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

Cartwright, Kim, Mahoney, Liam, Ayers, Susan and Rabe, Heike (2011) Parents' perceptions of their infants' participation in randomized controlled trials. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 40 (5). pp. 555-565. ISSN 1552-6909

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Abstract

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.

Item Type: Article
Keywords: parents; perceptions; infants; participation; randomized controlled trials
Schools and Departments: School of Psychology > Psychology
Depositing User: Susan Ayers
Date Deposited: 06 Feb 2012 15:34
Last Modified: 07 Nov 2012 17:14
URI: http://sro.sussex.ac.uk/id/eprint/13297
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