Episodic Disability Framework of Long Covid

O’Brien, K. K., et al (2025) summarised by Graciela Maitland

Summary

This study examined the experiences of adults living with Long Covid, focusing on their challenges and how these evolve over time. The goal was to assess how well the components of the Episodic Disability Framework help us understand the different factors and triggers related to disability for people with Long Covid.

The study involved 40 participants, ranging in age from 32 to 49, recruited from Canada, Ireland, the United Kingdom, and the United States, 83% of the participants lived with Long Covid for over a year. The research was conducted through online interviews from December 2021 to May 2022. The study embraced a diversity approach, considering factors such as age, gender identity, ethnicity, and sexual orientation.

Summary

Participants shared their experiences and identified three main themes that align with the Framework: 1) Physical, mental, and emotional challenges, along with difficulties in daily activities and social interactions; 2) External factors such as support from others or stigma, as well as internal factors, like coping skills; and 3) The way certain events can trigger episodes of disability.

People with Long Covid reported physical symptoms, including fatigue, nerve pain, chest pain, and problems with memory and thinking. Fatigue was especially overwhelming, often leading to a “cascade of disability” that restricted daily activities. Participants also faced emotional challenges such as feelings of loss, anxiety, depression, fear, stress, mood swings, and feelings of isolation.

It was also found that support from family, friends, community groups, and health providers could help reduce the impact of disability. Accessible environments, health services, and accommodations from employers made a positive difference. Conversely, stigma, the invisibility of Long Covid, and being “gaslighted” by health providers could increase individuals’ challenges. Strategies that helped included modifying tasks, monitoring health, being prepared, maintaining a positive attitude, and becoming more resilient. Distractions or avoiding issues could worsen the condition.

Disability triggers due to Long Covid can happen immediately or over time. People reported different events or stimuli that made their condition worse or better. These include stress or emotional events, certain foods, other health conditions, medications and hormonal changes. Environmental factors like weather, noise, smoke, and pollen also played a role. Many participants noted that their energy levels changed from day to day or even during the day, highlighting the unpredictability of these triggers.

Conclusion

The Episodic Disability Framework helps us understand disability related to Long Covid and provides guidance for future measurement of disability, health and rehabilitation approaches to enhance practice, research and policy in Long Covid. The study highlights the need for better social support and public health policies that focus on disability and recognise the complex experiences of people living with Long Covid. The disability associated with Long Covid should be understood as a multidimensional condition impacting mental, physical, social and financial aspects of life.

You can read the research here