Reaching out to Patients with Long COVID to Better Understand Their Life Experiences and How to Support Their Recovery: A Patient-Oriented Knowledge Sharing Session
2.1. Session Planning
A multidisciplinary team of healthcare professionals involved in the care of patients with LC (physical therapist, occupational therapist, respiratory therapist, and a social worker), LC researchers, and a patient partner living with LC convened to plan and participate in the session. Two planning meetings took place to determine the itinerary and approach of the session. Invitation posters were designed, shared on social media (Facebook, LinkedIn, and Twitter), and distributed by email. Participants registered using an online platform to attend the event free of charge.
The session took place on 27 June 2023 (~2 h) and contained several presentations delivered by different members of the team. The presentations included: (1) an overview of the available knowledge surrounding LC (prevalence, potential causes), LC’s impact on patients’ health and daily activities (reported in the literature and by the participants of the session), and LC healthcare use and perceived needs (reported by the participants of the session); (2) information about self-management resources for mild to moderate symptoms (Shared Health Provincial LC Website); (3) self-management virtual education sessions (Winnipeg Regional Health Authority Self-Management Group); and (4) a local LC rehabilitation program (Easy Street Program at Misericordia Hospital). The information collected from the pre-session survey was displayed during the first presentation of the session. This provided participants with the opportunity to relate their symptoms and/or experiences with the literature and with one another. Participants had the opportunity to ask questions and share their opinions and/or experiences throughout the sessions, with the aim of creating connections among the attendees and the ideas and concepts presented.
Following the session, all participants were sent another link via the registration platform to complete a post-session feedback survey. Participants were asked to rate the session and usefulness of the information presented, if they might like to attend a similar activity in the future, and what type of information they might like to see included.
Registration for the session was set up on Eventbrite and was open to everyone, including family members or others caring for someone with LC. Out of the 41 people who registered for the session, the majority were people experiencing LC (73%), followed by family members (15%), and others who had no personal connection to LC (12%).
In total, 30 people attended the session, including 28 who registered in advance and 2 who presented without having registered. Fourteen participants evaluated the session in an online post-session survey. Overall, the participants liked the session (mean 4.29 out of 5 (SD 0.73), found the information presented useful (mean 4.15 out of 5 (SD 0.8)), and 93% might like us to host a similar event in the future.
3.2. Patients’ Experiences with LC
People who registered were asked to complete a pre-session survey if they were experiencing long COVID symptoms using the following sentence, “we might greatly appreciate if the person experiencing long COVID completes this short survey prior to the meeting”. Twenty-six people completed the pre-session survey (20 online, and 6 filled out a paper version at the start of the session). The small discrepancy between the number of people registered and the pre-session surveys completed may be explained by the fact that some of the people who completed the online survey may not have been able to attend the session, and some of the attendees may have been family members or other caregivers who did not need to complete the survey.
Some of the main resources the participants might like to have available to support their recovery include a healthcare provider that specializes in LC (88%), a clinic that specializes in LC (80%), more advertising of the local resources available (48%), more primary care providers aware of LC (44%), and a local support group (40%). Participants also expressed wanting resources to help with cognitive issues and fatigue, recognition of LC as a medical condition, better access to comprehensive healthcare services, an exercise regime specific to LC, information about job searches and/or accommodation, and financial/disability assistance for those living with LC.
In addition to care resources to support their recovery, some participants expressed interest in receiving financial assistance and information on how to find employment suitable to their condition. Unfortunately, several people living with LC are unable to work due to their symptoms and have their application for disability benefits denied. Since there is no specific test for diagnosing LC, it is difficult to prove that someone has the condition, at least by the existing standards of insurance companies and Social Security. The lack of official guidelines has also resulted in several doctors being hesitant to support disability benefit applications. As a result, LC patients may experience a significant financial burden that must also be considered when providing comprehensive management to this group of patients.
Interestingly, 12% of the session attendees were not personally experiencing or caring for a family member with LC symptoms. Based on the email address used for the registration on the event platform and a few direct inquiries to the organizing team about the session, we speculate that some of these people can be healthcare providers who were seeking to be informed. Although we cannot be certain, this suggests that care providers may be interested in learning more about the condition, the local resources available, and how to best support the people in their care. This scenario might suggest an appeal for involving these stakeholders in LC research and education initiatives, including continuing professional development.
4.1. Lesson Learned and Future Considerations
Despite allocating sufficient time for discussion and breaks during the planning of the activity, the presentations and discussions ran longer than expected. It was tiring for some of the participants, and unfortunately, a few of them needed to leave before the end of the session. This is a lesson that can be applied to future sessions, where the presentations should be shorter, and more time should be allocated for participants to interact with one another.
It is important to take into account that this report is based on an intervention originally conceived as a patient-oriented knowledge-sharing session and not as a research study. The data elicited from the participants were to inform an initial exploration of LC experiences and perceived needs. As such, some limitations should be considered when interpreting the results. First, the sample was not purposefully identified. Although the team intended to advertise the event widely, it may not have reached all potential participants, which can have introduced a selection bias. Second, information was not collected on some important characteristics of the participants, such as ethnicity, comorbidities, pre-COVID-19 health, occupation, or socioeconomic status. We were cautioned and careful to structure the session and activities in a way that might not overburden the participants; thus, the survey only asked for responses to two demographic questions. Third, we did not collect information related to recurrent COVID-19 infections, which present as an LC risk factor. Evidence suggested an increased risk of LC after a second or third infection. However, since the exploration of LC risk factors was outside the scope of this report, the lack of this information does not affect the findings reported in this manuscript. Fourth, a small number of people participated in the session. However, we believe the process and findings are valuable to inform future events and research involving a larger group of participants.
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