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Across North America, the opioid overdose epidemic is leading to increasing hospitalizations of people who use drugs (PWUD). However, hospitals are ill-prepared to meet the needs of PWUD. We focus on illicit drug use while admitted to hospital and how PWUD and health care providers describe, respond, and attempt to manage its use. Using varied purposive methods in Toronto and Ottawa, we recruited n = 24 PWUD (who self-reported that they were living with HIV and/or HCV infection; currently or had previously used drugs or alcohol in ways that were harmful; had a hospital admission in the past five years) and n = 26 health care providers (who were: currently working in an academic hospital as a physician, nurse, social worker or other allied health professional; and 2) providing care to this patient group). All n = 50 participants completed a short, socio-demographic questionnaire and an audio-recorded semi-structured interview about receiving or providing acute care in a hospital between 04/2014 and 05/2015. Patient participants received $25 CAD and return transit fare; provider participants received a $50 CAD gift card for a bookseller. All participants provided informed consent. Audio-recordings were transcribed verbatim, corrected, and uploaded to NVivo 10. Using the seven-step framework method, transcripts were coded line-by-line and managed using NVvivo. An analytic framework was created by grouping and mapping the codes. Preliminary analyses were presented to advisory group members for comment and used to refine the interpretation. Questionnaire data were managed using SPSS version 22.0 and descriptive statistics were used to describe the participants. Many but not all patient participants spoke about using psycho-active substances not prescribed to them during a hospital admission. Attempts to avoid negative experiences (e.g., withdrawal, boredom, sadness, loneliness and/or untreated pain) were cited as reasons for illicit drug use. Most tried to conceal their illicit drug use from health care providers. Patients described how their self-reported level of pain was not always believed, tolerance to opioids was ignored, and requests for higher doses of pain medications denied. Some health care providers were unaware of on-site illicit drug use; others acknowledged it occurred. Few could identify a hospital policy specific to illicit drug use and most used their personal beliefs to guide their responses to it (e.g., ignore it, increase surveillance of patients, reprimands, loss of privileges/medications, threats of immediate discharge should it continue, and substitution dosing of medication). Providers highlighted gaps in institutional guidance for how they ought to appropriately respond to in-hospital substance use. Patients attempted to conceal illicit drug use in environments with no institutional policies about such use, leading to varied responses that were inconsistent with the principles of patient centred care and reflected personal beliefs about illicit drug use. There are increasing calls for implementation of harm reduction approaches and interventions in hospitals but uptake has been slow. Our study contributes to this emerging body of literature and highlights areas for future research, the development of interventions, and changes to policy and practice.

Background Drug use is associated with increased morbidity and mortality but people who use drugs experience significant barriers to care. Data are needed about the care experiences of people who use drugs to inform interventions and quality improvement initiatives. The objective of this study is to describe and characterize the experience of acute care for people who use drugs. Methods We conducted a qualitative descriptive study. We recruited people with a history of active drug use at the time of an admission to an acute care hospital, who were living with HIV or hepatitis C, in Toronto and Ottawa, Canada. Data were collected in 2014 and 2015 through semi-structured interviews, audio-recorded and transcribed, and analyzed thematically. Results Twenty-four adults (18 men, 6 women) participated. Participants predominantly recounted experiences of stigma and challenges accessing care. We present the identified themes in two overarching domains of interest: perceived effect of drug use on hospital care and impact of care experiences on future healthcare interactions. Participants described significant barriers to pain management, often resulting in inconsistent and inadequate pain management. They described various strategies to navigate access and receipt of healthcare from being “an easy patient” to self-advocacy. Negative experiences influenced their willingness to seek care, often resulting in delayed care seeking and targeting of certain hospitals. Conclusion Drug use was experienced as a barrier at all stages of hospital care. Interventions to decrease stigma and improve our consistency and approach to pain management are necessary to improve the quality of care and care experiences of those who use drugs.

