Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content.
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 thei...
| Publicado en: | Journal of Genetic Counseling Vol. 24; no. 3; pp. 400 - 409 |
|---|---|
| Autores principales: | , , , , , |
| Formato: | Journal Article |
| Publicado: |
Wiley-Blackwell
Jun2015
|
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=102703629&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 102703629 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Jun2015 vid: 24 iid: 3 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 102703629 103800393 10.1007/s10897-014-9780-x 102703629 ppf: 400 ppct: 9 formats: fmt: @attributes: type: P tig: atl: Education and Parental Involvement in Decision-Making About Newborn Screening: Understanding Goals to Clarify Content. aug: au: Potter, Beth Etchegary, Holly Nicholls, Stuart Wilson, Brenda Craigie, Samantha Araia, Makda affil: Department of Epidemiology & Community Medicine, University of Ottawa, 451 Smyth Rd Ottawa Canada sug: subj: Consumer Health Information Health Screening In Infancy and Childhood Parental Role Decision Making, Family Theory-Practice Relationship Goals and Objectives Infant, Newborn Canada Infant, Newborn: birth-1 month ab: 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. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|