Restriction lift date: 2023-09-30
Study of methods, systems, recommendations and bereaved parents’ involvements in perinatal death reviews, inquiries and audits
University College Cork
Background: An estimated 5.3 million perinatal deaths occur worldwide each year. In Ireland, there were 335 perinatal deaths reported in 2019. These deaths are devastating for the parents, families and, if unexpected, for the healthcare staff involved, with long-lasting emotional consequences. Some of these deaths are unavoidable, but many are preventable. To investigate these deaths and identify contributory factors, local hospital-based perinatal death reviews as well as national perinatal mortality audits are carried out. In certain circumstances, for example if a higher than expected intrapartum perinatal death rate is recorded, an external inquiry may be commissioned to investigate events of public concern. Reports with recommendations are published after local perinatal death reviews, perinatal audits and external inquiries. In Ireland, there is currently no standardised format to the recommendations or their implementation. Further, the involvement of bereaved parents in local maternity hospital-based perinatal death reviews is poorly explored. The aim of this thesis is to analyse the methodology and structure of perinatal mortality audits, local reviews and inquiries, as well as recurrent themes in the recommendations of the published reports and the inclusion of bereaved parents in reviews. Methodology: Both qualitative and quantitative methods were employed for this thesis. A topic can be explored with flexibility and in depth by using a mixed methods approach. An integrative literature search was carried out focussing on the types and evolution of perinatal mortality audits and reviews in high-income countries. Further, an integrative review using quantitative and qualitative methods to identify established national perinatal mortality audits in four high-income countries and national initiatives addressing recommendations from these audits was done. Content analysis of the audits’ recommendations was performed organising them into themes according to topics covered. Additionally, a service evaluation of the local maternity hospitals’ perinatal death reviews in Ireland was carried using an electronic survey. The quantitative and qualitative data collected from all 19 maternity units were analysed to identify and compare current local review processes. In the analyses of the ten Irish inquiry reports relating to perinatal deaths and pregnancy loss services in the maternity services quantitative and qualitative data were collected by two clinicians using a specifically designed review tool. Descriptive analyses of the main characteristics of the reports gave an overview of the terms of reference and inquiry review process, and identified recurring themes in the recommendations. Qualitative content analysis of the reports’ findings and recommendations was used to identify key domains. An inductive thematic analysis with a semantic approach following the steps of familiarising, coding, identifying, grouping and revising themes identified the main themes and subthemes for each domain. Lastly, purposeful sampling was used to recruit bereaved parents in Ireland to take part in semi-structured interviews to examine how parents may be appropriately involved in the local hospital-based review in a way that is beneficial to them and the review process itself. Reflexive thematic analysis using a five-phase process (familiarisation, open coding, generating themes, developing themes, refining themes) was carried out on the collected data by three researchers. Results: Internationally, differences in perinatal mortality classifications, audits and reviews, as well as barriers to the implementation of recommendations were noted. Common and recurrent themes of recommendations from four established national perinatal mortality audits suggested a lack of progression of recommendations that is shared between countries. These four countries have adopted varying national initiatives and programmes to address the audits’ recommendations. A lack of standardisation for the methods of local perinatal mortality reviews and external inquiries in Ireland was highlighted within this thesis. Recommendations from ten inquiry reports were numerous and repetitive suggesting a lack of clear ownership for the implementation process. An analysis of the findings of the ten inquiry reports showed that that elements of governance of Irish maternity services (workforce, leadership, management of risk, work environment) impacted negatively and directly on the management of perinatal deaths and bereavement services. Further, three elements (hospital oversight, national documents, data collection) identified from the inquiry reports in turn affected governance structures in the management of perinatal deaths. Examination of these inquiry reports highlighted shortcomings in the perinatal bereavement care and pregnancy loss services provided to families in the Irish maternity services and the short- and long-term effects this can have. Interviews with bereaved parents revealed that parents want a more inclusive and open process that allows them to be included in the local hospital perinatal mortality review. However, this parental involvement needs to be carefully considered, flexible and appropriately resourced. Conclusion: The culture in the maternity unit determines how bereaved families and hospital staff cope after an adverse event like an unexpected perinatal death. A lack of open disclosure can have negative effects on how bereaved parents process events and cope with their grief after the death of their baby. Recently many reports with multiple recommendations have been published to improve safety standards in the Irish maternity services; however, implementation thus far has been slow and incomplete. The focus is currently on collecting data and highlighting issues, and less on progressing recommendations to implement changes and prevent similar events recurring. To overcome barriers to successful recommendation implementation and advance perinatal mortality audits and reviews, suggestions based on examples from the international literature were identified and provided as part of this thesis. Perinatal mortality processes, including reviews, need to be standardised across the 19 maternity units. Suggestions to achieve this include the adaptation of the national Incident Management Framework specifically to the maternity setting, the implementation of an electronic review tool such as MERT (Maternity Event Review Tool) for perinatal deaths and an assessment of the feasibility of a national perinatal (and/or paediatric) Coroner for Ireland. The inclusion of parents in perinatal mortality reviews needs to be addressed urgently yet carefully considered and resourced, in order for it to be beneficial to them and the review process itself. A collaborative process between staff and parents can highlight clinical areas in need of change, enhance lessons learned, and may prevent future perinatal deaths.
Perinatal mortality , Stillbirth , Neonatal death , Mortality reviews , Mortality audit , Confidential enquiry , External inquiry , Maternity services , Governance , Bereaved parents , Incident reviews , Implementation of recommendations , Maternity hospital culture , Perinatal bereavement care , Collaboration
Helps, Ä. 2021. Study of methods, systems, recommendations and bereaved parents’ involvements in perinatal death reviews, inquiries and audits. PhD Thesis, University College Cork.