From the Editor
“You are normal and then the next thing, you know, you’re crazy.”
So comments a woman about her postpartum depression. Typically, we describe this illness with a list of symptoms. But how do patients experience it? In a new World Psychiatry paper, Dr. Paolo Fusar-Poli (of King’s College London) and his co-authors attempt to answer this question with a “bottom-up” approach, looking at both postpartum depression and psychosis. “To the best of our knowledge, this is the first bottom-up review of the lived experience of postpartum depression and psychosis. Experts by experience co-designed, co-conducted and co-wrote the study, leveraging an established methodological template developed by our group to investigate the lived experience of psychosis [and] depression…” We look at the paper and its implications.
Should people with substance problems be forced into treatment? Across North America, some are proposing this idea, including governments in British Columbia and Alberta. In a new Canadian Journal of Psychiatry paper, Benedikt Fischer (of the University of Toronto) and his co-authors look at the issue and the evidence. “Involuntary treatment for severe SUD is a complex and contentious concept that requires careful in-depth consideration before its adoption.”
In the third selection, a paper written anonymously for The BMJ, the author describes the challenges for families of those with severe mental disorders. He notes his deep frustration with visits to the ward, often leaving him in tears. “Perhaps family support needs to become part of the culture on mental health wards, and we should recognise the need for help in communicating.”
DG
Selection 1: “The lived experience of postpartum depression and psychosis in women: a bottom-up review co-written by experts by experience and academics”
Paolo Fusar-Poli, Andrés Estradé, Keshnie Mathi, et al.
World Psychiatry, February 2025
Globally, about one in four women experience perinatal depression. The prevalence is higher in low- and middle-income countries, in women who experienced intimate partner violence, and in those with a previous history of mental disorders.
Perinatal psychosis is considered a rare disease, with only about two in a thousand women affected globally. The prevalence is higher in women with a previous history of mood disorders. Notably, psychotic symptoms may present as extreme features in postpartum depression, and these episodes may be the initial presentation of a psychotic bipolar disorder…Yet, postpartum depression and psychosis remain poorly managed globally. This is partly due to the poor understanding of the qualitative nature of these experiences, as they are typically siloed in academic investigations lacking first-person perspectives or, on the other hand, in autobiographical accounts lacking in-depth analyses.
So begins a paper by Fusar-Poli et al.
Here’s what they did:
- “Experts by experience of different ages and ethnicities, from multiple continents (Europe, Asia and Africa), were invited to participate through the Global Mental Health Peer Network. The Web of Science, PubMed and EBSCO were searched from inception until February 2024… We included qualitative studies providing first-person accounts that involved women with a diagnosis of postpartum depressive or psychotic disorder (postpartum psychosis generally refers to a manic, mixed or major depressive episode with psychotic features, a brief psychotic disorder, or a psychotic disorder not otherwise specified), as operationalized by each individual paper.”
- “Researchers produced a thematic synthesis of selected papers and generated a preliminary list of descriptive themes and sub-themes. Further sources external to the medical domain, including autobiographical books, websites, blogs, and social media material written by experts by experience were also considered within the synthesis.”
- “Experts by experience and academics collectively interacted to draft and review the manuscript via a shared Google Drive platform, and enriched it with phenomenologically informed perspectives.”
Here’s what they found:
On postpartum depression
“Most women with postpartum depression report an unbearable loneliness: ‘It is just a very lonely illness’; ‘The emptiness, the endless loneliness’; ‘One thing you’re not prepared for is the feeling of loneliness’. This experience may relate to both the depressive symptoms themselves and the associated personal or social situation. It typically peaks during the night: ‘I felt totally alone. If the whole world were in my front room, I would still have felt this terrible isolation. The loneliness was even more evident at night’.”
On postpartum psychosis
“In a few cases, postpartum hallucinations or delusions plague women and sink their minds into a psychological hell: ‘In the depths of hell’; ‘I thought I was on my way to hell on earth’; ‘Going to the gates of hell’. They may feel that something horrible resides in their mind, because voices tell them to harm themselves (‘Inside me is a dark force. A dark shadow that looks like me outside of me. If I kill myself, will the shadow go away?’) or their baby.”
