caa a22 4500 605544603 CHVBK 20210128100932.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9780-x doi (NATIONALLICENCE)springer-10.1007/s10897-014-9780-x Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content [Elektronische Daten] [Beth Potter, Holly Etchegary, Stuart Nicholls, Brenda Wilson, Samantha Craigie, Makda Araia] A challenge in designing effective education for parents about newborn screening (NBS) has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decision-making, we sought to: (1) explore how different ways of implementing NBS differ in their approaches to parental engagement in decision-making; (2) map the potential goals of education onto these "implementation models”; and (3) consider the content that may be needed to support these goals. The resulting conceptual framework supports the availability of comprehensive information about NBS for parents, irrespective of the model of implementation. This is largely because we argue that meeting parental expectations and preferences for communication is an important goal regardless of whether or notparents are actively involved in making a decision. Our analysis supports a flexible approach, in which some educational messages are emphasized as important for all parents to understand while others are made available depending on parents' preferences. We have begun to define the content of NBS education for parents needed to support specific goals. Further research and discussion is important to determine the most appropriate strategies for delivering the tailored approach to education that emerged from our analysis. National Society of Genetic Counselors, Inc., 2014 Newborn screening nationallicence Education nationallicence Consent nationallicence Potter Beth Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut Etchegary Holly Memorial University/Eastern Health, St John's, NFLD, Canada aut Nicholls Stuart Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut Wilson Brenda Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut Craigie Samantha Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut Araia Makda Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 400-408 1059-7700 24:3<400 2015 24 10897 https://doi.org/10.1007/s10897-014-9780-x text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9780-x text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Potter Beth Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut NATIONALLICENCE 700 1- Etchegary Holly Memorial University/Eastern Health, St John's, NFLD, Canada aut NATIONALLICENCE 700 1- Nicholls Stuart Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut NATIONALLICENCE 700 1- Wilson Brenda Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut NATIONALLICENCE 700 1- Craigie Samantha Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut NATIONALLICENCE 700 1- Araia Makda Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 400-408 1059-7700 24:3<400 2015 24 10897