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Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.

Publication ,  Journal Article
Dorner, RA; Boss, RD; Burton, VJ; Raja, K; Lemmon, ME
Published in: Dev Med Child Neurol
April 2020

AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. METHOD: This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. RESULTS: Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. INTERPRETATION: Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. WHAT THIS PAPER ADDS: Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.

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Published In

Dev Med Child Neurol

DOI

EISSN

1469-8749

Publication Date

April 2020

Volume

62

Issue

4

Start / End Page

500 / 505

Location

England

Related Subject Headings

  • Qualitative Research
  • Pediatrics
  • Patient Preference
  • Parents
  • Male
  • Intensive Care Units, Neonatal
  • Infant, Newborn
  • Humans
  • Female
  • Developmental Disabilities
 

Citation

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Dorner, R. A., Boss, R. D., Burton, V. J., Raja, K., & Lemmon, M. E. (2020). Parent preferences for neurodevelopmental screening in the neonatal intensive care unit. Dev Med Child Neurol, 62(4), 500–505. https://doi.org/10.1111/dmcn.14457
Dorner, Rebecca A., Renee D. Boss, Vera Joanna Burton, Katherine Raja, and Monica E. Lemmon. “Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.Dev Med Child Neurol 62, no. 4 (April 2020): 500–505. https://doi.org/10.1111/dmcn.14457.
Dorner RA, Boss RD, Burton VJ, Raja K, Lemmon ME. Parent preferences for neurodevelopmental screening in the neonatal intensive care unit. Dev Med Child Neurol. 2020 Apr;62(4):500–5.
Dorner, Rebecca A., et al. “Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.Dev Med Child Neurol, vol. 62, no. 4, Apr. 2020, pp. 500–05. Pubmed, doi:10.1111/dmcn.14457.
Dorner RA, Boss RD, Burton VJ, Raja K, Lemmon ME. Parent preferences for neurodevelopmental screening in the neonatal intensive care unit. Dev Med Child Neurol. 2020 Apr;62(4):500–505.
Journal cover image

Published In

Dev Med Child Neurol

DOI

EISSN

1469-8749

Publication Date

April 2020

Volume

62

Issue

4

Start / End Page

500 / 505

Location

England

Related Subject Headings

  • Qualitative Research
  • Pediatrics
  • Patient Preference
  • Parents
  • Male
  • Intensive Care Units, Neonatal
  • Infant, Newborn
  • Humans
  • Female
  • Developmental Disabilities