In the wider society
“Women can feel invalidated when family members deny the existence of mental problems: ‘In my house, people don’t accept the fact that depression exists’; ‘I told my husband that I might be suffering from postpartum depression, but he didn’t believe me’. In some cases, women even experience stigma from their husband: ‘He never comforts me, only blames [me]’; ‘[My husband] says that I am not a good mother and I am hurt by that’).”
On care
“For those women eventually accessing health care, the system and associated care pathways are often experienced as fragmented (‘There were so many people involved, and they just all said different things’), particularly in low- and middle-income countries (‘The doctors did not attend to me well, and they made me feel so bad… she just took the baby and rushed with her to the nursery’), or at times dismissive of their needs (‘I think they could have at least listened’). Hospitalization, when occurring, may be experienced as terrifying: ‘It was atrocious’.”
On medications
“Several women experience relief from their symptoms with medications (‘Since taking the medicine, I can sleep well and eat well. I now think less about my worries. I suddenly feel good. I have a good appetite and I can eat well. I also do not worry about my children like before. The thoughts do not stick in my mind for too long’; ‘When I take the medicine, I feel better. I can laugh… now. Before I took medicine, I couldn’t’), to the point that they may be reluctant to discontinue them (‘I’m too scared to come off them’).”
A few thoughts:
1. This is an impressive paper published in a major journal.
2. The above summary doesn’t quite capture the nuance and detail of the paper.
3. Some of the patients’ comments are deeply moving.
4. Stigma has declined in recent years – but it still persists. Unfortunately, it was a major reason some hesitated to seek care. “I would feel ashamed… I don’t want people to know I’m mentally ill.”
5. Dr. Fusar-Poli and his group have produced several similar papers covering psychosis, depression, and adolescent illness. Let’s hope they publish more in the future. Their paper on depression was discussed in a past Reading. You can find it here:
The full World Psychiatry paper can be found here:
https://onlinelibrary.wiley.com/doi/full/10.1002/wps.21264
Selection 2: “Involuntary Treatment for Severe Substance Use Disorders – Issues, Evidence and Considerations for its Use”
Benedikt Fischer, Wayne Hall, Didier Jutras-Aswad, et al.
The Canadian Journal of Psychiatry, 2 May 2025 Online First
The proposition that persons with severe substance use disorders (SUDs) be given ‘involuntary treatment’ (InvTx) has recently been floated by protagonists across the political spectrum in Canada in response to the persistent toxic drug crisis which urgently requires more effective responses. In general, InvTx involves the compulsory treatment – sometimes in contexts of physical detention – of individuals with severe SUD for limited but possibly repeated periods of time irrespective of their will by force of designated (e.g. mental) health law… Discussions of InvTx for SUD, a sub-type of psychiatric condition in most nosological classification systems, are commonly framed by a ‘pro’ or ‘con’ nature, yet warrant careful consideration of some essential aspects.
InvTx provisions are already in place for severe mental health disorders – generally for individuals who represent a risk of acutely harming themselves or others – under (diversely scoped) provincial laws in Canada. Current discussions in different provinces focus on whether to apply these existing laws to severe SUD, or implement new legislation to do so.
So begins a paper by Fischer et al.
They note that the idea isn’t new. “As far back as 1927, the federal government proposed to establish detention centres to provide compulsory treatment for addiction.”
They summarize the reasoning of proponents. “Many supporters of ‘InvTx’ believe that committing an individual with severe SUD to treatment will ensure that they receive effective and humane treatment that will put them on a path to recovery and a socially and economically productive life. While InvTx is generally motivated by the prospect of producing benefits for both the individual and society, it faces several fundamental caveats and challenges that arise from the nature of severe SUDs and available treatment options.”
They note the SUD “is typically not a curable disease” and add: “this is especially so in persons with the severe and chronic conditions who are the most likely candidates for compulsory treatment. In many instances, severe SUDs co-occur with other mental health conditions (e.g. depression, personality disorders) that not only worsen health status outcomes, but pose major challenges for effective treatment.” They highlight the challenges of opioid use disorder and opioid agonist therapy. “Substantial proportions or majorities of those entering soon exit OAT within short periods and more relapse while treatment-engaged, and face ongoing risks (e.g. overdose). Outcomes are somewhat better in well-resourced special/high-intensity treatment options (e.g. injectable OAT) which, however, are offered only to small sub-groups.”
