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The hidden threat in healthcare: How implicit bias-driven misdiagnosis affects Long Covid patients

The hidden threat in healthcare: How implicit bias-driven misdiagnosis affects Long Covid patients

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In this blog Leslie Njingang explores the hidden threat of the misdiagnosis of Long Covid due to bias around race, ethnicity, religion, gender, weight, age, and more, and looks at recommendations for addressing this implicit bias and misdiagnosis.

In the past year alone, the number of people who have had Long Covid in the United States has risen from 15.7 to 18.4 percent. Despite the increasing trend in Long Covid cases, patients face challenges getting healthcare providers to believe and accurately diagnose them. Some of this can be attributed to a lack of knowledge about Long Covid among providers, given the newness of this chronic condition and the range of symptoms presented. Still, for some, it’s apparent that implicit bias has been the contending force behind a misdiagnosis.

Implicit bias and its impact on Long Covid patients

Implicit bias refers to the attitudes or stereotypes healthcare providers may hold that unconsciously influence their assessment, understanding, actions, and decisions. These biases can be directed against any group perceived as “others,” including those defined by race, ethnicity, religion, gender, weight, age, and more. Long Covid patients most notably perceived biases against their race, gender, weight, and age.

Specifically, racial bias has led to Long Covid patients feeling they experience different standards of care and treatment, with some patients describing what felt like “Black Covid” vs. “White Covid.” Common experiences for women with Long Covid were their healthcare providers attributing their symptoms to anxiety or menopause due to implicit biases related to women exaggerating their pain.

Another group that felt treated differently in response to medical bias was patients who had a high BMI. These patients reported that providers dismissed their Long Covid concerns and, instead, asserted that symptoms overweight patients were experiencing were simply typical health complications that accompanied their body size.

Beyond weight, Long Covid patients also call out the bias healthcare providers held against certain age groups. Healthcare providers often assumed young people were too young to have serious health issues, while older patients had their symptoms blamed on the natural aging process, as opposed to Long Covid. The age bias against the younger and older populations resulted in both age groups feeling as if they were not being taken seriously.

The different types of biases people with Long Covid encounter reveal significant implications for patient care, particularly misdiagnosis. When healthcare providers believe stereotypes such as the myth that ‘Black people don’t feel pain,’ they are inclined to dismiss symptoms or experiences expressed by their patients. Consequently, they fail to recognize the totality of the patient’s experience as potentially being Long Covid related.

Consequences of Misdiagnosis in Long Covid

In essence, implicit bias against Long Covid patients can lead to misdiagnosis, with profound repercussions. Misdiagnosed patients cannot access necessary treatment to manage their symptoms and face delays in getting specialist referrals. Typically, patients require a Long Covid diagnosis before they can access further targeted care. A misdiagnosis therefore extends the timeline of an already time-consuming process.

Not only does a misdiagnosis postpone care, but it also means that patients are forced to endure unnecessary pain and discomfort, severely affecting their quality of life. One study showed that Long Covid patients experienced limitations in daily activity and mobility, a high level of pain, and increased anxiety or depression, with all participants reporting that their general well-being was moderately (43%) or severely impacted (33%) by symptoms.

This physical and emotional toll can be compounded by the erosion of trust misdiagnosis causes. When patients feel that their symptoms are not taken seriously or are attributed to factors that they cannot change, such as their race or gender, they may become disillusioned with the medical profession. This erosion of trust can make marginalized groups less likely to seek medical help in the future, exacerbating health issues and disparities.

Recommendations for addressing implicit bias and misdiagnosis in Long Covid care

Implicit bias and corresponding misdiagnosis negatively impact Long Covid patients’ health and health experience. When clinicians do not acknowledge their implicit biases, they cannot take the necessary steps to reduce them. However, it’s not enough to recognize that sexism, ageism, racism, and weightism can negatively affect clinical interaction outcomes, play a role in health disparities, and affect treatment adherence, healthcare professionals should actively strive to reappraise and mitigate their biases.

To address this, many healthcare professionals are adopting patient-centered care in their approach to assessments. Patient-centered care involves respecting and responding to the individual preferences, needs, and values of patients. By taking the time to listen carefully to Long Covid patients’ descriptions of their symptoms and experiences, without preconceived notions or biases, providers can foster. Healthcare professionals will also be able to gather more accurate information, leading to better diagnoses, more effective treatment plans, and a relationship built on trust.

Lastly, it is imperative that healthcare providers and the general public (especially those who have had COVID-19 in the past) continuously build upon their knowledge of Long Covid. The evolving nature of this condition means that staying informed about the latest research, treatment protocols, and potential symptoms is crucial. Providers should engage in ongoing education and training to better understand Long Covid and its varied manifestations, and patients should take advantage of the numerous online support groups aimed at educating about Long Covid and available services. These tools and strategies can overcome implicit biases and misdiagnosis, ultimately leading to improved health outcomes for patients.

Leslie Njingang is a third-year student at the University of Pennsylvania. As a research intern at Johns Hopkins Bloomberg School of Public Health, she conducted a scoping review on Long Covid patient experiences, inspiring her to write this piece. Leslie is passionate about healthcare and aims to contribute to better patient care through her work.

Photo Credit: Nielsen, Klaus. Doctor showing diagnosis to black patient in hospital. 30 Nov. 2020. Pexels, Creative Commons, https://www.pexels.com/photo/doctor-showing-diagnosis-to-black-patient-in-hospital-6303652/. Accessed 2024.

Bleeding in healthcare settings: Why healthcare workers menstrual health must be addressed

Bleeding in healthcare settings: Why healthcare workers menstrual health must be addressed

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On the 28th of May, we celebrate ten years of Menstrual Hygiene Day. It is a time to reflect on the success of the movement, as well as galvanise action for this still largely neglected and under-funded area of sexual and reproductive health, rights and bodily autonomy.

In 2022, the 50th session of the Human Rights Council recognised menstruation as a public health and human rights issue. They urged three actions:

  • Acknowledgment of menstruation’s health implications across the reproductive life course
  • Ensure access to resources and supportive environments
  • Integrate resources to address menstrual health at work.

Failing to address menstrual health has implications for resourcing, as women health workers, particularly in low- to middle-income countries (LMICs), are forced to take time off during menstruation or choose between their dignity and the needs of their patients.

