DiSCERN – understanding how harmful incidents in maternity care can be more openly discussed with patients and families
The DiSCERN study is looking at how to improve open disclosure when families are unexpectedly harmed while receiving NHS maternity care.
Open disclosure is the open discussion of incidents that have resulted in harm to a patient during healthcare. It describes how healthcare professionals communicate with the patients and families, providing facts about what has happened, listening to the patient perspective of events and describing what steps are being taken to improve care in the future. Open disclosure should provide patients and families with honest answers and ensure healthcare providers prevent mistakes from happening again. While some units are making sure that open disclosure takes place, others are not or are not doing it well.
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. The study will investigate how this can be achieved by carrying out interviews with healthcare professionals and families, examining relevant documents and observing the process of open disclosure in action. Finally, joint meetings with families, healthcare professionals and policymakers will combine all of this work to produce recommendations on how best to improve open disclosure in practice.
These workable recommendations will include clear guidance and training for healthcare professionals, along with processes for setting up better support systems for parents and families. Throughout the study, four parents and family members will be involved in shaping, monitoring and sharing the research through a Project Advisory Group, which Sands has helped to establish. Sands has been involved in the design of the study and continues to support the researchers as the study progresses.
Why do we need this research?
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 are 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 study will also contribute to other research about open disclosure that happens beyond NHS maternity settings.
What will the researchers do?
The researchers will start by carrying out a review of existing research to see what has already been learned about how open disclosure works in healthcare settings internationally. Then they will survey a selection of those involved in developing the open disclosure process used in NHS maternity settings, including families, healthcare staff and managers.
The second stage of the study involves examining approaches to open disclosure, and the impacts of these, at four NHS maternity units. Detailed interviews will be carried out with families, healthcare staff and managers and each unit’s policy and guidance documents will be analysed. The researchers will also observe the process of open disclosure ‘in action’ in these units to best understand how open discussions take place in practice.
Finally, in each maternity unit joint meetings will take pace with families, healthcare professionals and policymakers to combine all of this work to produce recommendations on how best to improve open disclosure in practice. Throughout each of these three stages, the involvement of families in the research is crucial in ensuring that the recommendations produced are going to help improve the process of open disclosure. Sands has helped the researchers to establish a Project Advisory Group that includes four parents and family members will be involved in shaping, monitoring and sharing the findings of the research study.
What does the study expect to find?
The study will produce workable recommendations for policymakers, guidance for managers, training for healthcare staff and tools for providing better support to parents and families when open discussion around harmful incidents need to take place. This work will also help others in different NHS settings learn about what works best when carrying out open disclosure in practice.
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