May 2025

NEUROSCIENCES

THE ROLE OF ONLINE SUPPORT GROUPS IN LONG COVID PATIENT CARE

Support groups have long been a cornerstone in health care, providing patients with a sense of community and emotional support. Traditionally held in person, these groups allowed individuals to share experiences and coping strategies. With advances in technology, many support groups have transitioned to virtual formats, making them more accessible and convenient.

As we navigate the complexities of care in the wake of the COVID-19 pandemic, it’s become more apparent that innovative approaches to support are key to patient well-being — particularly those with long COVID.

Mike Bielaczyc, LCSW, a social work clinical leader at Northwestern Medicine, shared insights on an online support group established for long COVID patients in January 2023.

The average attendance of around 25 members, with 75% participating regularly, demonstrates the group’s value to patients who attend.

Background
Those who have long COVID, also known as post-COVID-syndrome or post-acute sequelae of SARS-CoV-2 infection (PASC), can experience chronic symptoms that last weeks, months or years after initial COVID-19 infection. Long COVID occurs in approximately one-third of COVID-19 survivors.

Long COVID patients have shared feelings of isolation and a strong desire for connection with others facing similar health challenges. According to a Northwestern Medicine study, 85% of non-hospitalized long COVID patients reported decreased quality of life. This feedback significantly influenced the group’s launch.
  • Many participants reported feeling unseen or misunderstood by their employer, loved ones, and even care teams that are less familiar with long COVID due to the nuanced nature of the condition.
  • The demographic typically most affected by long COVID includes women and other marginalized groups. These groups may face more barriers to receiving appropriate care. They often report that they are not listened to or taken seriously.

The Group’s Approach
  • Meets virtually once a month for 90 minutes
  • Aims to validate and normalize patients’ experience and give them a platform to talk with others with shared experiences
  • Allows for varying levels of participation in a moderated space
  • Combines education and peer support
    • Sessions include presentations on coping strategies and emerging long COVID research from various specialists (such as neurology, OB-GYN and pulmonology) and guest speakers
    • Attendees discuss their experiences, concerns and resources for coping with long COVID

Benefits
  • Patient-reported increases in quality of life: The support group fosters a community where members can find hope from those who have found symptom relief. Patients report improved quality of life and coping strategies.
  • Access to resources: The support group gives patients a platform to share resources and offer help navigating some of the challenges people with long COVID face, including filing for disability, working and managing child care.
  • Insights to improve care: Regular feedback from group discussions informs clinicians about challenges faced by their patients. This supports continued improvements to patient care at the Comprehensive COVID-19 Center.
  • Complement to care: The group complements clinical work, offering additional support and opportunities for research participation.
  • Validation: The group provides emotional support and validation, addressing the gap between patient experience and the lack of understanding from clinicians and society. Long COVID disproportionately affects women and other marginalized groups, who often feel their symptoms are minimized.

Recommendations for Starting Patient Support Groups
  • Virtual support groups offer opportunities for broader participation, especially for those with mobility issues or living in remote areas, while still fostering a strong sense of connection and support.
  • Assess patient needs and interests to tailor the support group effectively.
  • Offering a brief educational section can draw people in and increase engagement.
  • A hybrid approach that includes both education and conversation is best practice.
  • Establish guidelines for privacy and confidentiality to foster a safe environment for sharing.
  • Involve social workers. Their expertise in group dynamics can be key for facilitating a supportive atmosphere.
  • Fliers in clinics, discharge instructions and email reminders help recruit participants.

The Takeaway
Support groups like this one may serve as a model for addressing various chronic illnesses, with positive implications for the future of patient care.
Maciej Bielaczyc, LCSW
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