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What are the barriers and supports to a return to health from long COVID? – A qualitative Canadian study designed, developed, and conducted by individuals with lived experience of long COVID. Passed

Tuesday May 14, 2024 15:44 - 16:30 Poster Arena

Presenter: Ingrid Nielssen

Track: Posters, Pandemic preparedness and responses

Poster can be found in location 59.

Long COVID is now recognized as a persistent and debilitating condition that affects individuals in multiple ways that can also change over the course of the illness. 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 by this phenomenon. The Patient and Community Engagement Research (PaCER) program is an experiential-based learning program offered through the University of Calgary, Canada. A PaCER team of 7 student researchers, all with lived experience of long COVID co-designed and conducted a peer-to-peer research study to understand barriers and supports to a return to health for those living with long COVID. Patient experience and perspective data was collected through online focus groups and semi-structured interviews. The team used a collective and iterative thematic analysis approach to analyze the focus group data and narrative analysis to identify and contrast stories within the interview data. Six themes emerged and were defined as: (1) medical; (2) mental well-being; (3) money matters; (4) energy capacity; (5) resources and supports; and (6) disregard. Twenty-one subthemes emerged that aligned with these themes. This patient-directed study also yielded 6 essential recommendations to supporting a return to health for those living with long COIVD and to enable them to re-engage with their previous social, family, employment, and other relational activities. In addition to demonstrating inclusive and effective patient engagement approaches integrating the long COVID patient voice and perspective into long COVID research, the study results can inform more appropriate person-centred, compassionate health care, health planning and policy management for those living with, and for those who will be living with, long COVID going forward.  

Language

English

Seminar type

Poster

Conference

GCPCC

Authors

Ingrid Nielssen, Marcia Bruce, Sarah Olson, Susie Goulding, Nicole McKenzie, Maria Santana

Lecturers

Profile image for Ingrid Nielssen

Ingrid Nielssen Presenter

AbSPORU, Patient Engagement Coordinator
University of Alberta

Ingrid is the Patient Engagement Coordinator for the Alberta SPOR SUPPORT Unit and the Instructor for the Patient and Community Engagement Research (PaCER) program.
She holds a graduate degree in Gender and Social Justice. As a health equity researcher, she is passionate about co-designing inclusive and meaningful ways to engage those being researched into the health research that impacts them.