Tag Archive for: politics

Behind the Science: Politics of Women’s Hormonal Disorders

Authors: Alex Lukey and Arrthy Thayaparan (Blog Coordinators) || Interviewing: Shruti Buddhavarapu, B.A., M.A., University of British Columbia 

Published: August 27th, 2021

There is no single definition of polycystic ovarian syndrome, or PCOS. But what we do know is that this complex disease is one of the most common hormonal disorders in women of reproductive age.

In this month’s article for our Behind the Science Series, author and researcher Shruti Buddhavarapu discusses her master’s work on the medical and gender politics of PCOS in India.

How did you become interested in women’s health research? How did you decide to research PCOS in India?

I started showing PCOS symptoms around the age of 14-15 but it took another 10 years before I officially received a diagnosis. The journey from first noticing my symptoms to finally finding a method of managing the symptoms that aligned with my views was brutal. Women are constantly gaslit in the doctor’s office. We have to toe the line between trying to be “The Good Patient”, and fighting the condescension of a system that naturally distrusts our symptoms and our accounts of those symptoms. I was also hugely disappointed by the number of doctors who asked me to come back to them when I wanted kids—not if. It was as if PCOS only mattered because it threatened my ability to reproduce.

My research on PCOS uses critical discourse theory and analysis which have been important tools for me all through academia. This methodology looks at what the language we use tells us about the social context we’re in. It assesses the ways in which the words we use (consciously and unconsciously) create and maintain social inequalities and systems of power.

Now it seems natural that I’d apply those skills to expose the professional, political and personal networks that underpin an individual experience of a particular medical syndrome. 

How would you explain your research in simple terms?

My PCOS research studied the language and knowledge around illness and health. The paper I published in the Journal of Medical Humanities was a modified version of my Master’s research. I look at the lived experiences of folks with PCOS, especially in India. Which is to say, outside of medical discourse and doctor prescriptions, what does it mean to live with PCOS in the day-to-day? I wrote about how the lack of a known cause for PCOS allows for there to be convenient assumptions on womanhood and femaleness from those who benefit from patriarchy. It used to be common to tell women with PCOS that they invited the syndrome upon themselves due to a “Westernized lifestyle and diet.” I’ve heard this many times from doctors myself. Add to it the horror that women with PCOS may be infertile, which really threatens this nationalist idea of the pure, untarnished, un-Westernized and thus fertile and healthy Indian woman. This scare-mongering and moral policing of folks with PCOS serves no one. It focuses entirely on the wrong thing — the potential of women as mothers as opposed to individuals.

What do you think is the most important impact of your research?

Back in 2015, when I wanted to perform a critical discourse analysis of folks’ experiences with PCOS through their notion of femaleness/femininity, I was surprised to find a huge lack of material. Most academic writing on PCOS was medical with only a handful of sociological articles. So I was creating the literature I wanted to cite. I try to push the boundaries we take for granted in medical literature by bringing attention to the unrelenting but often invisible biases that are present in medicine. 

Why do you think we need to focus on women’s health in research?

I think there’s an urgent (mind you, it’s been long overdue, like centuries overdue) need for science and research to reflect the spectrum of a variety of lived experiences.

Basically, we need to democratize research. We need queer, non-binary, trans experiences to show up in our research, and we need them to be researchers. For too long, science has been the repository of colonial violence, centring a white, cis-male experience. Did you know that the Ferriman-Gallwey index (to measure hirsutism—a condition that results in “excessive, male-pattern” hair growth in women) was built on a caucasian model of “hairiness”? So for a long while, women of colour were judged on a scale that just didn’t factor in their genetic histories. 

Why is your work and women’s health research important and needed in India?

While PCOS is something that affects folks worldwide, India has one of the highest rates of the syndrome. There are ties linking this to the alarming rates of type 2 diabetes in India. (There is a close connection between PCOS and insulin resistance—often a precursor to diabetes.) 

