Publication date: Jun 04, 2025

Long COVID is a debilitating and persistent illness that affects individuals in multiple and dynamic ways. Because of the significant physical, emotional, and economic impacts long COVID holds on individuals, their families, and society more broadly, it is imperative that a multi-faceted approach is taken to the long COVID research that aims to improve outcomes for those affected. Expertise about the barriers and supports to accessing appropriate, patient-centered care is best provided by those with lived experience. A Patient and Community Engagement Research (PaCER) team of student researchers, all with lived experience of long COVID, conducted a qualitative study to understand barriers and supports to a return to health for those living with long COVID. This online study was informed by Canada-wide participants all living with long COVID. Patient experience and perspective data were collected through peer-to-peer focus groups and semi-structured interviews. The team used a thematic and a thematic and narrative analysis approach to identify six themes: Challenges Within Medical Systems to Keep Pace With Novel Condition, Impact of Long COVID Condition on Mental Well-Being, Money Matters, Managing Personal Energy Capacity, Resources and Supports for Long COVID Care and Recovery, and Disregard Participants Felt Toward Their Health and Well-Being. They identified 21 subthemes. This patient-directed study yielded essential recommendations to supporting a return to health for those living with long COVID to enable them to re-engage with their previous family, social, employment, and other relational activities. In addition to demonstrating more inclusive approaches to including long COVID patients in the research that impacts them, the study results can inform more appropriate person-centered healthcare, planning, and policy for those living with, and for those who will be living with, long COVID going forward.

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