Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada.

INTRODUCTION: During the pandemic many Canadian hospitals made significant changes to their 'open family presence' and 'visitor policies' to reduce the spread of COVID-19 by instituting restrictive or 'zero visiting' policies in healthcare facilities. These policies have the potential to create great hardship, anxiety and stress for patients, families, caregivers and frontline healthcare providers (HCPs); along with concerns about the quality and safety of patient care. The presence of family members and other caregivers as essential partners in care is an explicit expression of the philosophy of patient- and family-centred care (PFCC) in action. The purpose of this study is to increase our understanding of how changes to family presence and visiting policies and practices during the COVID-19 pandemic have impacted patients, family caregivers and frontline healthcare providers (HCPs) in acute care hospitals. METHODS: A total of 38 in-depth semi-structured interviews were conducted with patients, family caregivers and HCPs in Canadian provinces who had experience with visiting policies in acute care settings during the pandemic. COVID patients, and the caregivers of COVID patients, were excluded from this study. A maximum variation sampling strategy was used to guide the selection and recruitment of patients, family caregivers and HCPs, based on our interest in gaining a diversity of perspectives and experiences. RESULTS: Many patients, family caregivers, and HCPs view family caregiver presence as integral to PFCC, describing the essential roles played by family caregivers prior to the pandemic. There were commonalities across all three groups with respect to their perspectives on the impacts of restrictive visiting policies on patients, family caregivers and HCPs. They fell into four broad integrated categories: (1) emotional and mental health; (2) communication and advocacy; (3) safety and quality of care; and (4) PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. Recommendations for pandemic visiting policies were also identified. CONCLUSIONS: The findings from this study highlighted several impacts of restrictive family caregiver presence or visiting policies implemented during COVID-19 on patients, family caregivers and HCPs in acute healthcare settings across Canada. Participants emphasized that there is no "one-size-fits-all" caregiver presence policy that will address all patient needs. To be consistent with the practice of PFCC, patients and family caregivers are welcomed as part of the healthcare team in ways that work for them, demonstrating that flexibility in family presence and visiting policies is essential.

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems.

INTRODUCTION: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. METHODS: The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design. RESULTS: The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. CONCLUSION: The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. PATIENT CONTRIBUTION: Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.

A qualitative study exploring how patient engagement activities were sustained or adapted in Canadian healthcare organizations during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic caused disruptions across healthcare systems globally exposing the precarious state of patient engagement across all levels of healthcare. While evidence is emerging to describe how engagement was affected across various settings, insights about how some organizations at the policy and practice level of healthcare were able to sustain or adapt patient engagement activities is lacking. OBJECTIVE: This paper addresses the following research question: "How were healthcare, government, and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?" METHODS: A qualitative descriptive study was conducted to understand how patient engagement activities were maintained or adapted in a variety of healthcare, government, and patient partner organizations in Canada throughout the pandemic. This analysis was part of a larger qualitative, multiple case study where one-to-one interviews were conducted with organizational leaders, managers and patient partners. RESULTS: The following themes were identified as key aspects of maintaining or adapting patient engagement activities: 1) having an embedded organizational culture of patient engagement; 2) adapting patient engagement activities to focus on COVID-19 response efforts; 3) having patient partners who exercised leadership and advocacy to support patient care and experiences during the pandemic; and 4) leveraging virtual technology as a communication tool to engage patient partners. CONCLUSION: This paper highlights important insights that may be useful to other health care organizations on how to sustain or adapt patient engagement activities during a healthcare crisis. Having patient engagement embedded within an organization's culture supported by, but not limited to, infrastructure, resources, investments in dedicated staff and patient partner leadership, and communication strategies and tools enabled continued patient engagement activities during the pandemic.

Developing Relationships on a Shared Path to Reconciliation: The Core of Health Transformation and Safe Care for Indigenous People.