In many ways, I want to say my research is important in India because this is where I live, and I cannot separate my location from my politics. But it also intuitively is where I need to be with my research because such a large population has PCOS in India. 

Did you face any challenges conducting your research or increasing awareness of your findings?

In my case, the biggest impediment to my research was the lack of previous research. But I knew this while going in, so I was prepared for it. 

Since one of my key arguments was that there was so little of it to go around (outside of scientific discussions), it only served my argument’s larger purpose. With my thesis, I wanted to say: “Here’s all the research we have so far. It is pitiful and has a history of being biased towards patriarchal ideas of womanhood. We need to change our language about PCOS to make it accessible to everyone, without bias.”

What are you working on now?

I recently published a creative non-fiction memoir about rootlessness, chronic illness and growing up and dating as a woman in urban India. It’s called “The Weight of a Cherry Blossom”. I’ve also been involved in a couple of pop-culture projects as a PCOS specialist/researcher—Buzzfeed, Mid-Day, Mumbai Mirror, Firstpost and A Sense of Place on Roundhouse Radio Vancouver. 

For Firstpost, for instance, I wrote a series of reimaginings of popular classics, such as Alice in Wonderland and Jane Eyre, where the protagonists have PCOS. It is tongue-in-cheek and irreverent but was a wonderful way to open conversation about PCOS. I would like to write more about the networks of chronic illness, capitalism and notions of productivity in the workplace. 

What makes you excited about the future in women’s health research?

That it’s changing! So radically, so exponentially, so determinedly. When I started research on PCOS in 2015, there was very little material in and outside of academia on the topic. Now, the number of youtube channels, IG accounts dedicated to illness discourse and women (always inclusive of trans folk) and non-binary folks’ health is so affirming. There’s so much more information coming from folks with lived experiences and women’s health researchers to the general public. 

Where would you like people to connect with you?

I’m happy to chat/connect on shrutirao1988@gmail.com or shrutirao.com! 

Responses to Anxiety and Depression During Pregnancy Require Funding Say Care Providers

Author: Julia Santana Parrilla, MSc Population & Public Health at the University of British Columbia | Editors: Alex Lukey and Arrthy Thayaparan (Blog Coordinators) 

Published: April 23rd, 2021

Perinatal mental health is considered a global public health issue. [17] So, why don’t we talk about it more?

In the Global North, pregnancy care and interventions developed exponentially throughout the twentieth century. [2] The medicalization of pregnancy and childbirth has led to significant innovations in care. It has also problematized the experience in ways that privilege medical expertise and suppress pregnant people’s agency. In the early 1900s, reproduction was commodified as pregnancy supplied the labour force for industrializing societies. [2] Given how babies are produced from our bodies, it is unsurprising that pregnancy was reduced to gestation. Over a century later, these foundations persist in our social imaginations and shape healthcare priority-setting. From research to funding, education to practice, and recommendations to policy, mental health has yet to be integrated in pregnancy care.

Mood and anxiety disorders are the most common types of mental ill-being locally and globally. [6] But, anxiety and depression occur more frequently among women than in men. [6,9,16] This lifetime prevalence is seen across cultures and most often manifests during reproductive years, particularly in times of dramatic hormonal fluctuations, such as during pregnancy and after birth. [10,16] Approximately ⅓ women may experience anxiety symptoms during pregnancy. [19] In British Columbia (BC), up to ⅕ will experience significant depression associated with pregnancy and childbirth. [4]

I dedicated my thesis research to understanding how anxiety and depression are addressed with pregnant people. In BC, people can choose to be cared for throughout pregnancy by a family physician (FP), obstetrician-gynecologist (ObGyn), and/or registered midwife (RM). I interviewed five FPs, four RMs, and three ObGyns practicing in the Lower Mainland to understand their attitudes and perspectives regarding anxiety and depression during pregnancy, those who experience them, and how to address them (identification and management). I perceived providers on the frontlines of pregnancy care to have the power to shape families’ health outcomes and the initiatives and policies that impact them. [13,20] Understanding provider perspectives is the first step in improving our healthcare system’s responsiveness to families’ needs.

