A roadmap to engaging patients in research: The experience of a large academic research hospital in Canada

Recent definitions of patient engagement in research (PER) emphasize that engagement should be meaningful, active and an equal collaboration across the research continuum. The increased interest in patient engagement is predicated on the recognition by researchers of the unique experiential knowledge provided by individuals with lived experience, ethical obligations to democratize science and that patient involvement can potentially lead to improved outcomes for patients and researchers. Sunnybrook Health Sciences Center is a large academic research hospital in Toronto, Canada which aimed to create clearer pathways for patients to have a more prominent voice in the development, implementation, and dissemination of research. However, to ensure that the policies, practices and resources to support PER would be viewed as meaningful to all stakeholders (including, but not limited to, administrators, clinicians, clinician researchers, scientists, patients, family members and caregivers), a series of structured activities were undertaken to foster collective buy-in and co-create an operational implementation plan for PER. The activities consisted of a consecutive mixed methods approach of three phases of discovery: a survey, focus groups and interviews, and an in-person town hall. We describe our approach to implementation and operationalization of PER at an academic hospital based on five identified priority themes: education and training, partnerships, matching programs, policies and measures. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Impact of Falls and Fear of Falling on Participation, Autonomy and Life Satisfaction in the First Year After Spinal Cord Injury

IntroductionIndividuals with spinal cord injury (SCI) experience reduced participation in meaningful activities, leading to reduced social engagement and negative psychological impact. Two factors that may affect participation post-SCI are fall status (e.g., having experienced a fall) and having a fear of falling. Our objective was to examine if and how fall status and fear of falling impact participation, autonomy and life satisfaction in the first year post-injury.MethodsAdult inpatients of a SCI rehabilitation hospital were recruited. Following discharge, falls were tracked for 6 months and participants who fell at least once were categorized as “fallers”. At the end of the 6-month period, the Impact on Participation and Autonomy Questionnaire and Life Satisfaction Questionnaire 9 were administered, and participants were asked if they had a fear of falling (i.e., an ongoing concern about falling leading to the avoidance of activities they are capable of doing). Falls were reported using descriptive statistics. Ordinary least squares regression was used to evaluate the relationships between the independent variables (i.e., fall status and fear of falling) and each dependent variable (i.e., questionnaire scores).ResultsSeventy-one individuals were enrolled in the study; however, 11 participants were lost to follow-up. The included participants (n = 60) were 58.4 ± 14.6 years old and 99 ± 60.3 days post-injury. Over one third (38.3%) of participants fell over the 6-month tracking period. Twenty-seven participants (45%) reported a fear of falling and 14 (51.9%) of these participants were fallers. Fear of falling significantly predicted scores of autonomy indoors (β = 3.38, p = 0.04), autonomy outdoors (β = 2.62, p = 0.04) and family role (β = 3.52, p = 0.05).ConclusionIndividuals with subacute SCI and a fear of falling experienced reduced participation and autonomy, but with no differences in life satisfaction compared to those without a fear of falling. In contrast, having experienced a fall did not impact participation, autonomy or life satisfaction. In the first year after SCI, rehabilitation programs should place specific attention on the presence of fear of falling to help individuals with SCI prepare for everyday mobility challenges

Measuring hand use in the home after cervical spinal cord injury using egocentric video

Background: Egocentric video has recently emerged as a potential solution for monitoring hand function in individuals living with tetraplegia in the community, especially for its ability to detect functional use in the home environment. Objective: To develop and validate a wearable vision-based system for measuring hand use in the home among individuals living with tetraplegia. Methods: Several deep learning algorithms for detecting functional hand-object interactions were developed and compared. The most accurate algorithm was used to extract measures of hand function from 65 hours of unscripted video recorded at home by 20 participants with tetraplegia. These measures were: the percentage of interaction time over total recording time (Perc); the average duration of individual interactions (Dur); the number of interactions per hour (Num). To demonstrate the clinical validity of the technology, egocentric measures were correlated with validated clinical assessments of hand function and independence (Graded Redefined Assessment of Strength, Sensibility and Prehension - GRASSP, Upper Extremity Motor Score - UEMS, and Spinal Cord Independent Measure - SCIM). Results: Hand-object interactions were automatically detected with a median F1-score of 0.80 (0.67-0.87). Our results demonstrated that higher UEMS and better prehension were related to greater time spent interacting, whereas higher SCIM and better hand sensation resulted in a higher number of interactions performed during the egocentric video recordings. Conclusions: For the first time, measures of hand function automatically estimated in an unconstrained environment in individuals with tetraplegia have been validated against internationally accepted measures of hand function. Future work will necessitate a formal evaluation of the reliability and responsiveness of the egocentric-based performance measures for hand use

The experiences of patients, family caregivers, healthcare providers, and health service leaders with compassionate care following hospitalization with COVID-19: a qualitative study

