regional population-based programs to incorporate DNA analysis into their procedures. Research about these programs can inform policy and practice regarding how best to counsel families with abnormal NBS results. The grounded theory method guided interviews with 33 families whose infants had abnormal CF NBS results. A dimensional analysis of these interviews provided a theoretical framework describing parents' preferences regarding counseling during their infant's sweat test appointment. This framework describes the contexts and characteristics of the two main dimensions of parents' preferences: factual information and emotional support. Factual information included learning about the probability of a CF diagnosis, CF disease facts, sweat test procedure, and CF genetics. Social support consisted of offering parents a choice about the timing and amount of CF information, showing empathy for their distress, instilling hope, personalizing counseling, and providing hospitality. This framework also explains the consequences of counseling that matched versus mismatched parental preferences in these domains. Counseling that matched parents preferences reduced parents' distress while mismatched counseling tended to increase parents' worry about their infant.Journal of Genetic Counseling 09/2006; 15(4):277-91. · 1.77 Impact Factor -
Article: Electrogastrography in children with cystic fibrosis.
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ABSTRACT: Patients with cystic fibrosis often develop upper gastrointestinal symptoms, which may be due to abnormal gastric motor function. The aim of the study is to determine the characteristics of gastric electrical activity in patients with cystic fibrosis and to compare electrogastrography patterns in symptomatic and asymptomatic patients. Electrogastrography was recorded in 14 symptomatic and 8 asymptomatic children with CF. Both 30-min baseline and 30-min postprandial recordings was obtained. Dominant frequency cycles per minute, rhythm index, and power in decibels were obtained for the fasting and postprandial periods. The percentage of normal gastric waves was not affected by the meal and was significantly low in symptomatic and asymptomatic cystic fibrosis patients. Tachygastria was the most frequent dysrhythmia in both groups. Decreased postprandial power was seen in three symptomatic patients and one patient had no change. The percentage of normal gastric slow waves was low in symptomatic and asymptomatic cystic fibrosis patients. Tachygastria was the most frequent dysrhythmia. Decreased postprandial power was seen only in symptomatic patients.Digestive Diseases and Sciences 05/2002; 47(4):699-703. · 2.12 Impact Factor