Despite comprising approximately 70% of the healthcare workforce, women’s menstrual health needs have often been side-lined. The COVID-19 pandemic exposed this neglect in policies concerning menstrual health in this workforce. Women health workers responding in tertiary care facilities struggled to manage their menstrual health. Testimonials from numerous healthcare workers struggling to fulfil their duties while menstruating during the pandemic underscored the gravity of the issue. Challenges such as prolonged shifts, inadequate infrastructure and ill-fitting personal protective equipment (PPE) further compounded the difficulties faced by menstruating healthcare workers.

This situation highlights the urgent need for healthcare organisations to actively integrate menstrual health considerations into their outbreak response strategies. Now, in 2024, despite some efforts to tackle the challenges laid bare during the COVID-19 crisis, healthcare workers still grapple with effectively managing their menstrual health.

Barriers to attaining menstrual health for healthcare workers

Women and frontline healthcare workers who menstruate respond to crises daily, yet their essential needs often go unaddressed by healthcare facilities. Distressing examples from the COVID-19 pandemic serve as reminders of persistent barriers in many contexts.

In an article from 2020, the New York Times reported instances of healthcare workers in China resorting to using contraceptive pills and nappies to manage menstruation and prevent leakage into the already scarce PPE. In other countries, such as Uganda and Nepal, healthcare workers faced their own set of challenges. The immense patient load, coupled with the lack of time and proper water, sanitation, and hygiene (WASH) facilities, left these workers struggling to manage their menstrual health. Tragically, these circumstances have even compelled many to resign from their essential roles, further exacerbating healthcare disparities in these regions.

Reshma Ramesh, a doctor from India shares, “Working in a low-middle income country, I often had approximately 20 patients spread across three floors, who required investigations every day. When my period exhaustion resulted in a slight delay, I was often blamed for coming up with excuses to slack off. Every female healthcare worker I know has received this response at some point in her career.”

Investigating the impact of PPE during menstruation, a cross-sectional study in India reported aggravated cramps and headaches, abnormal menstrual cycles, dermatitis due to continuous friction, sweating and dehydration, and exacerbated premenstrual syndrome in health workers who used full PPE during extended periods of time. In 2021, the British Medical Journal highlighted that PPE exhibited “sexist” design biases, as it was initially designed for the male body, and not many changes have been made since. Not only does it fail to fit the female figure properly, leaving many without adequate protection against infections, but it also lacks features allowing for efficient menstrual product changes without wasting limited PPE.

A UNICEF report (2023) exposed that globally one in five healthcare facilities lack adequate WASH facilities. This impacts the ability of healthcare workers who menstruate to attain their menstrual health because they will not have access to safe and discreet spaces to change, dispose of or clean products. This means that 20% of healthcare facilities are not set up to suit the most basic needs of the majority of the healthcare workforce.

On top of the structural issues, one of the main challenges that healthcare workers face is finding the time to change their products when trying to attend to patient needs.

“While working in busy units as a nurse, I find that attending to my own basic needs such as changing my tampons become almost impossible, due to the high demand in patient care needs and lack of staff. I have experienced bleeding through my tampons into my work trousers on shift due to lack of time to go to the toilet. It feels like to have time to do this, you are in turn compromising patient care that needs to be met at that moment.” Laura Youngson, a nurse from Scotland.

Furthermore, a recent meta-analysis on rotating shift workers and menstruation reported a higher likelihood and increased risk of developing dysmenorrhea, menstrual disorders and early menopause in healthcare workers who worked erratic shift patterns outside of regular hours. These challenges and health risks underscore the urgent need for systemic changes to prioritise and safeguard menstrual health for those who provide care.

Policies on menstrual health

Howe et al., (2023) investigated menstrual policies that support women in the workspace, and found that most UK and EU countries had clear policies surrounding menopause but lack policies regarding menstruation or menstrual illnesses. However some important policy steps have been made in the right direction. Following the lead of Japan, China, Zambia and others, Spain recently passed a law allowing women to take paid menstrual leave, making it the first European country to do so. Scotland’s Period Product Act came to action in 2022 ensuring adequate access to period products in public places in an effort to combat period poverty. India’s Menstrual Hygiene Policy is implementing comprehensive initiatives to address menstrual hygiene management (MHM), including awareness campaigns, educational sessions, distribution of menstrual pads and provision of separate toilets.

Although these are all welcome steps forward there is one key aspect that is not being addressed. Healthcare workers do need adequate WASH facilities, fit for purpose PPE and the time to manage their menstrual health. But they also need to be able to do so in environments that are free from menstrual stigma and shame.

“Although I worked in a clinical environment surrounded by colleagues who were educated on menstrual hygiene and care, the topic of menstruation was a big taboo. I remember when a coworker had to call in sick due to severe cramps and she was harshly judged by both my male and female coworkers. This was an added stressor, as female nurses we had to make sure that we weren’t being too loud with our periods and our performance remained ideal despite our health needs.” Nour Toukan, a nurse from Lebanon.

Studies have found that policies have failed to dismantle the stigma surrounding menstrual health, especially those surrounding menstrual leave. Although the global recognition of the benefits of menstrual leave is increasing, many women are still hesitant about utilising this leave due to fear of being judged, embarrassed or even looked down upon in the workplace.  While menstrual health policies are critical in all workplaces, it’s imperative to actively dismantle the stigma surrounding menstrual health alongside these policy changes. This ensures that all workers, especially those in clinical settings, can prioritise their well-being without fear of judgement or discrimination.

Moving from policy to action!

Worldwide, grassroots organisations are leading the menstrual health revolution. It is evident that this revolution is not titrating down to all workplaces, especially clinical settings. 

Many healthcare workers still experience poor menstrual health due to stigma, lack of WASH facilities and workload pressures. Several countries have developed menstrual health and leave policies to protect workers at the time of menstruation. Despite the implementation of policies within some countries, documented experiences demonstrate that the challenges and stigma surrounding menstrual leave still exist worldwide, with healthcare workers experiencing shame and embarrassment, ultimately causing them to leave the workforce. Viewing this from a healthcare system perspective, this can lead to shortage of healthcare workers in especially in LMICs, and consequently more burnout in those who remain.

