‘You’re alive, but are you living?’ Exploring long COVID (LC)’s impact on social and leisure well-being for individuals and caregivers.

Publication date: Sep 05, 2025

Long COVID (LC) affects physical health and cognition, limiting participation in social and leisure activities. As a novel disabling condition following a COVID-19 infection, informal caregivers of those with LC have taken on expanded roles, including educating themselves on this diagnosis. Gathering insights from people living with LC (PWLC) and their caregivers is crucial for understanding its impact on well-being and identifying targeted rehabilitation practices across the LC care pathway. Utilizing a qualitative descriptive approach, we conducted interviews with 67 participants (52 people with LC and 15 caregivers). Results: Composite narratives were created to introduce three key themes: (1) The demands of managing physical and cognitive symptoms of LC limit the ability of PWLC and caregivers to engage in social and leisure activities; (2) The loss of meaningful social and leisure activities deepens a diminished sense of identity for PWLC and caregivers; and (3) The absence of shared social and leisure engagement intensifies feelings of disconnection and loneliness for PWLC and caregivers. The findings support a need for more social- and leisure-targeted interventions for LC rehabilitation to help to optimize efforts for coping with the psychosocial impacts of living with, or caring for someone with, LC.

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