Child death review: understanding variations in practice using normalisation process theory

Background In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do not attend CDR meetings, they should be invited to c...

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Main Authors: Karen Shaw, Sara Kenyon, Anna Pease, Jenna Spry, Joanna Jane Garstang, Gayle Routledge
Format: Article
Language:English
Published: BMJ Publishing Group 2025-05-01
Series:BMJ Paediatrics Open
Online Access:https://bmjpaedsopen.bmj.com/content/9/1/e003432.full
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author Karen Shaw
Sara Kenyon
Anna Pease
Jenna Spry
Joanna Jane Garstang
Gayle Routledge
author_facet Karen Shaw
Sara Kenyon
Anna Pease
Jenna Spry
Joanna Jane Garstang
Gayle Routledge
author_sort Karen Shaw
collection DOAJ
description Background In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do not attend CDR meetings, they should be invited to contribute questions and feedback and be informed of outcomes. There is a lack of evidence to support implementation, particularly for families after an expected child death.Objective To examine how parent involvement in CDR is operationalised currently, following expected child death, to support improvements in practice.Methods A secure online questionnaire was developed to collect data on parental CDR involvement in hospitals and palliative care services in England. Semistructured interviews were undertaken during 2022–2023, with 21 professionals in five care settings, purposively sampled from the survey to include sites with different provision contexts. Quantitative data were analysed using basic descriptive statistics. Qualitative data were analysed using directed qualitative content analysis and through a conceptual lens of Normalisation Process Theory.Results Questionnaires were completed by 13 Paediatric Intensive Care Units and 16 palliative care services. 25/29 (86%) held CDR meetings reflecting statutory guidance, 17/29 (59%) routinely informed parents about CDR and 10/29 (28%) shared outcomes with them. Interviews with 21 professionals revealed that despite valuing CDR, many struggled to implement the process and lacked confidence to involve parents. Professionals felt that parents need good bereavement support to be able to contribute and wanted resources to help inform parents about CDR and support their involvement. Enthusiastic leaders were important. Lack of funding, particularly for CDR and bereavement keyworkers, was a challenge.Conclusions
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spelling doaj-art-250a916c506e478dab932cc1bdbb820d2025-08-20T02:30:10ZengBMJ Publishing GroupBMJ Paediatrics Open2399-97722025-05-019110.1136/bmjpo-2025-003432Child death review: understanding variations in practice using normalisation process theoryKaren Shaw0Sara Kenyon1Anna Pease2Jenna Spry3Joanna Jane Garstang4Gayle Routledge52 Queen Square Brain Bank for Neurological Disorders, UCL Queen Square Institute of Neurology, London, UKInstitute of Applied Research, University of Birmingham, Birmingham, UK1 Population Health Sciences, University of Bristol Medical School, Bristol, UKUniversity of Bristol, Bristol, UK1 School of Nursing and Midwifery, College of Medicine and Health, University of Birmingham, Birmingham, UKA Child of Mine, Stafford, UKBackground In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do not attend CDR meetings, they should be invited to contribute questions and feedback and be informed of outcomes. There is a lack of evidence to support implementation, particularly for families after an expected child death.Objective To examine how parent involvement in CDR is operationalised currently, following expected child death, to support improvements in practice.Methods A secure online questionnaire was developed to collect data on parental CDR involvement in hospitals and palliative care services in England. Semistructured interviews were undertaken during 2022–2023, with 21 professionals in five care settings, purposively sampled from the survey to include sites with different provision contexts. Quantitative data were analysed using basic descriptive statistics. Qualitative data were analysed using directed qualitative content analysis and through a conceptual lens of Normalisation Process Theory.Results Questionnaires were completed by 13 Paediatric Intensive Care Units and 16 palliative care services. 25/29 (86%) held CDR meetings reflecting statutory guidance, 17/29 (59%) routinely informed parents about CDR and 10/29 (28%) shared outcomes with them. Interviews with 21 professionals revealed that despite valuing CDR, many struggled to implement the process and lacked confidence to involve parents. Professionals felt that parents need good bereavement support to be able to contribute and wanted resources to help inform parents about CDR and support their involvement. Enthusiastic leaders were important. Lack of funding, particularly for CDR and bereavement keyworkers, was a challenge.Conclusionshttps://bmjpaedsopen.bmj.com/content/9/1/e003432.full
spellingShingle Karen Shaw
Sara Kenyon
Anna Pease
Jenna Spry
Joanna Jane Garstang
Gayle Routledge
Child death review: understanding variations in practice using normalisation process theory
BMJ Paediatrics Open
title Child death review: understanding variations in practice using normalisation process theory
title_full Child death review: understanding variations in practice using normalisation process theory
title_fullStr Child death review: understanding variations in practice using normalisation process theory
title_full_unstemmed Child death review: understanding variations in practice using normalisation process theory
title_short Child death review: understanding variations in practice using normalisation process theory
title_sort child death review understanding variations in practice using normalisation process theory
url https://bmjpaedsopen.bmj.com/content/9/1/e003432.full
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