Going forward, there is a critical need for more research and gender responsive workplace policies in clinical settings that address the needs and experience of healthcare workers who menstruate. This includes campaigns that offer education, normalisation and building empathy around menstrual needs in a bid to destigmatise menstrual health in healthcare settings. To prevent the recurrence of the ordeals faced during the pandemic by healthcare workers who menstruate, it is imperative that these policies be drawn from their lived experiences.

Healthcare settings must have access to adequate WASH facilities so that products can be changed and cleaned in a timely and dignified manner. Healthcare workers who menstruate deserve PPE that is created with their needs in mind. They also need the time to manage their menstruation without shame or fear of reprimand. Lastly there should be information on menstrual health (and related disorders) across the life course in all health facilities, so that menstruation, peri-menopause and menopause in the health workforce are acknowledged and catered for in the clinical setting workplace.

Healthcare workers that menstruate must have their basic needs met in order to deliver care. Supporting their menstrual health is central to their equality, rights and dignity in the workplace. Upholding the rights and needs of the majority of the workforce, by creating policies, providing education and destigmatising menstrual health, will enable health workers who menstruate to provide the best quality of care. Implementing these policies will ensure health settings are better prepared for the next health crisis, so no woman and people who menstruate will be able to attain their menstrual health whilst responding to crisis.

About Menstrual Rights Global

Menstrual Rights Global, formerly Pandemic Periods, advocates for the right to thrive, from menarche to menopause. Our volunteers span 40 countries, all working together to drive advocacy and research initiatives that generate evidence to influence global and domestic sexual and reproductive health, rights, and bodily autonomy policy.

Authors

Laura Youngson, Healthcare Worker Lead, Menstrual Rights Global, and Nurse, Scotland

Reshma Ramesh, Policy Analyst, Menstrual Rights Global, and Doctor, India

Nour Toukan, Researcher, Menstrual Rights Global, and Nurse, Lebanon

Bilkisu Ibrahim, Researcher, Menstrual Rights Global, Nigeria

Ana Gutierrez, Communications Lead, International Confederation of Midwives, Spain

Dr Jennifer S. Martin, CEO, Menstrual Rights Global, Scotland

Gender-specific health related challenges faced by survivors of Cyclone Freddy in Malawi: An Interview with Edith B Milanzi of FemAnalytica

Gender-specific health related challenges faced by survivors of Cyclone Freddy in Malawi: An Interview with Edith B Milanzi of FemAnalytica

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We sat down with Edith B Milanzi from FemAnalytica to learn more about their six month project to investigate the health related gender-specific challenges and impacts faced by survivors of Cyclone Freddy through interviews, surveys and focus group discussions. Their project was recently awarded one of our small grants for work focused on research, advocacy and programmatic interventions related to gender and public health emergencies.

The project will work by identifying and analysing the health-related gender-specific interventions that were implemented by various government and humanitarian organisations, their effectiveness and identifying best practices, and synthesising findings to produce a set of evidence-based lessons learned and recommendations for future gender-responsive disaster management strategies in Malawi.

Okay, so can we start with you just telling me a little bit about your project? 

Our project will examine the health-related gendered impacts of Cyclone Freddie in Malawi. Cyclone Freddy caused floods in March 2023. It continued for a month and was one of the worst cyclones that the country has ever experienced, but we have seen these events occurring more frequently over the last decade. Over two million people were affected, more than 1,000 died, with many more reported missing. So, it was really devastating. 

We want to look at the response – the government response, NGO response and the experience of individuals. We have seen that for the most part the response was targeted at recovery, but specifics around the needs of men and women when it comes to health concerns did not seem to be considered, in terms of humanitarian response. We are interested in speaking to survivors about their experiences, in terms of how they were able to access services and what challenges they faced and whether their gender affected how they got access to those services.

We found that no one has really looked at the health and gender aspects of such a crisis in this context. We wanted to look at these while considering flooding as a climate induced event, as we are going to be seeing more of these in the future. So, it’s high time that we have some sort of concrete evidence based in trying to understand how health and gender interact and how we can address them differently going forward.

Tell us about the next steps in your project

We have just submitted our protocol to the ethics committee, so once that’s done the field work will start. We expect that to start around May or June.

As FemAnalytica we have partners in Malawi, and these partners will be going into the field and undertaking one-on-one interviews with selected survivors as well as facilitating focus group discussions.

We also intend to interview stakeholders that were involved during the response, trying to understand their approach to response. To understand if they have a standard response or whether there is an actual assessment taking place in real time to assess what needs to be addressed. We want to try to understand what the approach to response is, and if there’s gender mainstreaming at the top of that response. And if there is a gender mainstreaming approach, why isn’t it working?

Why is this research important?

The more we talk about how the impact is different for men and women, especially when it comes to health-related needs, the more we can push for targeted interventions. So, you know, making provisions for pregnant women, lactating women being part of the first response instead of being an afterthought.

There’s also a big interplay of cultural, religious and social factors that come into how emergencies are responded to. We want to show sensitivity to those values and try to understand how they shape the humanitarian response, as well as how individuals expect the response to be delivered, due to their religious, cultural and socio-economic backgrounds. There are many factors that need to be, to be considered, but they do all play into the intersection of gendered impacts and health in regard to how we respond to climate induced events.

To give you an example reported in the Malawi Human Rights Commission assessment of the response, in some rural parts of the country some of the clinics required pregnant women to come to the clinic with their husbands if they wanted to access antenatal or perinatal services.  Those who did not come with their husbands were not assisted. And this is in a time when they’re vulnerable and need services, post cyclone.

So, one of our questions is asking individuals “how do you think these responses should be done” and the response to that question will help us to understand whether we also need to magnify the cultural lens of the response maybe.

Tell us a little bit about FemAnalytica and the team

FemAnalytica is a non-profit social enterprise focused on using the power of data to advance the sustainable development goals (SDGs). I’m a medical statistician, so I’m a data person but my co-investigator is a maternal health specialist. We use data to build an understanding of complex issues. And we lack data in Malawi. We founded FemAnalytica to help other non-governmental organisations, non-profits, basically the social sector, to use data to advance the work that they’re doing towards the SDGs.  We are strong advocates for women when it comes to human rights, when it comes to women in STEM, when it comes to education. So, we also have a strong focus on advocating for disaggregated gender data as that is scarce.

