ABSTRACT
There are mental and physical deficits associated with COVID-19 infection, particularly among individuals requiring hospitalization. Storytelling is a relational intervention that has been used to help patients make sense of their illness experiences and to share their experiences with others, including other patients, families and healthcare providers. Relational interventions strive to create positive, healing stories versus negative ones. In one urban acute care hospital, an initiative called the Patient Stories Project (PSP) uses storytelling as a relational intervention to promote patient healing, including the development of healthier relationships among themselves, with families and with healthcare providers. This qualitative study employed a series of interview questions that were collaboratively developed with patient partners and COVID-19 survivors. The questions asked consenting COVID-19 survivors about why they chose to tell their stories and to flesh out more about their recovery process. Thematic analyses of six participant interviews resulted in the identification of key themes along a COVID-19 recovery pathway. Patients' stories revealed how survivors progress from being overwhelmed by their symptoms to making sense of what is happening to them, providing feedback to their care providers, feeling gratitude for care received, becoming aware of a new state of normal, regaining control of their lives, and ultimately discovering meaning and an important lesson behind their illness experience. Our study's findings suggest that the PSP storytelling approach holds potential as a relational intervention to support COVID-19 survivors along a recovery journey. This study also adds knowledge about survivors beyond the first few months of recovery.
ABSTRACT
Introduction: Coronavirus Disease-2019 (COVID-19) affects multiple organ systems in the acute phase and also has long-term sequelae. Research on the long-term impacts of COVID-19 is limited. The Post COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN), conceived in July 2020, is a provincially funded resource that is modelled as a Learning Health System (LHS), focused on those people with persistent symptoms post COVID-19 infection. Methods: The PC-ICCN emerged through collaboration among over 60 clinical specialists, researchers, patients, and health administrators. At the core of the network are the post COVID-19 Recovery Clinics (PCRCs), which provide direct patient care that includes standardized testing and education at regular follow-up intervals for a minimum of 12 months post enrolment. The PC-ICCN patient registry captures data on all COVID-19 patients with confirmed infection, by laboratory testing or epi-linkage, who have been referred to one of five post COVID-19 Recovery Clinics at the time of referral, with data stored in a fully encrypted Oracle-based provincial database. The PC-ICCN has centralized administrative and operational oversight, multi-stakeholder governance, purpose built data collection supported through clinical operations geographically dispersed across the province, and research operations including data analytics. Results: To date, 5364 patients have been referred, with an increasing number and capacity of these clinics, and 2354 people have had at least one clinic visit. Since inception, the PC-ICCN has received over 30 research proposal requests. This is aligned with the goal of creating infrastructure to support a wide variety of research to improve care and outcomes for patients experiencing long-term symptoms following COVID-19 infection. Conclusions: The PC-ICCN is a first-in-kind initiative in British Columbia to enhance knowledge and understanding of the sequelae of COVID-19 infection over time. This provincial initiative serves as a model for other national and international endeavors to enable care as research and research as care.