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

Published

Journal Article

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.

Full Text

Duke Authors

Cited Authors

  • Dorner, RA; Boss, RD; Burton, VJ; Raja, K; Lemmon, ME

Published Date

  • April 2020

Published In

Volume / Issue

  • 62 / 4

Start / End Page

  • 500 - 505

PubMed ID

  • 31909496

Pubmed Central ID

  • 31909496

Electronic International Standard Serial Number (EISSN)

  • 1469-8749

Digital Object Identifier (DOI)

  • 10.1111/dmcn.14457

Language

  • eng

Conference Location

  • England