We’re also focused on using modern methods of analysis to understand this data. So, while on this project we’re using a qualitative research approach, we’re also looking into other ways of how we can analyse that data to gain additional insights.

Why is a gendered lens particularly important in this project?

There’s a lack of understanding of how certain issues affect men and women differently. And because we don’t have disaggregated data we end up with blanket interventions, both for men and women, and no way to measure whether these are effective.

Additionally, when it comes to climate events, women are the most likely to be to be affected. They’re less likely to be able to access services. In the case of a flood, they’re less likely to be able to swim out. They are tasked with making sure that the children are taken care, and the household is intact. Even though they’re still victims themselves. So, there’s an imbalance when it comes to the expectations placed on women. We want to understand how all this impacts women and what sort of targeted interventions can be deployed.

How is this research part of a bigger picture?

We are certainly looking beyond this project. We are experiencing floods in Malawi at the moment (March 2024), so on the back of this project we want to see if this kind of data collection is something we can make routine. Cyclone Freddy affected the South of the country, but now we are having flooding in the North. We want to collect more data as these events happen so that we have a comprehensive national picture.

We’d like to be able to develop platforms that people can follow in real time. Platforms that use real time data on the specific needs of women, so we can have more targeted responses in the future.

Find out more about our other small grant awardees.

You’re invited to our March Gender and Public Health Emergencies Working Group webinar!

You’re invited to our March Gender and Public Health Emergencies Working Group webinar!

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Join us for the Gender and Public Health Emergencies Working Group webinar, taking place this March, with exciting speakers! All members welcome!

Wednesday, 13 March 2024 • 3pm GMT/ 4pm WAT/ 10am EST

Come and hear from our presenters, discussing issues related to gender and public health emergencies, ask questions, and meet others working in this field. Our presentations this month include:

Abdul Kadirr Deadehwai Swaray, Children Advocacy Forum, Sierra Leone

Abdul is a Sierra Leonean and Executive Director for Children Advocacy Forum Sierra Leone (CAF-SL). He is a Child and Youth development activist and public interest campaigner and steering committee member of numerous civil society alliances including Scaling Up Nutrition and Immunization Civil Society Platform (SUNI-CSP), the Chairman for the Coalition of Young Generation of Smart Climate Change and Food Security Initiative, Steering Committee member for SUN Technical Working group, and a Technical Committee member for the Directorate for Food and Nutrition in the Ministry of Health and Sanitation in Sierra Leone and Global Member for PMNCH for Women’s, Children’s and Adolescent’s Health.

‘Education as a Path to Gender Justice for Maasai Youth’ by Claire Fialkov, William James College, USA

Claire Fialkov will be talking through her study, first published in the Africa Journal or Gender, Society and Development, exploring the differences between adolescent boys and girls and their tendency to accept the influence of others. The study measured authenticity in 306 adolescent Maasai boys and girls in Kenya and found that boys are significantly more likely to accept external influence than girls. Accepting external influence is inversely correlated with authenticity, a character strength linked with mental health and well-being, and arguably needed for democratic societies to flourish. Furthermore, unquestioned adherence to external social inductions serves to maintain the status quo and prevents responsiveness to needed change. The embodiment of authenticity is crucial for its actualization and takes place in the context of relationships. Schools represent a microcosm of the larger society and provide a window into different cultural practices and, as such, represent opportunities for transformation. The study discussed the social implications of these ideas, and the role Kenyan teachers play in the advancement of gender justice.

“Identifying violence at the community level based on health symptoms” by Poonam Kathuria, SWATI, India

Poonam Kathuria founded and directs SWATI, a feminist organisation fighting gender-based violence in India at different levels. Their main initiatives are developing a rural health sector response to violence against women and a governance response to public space violence against rural women and girls.
Poonam was awarded the Dame Nita Barrow Distinguished Visitorship, 2015 by the University of Toronto. Her latest work is a co-edited collection titled Indian Feminisms – Individual and Collective Journeys.

Details of how to join the webinar will be circulated on the google list. If you would like to sign up to receive this information and to join the Working Group, please click here!

Gender and Public Health Emergencies: Introducing our new grant awardees!

Gender and Public Health Emergencies: Introducing our new grant awardees!

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We are pleased to introduce the five projects that have been awarded small grants for their work focused on research, advocacy and programmatic interventions related to gender and public health emergencies.

Launched late last year the GPHE working group scheme supports organisations working on aspects of gender and public health emergencies, with a focus on evaluating GPHE interventions, research on lessons learned on gender considerations during health emergencies, success stories on gender and public health, and for workshops or other educational programs related to gender and public health emergencies.

Documenting the resilience of survivors of conflict related sexual violence in Kibra and Mathare, Nairobi through art and storytelling – Kenya

Principal investigator – Yvonne Anyango Oyieke, Lawyer

The Utu Wetu Trust has been awarded a grant to document the resilience of survivors of conflict related sexual violence in Kibra and Mathare, Nairobi through art and storytelling. The project will be implemented for six months and will also advocate for reparations for sexual violence through the memorialisation of the experiences of survivors, highlight the resilience of survivor communities in response to challenges caused by public health emergencies, contribute to discourse around gender and public health emergencies by illustrating best practices and lessons learned from the margins, and contribute to collective healing as part of reparations for sexual violence through artistic expression and storytelling.

Victims and survivors of sexual violence during conflict often struggle to access justice and accountability. Some of the documented effects include lasting emotional trauma that can manifest as anxiety, depression, sleep problems, and other associated disorders, as well as physical problems such as pregnancy, sexually transmitted infections, and other physical trauma. Survivors are frequently ostracised within their own communities for prolonger psychological impact. These effects were further exacerbated during the COVID-19 pandemic which, like other complex emergencies, had a disproportionate impact on women and girls and increased their vulnerability to gender based violence (GBV). Despite these challenges survivor communities have shown themselves to be remarkably resilient, continuing to advocate for themselves and work to prevent violence and ensure a safer community for all. This project will rely specifically on artistic expression through storytelling or performance to amplify gender perspectives in health emergencies and highlight the resilience of survivors of sexual violence during the COVID-19 pandemic. Art is a powerful communicator, and the project will curate a festival of art and storytelling by survivors in their own voice. It will highlight the innovative ways survivors of sexual violence navigated COVID-19, thus contributing to the body of knowledge around response to and prevention of GBV.

