Why is this research needed?

There is pressure on NHS maternity services to ensure that open discussions of harmful incidents always take place, especially as avoidable harm in maternity care is devastating to families and costly to the NHS. While some units are making sure that open disclosure takes place, others are not or are not doing it well. There are a range of new measures designed to improve open disclosure in maternity services, such as new professional standards, guidance and tools to support hospital reviews of harmful incidents. However, there is a need for clearer understanding and guidance on how to approach open disclosure in the way that best supports both families and the healthcare professionals involved in maternity care.

What were the aims of this study?

To identify the factors that are most likely to have the biggest impact in improving how open disclosure happens in maternity care, focussing on the views and needs of families and healthcare professionals. This includes investigating how current approaches to having open discussions affects families, healthcare professionals, health services and wider relationships of care. The overall aim was to produce recommendations to improve open disclosure in maternity care and future research studies.

What did the researchers do?

Initially, the researchers carried out a review of existing research to see what has already been learned about how open disclosure works in healthcare settings internationally. They also reviewed each hospital’s policy and guidance documents related to how the hospitals were meant to ensure more families did not suffer harm in the future. 

The second stage of the study involved examining approaches to open disclosure, and the impacts of these, at three NHS maternity units. Detailed interviews were carried out with families who had been through the hospital review processes, healthcare staff and managers. The researchers also observed the process of open disclosure ‘in action’ in these units to best understand how open discussions take place in practice.  

Finally, the researchers discussed the findings from the first two stages at focus groups that took place with families, healthcare professionals and policymakers that combined everyone's perspectives on this work to produce recommendations on how best to improve open disclosure in practice. 

Throughout each of these stages, the involvement of families in the research was crucial to ensuring that the recommendations produced can help improve the process of open disclosure. Sands helped to establish the Project Advisory Group that included four parents and family members who were involved in shaping, monitoring and sharing the findings of the research study. 

What did the study find?

Key findings from the study suggest that several things are particularly important when having open and honest discussions with bereaved families after things go wrong during maternity care:

•             Meaningful Acknowledgement of Harm: It's essential for the NHS to fully recognise the pain and loss parents and families experience after the death of their baby and are open in admitting when the care delivered contributed to this. This includes a sincere acknowledgment that the death has had a profound impact on the lives of the parents and family members.

•             Involvement in Investigations: The study stressed that families should be central to any investigations or reviews that follow the death of a baby. This means parents and families should be included in discussions and decisions, ensuring their voice and perspective are heard throughout the process.

•             Understanding What Happened: Parents and families often need to make sense of the events that led to their baby’s death. The hospital where their baby died should support parents and families in understanding exactly what happened, helping to provide some clarity for them.

•             Compassionate and Skilled Communication: The study found that the quality of support available during the discussions following a baby’s death depends heavily on the skills and ability of healthcare professionals to have difficult conversations. Parents should expect to be treated with compassion by staff who are trained to handle these conversations with sensitivity, hence ensuring all staff are trained in compassionate communication and open disclosure is vital.

•             Commitment to Change: For many bereaved parents and families, knowing that their baby’s death may lead to improvements in care for others can be a small but important comfort. The study emphasises the importance for bereaved parents and families of knowing that the hospital is committed to learning from these incidents and making necessary changes to prevent future harm.

The study produced recommendations for policymakers, guidance for managers, training for healthcare staff to highlight how better support can be provided to parents and families when open discussion take places after things go wrong, included ensuring staff were better aware of the fact that open disclosure is an ongoing relationship with bereaved families.

These included:

• Development of training for staff to better communicate with parents and families during reviews and investigations, and having a dedicated staff member to help parents navigate the system
• Highlighting the importance of ongoing communication with parents and families, including about changes made to clinical practice as a result of reviews
• The importance of developing a standard approach to open and honest discussions taking place, and involving parents and families in the design and development of this approach 

You can read the whole set of recommendations in the full report available here.

Additional information:

Lead researchers – Professor Jane Sandall and Dr Mary Adams

Institution – King’s College London

Funder – National Institute for Health Research (NIHR)

Duration – April 2019 - March 2022

Publications:

Adams, M. et al. (2023) ‘Strengthening open disclosure after incidents in maternity care: a realist synthesis of international research evidence’, BMC Health Services Research, 23(1), p. 285. Available at: https://doi.org/10.1186/s12913-023-09033-2.