Participants reported seeing anxiety and/or depression regularly. Some even expressed expecting to see them given how the journey toward parenthood is a “big change” [RM,7] full of unknowns that can cause much distress and call for psychosocial adjustments. [21,22] As this FP put it:

“[..] the antenatal period is very hard to come to terms with […] there’s just so many changes going on, mentally, physically, emotionally. It’s hard for people to even A: recognize that there is an issue, and B: sort of come to terms or accept that there might be an issue.” [FP,5]

Feeling “[…] sad of the life you left behind, and being anxious of what’s going to happen, being afraid of giving birth […]” [RM,6] was considered natural by most. However, the aggravation of fears by perceived social pressures was a common frustration. As this ObGyn explained:

“[there] is a lot of pressure on women to do everything perfectly during pregnancy and the reality is it can be a lot harder than expected and that the expectation that are created are unrealistic.” [ObGyn,10]

Most participants found that messaging about how to be during pregnancy undermined the capacity for self-compassion essential to cope with unexpected emotions/moods. This requires disruption. As asserted by this FP:

“[…] when society and this culture is telling you so many things about how you have to be as a mom and like there’s so many outside pressures […] what would help? Like, changing that!” [FP,4]

The confluence of this “big life transition” [RM,8] with the stigma that befalls those who are experiencing anything other than the “ideal pregnancy” predicts and worsens anxiety and/or depression. [23] In response, providers centered the normalization of anxiety and depression in encouraging disclosures and supporting management. Often, this involved letting pregnant people know “[…] it’s common” [FP,3], and that they’ll “[…] figure it out together.” [RM,8]

Most participants favoured this approach over-relying on standardized screening tools, such as the Edinburgh Postnatal Depression Scale (EPDS) integrated into their antenatal care forms. [5] This is consistent with previous investigations. [3,7,8,13,14] Many expressed skepticism about the EPDS’ reliability. As an ObGyn with 16 years experience said:

“All of our patients were supposed to be filling it out, but it didn’t seem to be identifying things particularly well for us.” [ObGyn,10]

Some participants reported refraining from using the EPDS due to perceived harms. They expressed worry about isolating people, giving them a stigmatizing label (i.e. mentally ill), and/or triggering the very issues they are trying to identify, prevent, and manage. One RM referred to screening tools as “systems of triggers” [RM,6] adding, “I feel like it is quite isolating, and I feel like it is quite stigmatizing.”[RM,6]

Discussing mental health openly was considered less alienating than using a screening tool. Participants explained how dialogue feels innocuous (safe) whereas tools feel official (intimidating). They considered identification an important first step toward management and supporting healthy pregnancy outcomes. Unfortunately, the stigmatization and complexity of mental health presents challenges in communication. As this RM said:

“one of the things [providers] find challenging is that […] there’s different ways that you can check in with people and people respond very differently to different types of communication.” [RM,8]

Negative perceptions of mental health and reluctance to talk about it mean that there is “[a] fine line between trying to help and offending people” [RM,7]

This is cause for concern given how anxiety and depression during pregnancy often manifest in avoidance of care, poor adherence to recommendations and poor health habits relating to sleep and nutrition. [11,15,18] All exacerbate mental health conditions and risks of poor health outcomes. [4] Providers expressed concern about keeping clients engaged.

Additionally, feeling underprepared and overburdened in supporting pregnant people experiencing anxiety and/or depression was commonplace. All wished they received the systemic support to “make it easier!”[RM,8] beginning with their training. As this RM said:

“[…] perinatal depression is the number one, uh, issue in pregnancy. Not, you know, preeclampsia, and not, you know, whatever, it’s perinatal depression […] and we’re so not educated in it […]” [RM,6]

Even though some may think of mental health as within the scope of their care responsibilities, it is not perceived to be facilitated. Most reported: 

“[…] I feel like I try to do my best.” [RM,8] but when “[…] people, resources, money and resources that are… scarce.” [RM,7], “[…] healthcare providers take on a lot of responsibility and a lot of worry.” [FP,1]

Generally, there is a sense of insecurity in the quality of care provided given the lack of mental health integration.