A community-based participatory research study with Ecuadorian women about childbirth experiences during emergencies – Ecuador

Principal investigator – María del Carmen Gangotena, Senior Researcher

A grant has been awarded to the Vivir Association for their three month project “A Community-Based Participatory Research Study with Ecuadorian Women About Childbirth Experiences during Emergencies”, which employs an anti-oppressive methodology that merges CBPR with critical pedagogy.

The research targets young mothers in Ecuador who experienced childbirth during emergencies, such as the COVID-19 pandemic. Participants are drawn from diverse ethnic communities in Pichincha province’s Sierra region, specifically targeting Mestizo, African Ecuadorian, and Indigenous women, served by a multi-ethnic approach that aims to engage three communities. By investigating varied systems, structures, and norms across ethnic groups, the study seeks to unveil how ethnicity and gender intersect in healthcare experiences during crises. The research employs a Community-Based Participatory Research (CBPR) approach, involving the mothers in storytelling exercises. This methodology serves dual purposes: it empowers women by giving them a voice, and it offers a platform for healing from traumatic birthing experiences they may have endured at public health facilities. Central to the study is the role of community facilitators who encourage participants to talk about their lived experiences, and engage in a transformative learning process, inviting critical self-reflection and active interrogation of social injustices. Community facilitators aid these conversations using a pregnant doll, an innovative tool, facilitating sensitive discussions about women´s lifelong learning, systemic healthcare biases, power and privilege and gender roles. Rooted in an anti-oppressive framework, the study tackles core societal issues like patriarchy and power dynamics, making it a catalyst for tangible community change, social justice and transformative education.

Accountability in Future Pandemics: Advancing Recommendations on Gender – Global

Principal investigator – Dr Fifa A Rahman

This grant was awarded to Matahari Global Solutions for an international project that will offer tangible solutions to promote gender-responsive strategies in public health emergency responses. The project will run for six months entail organising two hybrid multi-stakeholder dialogues for policy and programmatic improvements, involving government agencies, international organisations, donor agencies, civil society, and leaders from affected communities. As part of the project the team will also create a compelling short video documentary to share at the multistakeholder dialogue and for wider public dissemination. The documentary will convey firsthand experiences, lessons learned, and tangible impacts of gender-responsive interventions. The video documentary, and multi-stakeholder dialogues aim to bridge the knowledge-action-outcome gap, addressing the unique needs and challenges faced by different gender groups during public health crises. These findings and recommendations are a vital and timely addition to the field, driving progress toward gender-responsive public health emergency responses. The project will be conducted both globally and at a local level.

Amidst the Storm: Investigating Gender-Differentiated Impacts and Response Mechanisms During and Post Cyclone Freddy – Malawi

Principal investigator – Edith B. Milanzi, PhD

A grant has been awarded to FemAnalytica for a six month project to investigate the health related gender-specific challenges and impacts faced by survivors of Cyclone Freddy through interviews, surveys and focus group discussions. Malawi is still grappling with the devastating impacts of  Cyclone Freddy- one of the worst tropical cyclones on record -which occurred in March 2023. Over 500,000 people were displaced, with more than 500 dead, and over 500 people reported missing. In addition, Cyclone Freddy occurred on the back of the worst cholera outbreak the country has ever experienced. This creates an immediate and pressing need to study and understand the gendered consequences of such natural disasters especially in the context of public health.

The project will work by identifying and analysing the health-related gender-specific interventions that were implemented by various government and humanitarian organisations (if any), their effectiveness and identifying best practices, and synthesising findings to produce a set of evidence-based lessons learned and recommendations for future gender-responsive disaster management strategies in Malawi.

Trans-affirmative mental health care provision during public health emergencies: Insights from the COVID-19 pandemic – India

Principal investigator –Anant Bhan, Researcher, Global Health, Mental Health, Health Policy and Bioethics; PI and Mentor, Sangath Bhopal Hub  

A grant has been awarded to Sangath for a six-month project to study trans-affirmative mental health care provision during public health emergencies, focussing on insights from the COVID-19 pandemic in India. Transgender and gender-diverse (TGD) individuals are at a high risk of adverse mental health outcomes like mood disorders, substance use disorders, suicidal ideation etc. due to a range of minority stressors  – like gender-based discrimination, stigma, rejection from family, friends and community, violence by partners, families, police, public and within healthcare systems. Despite the significant mental health burden, TGD persons report limited use of mental health services due to negative experiences like ‘conversion therapy’ with providers and fear of being pathologised, a lack of queer- and trans- competent providers and affordability associated with seeking mental healthcare. Particularly during the pandemic, many studies underline the disproportionate mental health impact of the pandemic on TGD persons as compared to cisgender counterparts, including challenges with access to care. The reflections from these experiences can better inform policy considerations for the future and build evidence for advocating for the mental health needs of TGD persons within and outside of public health emergencies.

You’re invited to our December Gender and Public Health Emergencies Working Group webinar!

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Join us for the December Gender and Public Health Emergencies Working Group webinar, taking place this December, with exciting speakers!

Friday, 15 December 2023

3pm GMT/ 4pm CET/ 10am EST

All members welcome at the next Working Group Webinar, taking place in December!

Come and hear from our presenters, discussing issues related to gender and public health emergencies, ask questions, and meet others working in this field. Our presentations this month include:

‘COVID 19 pandemic and the unique barriers women and girls face in Nigeria using women and girls arise WAGA initiative to break the barriers’ by Mrs. Oluwayemisi Oluwol from Age Nigeria.

‘Gendered experience of refugee close-to-community health providers during Covid-19 in Lebanon’ by Dr. Rouham Yamout from ReBUILD for Resilience.

Details of how to join the webinar will be circulated on the google list. If you would like to sign up to receive this information and to join the Working Group, please click here!

Lessons in Care – learning from women on the frontlines of pandemic response

Lessons in Care – learning from women on the frontlines of pandemic response

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By Julia Smith

At last month’s UN High Level Meeting on Pandemic Preparedness, Marie-Claire Wangari from Women in Global Health noted, “Women have put their lives on the line to save us during the pandemic. We will not ask them now to return to gender inequality and business as usual.”

