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Living with Long-COVID: Patient experience to inform policy makers and care providers

living-with-long-covid-patient-experience-to-inform-policy-makers-and-care-providers

Researcher bios and how their research backgrounds relate to this study

Susan Law, PhD (study lead) is a health services, qualitative researcher with years of experience conducting research into personal narratives about various health conditions to contribute to improvements in health and healthcare. She is the lead researcher of the Health Experiences Research Canada (HERC) network (see: healthexperiences.ca), which is a website that provides free, reliable information about people’s health experiences to help inform others and support better care. Susan also holds the positions of Senior Scientist at the Institute for Better Health at Trillium Health Partners in Mississauga Ontario, Associate Professor at the Institute of Health Policy, Management and Evaluation at the University of Toronto, adjunct professor with McGill Family Medicine, and affiliate scientist at St. Mary’s Research Centre in Montreal.

Purpose of this research project

Post-acute COVID-19 syndrome, often called long-COVID, is a condition that can affect multiple organ systems, causing a wide range of symptoms of varying intensity. Some research suggests as many as 1 in 3 COVID-19 patients develop persistent symptoms, which means that more than 300,000 people in Canada may currently be living with this syndrome. The absence of a common diagnostic approach, the wide variation of presentations, the reliance on clinical judgement − where there is substantial variation amongst healthcare professionals − and the paucity of designated services, are such that many people have described encountering disbelief when seeking help from healthcare professionals. Moreover, the pandemic has impacted diverse populations to varying degrees, and has been particularly challenging for racialized communities, low socio-economic status groups, and those experiencing social marginalization for many reasons including their sexuality and/or gender identity. Thus, beyond the evidence emerging from biomedical, clinical and population health research, we need a nuanced understanding of the lived experience of long-COVID in order to ensure that our clinical and social policy response is equitable, culturally appropriate and flexible enough to accommodate a wide diversity of need.

We will explore how individuals living with long-COVID describe the syndrome and its physical and psychosocial impacts; how the experience of living with long-COVID differs amongst individuals with regard to their individual attributes and the social determinants of health; and consider what these experiences and differences suggest for the development of health and social policy that moves beyond a narrow spectrum of needs. In this way, we aim to contribute to the emerging understanding of this condition and inform recommendations for guiding healthcare and policy responses to the condition.

 

 

 

How this research will help LGBT2SQ people and communities

We know that LGBT2SQ people in Canada experience many health inequalities, including discrimination, stigmatization, and lack of access to appropriate, dedicated services, and that clinical staff working with people living with long-COVID may have limited knowledge of health needs specific to LGBT2SQ communities. Moreover, long-COVID can exacerbate other, pre-existing, health conditions while pandemic restrictions mean that access to treatments for other needs has been profoundly disrupted. These factors impact communities in different ways and to varying degrees with marginalized communities often bearing a disproportionate burden. We aim to partner with LGBT2SQ community members in order to ensure that the impacts of long-COVID on their health, well-being, and day-to-day lives are brought to the attention of healthcare providers and policy makers with a view to improving the appropriateness and quality of care they receive.

Participants

Anyone aged 18 or over, living in Canada, who is able to participate independently in an interview and is willing to have the interview audio and/or video recorded. Participants must have experienced long-COVID symptoms for a minimum of 12 weeks.

Compensation

Participants receive a $50 gift card of their choice (e.g. coffee, grocery, pharmacy, Canadian Tire) by way of thanks for their participation.

Mitigation measures

Our team is well trained in conducting individual interviews that touch upon sensitive topics. We will follow ethical principles and practices in conducting this research so participants may withdraw at any time, and can refrain from answering questions as preferred or when uncomfortable. We will provide a list of local resources regarding emotional support and follow a distress protocol in the event that a participant is visibly upset/emotional or expresses feeling upset/emotional. For example, the interviewer will pause the interview to check in with the participant if they express or show distress and ask if the participant would like a break and/or continue with the interview. If a participant is no longer able to continue with the interview, the interviewer will ask if the participant would like to reschedule for another time, offer the list of resources (if wanted by participant), and ask if they have someone to talk to or if they would like the interviewer to contact someone on their behalf.

We will ask for consent for the use of their media clips, upon participant review and approval of the transcript of their interview, and if desired, the video recording. Participants can opt to be anonymous via the use of an alias name or to have their real name used in the presentation of any media clips or text from their interview. The transcript will be sent to the participants for review, and they can remove any text that they do not wish to be included in the analysis or production of the short catalyst film or international video montage (they can strike out the text as desired and return the transcript to the research team via mail or email). We will also prepare a participant biography that will accompany the online module and short film and ask participants to review and approve before being featured online. A copy of the video/audio recording will be provided to the participants upon request. Participants will be sent a copy (or secure internet link) of the video/audio files to review prior to public release or dissemination. If a participant does not have access to email and/or would prefer to review the video/audio of their interview, this can be arranged.

Promoting the Study

We are promoting this study widely through a variety of channels. These include professional healthcare networks of the investigators, long-COVID online support groups, direct outreach to dedicated long-COVID clinics, and direct outreach to diverse community groups across Canada. We are also promoting it via our website and social media.

RainbowHealthOntario @RainbowHealthOn Nov 24

Thank you to all who attended #RHOInConvo! We were glad to see so many people who care about 2SLGBTQ health care. T… twitter.com/i/web/status/1…