When discussing what would be advantageous to their efforts, many echoed this RM in needing a “multi-pronged approach” [RM,9] that allocates resources to provider capacity, specialist availability, and resource accessibility (affordability and relevance). They emphasized this is our systems’ responsibility and insisted that funding translates to care priority. In this RM’s words:

“[…] the government decides how they’re going to fund us and what they’re going to pay for […] if they don’t put funding into programs to support mental health and wellness, then… then just the programs don’t exist for us to refer people to.” [RM,8]

Simply, we need “[to] build a government that supports mental health care” [FP,1]

To create demand for existing structures to change in favour of integrating mental health, we need to think about who has the power to stimulate adaptations by the healthcare system. While I entered this project assuming primary care providers had this power, participants identified that the changes need to happen upstream where the money comes from. It is with sincere alignment with participants that I assert the need to fund perinatal mental health research, training, and care. When perinatal mental health is not represented in priority-setting and decision-making documents and spaces, it minimizes the urgency of the issue, trivializes avoidable adverse health outcomes, and erases the people (and families; communities) experiencing them.

The World Health Organization and the United Nations Population Fund have jointly decreed there can be “no health without mental health”. Perinatal Services British Columbia recognizes that early detection of mental health challenges before, during and after pregnancy offers opportunities to improve health outcomes for parents and families. [5] Mental health promotion, prevention and early intervention show positive investment on returns. [12] Our Ministry and health authorities are responsible for making mental health services available and accessible, from prevention to management. [24] 

Far more than producers of the next generation/s, pregnant people’s care should not be exclusive to physiology and babies’ gestation. To care for populations equitably, we must recognize how the erasure of complexity in people’s experiences perpetuate health and social inequities. We must make room for the experiences that are silenced, erased, and stigmatized to be demystified and supported.

 

Disclaimer: To meaningfully address perinatal mental health disparities, all pregnancy experiences within our colonial, cisgender, ableist, hetero-patriarchy must be accounted for.

 

 

 

 

Bibliography

Santana Parrilla, J. (2020). Addressing anxiety and depression during pregnancy: primary antenatal care provider perspectives. University of British Columbia. http://hdl.handle.net/2429/74143

Al-Gailani, S., & Davis, A. (2014). Introduction to “Transforming pregnancy since 1900.” Studies in History and Philosophy of Biological and Biomedical Sciences, 47(Pt B), 229–232. https://doi.org/10.1016/j.shpsc.2014.07.001

Bayrampour, H., Hapsari, A. P., & Pavlovic, J. (2018). Barriers to addressing perinatal mental health issues in midwifery settings. Midwifery, 59, 47–58. https://doi.org/10.1016/j.midw.2017.12.020

BC Reproductive Mental Health Program. (2006). Addressing Perinatal Depression: A Framework for BC’s Health Authorities (Framework) [Framework]. BC Reproductive Mental Health Program: BC Women’s Hospital & Health Centre, an Agency of the Provincial Health Services Authority. http://www.health.gov.bc.ca/library/publications/year/2006/MHA_PerinatalDepression.pdf

BC Reproductive Mental Health Program, & Perinatal Services BC. (2014). Best Practice Guidelines for Mental Health Disorders in the Perinatal Period. http://www.perinatalservicesbc.ca/Documents/Guidelines-Standards/Maternal/MentalHealthDisordersGuideline.pdf

Canada, P. H. A. of. (2016, May 27). Report from the Canadian Chronic Disease Surveillance System: Mood and Anxiety Disorders in Canada, 2016 [Research]. Aem. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/report-canadian-chronic-disease-surveillance-system-mood-anxiety-disorders-canada-2016.html