Purpose: This study explored the experiences of patients, caregivers, healthcare providers, and health service leaders of compassion in the care of people hospitalized with COVID-19. Materials and methods: This study is a secondary analysis of qualitative data deriving from primary research data on recommendations for healthcare organizations providing care to people hospitalized with COVID-19. Participants comprised patients with COVID-19 (n = 10), family caregivers (n = 5) and HCPs in COVID-19 units (n = 12). Primary research data were analyzed deductively under the “lens” of compassion, as defined by Goetz. Results: Four interacting themes were found: (1) COVID-19 – to care or not to care? The importance of feeling safe, (2) A lonely illness – suffering in isolation with COVID-19, (3) Compassionate care for people with COVID-19 across the hospital continuum, and (4) Sustaining compassionate care for people hospitalized with COVID-19 – healthcare provider compassion fatigue and burnout. Conclusions: Compassionate care is not a given for people hospitalized with COVID-19. Healthcare providers must feel safe to provide care before responding compassionately. People hospitalized with COVID-19 experience additional suffering through isolation. Compassionate care for people hospitalized with COVID-19 is more readily identifiable in the rehabilitation setting. However, compassion fatigue and burnout in this context threaten healthcare sustainability

“You want them to be partners in therapy, but that's tricky when they’re not there”: A qualitative study exploring caregiver involvement across the continuum of care during the early COVID pandemic

Objective: Widespread visitor restrictions were implemented during the COVID-19 pandemic at acute and inpatient rehabilitation hospitals. Family caregivers were physically isolated from their loved ones, which challenged engagement in patient care and readiness for their role. Thus, we aimed to explore the involvement of family caregivers in COVID-19 patients as they journeyed across the care continuum during the early phase of the COVID-19 pandemic. Design: We employed a qualitative descriptive approach. Participants: We conducted interviews with family caregivers, COVID-19 patients, and healthcare providers between August 2020 and February 2021. Setting: Participants were recruited from a single hospital network in Toronto, Ontario, Canada. Interviews were recorded and transcribed. Data were analyzed thematically. Results: A total of 27 participants were interviewed—12 healthcare providers, 10 patients, and 5 family caregivers. Four themes were identified: (a) Caregivers were shut out in acute COVID care, (b) Patient discharge from inpatient rehabilitation was turbulent for caregivers, (c) Caregivers were unprepared to support loved ones in the community, and (d) Patient discharge to home was heavily dependent on caregiver availability. Conclusions: Visitor restrictions prevent family caregivers from being physically present at patients’ bedside, leading to complex and detrimental impacts such as caregivers feeling that they were not engaged in their loved one's care planning until they were discharged. In turn, discharge to the community was met with several challenges including caregivers feeling underprepared and unsupported to meet their loved one's unique care requirements. This was exacerbated by a lack of community-based resources due to ongoing pandemic restrictions

Patients, Caregivers, and Healthcare Providers’ Experiences with COVID Care and Recovery across the Care Continuum: A Qualitative Study

Introduction: During the COVID-19 pandemic, discharge timelines were accelerated and patients were moved across the continuum of care, from acute to post-acute care, to relieve the strain in health system capacity. This study aimed to investigate the COVID-19 care pathway from the perspective of patients, caregivers, and healthcare providers to understand their experiences with care and recovery within and across care settings. Methods: A qualitative descriptive study. Patients and their families from an inpatient COVID-19 unit and healthcare providers from an acute or rehabilitation COVID-19 unit were interviewed. Results: A total of 27 participants were interviewed. Three major themes were identified: 1) The perceived quality and pace of COVID-19 care improved from acute care to inpatient rehabilitation; 2) Care transitions were especially distressing; and 3) Recovery from COVID-19 stagnated in the community. Conclusion: Inpatient rehabilitation was viewed as higher quality due to the slower paced care. Care transitions were distressing for stakeholders and enhanced integration between acute and rehabilitation care were suggested to improve patient handover. A lack of rehabilitation access led to recovery stagnating for patients discharged to the community. Telerehab may improve the transition to home and ensure access to adequate rehabilitation and support in the community

Visual filtering in persons with Down syndrome

A forced-choice reaction time (RT) task was used to examine the efficiency of visual filtering (the inhibition of processing of irrelevant stimuli) and the concomitant ability to narrow the focus of the attentional lens in persons with Down syndrome (n = 10) and children of average intelligence (n = 13) matched for mental age (MA) (average MA = approximately 5.7 years). Conditions varied with regard to the presence or absence of distractors and their proximity to a target stimulus, and the presence or absence of a visual window within which the target stimulus was presented. Although the study yielded no significant results due to a lack of power, the mean correct reaction times (RTs) indicate that both the adults with Down syndrome and the typically developing children were less efficient at filtering close distractors as compared to far distractors or no distractors. As well, the results suggest that the presence of the visual window failed to facilitate performance in both groups. Further investigation is warranted to determine the status of visual filtering in persons with Down syndrome relative to their level of functioning at an MA level of approximately 5 years, a period that is critical in the development of attentional processes

The Implementation of Patient Navigation Programs for Adults with Complex Needs: A Scoping Review Protocol

Patient Navigation Scoping Revie