Marlow, N;
Hoy, S;
Peacock, A;
Kamphuis, J;
(2020)
Outcomes from the other side.
Seminars in Fetal and Neonatal Medicine
, 25
(3)
, Article 101125. 10.1016/j.siny.2020.101125.
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Abstract
Parents and individuals who were born preterm rarely contribute to research study design in order to ensure that outcomes are reported that are of relevance to them. In this article we explore aspects of the measures we use and the lived experiences of three individuals with experience of having a very preterm birth or being very preterm themselves. Their experiences tell us that follow up needs to be more than 2 years, that prematurity needs to be more widely acknowledged in education and that adult services need to consider the consequences of being born early. There are encouraging signs that these important issues are becoming recognised. Individuals designing outcome studies should ensure that these important voices are heard, and their perspectives captured in such studies.
| Type: | Article |
|---|---|
| Title: | Outcomes from the other side |
| Location: | Netherlands |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.siny.2020.101125 |
| Publisher version: | https://doi.org/10.1016/j.siny.2020.101125 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health > Neonatology |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10103633 |
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