What would be considered a successful outcome? “We realistically should not expect for the SUD-related problems to be resolved. At best, we could see the person’s SUD-related problems temporarily stabilized or managed with adequate, state-of-the-art treatment provided, while knowing that there was a high risk for relapse on release that requires comprehensive and effective post-commitment care provisions.”
They also wonder about evidence. “Bahji et al.’s recent systematic review found that only 7-of-42 studies on InvTx for SUD reported comparatively improved outcomes compared to voluntary treatment. However, most of these studies assessed treatment retention and only one showed an actual reduction in substance use, informing the conclusion that there was ‘a lack of high-quality evidence to support or refute InvTx’ which consequently requires more research to inform policy decisions.”
They propose a focused intervention for study. “It may be warranted for limited sub-groups of individuals with severe SUD and related mental health/cognitive disorders who have lost control over their lives and who are at high risk of harming themselves or others. Even in these cases, InvTx requires rigorous weighing, safeguarding and monitoring for benefits and collateral costs…”
A few thoughts:
1. This is a well-argued paper.
2. They raise reasonable points, including about the practicality of involuntary care. What are the defined goals? Would they include periods of sobriety? The initiation of meds? Episodes of care including residential care?
3. To play the Devil’s advocate: if substance problems are potentially deadly, isn’t it our duty to help those who are most vulnerable even if they don’t agree?
The full Canadian Journal of Psychiatry paper can be found here:
https://journals.sagepub.com/doi/10.1177/07067437251338553
Selection 3: “Please support families of those experiencing psychosis”
Anonymous
The BMJ, 17 April 2025 Online First
I was 10 when my sister first experienced psychosis. I remember her hearing voices, distressed and upset, shouting at someone we couldn’t see. She was soon admitted to hospital for the first time and has since had many further admissions for psychosis. To me her condition seems to have an extreme on-off tendency. She will be well for long periods of time, and then within days she will be convinced she is dead, that the room is full of snakes, and the world is falling apart around her. Her recovery is often slow, and several times she has had to spend many, many months in hospital.
Visiting my sister was hard. At times she would be so unwell that she could barely speak, transported to some other world that she was unable to escape. At other times, she would be distressed, bursting into tears constantly or inconsolable with fear. Although visiting felt important, it was hard to know what to do on these visits.
So begins a paper written anonymously.
He describes the challenges of connecting with his sister. “My family and I often wondered how best to communicate with my sister when she was in the grip of psychosis. Her hallucinations and delusions clearly terrified her. It felt natural to tell her they were not real, but to do this continually was to spend time constantly in opposition to her, contradicting her experiences. Nobody ever talked us through how to handle this.”
The family spoke with a physician who provided meaningful advice. “He explained a way of recognising the emotional impact of my sister’s hallucinations, and then, if possible, trying to dispel it by displacing it with trust. Something like, ‘That sounds really scary for you. Perhaps let’s look under the bed together and see if there’s anything there.’”
He describes the challenges of visits. “Psychiatric wards are not always easy places on which to spend time. A visit might involve interactions with patients other than my sister, and knowing how to behave in those situations didn’t necessarily come easily.” He contrasts his experiences with those of people seeing family in ICUs. “When relatives visit patients in an intensive care unit, nurses and staff members are trained to support those visitors: to explain what the machines mean, to warn them of what might be hard, and to ensure their emotional needs are met. I don’t ever remember such support for my family.”
A few thoughts:
1. This is short but impactful paper.
2. The comment about ICUs is strong. Families are coached before ICU visits. Why not psychiatric ones?
3. His conclusion is somewhat unsettling. “In some ways my sister is lucky: she has a well resourced and educated family advocating for her, which so many do not. Yet despite that, we have often not found it easy.” Could we do better?
The full BMJ paper can be found here:
https://www.bmj.com/content/389/bmj.r598
Reading of the Week. Every week I pick articles and papers from the world of Psychiatry.
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