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.
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.