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Obstetrics and gynaecology
Protocol
PARENTS 2 study protocol: pilot of Parents’ Active Role and ENgagement in the review of Their Stillbirth/perinatal death
  1. Danya Bakhbakhi1,
  2. Dimitrios Siassakos1,
  3. Claire Storey2,
  4. Alexander Heazell3,4,
  5. Mary Lynch1,
  6. Laura Timlin1,
  7. Christy Burden1
  1. 1 Centre for Academic Women’s Health, University of Bristol, Women’s Health, Southmead Hospital, Bristol, UK
  2. 2 International Stillbirth Alliance, Bristol, UK
  3. 3 Maternal and Fetal Health Research Centre, School of Medical Sciences, Faculty of Biological, Medicine and Health, University of Manchester, Manchester, UK
  4. 4 Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, St Mary’s Hospital, Manchester, UK
  1. Correspondence to Dr Danya Bakhbakhi; db12202{at}bristol.ac.uk

Abstract

Background The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests that parents are unaware that a formal review following the death of their baby takes place. Many would welcome the opportunity to feedback into the meeting itself. Parental involvement in the perinatal mortality review meeting has the potential to improve patient satisfaction, drive improvements in patient safety and promote an open culture within healthcare. Yet evidence on the feasibility of involving bereaved parents in the review process is lacking. This paper describes the protocol for the Parents' Active Role and Engangement iN the review of their Stillbirth/perinatal death study (PARENTS 2) , whereby healthcare professionals’ and stakeholders’ perceptions of parental involvement will be investigated, and parental involvement in the perinatal mortality review will be piloted and evaluated at two hospitals.

Methods and analysis We will investigate perceptions of parental involvement in the perinatal mortality review process by conducting four focus groups. A three-round modified Delphi technique will be employed to gain a consensus on principles of parental involvement in the perinatal mortality review process. We will use three sequential rounds, including a national consensus meeting workshop with experts in stillbirth, neonatal death and bereavement care, and a two-stage anonymous online questionnaire. We will pilot a new perinatal mortality review process with parental involvement over a 6-month study period. The impact of the new process will be evaluated by assessing parents’ experiences of their care and parents’ and staff perceptions of their involvement in the process by conducting further focus groups and using a Parent Generated Index questionnaire.

Ethics and dissemination This study has ethical approval from the UK Health Research Authority. We will disseminate the findings through national and international conferences and international peer-reviewed journals.

  • perinatal mortality review process
  • stillbirth
  • neonatal death
  • parental involvement
  • healthcare improvement

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-020164

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    Footnotes

    • Contributors DB drafted the manuscript and was involved revising the manuscript critically for important intellectual content. DS, CS, AH, ML, CB and LT were involved in revising the manuscript critically for important intellectual content. All authors read and approved the final manuscript. CB is the grant holder, DB is the principal investigator and DS is the chief investigator and guarantor.

    • Funding The study is funded by the Health Foundation. The consensus meeting is sponsored by Sands, the Stillbirth and Neonatal Death charity. DB receives salary support from the National Institute of Health Research (NIHR) Academic Clinical Fellowship. AH receives salary support from Tommy’s and the NIHR Clinician Scientist Fellowship. CB receives salary support from the NIHR Academic Clinical Lectureship.

    • Disclaimer The views and opinions expressed herein do not necessarily reflect those of the NIHR, National Health Service or the Department of Health.

    • Competing interests None declared.

    • Ethics approval This study has ethical approval from the UK Health Research Authority (Research Ethics Committee reference no 17/WM/0123).

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