During 2020 and 2021, while conducting research for the Gender and COVID-19 Project, I had the privilege of speaking with nearly 200 women on the frontlines of the pandemic in Canada, including nurses, doctors, custodial staff, family caregivers and teachers. Interviewees described a lack of care for those in frontline, feminized professions, which were occurring in a high-income country with a well-established public health system, and few excuses for such neglect – particularly as the federal government defined its response as feminist and gender-based.

Women’s voices

Those health workers whose work was not considered essential often couldn’t access basic necessities required to keep themselves and those they cared for safe. For example, despite presiding over 25% of births in British Columbia, Canada, midwives were not considered essential by the government. This meant they did not have access to the same financial aid, government supply chains or supportive services other health workers received.  One midwife shared,

“We have no PPE. We’re actually begging our clients to supply us. We have no quarantine pay, no hazard pay. We are really struggling here. And we really want to keep offering our care because we’re keeping healthy people out of the hospital.”

Even those who did enjoy essential status spoke of the disconnect between public displays of hero-worship and lack of basic necessities to do their jobs.  A nurse working in a COVID-19 ward expressed frustration:

“We’re healthcare heroes, but no. We’re not actually treated as heroes by our actual employer. Like not like you want to be treated like a hero. If like you’re expected to work on your break and all these other things that we’re expected to do – we don’t even have access to coffee and tea, or a fridge.”

Women reported that their experiences were shaped by their multiple and overlapping social positions related to race, ethnicity, ability, age, income, and other factors. For immigrants and single parents, multiple burdens were often impossible to reconcile with paid care work, particularly considering the risk of infection frontline work entailed. A newcomer, early childhood educator reported that she gave up her job because,

“I was scared I was going to get sick from the air because at that time like they say it’s very powerful, it’s going to kill you and I was afraid.  . . . Because my fear is that like if I get sick, who is going to look after my son, because I don’t have no one. I don’t have family or relatives and – of course, if I’m sick, not one of my neighbours is going to look after my son because they don’t want to get sick either, they are single moms too.”

Because this mother quit, as opposed to being laid off, she did not qualify for the income support offered to those who lost work due to the pandemic, and so faced significant financial hardship.

The most disheartening experiences reported by the women I interviewed were about the mental health toll of frontline work. Those working in long term care, where over 43% percent of COVID related deaths in Canada occurred, spoke of overwhelming grief:

“We were losing residents that you become very close with. Even though I’m a housecleaner. We were really hit hard. You become part of their family. Even when they do pass – before COVID-19 hit you were going to these residents’ funerals. Because you’re part of them. And they say you’re not supposed to be part of them, you’ve got to separate. How can you? You work day in and day out with these people . . . I hold a very, very big spot in my heart for all of them.”

Many noted that the mental health services  were inadequate. Those with low incomes and precarious employment couldn’t afford counselling, and/or didn’t have access to technology or private spaces to engaged in virtual counselling. Some women couldn’t find services in their preferred language. Those caring for others at home simply didn’t have the time. Respondents expressed frustration that mental healthcare was positioned as a personal, as opposed to employer or collective, responsibility. One nurse vented,

“People need to stop telling me to do self-care and take care of myself because I don’t have the frigging time to take care of myself and taking a bath is not going to cure the pandemic.”  

The way forward

Despite such hardship, the women I spoke with were powerful and resourceful. Nurses convinced management to provide additional PPE for their colleagues who were pregnant and had vulnerable dependents, midwives successfully advocated to be able to continue to provide homebirths, women physicians created support groups, and early childhood educators fought to be recognized as essential. 

They also provided suggestions, some of which are fundamental necessities; for example, ensuring childcare corresponds to healthcare workers’ work schedules.  Others require more complex changes, such as shifting away from top down emergency management to leadership based on consultations.  The fact that these recommendations come from a high-income country with at least some formal commitments to gender equality, indicate that even in a best-case scenario, women were put on the frontline without adequate support and so paid with their own time, energy, finances and wellbeing.

These lessons can be applied on a global scale: Pandemic response that empowers, instead of exploits, women healthcare workers, requires more than just increased financing and feminist declarations (though these are key first steps) – it requires systems level change that acknowledges and seeks to mitigate the legacies of patriarchal systems of oppression. If global health leaders are going to address gender inequality in the health and care workforce (as is alluded to in the Political Declaration of UNGA High-level Meeting on Pandemic Prevention, Preparedness and Response), they need to include both specific actions and goals, and  real commit to moving away from ‘business as usual’.  

This blog first appeared on PLOS Speaking of Medicine and Health.

Photo by Rusty Watson on Unsplash

Come along to the Gender and Public Health Emergencies Working Group webinar!

Come along to the Gender and Public Health Emergencies Working Group webinar!

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27 October 2023

3pm BST/ 2pm GMT/ 10am EDT/ 4pm CEST

All members welcome at the next Working Group Webinar!

Our presentations this month include:

  • “Educating mothers on Hygiene practices during a Cholera outbreak in conflict-affected areas of the South West region of Cameroon” (10 minutes) – Longsti Enanga (Women in Global Health Cameroon)
  • “An overview of the UK Overseas Territories Prison Health Needs Assessment Toolkit with a gender lens during emergencies” (10 minutes) – Lara Kontos
  • “Conscripted to Care – Women on the frontlines of COVID-19 Response” (10 minutes) – Julia Smith
  • Discussions/ Questions and Answers (15 minutes) – Lundi-Anne Omam

Details of how to join the webinar will be circulated on the google list. If you would like to sign up to receive this information and to join the Working Group, please click here!

27 October 2023

3pm BST/ 2pm GMT/ 10am EDT/ 4pm CEST

All members welcome at the next Working Group Webinar!

Call for proposals: Research, advocacy and programmatic grants on gender and public health emergencies

Call for proposals: Research, advocacy and programmatic grants on gender and public health emergencies

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Overview

The Gender and Public Health Emergencies (GPHE) Working Group is proud to launch its small grants program focused on research, advocacy and programmatic interventions related to gender and public health emergencies.

