Experiences of pregnancy with major fetal anomalies

Background: Two to three percent of pregnancies will receive a diagnosis of a congenital anomaly, of which a proportion are fatal. While the prevalence of congenital anomalies is low it is the leading cause of fetal death and child mortality. More women are receiving a diagnosis of a fetal anomaly during their pregnancy as a result of advancements in technology. While there is no universally agreed definition, the term fatal fetal anomaly (FFA) is widely used to describe a condition likely to lead to death of the fetus in utero or within 28 days of birth. Delivering a diagnosis of a FFA is usually unexpected and is an unwanted and traumatic event for parents. Little is known about what conditions are most responsible for perinatal mortality. Following a FFA diagnosis, parents face multiple challenges, primarily whether to continue and avail of PPC or terminate the affected pregnancy. Regardless of the choice, the outcome is ultimately the same, ending in a fetal, neonatal or infant death. The need for the decision to be an informed one is paramount. Information is an essential factor to develop patient’s knowledge and empowers them in their decision-making. Media offers an insight into health-related information widely available to the public. FFA has generated international media attention as termination of pregnancy (TOP) for FFA was legislated for, for the first time in Ireland. However, it is identified that what the people voted for has not materialised in the legislation relating to practical terms of delivering abortion care. Following pregnancy loss or perinatal death, parents require various levels of support during their bereavement. There is an over reliance on voluntary organisations to provide peer support to families to meet their needs that often surpass that of standard maternity hospital provision. Education is essential in healthcare in order to keep up-to-date with best practice. This is of particular importance as TOP for FFA, without gestational limits, was provided for within legislation for the first time in Ireland from 2019. This change in legislation warrants an exploration into Volunteers experiences of supporting families, and Fetal Medicine Specialists’ (FMS) experiences of caring for parents following a FFA diagnosis. The overall aim of this thesis was to explore various aspects of pregnancies diagnosed with FFA, during this change in service provision. Methodology: To address the thesis’s aims, both qualitative and quantitative methods were employed. Employing a mixed methods approach to study a phenomenon allows for flexibility to explore different aspects in each of the studies. A secondary analysis was undertaken on anonymised data obtained from the National Perinatal Epidemiology Centre, pertaining to perinatal deaths from January 2011 to December 2016 in Ireland. A national cross-sectional telephone survey was undertaken to assess the public knowledge on FFA. For these quantitative studies, descriptive and inferential statistics were utilised to analyse data. A critical discourse analysis was undertaken to examine the relations between discourse and social and cultural phenomena. Habermasian’s framework facilitated an objective analysis of text in the Irish media, to facilitate interpretation and understanding of socially produced meanings. A modified Delphi study, involving two rounds and inclusive of free text, was undertaken to identify educational needs of Volunteers. Lastly, for two of the qualitative studies an interpretive descriptive approach facilitated the researcher to delve into Volunteers’ and FMS experiences of supporting and caring for parents who receive a diagnosis of a FFA at a time where TOP for FFA is being provided for, for the first time. This inductive approach represents a co-constructed truth, it moves beyond the level of description of the phenomenon and articulates a meaning of and explanation for these experiences, generating implications for practice and application of these. Both of these studies adopted a data analysis methodology based on the principles of thematic analysis. Results: A lack of accurate knowledge relating to FFA, its classification, diagnosis and supports available to parents experiencing a pregnancy affected by a FFA among the general public was illustrated within this thesis. Additionally, the data identified misrepresentations in the information relating to FFA delivered to the general public. Outlined by these findings, opportunistic politicians were found to utilise the media to highlight their party’s ideological perspective regarding FFA, to derive political advantage to gain popularity and power. This thesis identified that the uncertainty of what conditions were deemed fatal in accordance with the legislation was related to the ambiguity and restrictiveness of the Irish TOP legislation as long-term survivors are known to many of the conditions considered a FFA. The lack of a universal agreement of what constitutes as a FFA and a list of conditions that are associated with this term, adds additional challenges to diagnosing a congenital anomaly as fatal. On examination of perinatal deaths with a congenital anomaly as a main cause of death, reported between 2011 and 2016, only 42% could be deemed a FFA in accordance with the criteria implemented by the Irish legislation. Many of the conditions in isolation may not be a FFA however, when combined they have the potential to be fatal. The suitability of the Irish legislation for TOP for FFA generated further difficulties for FMS due to its rapid introduction into clinical practice. FMS reported the lack of organisational support, time to prepare and additional resources as challenges for the introduction of a new service. These challenges were exacerbated by FMS fear of criminalisation attached to the TOP legislation if a TOP was carried out for a condition not deemed to be fatal and the subsequent media scrutiny. The data from these studies also revealed the importance of education and keeping up to date in order to deliver the best evidence based peer support and healthcare. The need for information specific to TOP for FFA provision in the Republic of Ireland was highlighted. Both Volunteers and FMS emphasised the importance of collaborative working (Volunteers requiring the support of healthcare professionals and FMS requiring the support of their colleagues) to meet the needs of parents following a FFA diagnosis while also acknowledging the importance of teamwork in supporting them in their peer support or clinical role. Organisational and collegial support is essential to sustain the delivery of peer-to-peer support for Volunteers and to reduce the feeling of isolation and judgement for FMS providing TOP for FFA. Thus, assisting both Volunteers and FMS in their own self-care while working in an emotive environment involving pregnancy loss and perinatal death. Conclusion: These data suggest there is a need for better knowledge of FFA, particularly regarding the complexity relating to the presentation of infants with a fetal anomaly that leads to them being fatal. These studies acknowledge the need for a universal term and definition that represents fetuses/infants with conditions that cause perinatal death to ensure a standard of care for women and their partners following a FFA diagnosis. It promotes the need for a universal database designed to collect essential epidemiologic information on congenital anomalies within the Republic of Ireland to support the labelling of a condition as a FFA. Additionally, the importance of education and the need to provide support and care to parents following FFA that reflects best practice and responds to their needs. FMS providing TOP for FFA services require organisational and collegial support to effectively deliver this new service. Furthermore, this thesis promotes the need to support both Volunteers and healthcare professionals involved in the delivery of care for parents following a FFA diagnosis through a collaborative approach, one that values and respects all members. The findings of these data outline several recommendations for the Irish TOP legislation, healthcare policy and clinical practice. It argues the need to reform the TOP legislation by removing the retained criminalisation, amending Section 11 and remove the restrictive 28 days. Furthermore, it is recommended that the Act refers to clinical practice guidelines informed by FMS and those healthcare professionals working within the abortion services. Finally, it identifies areas that warrant further research, such as the exploration of parents’ experiences of care and support received following a FFA diagnosis, to inform future intervention and improve care delivered to parents following a FFA diagnosis