ObjectivesThe Episodic Disability Questionnaire (EDQ) was developed to measure the presence, severity and episodic nature of disability experienced among persons with chronic conditions. Our aim was to assess the sensibility, utility and implementation considerations of the EDQ among older adults with complex health needs.DesignCross-sectional measurement study involving quantitative and qualitative methods of data collection. ParticipantsWe recruited community-dwelling older adults (65 years of age or older) living with complex health needs receiving care from a primary healthcare team in Toronto, Canada.MethodsWe administered the EDQ, sensibility questionnaire (assessing face and content validity, and ease of usage, with each item scored from 0 to 7 with greater scores indicating greater sensibility) and demographic questionnaire, followed by a semi-structured interview in the home or clinical setting. Using an interview guide, we asked participants about their perspectives on utility, format and implementation of the EDQ in clinical practice. We considered the EDQ sensible if the median score on the sensibility questionnaire was ≥5/7 for ≥80% of items and if none of the items had a median score of ≤3/7. We conducted a team-based directed content analysis of the interview transcripts.ResultsThe median age of the 11 participants in this study was 83 years of age. All participants reported living with two or more chronic health conditions, with osteoarthritis (n=5) and diabetes (n=4) most frequently reported. The EDQ met the criterion for sensibility as measured by the sensibility questionnaire. Interview data from participants (n=10) indicated that the EDQ represents the health-related challenges among this sample of older adults with complex health needs, captures the episodic nature of disability and was easy to use. Utility of the EDQ included providing clinicians with a holistic understanding of health challenges older adults face, aiding in intervention planning and measuring changes in disability over time. Six of the participants also expressed uncertainty as to how the EDQ specifically could be used by clinicians in their care. Considerations for implementation included mode of administration (paper or electronic) and the importance of communicating EDQ scores with older adults based on individual preferences.ConclusionsThe EDQ possesses sensibility and utility for use among this sample of older adults living with complex health needs in home or clinical care settings.

Increasing numbers of adults are living with the health-related consequences of Long COVID. The Episodic Disability Framework (EDF), derived from perspectives of adults living with HIV, characterizes the multi-dimensional and episodic nature of health-related challenges (disability) experienced by an individual. Our aim was to determine the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited adults who self-identified as living with Long COVID via collaborator community organizations in Canada, Ireland, United Kingdom, and United States. We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used a semi-structured interview guide informed by the EDF to explore experiences of disability living with Long COVID, specifically health-related challenges and how challenges were experienced over time. We conducted a group-based content analysis. Of the 40 participants, the median age was 39 years; and the majority were white (73%), women (63%), living with Long COVID for ≥ 1 year (83%). Consistent with the Episodic Disability Framework, disability was described as multi-dimensional and episodic, characterized by unpredictable periods of health and illness. Experiences of disability were consistent with the three main components of the Framework: A) dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty); B) contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and C) triggers that initiate episodes of disability. The Episodic Disability Framework provides a way to conceptualize the multi-dimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID.

Our aim was to examine the impact of a community-based exercise (CBE) intervention on cardiorespiratory fitness, cardiovascular health, strength, flexibility, and physical activity outcomes among adults living with HIV. We conducted a longitudinal intervention study with community-dwelling adults living with HIV in Toronto, Canada. We measured cardiopulmonary fitness (V̇O2peak (primary outcome), heart rate, blood pressure), strength (grip strength, vertical jump, back extension, push-ups, curl ups), flexibility (sit and reach test), and self-reported physical activity bimonthly across three phases. Phase 1 included baseline monitoring (8 months); Phase 2 included the CBE Intervention (6 months): participants were asked to exercise (aerobic, strength, balance and flexibility training) for 90 minutes, 3 times/week, with weekly supervised coaching at a community-based fitness centre; and Phase 3 included follow-up (8 months) where participants were expected to continue with thrice weekly exercise independently. We used segmented regression (adjusted for baseline age and sex) to assess the change in trend (slope) among phases. Our main estimates of effect were the estimated change in slope, relative to baseline values, over the 6 month CBE intervention. Of the 108 participants who initiated Phase 1, 80 (74%) started and 67/80 (84%) completed the intervention and 52/67 (77%) completed the study. Most participants were males (87%), with median age of 51 years (interquartile range (IQR): 45, 59). Participants reported a median of 4 concurrent health conditions in addition to HIV (IQR: 2,7). Participants attended a median of 18/25 (72%) weekly supervised sessions. Change in V̇O2peak attributed to the six-month Phase 2 CBE intervention was 0.56 ml/kg/min (95% Confidence Interval (CI): -1.27, 2.39). Significant effects of the intervention were observed for systolic blood pressure (-5.18 mmHg; 95% CI: -9.66, -0.71), push-ups (2.30 additional push-ups; 95% CI: 0.69, 3.91), curl ups (2.89 additional curl ups; 95% CI: 0.61, 5.17), and sit and reach test (1.74 cm; 95% CI: 0.21, 3.28). More participants engaged in self-reported strength (p<0.001) and flexibility (p = 0.02) physical activity at the end of intervention. During Phase 3 follow-up, there was a significant reduction in trend of benefits observed during the intervention phase for systolic blood pressure (1.52 mmHg/month; 95% CI: 0.67, 2.37) and sit and reach test (-0.42 cm/month; 95% CI: -0.68, -0.16). Adults living with HIV who engaged in this six-month CBE intervention demonstrated inconclusive results in relation to V̇O2peak, and potential improvements in other outcomes of cardiovascular health, strength, flexibility and self-reported physical activity. Future research should consider features tailored to promote uptake and sustained engagement in independent exercise among adults living with HIV. NCT02794415. https://clinicaltrials.gov/ct2/show/record/NCT02794415.

