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Parents' perceptions of their infants' participation in randomized controlled trials

journal contribution
posted on 2023-06-07, 17:57 authored by Kim Cartwright, Liam Mahoney, Susan Ayers, Heike Rabe
OBJECTIVE To explore parents' perceptions of their infants' participation in randomized control trials (RCTs) and the implications of the RCT for their infant and themselves. DESIGN A qualitative study using semistructured interviews. SETTING Participants were identified from neonatal intensive care unit (NICU) clinical registers and from responses to an advertisement put on the website of United Kingdom special care baby charity, BLISS. Interviews were conducted with parents face-to-face in their homes or over the telephone. PARTICIPANTS Sixteen parents of 12 infants born prematurely or with complications at full term and who had participated in one of three RCTs while receiving intensive care in one of seven NICUs. METHODS Interviews were audio-taped or digitally recorded, transcribed verbatim, and analyzed using systematic thematic analysis using WinMax qualitative software. RESULTS Five main themes emerged from the data. The themes were parents' immediate reactions to being approached about RCT enrollment, interactions between parents and clinicians upon the approach of enrollment and during the RCT, making the decision to enroll their infants, implications of the RCT for parents, and effects of the RCT on the infants. CONCLUSIONS Clinicians should be encouraged to approach parents about enrollment of their infants in clinical research given that parents reported mostly positive experiences related to this participation. However, appropriate measures should be taken to ensure that the individual needs of parents are being met throughout the entire research process from enrollment to follow-up.

History

Publication status

  • Published

Journal

Journal of Obstetric, Gynecologic, and Neonatal Nursing

ISSN

1552-6909

Publisher

Wiley-Blackwell

Issue

5

Volume

40

Page range

555-565

Department affiliated with

  • Psychology Publications

Full text available

  • No

Peer reviewed?

  • Yes

Legacy Posted Date

2012-02-06

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