Looking at historical records gives us an idea of how we can fail to fully understand medical conditions if the patient is denied a voice. Photograph by Neil Brandvold for USAID
Looking at historical health-care records can reveal how misunderstanding of a medical condition first came to develop and why it may not be being treated properly.
Conditions such as postnatal psychosis – a serious mental illness affecting new mums – often incorrectly results in the woman being admitted to a general hospital or mental health facility rather than a specialist mother and baby unit. The women are mistakenly admitted because early signs are not recognised and the condition is not diagnosed until it has reached its most extreme form.
Greater awareness of postnatal psychosis could lead to earlier treatment and faster recovery, possibly without hospitalisation.
Current statistics tell us postnatal psychosis affects one to two women in every 1,000 after childbirth. That means every year more than 600 women and their babies experience its effects in Australia. Research into historical health-care records helps us understand how the lack of awareness of this condition developed.
We’re not treating postnatal psychosis properly
The symptoms of postnatal psychosis appear in the first four weeks after childbirth. These include hallucinations, delusions, confused thinking and rapid mood swings.
There is an increased risk of suicide and, less commonly, infanticide. Another more insidious consequence is the disruption to the bonding process between the mother and child, possibly leading to abuse or neglect of the child. This has lifelong psychological consequences.
All these risk factors can be avoided if the condition is diagnosed and managed in an effective and timely manner.
Research recommends that women experiencing postnatal psychosis be admitted to specialist mother and baby units.
However, a lack of awareness about the condition means some states have no publicly funded mother and baby beds, including New South Wales. Mothers experiencing the condition are often admitted to public mental health facilities which struggle to provide a safe environment for the child.
Women diagnosed with the condition complain that health-care professionals did not understand how the treatment affected them.
How looking at past records can help affected women
Historical health records from two former psychiatric hospitals in NSW, Gladesville and Callan Park, were investigated.
The records chronicled how health-care professionals described the admission of women to the hospitals with a diagnosis of psychosis or mania following childbirth from the late 19th century to the post-WWII period. There was also an overview of each woman’s condition on admission, the progress of her illness, and the outcome of the admission.
There were often vague references to difficulties at home. These were described as financial worries, drink, or even just “worry”.
How these particular difficulties affected the women cannot be known because one very important element was missing from the records. The voices of the women were only included in their assessment if they provided evidence that they were experiencing hallucinations or delusions. It is therefore impossible to know how the women felt about their illness, their admission, or what they may have believed caused their illness.
Except in a few cases, which mentioned that the baby died or had been sent to a foundling home, there was no reference to the babies.
The records demonstrated how the lack of the woman’s voice affected their treatment and care.
In the earlier records, spanning from the late 19th century to the 1930s, three separate scenarios emerged.
First, there were women who were admitted with a primary mental illness and whose condition steadily improved until they were discharged back to their families in a timely manner, usually in the space of a year.
Second, there were women who were experiencing a mental illness that became chronic and they remained in hospital until they died or were transferred to another hospital.
The final group of women, comprising 17% of the total, were actually physically, not mentally, ill. They experienced delirium presumably caused by an infection from the trauma of childbirth or that developed in the early postnatal period.
The symptoms these women displayed were described in exactly the same manner as the symptoms described in the women who had a primary mental illness. However, the outcome of the admission was very different as these women often died within a week of admission.
These records dated from the era before the introduction of antibiotics, making it very difficult to treat these infections. However, it is still shocking that these women were admitted to a psychiatric hospital rather than being cared for in a general hospital.
The situation changed after World War II. With the introduction of antibiotics, there were no records of women dying after being admitted to hospital with delirium caused by an infection. There was also more information about the women in the records, but again this did not come from the women. This information was provided by relatives who commented on the women’s behaviour, personality and circumstances prior to admission.
In the early post-war years these particular records give a glimpse of the difficulties faced by women left alone while their husbands fought overseas. And in some cases, they remained traumatised by the economic deprivations of the depression.
Later, in the 1950s, women continued to be admitted to Gladesville and Callan Park hospitals (although the full Callan Park health-care records are lost) but in much lower numbers. Records from Gladesville show that most of these women were discharged a little over a year later, but at least three women were discharged with misgivings. Two of the women were considered suicidal and one women was considered to be dangerous when she left the hospital.
In one particularly sad case, a woman fell pregnant while on leave from Gladesville but, on the advice of the medical superintendent, she had an abortion and was sterilised by tubal ligation (known colloquially as having one’s “tubes tied”) at the same time. The reason given for these procedures was that she attempted suicide during her admission. This woman was 25 years old.
Although many of the women described in the hospital records were discharged home, the records contained no details about how they coped at home afterwards. Despite the fact that the women were the centre of the records, we came away knowing nothing about their lives or even who they were.
These records provide a salutary lesson for current health-care professionals – they demonstrate how the needs of women and their children are lost if there is no record of how the women see their experience of illness.
If health-care professionals do not understand how women make meaning of their experience of psychosis or mania after childbirth, how can services be established that cater for the specific needs of the women and their children?
Diana Jefferies does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.