Literature DB >> 22350979

Parental information use in the context of newborn bloodspot screening. An exploratory mixed methods study.

Stuart G Nicholls1, K W Southern.   

Abstract

The aim of this study was to investigate how parents select and use information sources when considering newborn bloodspot screening. Mixed methods approach using semi-structured interviews (n = 18) and a self-completion postal questionnaire (n = 154) conducted with parents of children who had undergone newborn bloodspot screening. Qualitative data was assessed using a thematic analysis approach with quantitative data analyzed using multinomial logistic regression. Parents used a limited range of information. In the UK, maternity services are largely delivered by the midwife and the healthcare practitioner was the main information source for parents, with only half of parents using official health service leaflets. Barriers included the provision of information post-natally and with other non-healthcare materials. Neither number of children, age group, education level, nor income were significantly associated with the number of information sources used. Nor were they associated with the information source indicated as most important. The midwife is well placed to act as a gatekeeper for parents seeking information about newborn bloodspot screening. Even when additional sources are used, the midwife remains a prominent source of information. Furthermore, the use of written materials is dependent upon appropriate delivery and consequently delivery is essential to information use.

Entities:  

Year:  2012        PMID: 22350979      PMCID: PMC3461221          DOI: 10.1007/s12687-012-0082-4

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  11 in total

1.  Incorporating newborn screening into prenatal care.

Authors:  Elizabeth D Campbell; Lainie Friedman Ross
Journal:  Am J Obstet Gynecol       Date:  2004-04       Impact factor: 8.661

2.  Assessment of newborn screening parent education materials.

Authors:  Connie L Arnold; Terry C Davis; Janet Ohene Frempong; Sharon G Humiston; Anna Bocchini; Estela M Kennen; Michele Lloyd-Puryear
Journal:  Pediatrics       Date:  2006-05       Impact factor: 7.124

3.  Recommendations for effective newborn screening communication: results of focus groups with parents, providers, and experts.

Authors:  Terry C Davis; Sharon G Humiston; Connie L Arnold; Joseph A Bocchini; Pat F Bass; Estela M Kennen; Anna Bocchini; Penny Kyler; Michele Lloyd-Puryear
Journal:  Pediatrics       Date:  2006-05       Impact factor: 7.124

4.  Mothers' accounts of screening newborn babies in Wales (UK).

Authors:  Evelyn P Parsons; Janet T King; Janet A Israel; Don M Bradley
Journal:  Midwifery       Date:  2006-08-22       Impact factor: 2.372

5.  Informed choice and public health screening for children: the case of blood spot screening.

Authors:  Katrina M Hargreaves; Ruth J Stewart; Sandy R Oliver
Journal:  Health Expect       Date:  2005-06       Impact factor: 3.377

6.  Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts.

Authors:  Donald O Case; James E Andrews; J David Johnson; Suzanne L Allard
Journal:  J Med Libr Assoc       Date:  2005-07

7.  Qualitative study of evidence based leaflets in maternity care.

Authors:  Helen Stapleton; Mavis Kirkham; Gwenan Thomas
Journal:  BMJ       Date:  2002-03-16

8.  Information and informed consent for neonatal screening: opinions and preferences of parents.

Authors:  Symone Detmar; Esther Hosli; Nynke Dijkstra; Niels Nijsingh; Marlies Rijnders; Marcel Verweij
Journal:  Birth       Date:  2007-09       Impact factor: 3.689

9.  Newborn screening: an appeal for improved parent education.

Authors:  Audrey Tluczek; Kate Murphy Orland; Sara Wolfgram Nick; Roger L Brown
Journal:  J Perinat Neonatal Nurs       Date:  2009 Oct-Dec       Impact factor: 1.638

10.  Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers.

Authors:  Makda H Araia; Brenda J Wilson; Pranesh Chakraborty; Kimberly Gall; Christina Honeywell; Jennifer Milburn; Tim Ramsay; Beth K Potter
Journal:  Genet Med       Date:  2012-08-16       Impact factor: 8.822

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  5 in total

1.  Young adults' pre-existing knowledge of cystic fibrosis and sickle cell diseases: implications for newborn screening.

Authors:  Melissa Noke; Fiona Ulph
Journal:  J Genet Couns       Date:  2013-06-28       Impact factor: 2.537

2.  Framing optional genetic testing in the context of mandatory newborn screening tests.

Authors:  Sarah E Lillie; Beth A Tarini; Nancy K Janz; Brian J Zikmund-Fisher
Journal:  BMC Med Inform Decis Mak       Date:  2015-06-27       Impact factor: 2.796

Review 3.  The Role of Information Provision in Economic Evaluations of Newborn Bloodspot Screening: A Systematic Review.

Authors:  Stuart J Wright; Cheryl Jones; Katherine Payne; Nimarta Dharni; Fiona Ulph
Journal:  Appl Health Econ Health Policy       Date:  2015-12       Impact factor: 2.561

4.  Parental decision-making and acceptance of newborn bloodspot screening: an exploratory study.

Authors:  Stuart G Nicholls; Kevin W Southern
Journal:  PLoS One       Date:  2013-11-12       Impact factor: 3.240

5.  Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers.

Authors:  Makda H Araia; Brenda J Wilson; Pranesh Chakraborty; Kimberly Gall; Christina Honeywell; Jennifer Milburn; Tim Ramsay; Beth K Potter
Journal:  Genet Med       Date:  2012-08-16       Impact factor: 8.822

  5 in total

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