Parent, patient and clinician perceptions of outcomes during and following neonatal care: a systematic review of qualitative research

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Title: Parent, patient and clinician perceptions of outcomes during and following neonatal care: a systematic review of qualitative research
Authors: Webbe, J
Brunton, G
Ali, S
Longford, N
Modi, N
Gale, C
The Core Outcomes in Neonatology (COIN) Project Steering Group
Item Type: Journal Article
Abstract: Objective Multiple outcomes can be measured in infants that receive neonatal care. It is unknown whether outcomes of importance to parents and patients differ from those of health professionals. Our objective was to systematically map neonatal care outcomes discussed in qualitative research by patients, parents and healthcare professionals and test whether the frequency with which outcomes are discussed differs between groups. Design Systematic review of qualitative literature. The following databases were searched: Medline, CINAHL, EMBASE, PsycINFO and ASSIA from 1997 to 2017. Publications describing qualitative data relating to neonatal care outcomes, reported by former patients, parents or healthcare professionals, were included. Narrative text was analysed and outcomes grouped thematically by organ system. Permutation testing was applied to assess an association between the outcomes identified and stakeholder group. Results Sixty-two papers containing the views of over 4100 stakeholders were identified; 146 discrete outcomes were discussed; 58 outcomes related to organ systems and 88 to other more global domains. Permutation testing provides evidence that parents, former patients and health professionals reported outcomes with different frequencies (p=0.037). Conclusions Parents, patients and health professionals focus on different outcomes when discussing their experience of neonatal care. A wide range of neonatal care outcomes are reported in qualitative research; many are global outcomes relating to the overall status of the infant. The views of former patients and parents should be taken into consideration when designing research; the development of a core outcomes set for neonatal research will facilitate this.
Issue Date: 9-Oct-2018
Date of Acceptance: 14-Aug-2018
ISSN: 2399-9772
Publisher: BMJ Publishing Group
Journal / Book Title: BMJ Paediatrics Open
Volume: 2
Copyright Statement: © Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:
Sponsor/Funder: Medical Research Council
Funder's Grant Number: MR/N008405/1
Publication Status: Published
Article Number: e000343
Appears in Collections:Department of Medicine
Faculty of Medicine

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