Conceptualizing the Episodic Nature of Disability among Adults Living With Long COVID: Qualitative Study...American Congress of Rehabilitation Medicine (ACRM) 99th Annual Conference, November 8-11, 2022, Chicago, Illinois

To describe experiences of disability among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited participants via collaborator community networks in Canada, United Kingdom, United States and Ireland. Adults who self-identified as living with Long COVID, defined as signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for 12-weeks or more and not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection. Not applicable. We used a semi-structured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory. We conducted a group-based content analysis. Among the 40 participants (10 per country), the median age was 39 years;majority were women (63%), white (73%), heterosexual (75%), and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterized by fluctuations in presence and severity of health-related challenges (disability) that may occur within the day to over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups', and 'peaks' followed by 'crashes', 'troughs', and 'valleys', likened to a 'yo-yo' 'rolling hills', and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Illustrations demonstrated trajectories of health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterized as unpredictability of episodes, their length, severity and triggers, and process of long-term recovery, which had implications on broader health. Experiences of disability were described as episodic in nature, characterized by fluctuating health challenges, which may be unpredictable among this sample of adults living with Long COVID. Results will help to better understand experiences of disability among adults living with Long COVID and inform approaches for rehabilitation. None.

Conceptualizing the Episodic Nature of Disability among Adults Living With Long COVID: Qualitative Study

To describe experiences of disability among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited participants via collaborator community networks in Canada, United Kingdom, United States and Ireland. Adults who self-identified as living with Long COVID, defined as signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for 12-weeks or more and not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection. Not applicable. We used a semi-structured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory. We conducted a group-based content analysis. Among the 40 participants (10 per country), the median age was 39 years;majority were women (63%), white (73%), heterosexual (75%), and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterized by fluctuations in presence and severity of health-related challenges (disability) that may occur within the day to over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups', and 'peaks' followed by 'crashes', 'troughs', and 'valleys', likened to a 'yo-yo' 'rolling hills', and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Illustrations demonstrated trajectories of health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterized as unpredictability of episodes, their length, severity and triggers, and process of long-term recovery, which had implications on broader health. Experiences of disability were described as episodic in nature, characterized by fluctuating health challenges, which may be unpredictable among this sample of adults living with Long COVID. Results will help to better understand experiences of disability among adults living with Long COVID and inform approaches for rehabilitation. None.

Piloting an online telecoaching community-based exercise intervention with adults living with HIV: protocol for a mixed-methods implementation science study.

INTRODUCTION: Our aim is to evaluate the implementation of an online telecoaching community-based exercise (CBE) intervention with the goal of reducing disability and enhancing physical activity and health among adults living with HIV. METHODS AND ANALYSIS: We will conduct a prospective longitudinal mixed-methods two-phased intervention study to pilot the implementation of an online CBE intervention with ~30 adults (≥18 years) living with HIV who consider themselves safe to participate in exercise. In the intervention phase (0-6 months), participants will take part in an online CBE intervention involving thrice weekly exercise (aerobic, resistance, balance and flexibility), with supervised biweekly personal training sessions with a fitness instructor, YMCA membership providing access to online exercise classes, wireless physical activity monitor to track physical activity and monthly online educational sessions on topics related to HIV, physical activity and health. In the follow-up phase (6-12 months), participants will be encouraged to continue independent exercise thrice weekly. Quantitative assessment: Bimonthly, we will assess cardiopulmonary fitness, strength, weight, body composition and flexibility, followed by administering self-reported questionnaires to assess disability, contextual factor outcomes (mastery, engagement in care, stigma, social support), implementation factors (cost, feasibility, technology), health status and self-reported physical activity. We will conduct a segmented regression analyses to describe the change in level and trend between the intervention and follow-up phases. Qualitative assessment: We will conduct online interviews with a subsample of ~10 participants and 5 CBE stakeholders at baseline (month 0), postintervention (month 6) and end of follow-up (month 12) to explore experiences, impact and implementation factors for online CBE. Interviews will be audiorecorded and analysed using content analytical techniques. ETHICS AND DISSEMINATION: Protocol approved by the University of Toronto Research Ethics Board (Protocol # 40410). Knowledge translation will occur in the form of presentations and publications in open-access peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05006391.

