Editor’s Note: This is part of a series of regular columns on patient involvement in health care.
For many parents, the experience of pregnancy and childbirth is an unforgettable journey filled with joy, excitement and hope, even when looking back after many years.
However, the reality for others is that the physical, mental and emotional tolls endured by people who give birth –starting from the time the egg is fertilized to even years after the child is born – can paint a not-so-rosy picture.
If you have recently attended parenting classes, received childbirth-related information from a health-care professional or even spoken with other parents, you may have heard the term perinatal depression (PD), or perhaps you may be more familiar with what the diagnosis used to be called: postpartum depression.
It is a diagnosis given to pregnant people that experience persistent sadness, loss of interest in previously enjoyed activities and changes in appetite or sleep. People diagnosed with PD can also experience overwhelming fatigue, feelings of worthlessness or guilt and troubling thoughts, including fear of harming themselves or their baby.
Etymological analysis of the term “perinatal” reveals that its prefix, “peri” (Greek for around), reflects the fact that people can experience PD during pregnancy and after childbirth, not just after it (the prefix used to be “post,” Latin for after). This change in nomenclature follows growing attention to perinatal mental health disorders (PMHD) that affect approximately one in five people who give birth in Canada.
The most common of PMHDs are perinatal anxiety and perinatal depression. But one particular PMHD is often unconsidered or forgotten when providing perinatal mental health care: Childbirth-related Post-Traumatic Stress Disorder (CB-PTSD).
CB-PTSD affects millions of new parents worldwide each year; its effects ripple through families, disrupting child-parent bonding and delaying the recovery process. It is estimated that the prevalence of CB-PTSD touches around one to 15 per cent of parents who give birth worldwide.
Yet, despite this prevalence, stigma and lack of standard screening protocols keep many people suffering in silence.
Indeed, those who may be experiencing CB-PTSD tend to avoid sharing their symptoms because they fear being judged or having their competency as parents questioned. Others simply don’t recognize their experiences as traumatic, dismissing them as typical postpartum or perinatal challenges. Health-care systems also lack standardized screening tools, making it tough for doctors and mental health professionals to identify who needs help.
Childbirth-related PTSD can stem from various factors, including traumatic birth experiences such as emergency caesarean sections, severe pain without adequate management and complications with the newborn requiring admission to the neonatal intensive care unit (NICU). A perceived lack of control during the birthing process and inadequate support from health-care providers can exacerbate feelings of helplessness and trauma.
Additionally, people with a history of trauma or existing mental health conditions such as anxiety and depression are more susceptible to CB-PTSD. The combination of these factors highlights the complexity of perinatal mental health and the need for a holistic approach that prioritizes listening to and supporting patients throughout their birthing journey and after it, too.
While statistics and clinical definitions provide a framework for understanding PMHDs, they often fall short of capturing the nuanced realities faced by those suffering from them. Lived and living experiences of patients are invaluable in this context. These narratives offer insights that are rich, varied and essential for shaping effective health-care practices and policies.
Many patients feel their voices are marginalized or overlooked in the clinical setting.
One such insight is the realization that many patients feel their voices are marginalized or overlooked in the clinical setting. It is crucial for health-care providers to create an environment where patients feel safe and validated in sharing their experiences. This can lead to better diagnosis, improved treatment plans and, ultimately, more effective support systems.
In a recently published study in Nature, AI and narrative embeddings detect PTSD following childbirth via birth stories, a multi-national team of researchers gathered nearly 1,300 birthing stories through surveys, with respondents describing their most distressing experiences during childbirth to Artificial Intelligence (AI) models trained to understand language patterns and emotions. The AI identified which stories had markers of CB-PTSD based on the checklist required for the diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
The AI learned to differentiate between CB-PTSD and non-CB-PTSD through training on a large set of labeled examples where the presence or absence of CB-PTSD had already been determined using a standardized process.
Using AI to detect CB-PTSD from childbirth stories can greatly improve care for new parents, allowing health-care providers to offer support and treatment before the condition becomes more severe, and ensures that people experiencing CB-PTSD get the right care at the right time, improving their health and well-being. By listening to and understanding these stories, physical and mental health-care practices can become more responsive and supportive, leading to better outcomes for individuals, newborns and families.
Imagine a world where an OB-GYN team could listen to a patient’s birthing story before, during and after the experience, and with the help of an AI tool flags a patient’s narrative as having subtle markers of trauma, allowing the providers to respond with the right support at the right moment. As the technology matures, improves and expands, it could also be adapted to identify other perinatal mental health challenges like depression and anxiety.
This growing shift toward AI in health care and health research isn’t just about cool data or technology projects but about finding ways that help health-care providers recognize and respect the complex emotional landscapes that new parents navigate. Using patient narratives is about giving people a voice, engaging them in their care, and offering a safe space where their stories can lead to better health outcomes.
To understand the transformative potential of listening to patient narratives, consider reading the anthology of perinatal mental health stories from conception to postpartum, published by the Canadian Perinatal Mental Health Collaborative, an organization working to improve perinatal mental health care through advocacy, research, education and public awareness.
