The term ‘congenital anomaly’ includes a broad range of structural, chromosomal, genetic and biochemical abnormalities present at birth, which often have significant consequences for the affected baby and their family. Improved technology and advances in clinical testing have resulted in increased detection rates of congenital anomalies during the prenatal period. However, while detection rates have improved, there are limited in-utero treatments available for major anomalies, leaving parents, following diagnosis, with limited options. They can continue with the pregnancy, whereby, depending on the severity of the diagnosis, the baby may die during pregnancy (stillbirth) or in the early postnatal period (neonatal death). A further option is they may be able to access a termination of pregnancy for medical reasons (TFMR) in the 113 (57%) countries and territories around the world where it is legal to do so.
Access to termination of pregnancy, including TFMR, in Ireland (IE) and Northern Ireland (NI) was highly restrictive until recent changes in legislation in 2018 and 2019 respectively. Prior to these changes, women from both jurisdictions had to travel, mainly to England, to receive TFMR care. Evidence highlights TFMR is a complex experience with parents reporting high, and prolonged levels of trauma symptoms, stress and grief. Furthermore, specific complexities attached to this group relate to stigma, shame and self-silencing. Research into TFMR has primarily been undertaken in countries where it is legal and services provided. Therefore, the change in legislation in IE and NI warrants exploration into parents’ healthcare experiences and needs of a TFMR service in these contexts.
The aim of this study was to explore the healthcare experiences and needs of women and their partners who have a termination of pregnancy following an antenatal diagnosis of fetal anomaly.
Rationale for the study
Four gaps in research evidence were identified that this study sought to address: 1) parents’ holistic TFMR healthcare experience from diagnosis to aftercare; 2) partners’ experiences of TFMR; 3) the impact of loss and grief on parents’ healthcare experiences; and 4) TFMR as an evolving area of practice in IE and NI and the needs of healthcare professionals to be able to deliver this service effectively.
To address the aim of this study a qualitative approach was employed. Primary data were collected between November 2020 and August 2021. There were two participant groups; parents who had experienced a TFMR, and healthcare professionals (HCPs) whose scope of practice involved supporting parents through a TFMR. For the parent participants (n=33, 23 women and 10 partners), semi-structured interviews were conducted, and participants were also given the option of providing written narrative accounts. Thirty-six healthcare professionals completed an online qualitative survey, with 10 of those also taking part in a semi-structured interview. All data were analysed using thematic analysis.
Parents’ healthcare experiences were framed within the Socio-ecological model (SEM) to give a deeper and more holistic view of the influences and impacts on their care provision. Analysis of parent data identified 5 themes and 19 sub-themes. For HCPs, 3 themes and 13 sub-themes were presented. Findings were triangulated and categorised under three overarching headings: (1) Person-Centred Care in TFMR – working compassionately in partnership with parents, (2) TFMR, baby loss and grief – building capacity and knowledge to improve professional, personal and community supports for parents who experience a TFMR, and (3) Consistency in access to and quality of TFMR care – promoting consistency in service provision and individual practice within the legal parameters of each jurisdiction.
This was a qualitative exploratory study and the findings presented increase understanding of parents’ healthcare experiences and needs relating to TFMR. The findings confirm that TFMR is a traumatic, life-altering experience for parents, impacting on their emotional, physical and psychological health and well-being. The parents’ active participation in deciding to have a TFMR and their awareness of the wider public discourse concerning abortion highlights the complex role guilt, stigma and shame can play in many individuals’ experiences. These negative feelings can impact on how parents perceive or interpret their healthcare experience, including the actions and behaviours of HCPs and their access to services and supports. Parents in this study who were unable to receive care in their home jurisdiction after they decided to terminate their pregnancy experienced additional distress and anguish. In some cases, not being able to access a TFMR was due to legal or service restrictions. In other cases, participants believed individual practitioners were deliberately obstructive in their implementation of the law.
This research reveals the important role HCPs play in contributing to how parents cope through a TFMR. Parents who had a positive relationship with a HCP, in which information was communicated effectively, and the care provided compassionate and non-judgemental, appeared to feel supported through their TFMR experience and more able to accept and adapt to their loss. Conversely, any interaction with a HCP that was perceived to be negative resulted in heightened parents’ distress, increased their feelings of isolation and withdrawal, and resulted in a more complex and prolonged recovery and grief process.
The research also indicates that HCPs are aware and cognisant that TFMR is a difficult and heart-breaking journey for parents. There was strong congruence between views from the two participant groups providing confidence and credibility to the findings in this study. Information and communication were highlighted by both data sets as a priority for parents. HCPs also expressed a need for more information and training to be able to effectively share information with parents. Both groups were unanimous in their belief that parents need support throughout their journey, especially emotional support, and both datasets highlighted that aftercare specifically was often limited or absent. There was a consensus amongst HCPs about the need for clear professional guidelines and a specific TFMR care pathway for practice. Several parents’ accounts raised issues about a lack of clarity around care and guidance and believed developments in this area would help ensure a more transparent and equitable service. Both groups also considered the importance of the care environment and expressed a need to explore options that ensured the environment, including maternity waiting areas, did not create additional unnecessary distress for the parents. The analysis also indicated that both HCPs and parents considered staffing to be an important consideration, with the majority of participants in both groups suggesting TFMR should be a specialised service with experienced staff who opt-in to work in this area and provide care. This was discussed by both groups in the context of staff attitudes and conscientious objection and the consequent negative impact on the availability and quality of care.
An important purpose of this research is the translation of the findings to inform practice, training and policy to effectively optimise the care parents receive during their TFMR experience. The thesis concludes with an overview of parents TFMR healthcare needs as well as recommendations for practice, policy, education, and future research.
Thesis is embargoed until 31 July 2024.
|Date of Award||Jul 2023|
|Sponsors||Northern Ireland Department for the Economy|
|Supervisor||Mark Tomlinson (Supervisor) & Aine Aventin (Supervisor)|
- Congenital anomaly
- prenatal screening
- termination of pregnancy
- termination of pregnancy forfetal anomaly
- termination for medical reasons
- bereaved parents
- healthcare experiences
- healthcare needs