ABSTRACT
This investigation focused on the information-seeking behaviors of parents (N = 38) whose newborn had received a positive screening result for cystic fibrosis. Roughly half of the participants actively sought information about their child's potential disease prior to the clinic visit. The most common sources of information were the Internet, pediatricians, and family physicians. Analysis of behavior during the clinic visit showed rates of question asking that were judged as low, but they were comparable to the results of other studies. It was observed that parents occasionally would collaborate in the production of a single question. More educated parents tended to produce such questions more frequently. Importantly, frequency of collaborative questions was positively correlated with enhanced knowledge of cystic fibrosis six weeks after the clinic visit and with apparent dissatisfaction with the counseling interaction.
Subject(s)
Cystic Fibrosis/diagnosis , Information Seeking Behavior , Parents/psychology , Adult , Female , Genetic Counseling , Health Knowledge, Attitudes, Practice , Humans , Infant, Newborn , Internet , Male , Neonatal Screening , Professional-Family Relations , Sweat/chemistryABSTRACT
The dramatic increase in genetic knowledge engendered by the mapping of the human genome brings with it a need for greater understanding of how to effectively communicate genetic risk information. Using a combination of observational and self-report data, this study examined potential threats to effective risk communication in 17 families whose infant received a positive newborn screening test for cystic fibrosis. Five specific problems are identified: (a) copresence of interactants (or the lack thereof), (b) disruptions in the communication environment, (c) variations in parents' initial knowledge, (d) rigidity in counselors' behavioral scripts, and (e) emotional interference with information acquisition. We advance 3 proposals for research aimed at improving our understanding of these potential threats.
Subject(s)
Communication Barriers , Cystic Fibrosis/genetics , Genetic Counseling , Adolescent , Adult , Cystic Fibrosis/diagnosis , Genetic Testing , Humans , Infant, Newborn , Parents , Videotape Recording , WisconsinABSTRACT
With the tremendous expansion of knowledge that will come from advances in the Human Genome Project, the question of how to effectively communicate genetic risk information will assume increasing importance. This article reports research intended to provide a descriptive foundation for future inquiry. Drawing on information from medical professionals and videotaped interactions of families whose infant has tested positive for cystic fibrosis, the authors present an analysis of the phases of communication following newborn screening. From this analysis, it can be seen that genetic counseling is best viewed as part of a larger process of risk communication.