This scheme intends to support organizations working on aspects of gender and public health emergencies. It is open to members of the GPHE Working Group. For more information on how to join the Working Group please see: https://www.genderandcovid-19.org/ We invite applications that focus on evaluating GPHE interventions, research on lessons learned on gender considerations during health emergencies, success stories on gender and public health, and for workshops or other educational programs related to gender and public health emergencies. Approximately five grants of up to 20,000 USD will be awarded for activities over a period of three to six months.

The GPHE Working Group invites applications from the 15th September 2023 (00:01BST) to 15th October 2023 (23:59 BST). Applicants can send questions for clarification on about the call by the 5th October 2023 to the following email genderandcovid@gmail.com

Applications will be reviewed by a committee made up of members of the Working Group between the 25th October and the 5th December 2023.

Background

Public health emergencies, such as disease outbreaks and natural disasters, can have disproportionate impacts on different populations leading to gender-based disparities. Understanding and addressing the gender dimensions of public health emergencies is crucial for effective response and recovery efforts (1, 2).

Gender considerations play a significant role in public health emergencies, as they influence vulnerability, access to healthcare, social roles, and power dynamics within households, communities, and organizations. Historically, gender has been recognized as a determinant of health, affecting health outcomes and access to services. In emergency situations, pre-existing gender inequalities can be exacerbated, creating new challenges and exacerbating the burden on marginalized populations, particularly women, girls and gender minorities (3, 4).

The GPHE Working Group recognizes the importance of integrating a gender lens into emergency interventions and aims to promote research, advocacy, and the sharing of field experiences in this area.

The small grants program seeks to fund projects that contribute to advancing knowledge and practice in the field of gender and public health emergencies. This includes research projects that evaluate the effectiveness and impact of gender and public health emergencies  interventions, investigations into lessons learned and best practices regarding gender considerations in health emergencies, documentation and dissemination of success stories and innovative approaches, and workshops aimed at raising awareness and promoting gender-responsive policies and interventions.

By supporting people within the GPHE Working Group worldwide, the grants program aims to foster collaboration, knowledge sharing, and capacity building in the field of gender and public health emergencies. Through these efforts, the Working Group aims to contribute to improved emergency response strategies, better outcomes for vulnerable populations, and the promotion of gender equality in public health emergencies. The GPHE Working Group’s small grants program represents a significant opportunity for researchers, practitioners, and advocates to make meaningful contributions to the understanding and integration of gender considerations in public health emergencies. It is a vital step towards building a more inclusive and equitable approach to emergency preparedness, response and recovery.

Indicative grant areas of focus

Area 1: Evaluating gender and public health emergencies interventions

Impact assessment of gender-responsive health interventions in public health emergencies: For example through conducting research to evaluate the effectiveness and impact of specific interventions that address gender considerations in public health emergencies.

  • Evaluation of community-based approaches to address gender-specific needs in public health emergencies: For example, through focusing on assessing the effectiveness and outcomes of community-based interventions that aim to meet the gender-specific needs of affected populations during public health emergencies.
  • Comparative analysis of gender mainstreaming strategies in public health emergency response: For example, through comparing and evaluating different approaches and strategies for mainstreaming gender considerations in public health emergency response efforts.

Area 2: Research on lessons learned on gender considerations during health emergencies

  • Case study analysis of gender-responsive approaches in previous health emergencies: For example, through conducting in-depth case studies of past health emergencies to identify and document lessons learned regarding gender considerations. Researchers could analyze the implementation of gender-responsive policies, interventions and strategies during these emergencies, assessing their effectiveness, challenges faced and best practices identified.
  • Research exploring gender-specific impacts and coping mechanisms during health emergencies: For example, through conducting research, such as interviews or focus group discussions, to explore the gender-specific impacts of health emergencies on affected populations. Researchers could examine the unique challenges faced by different gender groups, the coping mechanisms utilized, and the role of social norms and power dynamics in shaping gender experiences during emergencies

Area 3: Documentation of success stories on Gender and Public Health Emergencies

  • Video documentary showcasing innovative gender-responsive interventions during health emergencies: For example, through producing a video documentary that highlights successful and innovative approaches in addressing gender considerations during health emergencies. The documentary could feature interviews with key stakeholders, affected communities and other experts to share their experiences, lessons learned and the impact of gender-responsive interventions. It can serve as a tool for raising awareness, sharing best practices and advocating for the integration of gender considerations in future emergency responses.
  • Photo exhibition showcasing the resilience and empowerment of gender-affected populations during health emergencies: For example, through focusing on curating a photo exhibition that captures powerful images depicting the resilience, empowerment and challenges faced by gender-affected populations in health emergencies. The exhibition could feature photographs taken by community members, frontline workers or professional photographers to convey the stories and experiences of individuals and communities. It can serve as a visual tool to raise awareness, evoke empathy, and foster dialogue on the importance of gender-inclusive approaches in emergency settings.
  • Artistic expression through storytelling or performance to amplify gender perspectives in health emergencies: For example, through supporting artistic projects that use storytelling, theatre, music, or other creative forms to depict the gender dimensions of health emergencies. Artists could collaborate with affected communities and experts to develop performances or artworks that convey the experiences, challenges, and triumphs of different gender groups during emergencies. These creative expressions can engage diverse audiences, evoke emotional responses, and prompt critical reflection on gender-related issues in public health emergencies.

Area 4: Advocacy or educational workshops related to gender and public health emergencies

  • Capacity-building workshops on gender-responsive approaches in public health emergencies: For example, through organizing a workshop to build the capacity of stakeholders, including policy-makers, healthcare professionals or humanitarian workers, on integrating gender considerations in public health emergency preparedness, response and recovery.
  • Multi-stakeholder dialogue on policy and practice gaps in gender and public health emergencies: For example, through convening a multi-stakeholder dialogue to discuss policy and practice gaps in addressing gender considerations during public health emergencies. The workshops could bring together representatives from government agencies, NGOs, academia, and affected communities to identify barriers, share experiences and propose recommendations for policy reforms and programmatic improvements.
  • Media and communication training/outputs on gender-inclusive messaging in health emergencies: For example, through organizing a workshop to train journalists, media professionals, and communication professionals on gender-sensitive reporting and messaging during health emergencies. The workshop could provide guidance on portraying gender dimensions, avoiding stereotypes, and promoting inclusive language in media coverage.