This article describes the experience of a pan-Canadian health organization that led a quality improvement collaborative focused on suicide prevention and life promotion with Indigenous communities in northern and remote regions of Canada. Working in partnership with a Guidance Group, it became clear that working in a relational way that is culturally safe and acknowledges "two-eyed seeing" helps to create an ethical space in which open dialogue and collaboration can occur. Relational work enabled the improvement teams in the Promoting Life Together Collaborative to co-develop life promotion activities within their communities. The primacy of building relationships is at the core of reconciliation with Indigenous peoples and is a key enabler of system transformation required to support the health and wellness of Indigenous communities across Canada.

Patient and family engagement in infection prevention in the context of the COVID-19 pandemic: defining a consensus framework using the Q methodology - NOSO-COVID study protocol.

INTRODUCTION: Healthcare-associated infections are an important patient safety concern, especially in the context of the COVID-19 pandemic. Infection prevention and control implemented in healthcare settings are largely focused on the practices of healthcare professionals. Patient and family engagement is also recognised as an important patient safety strategy. The extent to which patients and families can be engaged, their specific roles and the strategies that support their engagement in infection prevention remain unclear. The overarching objective of the proposed study is to explore how patients and families can effectively be engaged in infection prevention by developing a consensus framework with key stakeholders. DESIGN AND METHODS: The proposed study is based on a cross-sectional exploratory study at one of the largest university hospitals in North America (Montreal, Canada). The targeted population is all healthcare professionals, managers and other non-clinical staff members who work on clinical units, and the in-patients and their families. The study is based on Q methodology that takes advantage of both quantitative and qualitative methods to identify the consensus among the various stakeholders. This exploratory Q research approach will provide a structured way to elicit the stakeholders' perspectives on patient and family engagement in infection prevention. ETHICS AND DISSEMINATION: The research ethics board approved this study. The research team plans to disseminate the findings through different channels of communication targeting healthcare professionals, managers in healthcare settings, and patients and family caregivers. The findings will also be disseminated through peer-reviewed journals in healthcare management and in quality and safety improvement.

Caregivers at the Heart of Reimagined Long-Term Care Delivery in Canada: Beyond the Pandemic.

The dominant narrative through the pandemic focused on the perils associated with the transmission of COVID-19. This led to restrictive policies in long-term care that prevented family caregivers from being physically present to participate in their loved ones' care. There is growing evidence that such policies resulted in harm to residents, family members and staff. The path forward highlights the need for balanced policies and practices to ensure that compassionate, person-centred and partnered care is not lost, whether in times of calm or crisis.

Advancing Family Presence Policies and Practices in the Canadian Health and Care Context: COVID-19 and Beyond.

With the onset of the COVID-19 pandemic, restrictive visitor policies have curtailed the ability of family caregivers to be present to partner in the care of loved ones. Building on the success of the "Better Together" campaign, Healthcare Excellence Canada - the newly amalgamated organization of the Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute - has co-developed policy guidance and "Essential Together" programming that recognizes the significant role of essential care partners. This work aims to support the safe reintegration of essential care partners into health and care organizations across Canada during the pandemic and beyond.

Metaphors of organizations in patient involvement programs: connections and contradictions.

PURPOSE: In this paper, we contribute to the theorizing of patient involvement in organizational improvement by exploring concepts of "learning from patients" as mechanisms of organizational change. Using the concept of metaphor as a theoretical bridge, we analyse interview data (n = 20) from participants in patient engagement activities from two case study organizations in Ontario, Canada. Inspired by classic organizational scholars, we ask "what is the organization that it might learn from patients?" DESIGN/METHODOLOGY/APPROACH: Patient involvement activities are used as part of quality improvement efforts in healthcare organizations worldwide. One fundamental assumption underpinning this activity is the notion that organizations must "learn from patients" in order to enact positive organizational change. Despite this emphasis on learning, there is a paucity of research that theorizes learning or connects concepts of learning to organizational change within the domain of patient involvement. FINDINGS: Through our analysis, we interpret a range of metaphors of the organization, including organizations as (1) power and politics, (2) systems and (3) narratives. Through these metaphors, we display a range of possibilities for interpreting how organizations might learn from patients and associated implications for organizational change. ORIGINALITY/VALUE: This analysis has implications for how the framing of the organization matters for concepts of learning in patient engagement activities and how misalignments might stymie engagement efforts. We argue that the concept and commitment to "learning from patients" would be enriched by further engagement with the sociology of knowledge and critical concepts from theories of organizational learning.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

BACKGROUND: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. OBJECTIVE: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. METHODS: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. DISCUSSION: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

Supporting Patient and Family Engagement for Healthcare Improvement: Reflections on "Engagement-Capable Environments" in Pan-Canadian Learning Collaboratives.

