Skip to main content
SpringerLink
Log in

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

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. The booklet is available at: http://www.screening.nhs.uk/annbpublications (accessed 10th November 2011)

References

  • Araia M, Chakraborty P, Gall K, Honeywell C, Milburn J, Ramsay T, Wilson B (2010) Factors associated with mothers’ knowledge of and satisfaction with newborn screening education. In: APHL Newborn Screening and Genetics Testing Symposium (Orlando, FL). Available at: http://www.aphl.org/profdev/conferences/proceedings/Pages/2010APHLNBSGTSymposium.aspx

  • Arnold CL, Davis TC, Frempong JO, Humiston SG, Kennen EM, Lloyd-Puryear M, Bocchini A (2006) Assessment of newborn screening parent education materials. Pediatrics 117:320–325

    Article  Google Scholar 

  • Boyatzis RE (1998) Transforming qualitative information. Sage, Thousand Oaks

    Google Scholar 

  • Campbell E, Ross LF (2004) Incorporating newborn screening into prenatal care. Am J Obstet Gynecol 190:876–877

    Article  PubMed  Google Scholar 

  • Case DO, Andrews JE, Johnson JD, Allard SL (2005) Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 93:353–362

    PubMed  Google Scholar 

  • Creswell JW, Plano Clark VL (2007) Designing and conducting mixed methods research. Sage, Thousand Oaks

    Google Scholar 

  • Davey A, French D, Dawkins H, O’Leary P (2005) New mothers’ awareness of newborn screening, and their attitudes to the retention and use of samples for research purposes. Genom Soc Policy 1:41–51

    Google Scholar 

  • Davis TC, Humiston SG, Arnold CL, Bocchini JA Jr, Bass PF III, Kennen EM, Bocchini A, Kyler P, Lloyd-Puryear M (2006) Recommendations for effective newborn screening communication: results of focus groups with parents, providers, and experts. Pediatrics 117:S326–S340

    PubMed  Google Scholar 

  • Detmar S, Hosli E, Dijkstra N, Nijsingh N, Rijnders M, Verweij M (2007) Information and informed consent for neonatal screening: opinions and preferences of parents. Birth 34:238–244

    Article  PubMed  Google Scholar 

  • Fielding NG, Lee RL (1998) Computer analysis and qualitative research. Sage, London

    Google Scholar 

  • Hargreaves K, Stewart R, Oliver S (2004) Pilot study of pre-screening parent leaflet on newborn blood spot screening and health professional communication guidelines. UK Newborn Screening Programme Centre, London

    Google Scholar 

  • Hargreaves K, Stewart R, Oliver S (2005) Informed choice and public health screening for children: the case of blood spot screening. Heal Expect 8:161–171

    Article  Google Scholar 

  • SPSS Inc (2008) SPSS for Windows, Rel. 17

  • Miles MB, Huberman AM (1994) Qualitative data analysis: an expanded sourcebook. Sage, Thousand Oaks

    Google Scholar 

  • Parsons EP, King JT, Israel JA, Bradley DM (2007) Mothers’ accounts of screening newborn babies in Wales (UK). Midwifery 23:59–65

    Article  PubMed  Google Scholar 

  • Stapleton H, Kirkham M, Thomas G (2002) Qualitative study of evidence based leaflets in maternity care. Br Med J 324:639–644

    Article  Google Scholar 

  • Stewart R, Oliver S (2003) What is known about communication with parents about newborn bloodspot screening? UK Newborn Screening Programme Centre, London

    Google Scholar 

  • Strauss AL (1996) Qualitative analysis for social scientists. Cambridge University Press, Cambridge

  • Tluczek A, Orland KM, Nick SW, Brown RL (2009) Newborn screening: an appeal for improved parent education. J Perinatal-Neonatal Nurs 23:326–334

    Google Scholar 

  • Tymstra T (1986) False positive results in screening tests: experiences of parents of children screened for congenital hypothyroidism. Fam Pract 3:92–96

    Article  PubMed  CAS  Google Scholar 

  • UK Newborn Screening Programme Centre (2008) Guidelines for newborn blood spot sampling. A UK National Screening Committee, London

    Google Scholar 

  • Wilson TD (1999) Information behaviour: an interdisciplinary perspective. Inf Process Manag 33:551–572

    Article  Google Scholar 

Download references

Acknowledgments

The authors would like to thank Mrs. Elaine Hanmer at Alder Hey Children’s NHS Foundation Trust, Mrs. Liz Eccleston at East Cheshire NHS Trust as well as the NCT and Sure Start branches for their assistance with recruitment. Thanks also to all the parents who took part, those involved in the development of the questionnaire, including representatives of Save Babies Through Screening Foundation UK, Dr. Mairi Levitt at Lancaster University for her comments and support and to Mrs. Dawn Fox-Davies and Dr. Ingrid Holme for their constructive comments on earlier drafts of this article.

Competing interests

None declared.

Funding

Dr. S.G. Nicholls was funded by an Economic and Social Research Council (ESRC) Postgraduate Studentship PTA-031-2006-00013.

Author information

Authors and Affiliations

  1. Department of Epidemiology and Community Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, Canada, K1H 8M5

    Stuart G. Nicholls

  2. Department for Women’s and Children’s Health, University of Liverpool, Liverpool, UK

    K. W. Southern

Authors
  1. Stuart G. Nicholls
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. K. W. Southern
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Stuart G. Nicholls.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Nicholls, S.G., Southern, K.W. Parental information use in the context of newborn bloodspot screening. An exploratory mixed methods study. J Community Genet 3, 251–257 (2012). https://doi.org/10.1007/s12687-012-0082-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-012-0082-4

Keywords

Search

Navigation