Advocacy and Public Health Messaging
What is the goal of our ADVOCACY AND PUBLIC HEALTH MESSAGING pillar?
Our aim is to bring awareness to the psychosocial impact of LC as well as combat false narratives and stigma associated with Long COVID.
The ‘Living with LC docuseries’
The ‘Living with Long COVID’ docu-series shares the realities of living, managing, and coping with a chronic, episodic impairment or illness like LC. The stories told by people with LC, family caregivers, health and social care providers, and researchers involved in this docuseries highlight key issues and barriers to LC care and rehab across the continuum of care.
Living with LC (and other chronic illnesses and disabilities) is accompanied by physical and cognitive symptoms that impact (and disrupt) activities of daily living (personal care, house chores, child care, etc.), leisure time, and occupational roles.
The experience of living with LC (and other chronic illnesses and disabilities) puts strains on one’s mental and emotional health as people navigate coping with anxiety (around health status, fear (of the unknown), loss (of self, occupation, identity, meaningful activity, purpose), and isolation (from previous relationships and community connections).
LC has been conceptualized as an invisible disability due to its invisible symptoms and impairments (commonly, severe fatigue and brain fog) not visible to the eye. Like other invisible disabilities (e.g., anxiety, depression, chronic pain or fatigue, learning disabilities, etc.), people living with an invisible disability commonly experience perceived stigma that leads to discriminatory attitudes and practices across health and social care systems.
It is not just the person living with LC that experiences disruptions to their activities of daily living, occupational roles, leisure activities, social relationships, mental and emotional health, but also informal family caregivers who are often put into positions to support and care for their loved ones.
People with LC and caregivers are in need of nurturing supportive healing spaces and practices as they navigate the unknowns and complexities of their LC care provisions. We hope this docuseries can inspire hope for a future that better acknowledges, supports, and cares for the LC community broadly.
BEHIND THE SCENES of our ‘Living with Long COVID’ Docuseries Project.
Three people with LC, one caregiver, and two health care providers speak to their understandings and experiences of LC. The filming for this project occurred in May 2024 on-site at St. John’s Rehab Research Program in Toronto, ON. Our study team worked with The Influence Agency (TIA), an influencer marketing company in Toronto, Canada to create this docuseries.
THE ‘LIVING WITH LONG COVID’ ANIMATED VIDEO SERIES
The ‘Living with Long COVID’ educational video series offers education and strategies for supporting psychosocial well-being while living with, or caring for someone with, LC.
We follow the journey of ARI, a senior widower who lives alone, as he navigates the often invisible and challenging realities of long COVID. From the initial exposure to the virus to the ongoing struggle with debilitating symptoms, the video highlights the toll it takes on both his physical and mental health. As well as emphasizing the challenges with navigation the health care system when long COVID symptoms are being dismissed.
This video follows Sheila a mother of three as she juggles family life while living with long COVID. From persistent symptoms like fatigue and brain fog to the stress of navigating insurance, she faces the added isolation due to her fear of social situations. Through her story, we see the emotional and physical toll on both the individual and the family, highlighting the struggles of not being able to provide or care in the ways she used to.
This video follows of Sammy, a caregiver who balances the demanding role of supporting a family impacted by long COVID while working as a graphic designer to support the household. Amidst managing persistent symptoms and navigating healthcare challenges, they face the constant strain of balancing work, caregiving, and the emotional isolation that comes with the illness.
WHAT MORE CAN BE DONE
Patient partners and long COVID stakeholders a part of this work were passionate about creating avenues for long COVID awareness that target three main groups of people: health and social care providers, employers and insurance workers, and the public.