Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Mar 31;22(1):167.
doi: 10.1186/s12887-022-03160-1.

Pain points in parents' interactions with newborn screening systems: a qualitative study

Mike Conway  1 , Truc Thuy Vuong  2 , Kim Hart  3 , Andreas Rohrwasser  3 , Karen Eilbeck  4
Affiliations

Pain points in parents' interactions with newborn screening systems: a qualitative study

Mike Conway et al. BMC Pediatr. .

Abstract

Background & objectives: This study aims to explore and elucidate parents' experience of newborn screening [NBS], with the overarching goal of identifying desiderata for the development of informatics-based educational and health management resources.

Methods: We conducted four focus groups and four one-on-one qualitative interviews with a total of 35 participants between March and September 2020. Participants were grouped into three types: parents who had received true positive newborn screening results; parents who had received false positive results; and soon-to-be parents who had no direct experience of the screening process. Interview data were subjected to analysis using an inductive, constant comparison approach.

Results: Results are divided into five sections: (1) experiences related to the process of receiving NBS results and prior knowledge of the NBS program; (2) approaches to the management of a child's medical data; (3) sources of additional informational and emotional support; (4) barriers faced by parents navigating the health system; and (5) recommendations and suggestions for new parents experiencing the NBS process.

Conclusion: Our analysis revealed a wide range of experiences of, and attitudes towards the newborn screening program and the wider newborn screening system. While parents' view of the screening process was - on the whole - positive, some participants reported experiencing substantial frustration, particularly related to how results are initially communicated and difficulties in accessing reliable, timely information. This frustration with current information management and education resources indicates a role for informatics-based approaches in addressing parents' information needs.

PubMed Disclaimer

Conflict of interest statement

The authors have no conflicts of interest relevant to this article to disclose.

Figures

Fig. 1
Fig. 1
Summary of participant characteristics
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Fabie NAV, Pappas KB, Feldman GL. The current state of newborn screening in the United States. Pediatr Clin N Am. 2019;66:369–386. - PubMed
    1. Botkin JR. Ethical issues in pediatric genetic testing and screening. Curr Opin Pediatr. 2016;28:700–704. - PMC - PubMed
    1. Berry SA. Newborn screening. Clin Perinatol. 2015;42:441–453. - PubMed
    1. Boyle CA, Bocchini JA, Jr, Kelly J. Reflections on 50 years of newborn screening. Pediatrics. 2014;133:961–963. - PMC - PubMed
    1. Clinical and Laboratory Standards Institute . NBSo2-A2: newborn screening follow-up; approved guideline. 2. Clinical; Laboratory Standards Institute; 2013.

Publication types