Coburn, S. S., Luecken, L. J., Rystad, I. A., Lin, B., Crnic, K. A., & Gonzales, N. A. (2018). Prenatal Maternal Depressive Symptoms Predict Early Infant Health Concerns. Maternal and Child Health Journal, 22(6), 786–793. https://doi.org/10.1007/s10995-018-2448-7

Fairbrother, N., Corbyn, B., Thordarson, D. S., Ma, A., & Surm, D. (2019). Screening for perinatal anxiety disorders: Room to grow. Journal of Affective Disorders, 250, 363–370. https://doi.org/10.1016/j.jad.2019.03.052

Gobinath, A. R., Mahmoud, R., & Galea, L. A. M. (2015). Influence of sex and stress exposure across the lifespan on endophenotypes of depression: Focus on behavior, glucocorticoids, and hippocampus. Frontiers in Neuroscience, 8. https://doi.org/10.3389/fnins.2014.00420

Hendrick, V., Altshuler, L. L., & Suri, R. (1998). Hormonal Changes in the Postpartum and Implications for Postpartum Depression. Psychosomatics, 39(2), 93–101. https://doi.org/10.1016/S0033-3182(98)71355-6

Kruper, A., & Wichman, C. (2017). Integrated Perinatal Mental Health Care. Psychiatric Annals, 47(7), 368–373. https://doi.org/10.3928/00485713-20170531-01

Mental Health Commission of Canada. (2014). Why investing in mental health will contribute to Canada’s economic prosperity and to the sustainability of our healthcare system (p. 5). Mental Health Commission of Canada. https://www.mentalhealthcommission.ca/English/media/3104

Price, S. K., Corder-Mabe, J., & Austin, K. (2012). Perinatal Depression Screening and Intervention: Enhancing Health Provider Involvement. Journal of Women’s Health, 21(4), 447–455. https://doi.org/10.1089/jwh.2011.3172

Psaros, C., Geller, P. A., Sciscione, A. C., & Bonacquisti, A. (2010). Screening Practices for Postpartum Depression Among Various Health Care Providers. The Journal of Reproductive Medicine, 55, 477–484.

Stewart, D. E. (2011). Depression during Pregnancy. New England Journal of Medicine, 365(17), 1605–1611. https://doi.org/10.1056/NEJMcp1102730

Weissman, M. M., & Olfson, M. (1995). Depression in Women: Implications for Health Care Research. Science, 269(5225), 799–801. JSTOR. http://www.jstor.org/stable/2888484

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World Health Organization. (2008). Improving Maternal Mental Health [Millennium Development Goal 5 – improving maternal Health]. https://www.who.int/mental_health/prevention/suicide/Perinatal_depression_mmh_final.pdf?ua

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Selix, N., Henshaw, E., Barrera, A., Botcheva, L., Huie, E., & Kaufman, G. (2017). Interdisciplinary Collaboration in Maternal Mental Health. MCN, The American Journal of Maternal/Child Nursing, 42(4), 226–231. https://doi.org/10.1097/NMC.0000000000000343

Deave, T., Johnson, D., & Ingram, J. (2008). Transition to parenthood: The needs of parents in pregnancy and early parenthood. BMC Pregnancy and Childbirth, 8(1), 30. https://doi.org/10.1186/1471-2393-8-30

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Photo by Janko Ferlič on Unsplash

International Women’s Day: UBC Day on the Hill

Authors: Bonnie H. Lee, PhD student, WHRC Data Analyst and Dr. Liisa Galea, PhD, WHRC Lead | Editors: Alex Lukey and Arrthy Thayaparan (Blog Coordinators) 

Published: March 8th, 2021

The advancement in scientific knowledge is astounding to watch. The pace of science is expanding, and it is sometimes difficult to keep up with our changing world. One example of the fast pace of scientific research has been getting several vaccines for COVID-19 in such a short period of time. Who would have believed that we could have so many great options in less than a year? Why we are so far ahead in these discoveries is largely due to scientific research. Thankfully, many researchers have been studying things like bat coronaviruses and the efficacy of mRNA vaccines for many years. 

