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J Perinatol. 2018 Apr;38(4):386-391. doi: 10.1038/s41372-017-0029-z. Epub 2018 Feb 22.

No question too small: development of a question prompt list for parents of critically ill infants.

Author information

1
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA. monica.lemmon@duke.edu.
2
Department of Pediatrics, Duke University Medical Center, Durham, NC, USA. monica.lemmon@duke.edu.
3
Duke-Margolis Center for Health Policy, Duke University, Durham, NC, USA. monica.lemmon@duke.edu.
4
Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
5
Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
6
Berman Institute of Bioethics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
7
Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.
8
School of Nursing, Duke University, Durham, NC, USA.
9
Duke-Margolis Center for Health Policy, Duke University, Durham, NC, USA.
10
Fuqua School of Business, Duke University, Durham, NC, USA.
11
Sanford School of Public Policy, Duke University, Durham, NC, USA.

Abstract

OBJECTIVE:

To develop a question prompt list tailored to the needs of parents of critically ill infants at risk of neurodevelopmental impairment.

STUDY DESIGN:

Question content was derived from audio-recorded neonatal intensive care unit family meetings and interviews with parents of infants treated with therapeutic hypothermia. Question content was refined using clinician focus groups. Acceptability testing was performed with parents and clinicians caring for infants in the neonatal intensive care unit.

RESULTS:

All clinicians and parents found the QPL content acceptable. Parents universally endorsed that the question prompt list was useful to them and would help them prepare for a meeting with their infant's healthcare team.

CONCLUSION:

This question prompt list, designed for parents of critically ill infants, is acceptable to parents and clinicians, and can be used in the acute neonatal course to facilitate parent engagement in family meetings.

PMID:
29472708
DOI:
10.1038/s41372-017-0029-z
[Indexed for MEDLINE]

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