Education priorities for voluntary organisations supporting parents experiencing perinatal loss: a Delphi survey

Abstract

Background: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day. Method: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group. Results: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day. Conclusion: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.

Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study

“…Within this study, FMSs expressed their fear of media scrutiny and being questioned on their diagnosis of an FFA. The Irish media regularly reports on adverse obstetric events, suggesting mismanagement and providing the names of the clinicians involved, 19 as was evident within weeks of introducing TOP services 27 . Such media attention can have a negative impact on healthcare professionals and parents 28,29 .…”

“…SP provided participant information leaflets to 12 FMSs and encouraged them to share study information with their FMS colleagues. The topic guide was developed by all three authors and input was sought from members of the Pregnancy Loss Research Group, which include representatives of the multidisciplinary team (MDT) and service users 19 . No other input was sought from patient and public representatives.…”

Experiences of Volunteers Supporting Parents Following a Fatal Fetal Anomaly Diagnosis

“…While training needs of volunteers need to be considered carefully due to their services being influenced by the principles of peer support (Boyle et al, 2015; Fisher et al, 2014), volunteers are required to manage highly emotive situations while balancing their own internal states (Fisher et al, 2014). Furthermore, voluntary organizations’ knowledge and practice is required to be of optimal quality and reflect that of the changing needs of service users (Bereavement Care Standards Development Group, 2016; Boyle et al, 2015; Power et al, 2020). While volunteers are willing to provide peer-to-peer support, they may lack the competence to respond appropriately to the needs of their peers (Department of Health and Children, 2010).…”

“…Voluntary support groups have long played a significant role in health care in responding to the unmet needs of individuals and policy worldwide (J. Clarke & Quin, 2007; Enjolras et al, 2018; Independent Review Group, 2018; Power et al, 2020). This was of particular relevance, prior to January 1, 2019, when termination of pregnancy (TOP) for fatal fetal anomaly (FFA) was prohibited by Law in Ireland.…”