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Parent, patient and clinician perceptions of outcomes during and following neonatal care: a systematic review of qualitative research
  1. James Webbe1,
  2. Ginny Brunton2,
  3. Shohaib Ali3,
  4. Nicholas Longford1,
  5. Neena Modi1,
  6. Chris Gale1
  7. the Core Outcomes in Neonatology (COIN) Project Steering Group
    1. 1 Neonatal Medicine, Imperial College London, London, UK
    2. 2 UCL Institute of Education, London, UK
    3. 3 Imperial College London, London, UK
    1. Correspondence to Dr Chris Gale; christopher.gale{at}


    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.

    • neonatology
    • outcomes research
    • patient perspective

    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:

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    • Contributors JW and CG conceived this systematic review. This protocol was created by JW, GB and CG. Searches were performed by LW. All search results were reviewed by JW and assessed by the eligibility criteria. Quality assurance was completed by CG. Coding and result synthesis was completed by JW, GB and CG. Statistical analysis was completed by NL. The first draft of the manuscript was written by JW, CG, GB and NL. NM edited and reviewed the manuscript. It was approved by JW, CG, GB, SA, LW, NL, NM and the COIN Steering Group.

    • Funding This research is sponsored by Imperial College London and supported by an MRC Clinician Scientist Fellowship award to CG (MR/N008405/1) and salary support for JW from the Portland Hospital.

    • Disclaimer The Imperial College London, the MRC and the Portland Hospital had no involvement in the research or this publication.

    • Competing interests None declared.

    • Patient consent Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement Requests for access to data should be addressed to the corresponding author.

    • Collaborators COIN Project Steering Group: Elsa Afonso; Iyad Al-Muzaffar; Ginny Brunton; James Duffy; Chris Gale; Anne Greenough; Nigel Hall; Marian Knight; Jos Latour; Neil Marlow; Neena Modi; Laura Noakes; Julie Nycyk; Mehali Patel; Angela Richard-Londt; James Webbe; Ben Wills-Eve.

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