Considerations for developing and implementing an online community-based exercise intervention with adults living with HIV: a qualitative study.

OBJECTIVES: To describe the need for, and utility of, online community-based exercise (CBE) interventions with adults living with HIV and identify factors to consider in developing and implementing an online CBE intervention with adults living with HIV. DESIGN: Qualitative descriptive study using web-based semistructured interviews. PARTICIPANTS: We recruited adults representing at least one of five stakeholder groups with experience in CBE and/or HIV: (1) adults living with HIV, (2) rehabilitation professionals, (3) fitness personnel, (4) educators with eLearning experience and (5) representatives from HIV community-based organisations (CBOs). DATA COLLECTION: We asked participants to describe their experiences with online CBE, need and utility for online CBE and factors in developing and implementing online CBE interventions. We analysed data using a group-based thematic analytical approach. RESULTS: Among the 11 participants, most had experience working with adults living with HIV (73%) or with telehealth/rehabilitation/coaching in HIV or other chronic conditions (91%). Participants (eight women; two men; one non-binary; median age: 49 years), identified the need and utility for online CBE interventions to increase accessibility and continuity of care with adults living with HIV. Six factors to consider in developing and implementing online CBE included: (1) person-specific considerations (episodic nature of HIV, stigma, HIV disclosure), (2) accessibility of programme (physical space to exercise, reliable internet, access to devices, digital literacy), (3) programme delivery and technology (live vs prerecorded online classes, multiple online platforms for delivery, physical activity tracking, troubleshooting technology), (4) attributes of programme personnel (working with CBOs, relatable instructors, diverse staff), (5) programme content and design (tailored exercise classes, educational sessions) and (6) building community (shared experiences, peer support, social opportunities). CONCLUSIONS: There is a need and utility for online CBE in the context of HIV. Considerations for development and implementation span individual, structural and technical, and community dimensions. Results can inform the future development and implementation of online CBE with adults living with HIV and other chronic episodic conditions.

Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.

INTRODUCTION: As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID. METHODS AND ANALYSIS: In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test-retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach's alphas (internal consistency reliability), and intraclass correlation coefficients (test-retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic-clinical-community partnership building on foundational work in ED measurement, Long COVID and rehabilitation. ETHICS AND DISSEMINATION: This study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.

"With a PICC line, you never miss": The role of peripherally inserted central catheters in hospital care for people living with HIV/HCV who use drugs.

BACKGROUND: People who use drugs (PWUD), and especially those who inject drugs, are at increased risk of acquiring bloodborne infections (e.g., HIV and HCV), experiencing drug-related harms (e.g., abscesses and overdose), and being hospitalized and requiring inpatient parenteral antibiotic therapy delivered through a peripherally inserted central catheter (PICC). The use of PICC lines with PWUD is understood to be a source of tension in hospital settings but has not been well researched. Drawing on theoretical and analytic insights from "new materialism," we consider the assemblage of sociomaterial elements that inform the use of PICCs. METHODS: This paper draws on n = 50 interviews conducted across two related qualitative research projects within a program of research about the impact of substance use on hospital admissions from the perspective of healthcare providers (HCPs) and people living with HIV/HCV who use drugs. This paper focuses on data about PICC lines collected in both studies. RESULTS: The decision to provide, maintain, or remove a PICC is based on a complex assemblage of factors (e.g., infections, bodies, drugs, memories, relations, spaces, temporalities, and contingencies) beyond whether parenteral intravenous antibiotic therapy is clinically indicated. HCPs expressed concerns about the risk posed by past, current, and future drug use, and contact with non-clinical spaces (e.g., patient's homes and the surrounding community), with some opting for second-line treatments and removing PICCs. The majority of PWUD described being subjected to threats of discharge and increased monitoring despite being too ill to use their PICC lines during past hospital admissions. A subset of PWUD reported using their PICC lines to inject drugs as a harm reduction strategy, and a subset of HCPs reported providing harm reduction-centred care. CONCLUSION: Our analysis has implications for theorizing the role of PICC lines in the care of PWUD and identifies practical guidance for engaging them in productive and non-judgemental discussions about the risks of injecting into a PICC line, how to do it safely, and about medically supported alternatives.