The first study exploring women's experiences of peer support following a termination for medical reasons (TFMR) highlights the profound isolation, misunderstanding and stigma women experience and the importance of peer support.
The research entitled "Being seen, heard, witnessed and acknowledged" in the Journal of Reproductive Health was led by Heather Robinson with Ellie Vowles and Fiona Lobban from Lancaster University, Áine Aventin from Queen's University Belfast and Paul Marshall from the University of Liverpool.
The loss of a baby during pregnancy is a distressing event for women and their families. For some expectant parents, their baby loss follows a diagnosis of a fetal anomaly, sometimes incompatible with life, or posing risks to the mother's health, leading to the often heart wrenching decision to end their pregnancy. Also referred to as termination for medical reasons (TFMR), this experience affects 4.6 per 1,000 births across Europe and is associated with extreme distress, grief and emotional trauma as well as stigma and isolation.
The researchers held six online focus groups with women living in Great Britain who had experienced TFMR in the last 10 years.
Lead researcher Dr Robinson said: "Bereavement following a termination for medical reasons (TFMR) represents a distinct and often isolating form of grief. Many people find themselves without adequate understanding or support, which can contribute to prolonged negative impacts on mental health and well‑being."
The study highlights the profound isolation, misunderstanding and stigma women experience following TFMR and the unique value of TFMR-specific peer support for validation, normalisation and connection.
"Hearing that very first few minutes where we all went round and said that none of us got any support to start with just broke my heart, that we all felt that lonely at that time, and we're all here yet, you know, we're all in the abyss, we're all around. We could have supported each other, but none of us got that, so I'm sorry that none of you got all of that."
"Within a peer-to-peer framework, I think you've got the chances for being seen, heard, witnessed and acknowledged and not dismissed. And that validation is completely- it's invaluable".
However, access to such support was often dependent on luck, with postcode variation and professional gatekeeping shaping whether women found help or were left searching for support alone.
Five themes were developed based on their discussions:
· women felt shocked by the unexpected situation where they had to consider terminating their pregnancy and isolated with grief that they could not openly share with family and friends
· they felt peer support for TFMR was important because only others with the same experience truly "got it"
· the support women got, and how easy it was to find, depended on where they lived and how helpful their bereavement midwife was
· how and when women wanted peer support changed over time
· hearing other women's stories could sometimes be difficult
Dr Robinson said: "Overall, we found that TFMR is very distressing, and access to support across the country varies. Peer support offers a powerful, relatively inexpensive way to help, but clearer routes to getting peer support following TFMR are needed. Ensuring that people bereaved by TFMR have tailored peer‑support spaces that are accessible and inclusive is crucial."
Jane Fisher, Director of the charity Antenatal Results and Choices (ARC), welcomed the findings.
"We were pleased to see the publication of this important research. Antenatal Results and Choices has offered trained peer support and membership of safe private online forums to parents bereaved by TFMR for decades. We know how valued this support is by parents who can feel very isolated and overwhelmed after this complex loss and were gratified to see our anecdotal experience validated by evidence."
