Literature DB >> 23560583

Residual newborn screening samples for research: parental information needs for decision-making.

Erin Rothwell1, Lauren Clark, Rebecca Anderson, Jeffrey R Botkin.   

Abstract

PURPOSE: The purpose of this research was to identify what types of information expectant parents want to make a decision about the use of their babies' residual dried blood specimens for research. DESIGN AND METHODS: Three focus groups were conducted with pregnant women and their partners and one focus group with prenatal healthcare providers and educators.
RESULTS: Eleven categories of information needs were identified within each focus group. PRACTICE IMPLICATIONS: Providing sufficient information for parents to make informed choices will be essential to future research with residual dried blood specimens and to maintain public trust with the growing applications of this important public health program.
© 2013, Wiley Periodicals, Inc.

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Mesh:

Year:  2013        PMID: 23560583      PMCID: PMC7799500          DOI: 10.1111/jspn.12017

Source DB:  PubMed          Journal:  J Spec Pediatr Nurs        ISSN: 1539-0136            Impact factor:   1.260


  14 in total

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2.  Public attitudes regarding the use of residual newborn screening specimens for research.

Authors:  Jeffrey R Botkin; Erin Rothwell; Rebecca Anderson; Louisa Stark; Aaron Goldenberg; Michelle Lewis; Matthew Burbank; Bob Wong
Journal:  Pediatrics       Date:  2012-01-16       Impact factor: 7.124

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4.  Informing parents about newborn screening.

Authors:  Alex R Kemper; Kathryn E Fant; Sarah J Clark
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5.  The qualitative content analysis process.

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6.  Information and consent for newborn screening: practices and attitudes of service providers.

Authors:  N J Kerruish; D Webster; N Dickson
Journal:  J Med Ethics       Date:  2008-09       Impact factor: 2.903

7.  Informing parents about expanded newborn screening: influences on provider involvement.

Authors:  Robin Z Hayeems; Fiona A Miller; Julian Little; June C Carroll; Judith Allanson; Pranesh Chakraborty; Brenda J Wilson; Jessica P Bytautas; Robert J Christensen
Journal:  Pediatrics       Date:  2009-08-10       Impact factor: 7.124

8.  Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

Authors:  Erin Rothwell; Rebecca Anderson; Aaron Goldenberg; Michelle H Lewis; Louisa Stark; Matthew Burbank; Bob Wong; Jeffrey R Botkin
Journal:  Soc Sci Med       Date:  2012-02-18       Impact factor: 4.634

9.  Qualitative content analysis: a guide to paths not taken.

Authors:  D L Morgan
Journal:  Qual Health Res       Date:  1993-02

10.  Informed consent for genetic research.

Authors:  Aaron Hamvas; Katherine K Madden; Lawrence M Nogee; Michelle A Trusgnich; Daniel J Wegner; Hillary B Heins; F Sessions Cole
Journal:  Arch Pediatr Adolesc Med       Date:  2004-06
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  3 in total

1.  Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities.

Authors:  Shannon Cunningham; Kieran C O'Doherty; Karine Sénécal; David Secko; Denise Avard
Journal:  J Community Genet       Date:  2014-12-23

2.  Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.

Authors:  Jeffrey R Botkin; Erin Rothwell; Rebecca A Anderson; Nancy C Rose; Siobhan M Dolan; Miriam Kuppermann; Louisa A Stark; Aaron Goldenberg; Bob Wong
Journal:  JAMA Pediatr       Date:  2016-06-01       Impact factor: 16.193

3.  Eliciting parental support for the use of newborn blood spots for pediatric research.

Authors:  Edwina H Yeung; Germaine Buck Louis; David Lawrence; Kurunthachalam Kannan; Alexander C McLain; Michele Caggana; Charlotte Druschel; Erin Bell
Journal:  BMC Med Res Methodol       Date:  2016-02-04       Impact factor: 4.615

  3 in total

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