Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content
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| 024 | 7 | 0 | |a 10.1007/s10897-014-9780-x |2 doi |
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| 245 | 0 | 0 | |a Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content |h [Elektronische Daten] |c [Beth Potter, Holly Etchegary, Stuart Nicholls, Brenda Wilson, Samantha Craigie, Makda Araia] |
| 520 | 3 | |a 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. | |
| 540 | |a National Society of Genetic Counselors, Inc., 2014 | ||
| 690 | 7 | |a Newborn screening |2 nationallicence | |
| 690 | 7 | |a Education |2 nationallicence | |
| 690 | 7 | |a Consent |2 nationallicence | |
| 700 | 1 | |a Potter |D Beth |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | |
| 700 | 1 | |a Etchegary |D Holly |u Memorial University/Eastern Health, St John's, NFLD, Canada |4 aut | |
| 700 | 1 | |a Nicholls |D Stuart |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | |
| 700 | 1 | |a Wilson |D Brenda |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | |
| 700 | 1 | |a Craigie |D Samantha |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | |
| 700 | 1 | |a Araia |D Makda |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | |
| 773 | 0 | |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 400-408 |x 1059-7700 |q 24:3<400 |1 2015 |2 24 |o 10897 | |
| 856 | 4 | 0 | |u https://doi.org/10.1007/s10897-014-9780-x |q text/html |z Onlinezugriff via DOI |
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| 900 | 7 | |a Metadata rights reserved |b Springer special CC-BY-NC licence |2 nationallicence | |
| 908 | |D 1 |a research-article |2 jats | ||
| 949 | |B NATIONALLICENCE |F NATIONALLICENCE |b NL-springer | ||
| 950 | |B NATIONALLICENCE |P 856 |E 40 |u https://doi.org/10.1007/s10897-014-9780-x |q text/html |z Onlinezugriff via DOI | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Potter |D Beth |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Etchegary |D Holly |u Memorial University/Eastern Health, St John's, NFLD, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Nicholls |D Stuart |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Wilson |D Brenda |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Craigie |D Samantha |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Araia |D Makda |u Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada |4 aut | ||
| 950 | |B NATIONALLICENCE |P 773 |E 0- |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 400-408 |x 1059-7700 |q 24:3<400 |1 2015 |2 24 |o 10897 | ||