Immunodeficient. High-risk. Vulnerable. These are words that Indigenous women living with HIV have heard all too often when describing who they are, especially with the global pandemic brought into the picture. These words have been ingrained into the public’s mind when discussing matters of COVID-19, and they are heightened when living with HIV.
Morning Star Lodge (MSL), an Indigenous community-based health research lab, has worked with women living with HIV in Saskatchewan and has built relationships through research studies. When working alongside co-researchers, MSL recognized the ongoing concern for those that are immunodeficient, high-risk and vulnerable is paralleled to those more prone to catching coronavirus.
The COVID-19 pandemic is not about using these words recklessly but it is more important to understand what they mean. We have to understand the difficult trade-offs and feelings of anxiety that come with being a woman living with HIV. In March 2020, in an effort to halt the spread of COVID-19, governments implemented public health measures including testing, isolation and quarantine. In Canada, public health agencies at the federal, provincial and municipal levels all play an essential role in monitoring disease, advising governments and communicating to the public immediate closure and shutdown of services until further notice. These actions have weakened the social cohesion which affected the co-researchers’ access and utilization of services that benefit their health and well-being.
We must acknowledge that COVID-19 has heightened insecurity in the economy, employment, finances, relationships, and of course, physical and mental health. As human beings, we need security. People want to feel safe and have a sense of control over their lives and well-being. Fear and insecurity can leave a person with feelings of stress, anxiety, and powerlessness over their life direction. Lack of security for the basic needs as a human can drain a person emotionally while evoking a downward spiral of endless “what-ifs” and worst-case scenarios of tomorrow’s unknowns.
Indigenous women living with HIV in Saskatchewan experience these emotions, causing a negative outcome in their lifestyles. These experiences are sometimes not personal but have affected their family, community and nation. The COVID-19 outbreak has impacted the lives of Indigenous women living with HIV in Saskatchewan. MSL has partnered with agencies like All Nations Hope Network for research studies working with Indigenous women living with or affected by HIV, also known as the co-researchers. For instance, the women participate in monthly programming, cultural intervention practices, and sharing circles as part of the research study and have discussed the pandemic’s effects as a group. The women have identified that this disease outbreak has affected their access to treatment, causing a communication barrier in the services and programming they usually had received prior to a socially distanced world.
Communication barriers were experienced by women living with HIV because a support person or advocate was limited in how they usually could provide support or comfort when it came to appointments, medication pickup or hospital visits. The women were limited to how they received transportation, treatment and experienced aggressive behaviour from medical staff, causing a sense of judgement and discrimination. Communicating medical information to women living with HIV is extremely important, but at times, can be difficult for both parties. Communication barriers in healthcare can hinder patients’ health outcomes and satisfaction, leading to negative effects.
Saskatchewan’s programming was closed from early March to June, creating limitations for women to access or utilize support services. These services are crucial in the lives of Indigenous women living with HIV because it introduces structure from programming, volunteering in the community, and participating in cultural intervention practices that has helped the women to sustain healthy lifestyles. The COVID-19 outbreak has changed many things about the way they live.
Researchers all over the world have been trying to uncover reliable information about the new virus. This was reflected in this year’s AIDS 2020 International conference, which was held virtually to encourage social distancing. Many works were presented to answer some of the questions raised by the coronavirus and its impacts on people living with HIV (AIDS 2020). Outreach workers and community navigators have observed that mental illness and HIV are closely related. Since COVID-19, organizations that have offered services were able to identify that women living with HIV were mentally affected by COVID-19 when support systems were temporarily closed; some women relapsed, some experiencing child apprehension, and others experienced spousal abuse. The conferences and continuous engagement with the co-researchers have brought forth the concerns of Indigenous women experiencing feelings of loneliness, anxiety, depression, and fear of health outcomes, contributing to the women’s unhealthy lifestyle choices used as a coping mechanism. There are different reasons for this, including increased behavioural risk factors among Indigenous women living with HIV, and the potential for mental illness to interfere with their ability to receive and accept services or supports from advocates and outreach navigators.
During COVID-19, Indigenous women living with HIV in Saskatchewan have faced many barriers affecting their health and well-being. This has resulted in a communication barrier that affects how women living with HIV access and receive health care supports, social support networks, employment, working conditions, health care services, and cultural programming. These determinants of health provide an understanding of the health supports and priorities the women living with HIV have faced in Saskatchewan today. As the pandemic continues, it is important to ensure that programming and access to support systems are prioritized for women living with HIV to support their health and well-being during these uncertain times. Promoting safe-environment programming, adapting practices to allow physical distancing, creating consistent groupings of the same staff, volunteers and participants will all help to ensure the safety and the well-being for women living with HIV. Immunodeficient. High-risk. Vulnerable. These are the words that Indigenous women living with HIV have heard all too often, and it is time to reclaim their identity with who they truly are. Strong. Resilient. Powerful. These are the words that describe who these women truly are.
This article is a component of a collection that will be published by the Royal Society of Canada. The collection is available here: https://rsc-src.ca/en/covid-19