IntroductionOur aim was to describe episodic nature of disability among adults living with Long COVID.MethodsWe conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured 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 and conducted a group-based content analysis.ResultsAmong the 40 participants, the median age was 39 years (IQR: 32–49); 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, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and 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. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.ConclusionAmong this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

ObjectivesTo explore experiences of physiotherapists working with adults living with Long COVID in Canada.DesignCross-sectional descriptive qualitative study involving online semi-structured interviews.ParticipantsWe recruited physiotherapists in Canada who self-identified as having clinically treated one or more adults living with Long COVID in the past year.Data collectionUsing an interview guide, we inquired about physiotherapists’ knowledge of Long COVID, assessment and treatment experiences, perspectives on physiotherapists’ roles, contextual and implementation factors influencing rehabilitative outcomes, and their recommendations for Long COVID rehabilitation. Interviews were audio-recorded, transcribed verbatim and analysed using a group-based thematic analytical approach. We administered a demographic questionnaire to describe sample characteristics.Results13 physiotherapists from five provinces participated; most were women (n=8; 62%) and practised in urban settings (n=11; 85%). Participants reported variable amounts of knowledge of existing guidelines and experiences working with adults living with Long COVID in the past year. Physiotherapists characterised their experiences working with adults living with Long COVID as a dynamic process involving: (1) a disruption to the profession (encountering a new patient population and pivoting to new models of care delivery), followed by (2) a cyclical process of learning curves and evolving roles of physiotherapists working with persons living with Long COVID (navigating uncertainty, keeping up with rapidly emerging evidence, trial and error, adapting mindset and rehabilitative approaches and growing prominence of roles as advocate and collaborator). Participants recommended the need for education and training, active and open-minded listening with patients, interdisciplinary models of care, and organisational- and system-level improvements to foster access to care.ConclusionsPhysiotherapists’ experiences involved a disruption to the profession followed by a dynamic process of learning curves and evolving roles in Long COVID rehabilitation. Not all participants demonstrated an in-depth understanding of existing Long COVID rehabilitation guidelines. Results may help inform physiotherapy education in Long COVID rehabilitation.

ObjectivesOur aim was to explore readiness to engage in exercise among people living with HIV and multimorbidity.DesignWe conducted a descriptive qualitative study using face-to-face semistructured interviews with adults living with HIV.SettingWe recruited adults (18 years or older) who self-identified as living with HIV and 2 or more additional health-related conditions from a specialty hospital in Toronto, Canada.Participants14 participants with a median age of 50 years and median number of 9 concurrent health-related conditions participated in the study. The majority of participants were men (64%) with an undetectable viral load (71%).Outcome measuresWe asked participants to describe their readiness to engage in exercise and explored how contextual factors influenced their readiness. We analysed interview transcripts using thematic analysis.ResultsWe developed a framework to describe readiness to engage in exercise and the interplay of factors and their influence on readiness among adults with HIV and multimorbidity. Readiness was described as a diverse, dynamic and fluctuating spectrum ranging from not thinking about exercise to routinely engaging in daily exercise. Readiness was influenced by the complex and episodic nature of HIV and multimorbidity comprised of physical impairments, mental health challenges and uncertainty from HIV and concurrent health conditions. This key factor created a context within which 4 additional subfactors (social supports, perceptions and beliefs, past experience with exercise, and accessibility) may further hinder or facilitate an individual's position along the spectrum of readiness to exercise.ConclusionsReadiness to engage in exercise among people living with HIV is a dynamic and fluctuating construct that may be influenced by the episodic nature of HIV and multimorbidity and 4 subfactors. Strategies to facilitate readiness to exercise should consider the interplay of these factors in order to enhance physical activity and subsequently improve health outcomes of people with HIV and multimorbidity.