Eligibility

  • Applicants must be a member of the Gender and Public Health Emergencies Working Group at time of application. For information on how to join the Working Group see https://www.genderandcovid-19.org/
  • Grants can only be dispersed to legally registered academic or not-for-profit making organisations. While individuals may apply, they must have an organization willing to accept and administer funds on their behalf.
  • Members of the GPHE Working Group, located anywhere around the world, can apply for this small grant; Preference will be given to applications from lower-middle and middle-income countries and/or those that focus on populations disproportionately impacted by public health emergencies.

Applications

Submissions should include a completed application form and a detailed budget. Submissions without a budget and action plan will not be evaluated.

Download the application form here

Submission details

Please submit your applications via genderandcovid@gmail.com

Ignored and dismissed: The ongoing struggle of women with long COVID

Ignored and dismissed: The ongoing struggle of women with long COVID

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Gregory Hooke, Intern, Johns Hopkins Bloomberg School of Public Health

Throughout history, women with chronic conditions have battled accusations of being hysterical, emotional, or even pretending to be in pain. Unfortunately, for women experiencing long COVID, this narrative has not changed. Many of them have expressed that their long COVID symptoms are disregarded by their healthcare providers, leading to frustration and disappointment with the care they are receiving.

Healthcare providers themselves are also frustrated. Long COVID is not well-understood, making it difficult to diagnose. The symptoms of this condition tend to be too general to identify in a short doctor’s visit. Even after extensive imaging and multiple laboratory tests, healthcare providers cannot always confirm the symptoms are caused by long COVID. 

The pandemic after the pandemic

Long COVID can be described as a multisystemic condition following COVID-19 that worsens an individual’s health and quality of life. Long COVID has a wide variety of names, including post-acute COVID-19, long-haul COVID, and late sequelae. Adverse outcomes of this condition range from fatigue, headaches, and brain fog to multi-organ damage, strokes, and heart failure. Over 65 million individuals worldwide have long COVID, and that number is increasing daily.

Unlike a broken arm, which is quickly identified through X-rays, long COVID is very challenging to detect medically. Patients with long COVID often receive normal results from traditional diagnostic tests such as CT scans, MRI scans, and echocardiograms.

In an interview that I conducted with Dr. Alba Azola, a rehabilitation physician on the Johns Hopkins Post-Acute COVID-19 team, she explained why these tests often fail to detect long COVID. “These tests are designed to identify findings correlated with diseases we understand. For example, a patient with long COVID may experience chest pain, but the typical cardiac tests fail to reveal any issues. However, what those standard tests fail to detect are other underlying issues such as nerve damage from long COVID”. Limitations such as this offer insight into why many test results come back normal for long COVID patients despite their ongoing symptoms.

Healthcare providers may also check for COVID antibodies produced by the immune system in response to COVID-19. However, it has been discovered that more than 50% of long COVID patients do not have these antibodies. Consequently, when these diagnostic tests return with normal results, individuals struggling with long COVID feel that their experiences are not validated, leading them to feel embarrassed and as though they are losing touch with reality.

The challenges faced by women with long COVID

Females under 50 are five times more likely to develop long COVID symptoms than males in the same age bracket. The disproportionate rate at which women contract long COVID has resulted in a disproportionate amount of skepticism from healthcare providers when reviewing their symptoms. Dr. Azola explains that due to gender norms, “women tend to be perceived as hyper-aware of their symptoms, labeled as anxious, premenopausal, or perimenopausal”. Additionally, there is reason to suspect that females from minority races are experiencing this type of prejudice from their healthcare providers with higher frequency. 

Women experiencing fatigue from long COVID have expressed how exhausting it is to constantly meet with physicians who do not believe them. Expending all of their energy visiting healthcare providers makes it harder to maintain their jobs and take care of household responsibilities. Many women with long COVID have reported experiencing heightened financial hardship, job insecurity, and familial conflicts as a direct consequence of their energy depletion. 

Long COVID symptoms in women are often brushed aside as mental health problems. In a research article focused on the experiences of individuals with long COVID, one female nurse explains that her colleagues thought she had anxiety when she experienced heart issues from long COVID. She continues, “I asked for help and did not receive it. It was very hard. I don’t know if it was the physical pain caused by the symptoms that were more difficult, or if it was the lack of understanding from my colleagues”. When patients feel unheard explaining their symptoms, they feel unvalued by their physicians and many are motivated to turn away from the healthcare system entirely.

Suggestions for improving long COVID care

To ensure that women with long COVID can receive the care they deserve, healthcare providers must address their own hidden gender, racial, and other biases. Bias is a significant problem in healthcare. When physicians do not address their own biases, they risk inadvertently lowering their quality of care and contributing to health inequities. Acknowledging and addressing bias improves clinical reasoning, patient safety, and healthcare outcomes. 

Collaboration with other healthcare professionals is another essential element to effective long COVID treatment. Dr. Azola closed our interview stating: “When we signed up to become doctors, we signed up to help people. If the traditional ways of treating diseases aren’t working, it’s our job to figure out new ones.” As healthcare providers collaborate with long COVID experts to research more effective treatments, they will be better equipped to understand and manage long COVID cases. 

Collaboration is also needed between patients and physicians. While the healthcare provider is the expert in medicine, the patient is an expert on their feelings and experiences and is well-positioned to provide clinically relevant information. It is important for both the healthcare provider and the patients to respect each other’s expertise and partner together to make decisions on continued treatment. This united decision-making leads to increased patient trust, treatment adherence, and visit satisfaction.

The reality is, not enough is known about long COVID. As healthcare providers address their hidden biases, collaborate with other healthcare professionals, and embrace shared decision-making, they will improve the quality of their patient care and reduce health inequities, leading to better long COVID outcomes for all. 

Image credit: Image by SouthWorks is licensed by iStock.

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Gender Working Group

We meet online every month to discuss key issues, activities, opportunities and ideas for collaboration. We have a long and growing list of resources on gender and public health emergencies.

JOIN US >

Being Cared for in the Context of Crisis: Austerity, COVID-19, and Racialized Politics

Gender Working Group

We meet online every month to discuss key issues, activities, opportunities and ideas for collaboration. We have a long and growing list of resources on gender and public health emergencies.

JOIN US >

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