However, one thing we are woefully behind on here in Canada and across the world is women’s health research. We know that women suffer from poorer health than men due to missed diagnoses, minimized symptoms, a greater burden of certain diseases and because drugs are often tested in males and men. This has resulted in poorly targeted treatment for women, who generally have greater side effects from drug treatment. 

That is why here at the Women’s Health Research Cluster, we were thrilled to see that in late 2019, the Prime Minister’s Minister of Health Mandate Letter, included a call for increased support for women’s health research. Why? Because despite recent advances in sex-and gender-based (or sex-and-gender-based analysis, SGBA) research, women’s health research has historically been – and continues to be – underrepresented and underfunded across research disciplines. This is a critical issue that affects the health of 50% of the world population. Clearly, a lack of research jeopardizes the health and wellbeing of all women. 

The members of the Women’s Health Research Cluster (WHRC) have been working tirelessly to fill this gap. The WHRC is a growing network of multidisciplinary researchers and research partners, including clinicians, community partners, and trainees, who are engaged or interested in women’s health research. Our objectives are to spotlight and advocate for women’s health research and catalyze collaborations for women’s health research. Together, we are working to expand our knowledge of how different female-specific experiences – such as menstruation, hormonal contraceptives, pregnancy, and menopause – and gendered experiences influence women’s health and healthcare.

 

Bonnie Lee and Liisa Galea at UBC on the Hill event in 2019 (Photo: Bonnie Lee)

In March 2019, just before the pandemic hit us in full force, we were fortunate to have some of our WHRC members invited to attend the UBC ‘Day on the Hill’ in Ottawa. The goal of ‘Day on the Hill’ is to establish relationships with parliamentarians, showcase the university’s strengths, and begin to influence the ideas that may shape future policies.  As a world-renowned research university, one of UBC’s goals for this visit was to convey the value of investing in university education, research, and students. Together, Dr. Dermot P. Kelleher (Dean of the Faculty of Medicine and Vice-President of Health at UBC),  Dr. Liisa Galea (the lead of the WHRC), and Bonnie Lee (graduate student and Trainee Lead of the WHRC) represented UBC Health and met with several stakeholders, including members of parliament, Health Canada representatives, and the Deputy Minister of Health. Our health team spoke with these stakeholders about the goals of the Faculty of Medicine at UBC and Galea and Lee spoke about the cluster and their work in women’s health research. 

For Galea and Lee, it was an exciting time to advocate for the urgent need to prioritize women’s health research as distinct from and in addition to sex-and-gender based research. Lee highlighted that supporting research initiatives and graduate students with federal funding and work-integrated learning opportunities is imperative to improving the productivity and quality of research. Students in all academic endeavours are our future. They will become the future research leaders and we will need to count on their work to weather the next great global challenge.  

As noted, during each meeting, we advocated for the need for women’s health research and the important return on investment that training in research provides (both to the student and to the knowledge economy). We need to look no further than our current pandemic to understand the importance of inclusion of both sexes and all genders in research. COVID-19 is more likely to result in ICU visits and mortality in men compared to women, indicating a need to understand why this might be as this could lead to more effective treatments in men. Further, vaccine trials failed to include pregnant women, and this lack of inclusion has left many families in turmoil over the right course of action to take. Funding research, and in particular women’s health research, will significantly contribute to the health and wellbeing of all Canadians for years to come.

Kelleher, Galea, and Lee had insightful conversations with the following stakeholders: Stephen Lucas (Deputy Minister of Health), Kathryn Nowers (Director of Policy, Office of the Minister of Health), Don Davies (Member of Parliament for Vancouver Kingsway), Matt Jeneroux (Member of Parliament for Edmonton Riverbend), Jessica Halverson (Director of Research and Innovation for the Department of Women and Gender Equality), and Anna Romano (VP Health Promotion and Chronic Disease).