Introduction Long Covid and other infection‐associated chronic condition communities have been integral in advocating for patient engagement in all stages of research, from design and conduct, and implementation, through to interpretation and knowledge translation; nevertheless, the process varies across research teams. In this paper, we (1) describe our process undertaking a community‐engaged Long Covid research study; (2) evaluate our community‐engaged approach, highlighting strengths and limitations with our process; and (3) identify recommendations for engaging in community‐engaged patient‐oriented research in Long Covid. Methods Guided by the 4PI (Principles; Purpose; Presence; Process; Impact) Framework and Patient‐Led Research Scorecards, we describe our community‐engaged approach within the Long COVID and Episodic Disability Study, followed by an evaluation of our community engagement using a multistage consultation with members of the Long COVID and Episodic Disability Study team. We conducted an online group‐based discussion among persons with lived experiences and administered a web‐based Scorecard questionnaire rating the collaboration as it relates to four domains of patient burden, governance, integration into the research process, and organisation readiness to all members of the team, to assess strengths and limitations of our approach. Scores ranged from −2 (non‐collaboration) to +2 (ideal collaboration). Results Ten team members, five of whom were persons with lived experiences, completed the Scorecard questionnaire. Median Scorecard scores ranged from +1 to +2 for all domains. Five team members with lived experiences, representing four community support groups and organisations that participated in the community‐engagement discussion. We describe the practices and principles that enabled meaningful community engagement, with the strengths and limitations of our approach embedded throughout. Conclusion Our community‐engaged approach to the Long COVID and Episodic Disability Study enhanced the quality and relevance of the study to the community while highlighting areas to heighten meaningful engagement throughout. This study builds on foundational community‐based research principles of patient‐oriented research. Recommendations derived from our experiences may be used by other research teams conducting community‐engaged patient‐oriented research. Patient or Public Contribution The Long COVID and Episodic Disability Study is a community‐engaged research study involving 25 members, including 12 persons living with long Covid, 13 researchers and 5 clinicians (categories are not mutually exclusive), referred to as the Full Team. Persons with lived experiences possessed a range of professional and personal experiences spanning research, clinical, policy and private sector/business contexts; team members wore multiple hats and perspectives which collectively strengthened the diversity of expertise, perspectives and insights to the team and process. Engagement of people with lived experiences with Long Covid ensured that the study was fully co‐created with people living with Long Covid. During the development of the study proposal, community partners from organisations in Canada, Ireland, the United Kingdom and the United States, who were linked to larger networks of people living with Long Covid, were purposefully invited to join the study team. Several Long Covid community networks and organisations, represented by persons living with Long Covid, were involved in all stages of the research, including: COVID Long‐Haulers Support Group Canada (S.G.); Long COVID Advocacy Ireland (I.O., S.O. and R.S.); Long COVID Ireland (N.R. and R.S.); Long COVID Physio (D.A.B. and C.T.); Long Covid Support UK (M.O.H.); and Patient‐Led Research Collaborative (L.M., N.M. and H.W.). These representatives along with the Co‐PIs (K.K.O. and D.A.B.) and co‐ordinator (K.M.) comprised the Core Long COVID and Episodic Disability Community Collaborator Team (Core Team). Team members with lived experiences were provided yearly remuneration for their time and expertise dedicated to the study, either as an individual, or to the community organisation which they represented on the study according to their preference.

ObjectivesOur aim was to examine wireless physical activity monitor (WPAM) use and its associations with contextual factors (age, highest education level, social support and mental health) among adults living with HIV engaged in a community-based exercise (CBE) intervention.DesignQuantitative, longitudinal, observational study.SettingToronto YMCA, Ontario, Canada.ParticipantsEighty adults living with HIV who initiated the CBE intervention.InterventionParticipants received a WPAM to track physical activity during a 25-week CBE intervention involving thrice-weekly exercise, supervised weekly (phase 1) and a 32-week follow-up involving thrice-weekly exercise with no supervision (phase 2), completed in December 2018.Outcome measuresUptake was measured as participants who consented to WPAM use at initation of the intervention. Usage was defined as the proportion of days each participant had greater than 0 steps out of the total number of days in the study. We measured contextual factors using a baseline demographic questionnaire (age, highest education level), and median scores from the bimonthly administered Medical Outcomes Study-Social Support Scale and Patient Health Questionnaire (mental health), where higher scores indicated greater social support and mental health concerns, respectively. We calculated Spearman correlations between WPAM usage and contextual factors.ResultsSeventy-six of 80 participants (95%) consented to WPAM use. In phase 1, 66% of participants (n=76) and in phase 2, 61% of participants (n=64) used the WPAM at least 1 day. In phase 1, median WPAM usage was 50% (25th, 75th percentile: 0%, 87%; n=76) of days enrolled and in phase 2, 23% (0%, 76%; n=64) of days. Correlation coefficients with WPAM usage ranged from weak for age (ρ=0.26) and mental health scores (ρ=−0.25) to no correlation (highest education level, social support).ConclusionsMost adults living with HIV consented to WPAM use, however, usage declined over time from phase 1 to phase 2. Future implementation of WPAMs should consider factors to promote sustained usage by adults living with HIV.Trial registration numberNCT02794415.