The team, which included family and charity representatives as well as ARC researchers at King's College London, hopes the findings from the study will drive improvements in open disclosure in a way that best supports both families and healthcare professionals.
Open disclosure is when the NHS informs families that the care it has provided has directly caused harm. Open disclosure should provide patients and families with honest answers and ensure healthcare providers learn from mistakes to prevent them from happening again.[1]
The new study, called DISCERN, aimed to understand whether NHS maternity services in England involved families in investigations and reviews surrounding incidents and how this was done, what worked well, what didn’t work well and why. The findings were outlined in a report published in Health and Social Care Delivery Research.
Building on hypotheses from previous research, the new report identifies five critical factors to improve open disclosure in maternity care following incidents that caused harm or death to the baby or woman:
The study was co-led by Mary Adams, Visiting Senior Research Fellow, and Jane Sandall CBE, Professor of Social Science and Women’s Health, from King’s College London, and carried out with collaborators at King’s, Sands (the stillbirth and neonatal death charity), BirthRights, the University of Manchester and the Birth Trauma Association.
The work was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research Programme.[2]
There has been a push within the UK’s NHS maternity services to improve open disclosure with affected families, but there is little evidence of how effective these interventions are and how practice can be improved.
The national study was carried out over three years and in three phases. In the first phase, the team reviewed documents related to safety, incidents, harm, reviews and investigations in maternity care, and conducted interviews with stakeholders and families.
In the second phase, the team conducted case studies of three maternity services. This involved interviewing staff and families, and observing staff and family meetings, and informal unit and office activities surrounding open disclosure.
The third phase focused on interpretation of these findings in family, clinician and manager forums to develop actions to drive improvements.
The most important people to involve in these investigations are the parents, they have to be central to the whole picture. Without their perspectives of what happened, we’d never be able to learn, and to change care for other families.
The team concluded that there is a need for:
What we found was that in these NHS trusts, good practice surrounding open disclosure wasn’t systemic, but dependent on staff members’ ability to have, and experience with having, difficult conversations with families. The key issue is how do we make these processes part of standard care, and how can we best support staff to have these difficult conversations.
As part of the DISCERN study, the team has created a film intended to improve staff awareness of what is important to families and how interventions can be improved. The film focuses on areas of good practice in open disclosure and draws on the experiences of families and staff involved in incidences of harm the team heard from.
"This thought provoking and incisive animation is a 'must watch' for all healthcare professionals working in the maternity services. It captures the emotional turmoil of families who have suffered harm, in their own words. It explores the feelings of health care professionals who must navigate the difficult challenge of disclosing the harm in a way that does not add to the family's trauma. Used in training and education it will go a long way to preventing even further emotional harm to all those involved in these incidents,” said Maureen Treadwell, co-founder of the Birth Trauma Association.
[1] Sands. The DISCERN study. Available at: sands.org.uk/our-work/research/studies-we-fund/discern-study (accessed August 2024).
[2] Adams MA, Bevan C, Booker M, Hartley J, Heazell AE, Montgomery E, et al. Strengthening open disclosure in maternity services in the English NHS: the DISCERN realist evaluation study. Health Soc Care Deliv Res 2024;12(22). https://doi.org/10.3310/YTDF8015