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A Qualitative Study of the Experiences of Norwegian Parents of Very Low Birthweight Infants Enrolled in a Randomized Nutritional Trial
Department of Pediatric and Adolescent Medicine, Akershus University Hospital, Nordbyhagen, Norway; Institute for Clinical Medicine, Campus Ahus, University of Oslo, Nordbyhagen, Norway.
Örebro University, School of Health Sciences. Örebro University Hospital. Department of Health Sciences, Nursing, Faculty of Health, Science, and Technology, Karlstad University, Karlstad, Sweden.ORCID iD: 0000-0001-7352-8234
Department of Pediatric and Adolescent Medicine, Akershus University Hospital, Nordbyhagen, Norway; Institute for Clinical Medicine, Campus Ahus, University of Oslo, Nordbyhagen, Norway.
2018 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 43, p. E66-E74Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this studywas to examine howparents of very lowbirthweight (VLBW) infants experienced having their newborn infant enrolled in a randomized controlled intervention trial (RCT).

Design and Methods: A qualitative descriptive design was used. Data were collected through individual semistructured interviews with 15 parents of 9 participating VLBW infants. The data were then made the object of an inductive qualitative content analysis.

Results: The parents expressed trust in the competence and motivation of the researchers and were confident that participating in the project would do no harm, but insteadwould potentially benefit their infant. The parents felt privileged for being given the chance to participate, to commit to the project; theywerewilling to invest their time and effort in the project. Participation could be stressful for the parents, ranging from minor irritation to situations in which they felt overwhelmed and not entirely in control. Many families lived stressful lives, and participation, particularly the follow-up after being discharged, may have added to this.

Conclusions: Infant participation in an RCT can be a positive experience, making the parents feel that they are given a chance to both contribute and receive something special. Participation can also be stressful because of conditions both related and unrelated to the RCT.

Practice Implications: We identified several issues that researchers in future trials with VLBWinfants need to address to minimize parental stress. Recruitment to intervention studies within the immediate period around birth should be avoided, if possible. (C) 2018 Elsevier Inc. All rights reserved.

Place, publisher, year, edition, pages
Elsevier, 2018. Vol. 43, p. E66-E74
Keywords [en]
Parents, Premature, Research ethics, Randomized controlled trial, Very low birth weight (VLBW)
National Category
Nursing Pediatrics
Identifiers
URN: urn:nbn:se:oru:diva-70497DOI: 10.1016/j.pedn.2018.07.008ISI: 000450921100012PubMedID: 30077471Scopus ID: 2-s2.0-85050807687OAI: oai:DiVA.org:oru-70497DiVA, id: diva2:1268312
Note

Funding Agencies:

Health Region of SouthEastern Norway  2719002 

Akershus University Hospital, Norway  266925-2016 

Available from: 2018-12-05 Created: 2018-12-05 Last updated: 2018-12-05Bibliographically approved

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Anderzen-Carlsson, Agneta

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