Critical discourse analysis on the influence of media commentary on fatal fetal anomaly in Ireland.

Fatal Fetal Anomaly (FFA) has generated international media attention as termination of pregnancy (TOP) for FFA was legislated for, for the first time in Ireland. Media offers an insight into what health-related information is available to the public and how it is presented to them. The aim of this study was to examine how information related to FFA, TOP for FFA and perinatal palliative care (PPC) were framed in Irish published media. A critical discourse analysis, which examines the relations between discourse and social and cultural phenomena was implemented. Habermasian's framework facilitated an objective analysis of the text, to facilitate interpretation and understanding of socially produced meanings. A broadsheet and journal were chosen. Dated from 2012 to 2017, 129 articles were identified. Themes of personification of the unborn, human rights and power and politics were embedded in the discourse, creating political influence to sway perceptions and views. Terminology were chosen by different ideological perspectives to create varying contexts and support arguments. PPC was suppressed within the published media. This study highlights misrepresentations in the information delivered to the public and suggests the need for healthcare professionals to expand their media literacy and develop these skills with their patients.

Experiences of Volunteers Supporting Parents Following a Fatal Fetal Anomaly Diagnosis.

Ireland has had a reliance on voluntary groups to provide peer-to-peer bereavement support. The aim of this study was to explore volunteers', within these voluntary groups, experiences of supporting parents following a fatal fetal anomaly diagnosis. Purposive sampling was used to recruit volunteers (n = 17) and face-to-face interviews undertaken. NVivo12 was utilized to assist in the thematic analysis of the data. Five themes; "motivation for altruistic acts," "being challenged," "value of education and training," "supporting volunteers to support others," and "it is not a sprint, it is a marathon" were identified. Volunteers felt comfortable in their peer-support role but found the lack of knowledge regarding newly implemented termination of pregnancy (TOP) services challenging. The importance of education/training was identified, emphasizing the need for collaboration with health care professionals and other voluntary organizations for support. The findings illustrate the need for collaborative working between health care professionals and volunteers to assist them in supporting bereaved parents.

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

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.

The incidence of fatal fetal anomalies associated with perinatal mortality in Ireland.

OBJECTIVE: The term fatal fetal anomaly (FFA) describes a condition likely to lead to death of the fetus in utero or within 28 days of birth. This study aimed to identify what congenital anomalies are responsible for perinatal death and whether they are classified as an FFA in accordance with criteria outlined in Irish legislation. METHODS: Anonymised data pertaining to perinatal deaths from 2011 to 2016 in Ireland were obtained from the National Perinatal Epidemiology Centre. Secondary data analysis was conducted using SPSS. RESULTS: Of the 2638 perinatal deaths, 939 (36%) had a congenital anomaly. Nearly half was chromosomal (43%, n = 406 of 939) with 36% of the cases (n = 333 of 938) having more than one anomaly. Additional information was available for 777 of these congenital anomaly, of which 42% (n = 328) could be classified an FFA. CONCLUSION: This study identified that less than half of the congenital anomalies could be classified as an FFA; however, all were fatal. This acknowledges the complexity of these cases. In isolation, the congenital anomaly may not be fatal, but combined as multiorgan system anomalies, it is. Knowledge is required to inform clinical practice and counselling of parents who receive such a diagnosis.

An assessment of the general public's knowledge of fatal fetal anomalies.

OBJECTIVE: The objective of the study is to evaluate the general population's knowledge of fatal fetal anomaly (FFA). METHODS: Descriptive statistics were utilised to describe the data. Chi-square tests assessed associations with knowledge of FFA, termination of pregnancy (TOP) for FFA, and perinatal palliative care (PPC). RESULTS: Nine hundred seventy adults of the Irish population selected by random digit dialling with 83.9% (n = 814) agreed to partake. Only 30% could correctly define FFA with little knowledge demonstrated regarding the classification of FFA. Almost half of the respondents were unaware that medical intervention was required for survival once born. Half of respondents stated that they did not know if PPC could commence at diagnosis, once the baby reached 24 weeks or not until the baby was born alive. One in 5 had knowledge that medical follow-up after TOP for FFA was available, and a third were unaware that bereavement care was available following a TOP for FFA. CONCLUSION: This study identifies lack of accurate knowledge on FFA, its classification, diagnosis, survival, and supports available following a diagnosis of FFA among the general public. This knowledge deficit highlights the need for improved health information about FFA in antenatal education and public health campaigns to facilitate informed decision-making following a FFA diagnosis.