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Original research
Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory
  1. Karen L Shaw1,
  2. J Spry1,
  3. Carole Cummins1,
  4. Andrew K Ewer2,
  5. Mark D Kilby2,3,4,
  6. Alexandra Mancini5,6
  1. 1 Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  2. 2 Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK
  3. 3 Fetal Medicine Centre, Birmingham Women's and Children's NHS Foundation Trust, Birmingham, UK
  4. 4 The Medical Genomics Research Group, Illumina, Cambridge, UK
  5. 5 Corporate Nursing, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
  6. 6 True Colours Trust, London, UK
  1. Correspondence to Dr Karen L Shaw, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, UK; k.l.shaw{at}bham.ac.uk

Abstract

Background Perinatal advance care planning (PnACP) is a process of formal decision-making to help families plan for their baby’s care when recognised that they may have a life-limiting condition. While PnACP is recommended in policy, there is a lack of evidence to support implementation and development in the perinatal setting.

Objective To conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice.

Methods A secure online questionnaire was developed to collect data on (1) ‘what’ is being implemented, (2) the ‘processes’ being used, (3) perceived impact and (4) unmet support needs. Data were analysed using basic descriptive statistics, thematic analysis and through a conceptual lens of Normalisation Process Theory.

Results Questionnaires were completed by 108 health professionals working in 108 maternity and neonatal services, representing 90 organisations across the UK and Ireland. This revealed many resources and examples of good practice to support PnACP. However, there was wide variation in how PnACP was conceptualised and implemented. Existing frameworks, pathways and planning tools are not routinely embedded into care, and respondents identified many barriers that negatively impact the quality of care. They called for better integration of palliative care principles into acute settings and more investment in staff training to support families at existentially difficult times.

Conclusions Priorities for additional perinatal service development include greater sharing of best practice and effective strategies to target the unique challenges of PnACP, such as time-sensitive collaborative working and decision-making in the face of high uncertainty.

  • Palliative Care
  • Neonatology
  • Intensive Care Units, Neonatal

Data availability statement

The data are not publicly available as they contain information that could compromise the personal information of respondents. However some (anonymised) aspects of the data that support the findings may be available on reasonable request from the corresponding author.

https://doi.org/10.1136/archdischild-2023-325649

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    Data availability statement

    The data are not publicly available as they contain information that could compromise the personal information of respondents. However some (anonymised) aspects of the data that support the findings may be available on reasonable request from the corresponding author.

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    Footnotes

    • Twitter @mancini_smith

    • Contributors KLS and JS conceived the study. KLS, JS, CC, AKE and MK contributed to the research design. KLS led data collection and analysis with support from JS, AKE, MK and AM. All authors discussed the results and contributed to the final manuscript. KLS is the guarantor.

    • Funding Funded by Birmingham Women's and Children's Hospital Charity (BWCHRF579).

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.