Although the involvement of patients in their care has been central to the concept of patient-centred care, patient engagement in the realms of health professional education, policy making, governance, research and healthcare improvement has been rapidly evolving in Canada in the past decade. The Canadian Foundation for Healthcare Improvement (CFHI) has supported healthcare organizations across Canada to meaningfully partner with patients in quality improvement and system redesign efforts. This article describes CFHI initiatives to enhance patient engagement efforts across Canada and the lessons learned in the context of "engagement-capable environments" and offers reflections for the future of patient engagement in Canada.

Growing a Healthy Ecosystem for Patient and Citizen Partnerships.

Patient and citizen engagement is taking root in a number of healthcare organizations. These initiatives show promising results but require a supportive environment to bring systemic and sustainable impacts. In this synthesis article, we propose an ecosystemic perspective on engagement in health, outlining key elements at the individual, organizational and systemic levels supporting reciprocal and effective relationships among all partners to provide conditions for the co-production of health and care. We argue that growing a healthy engagement ecosystem requires: (1) building local and national "hubs" to facilitate learning and capacity building across engagement domains, populations and contexts; (2) supporting reciprocal partnerships based on co-leadership; and (3) strengthening capacities for research, evaluation and co-training of all partners to support reflective engagement practices that bring about effective change.

Engaging patients to improve quality of care: a systematic review.

BACKGROUND: To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services. METHODS: We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients' experiences of being engaged. RESULTS: Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign-discrete products largely derived from low-level engagement (consultative unidirectional feedback)-whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients' experiences of the engagement process (n = 12; 25%). While most experiences were positive-increased self-esteem, feeling empowered, or independent-some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made. CONCLUSIONS: Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients' experiences of the engagement process and whether these outcomes translate into improved quality of care. REGISTRATION: N/A (data extraction completed prior to registration on PROSPERO).

Expanding patient engagement in quality improvement and health system redesign: Three Canadian case studies.

Healthcare organizations face growing pressures to increase patient-centred care and to involve patients more in organizational decisions. Yet many providers worry that such involvement requires additional time and resources and do not see patients as capable of contributing meaningfully to decisions. This article discusses three efforts in four organizations to engage patients in quality improvement efforts. McGill University Health Centre, Saskatoon Health Region, and Vancouver Coastal and Fraser Health Regions all engaged patients in quality improvement and system redesign initiatives that were successful in improving care processes, outcomes, and patient experience measures. Patient involvement in redesigning care may provide a way to demonstrate the value of patients' experiences and inputs into problem-solving, building support for their involvement in other areas. Further study of these cases and a broader survey of organizational experiences with patient involvement may help elucidate the factors that support greater patient engagement.

Using SBAR to communicate falls risk and management in inter-professional rehabilitation teams.

This study implemented and evaluated the adapted Situation-Background-Assessment-Recommendation (SBAR) tool for use on two inter-professional rehabilitation teams for the specific priority issue of falls prevention and management. SBAR has been widely studied in the literature, but rarely in the context of rehabilitation and beyond nurse-physician communication. In phase one, the adapted SBAR tool was implemented on two teams with a high falls incidence over a six-month period. In phase two, process and outcome evaluations were conducted in a pre-post design comparing the impact of the intervention with changes in the rest of the hospital, including the perceptions of safety culture (as measured by the Hospital Survey on Patient Safety Culture); effective team processes, using the Team Orientation Scale; and safety reporting, including falls incidence, severity and near misses. This study suggests that the adapted SBAR tool was widely and effectively used by inter-professional rehabilitation teams as part of a broader program of safety activities. Near-miss and severity of falls incidence trended downward but were inconclusive, likely due to a short time frame as well as the nature of rehabilitation, which pushes patients to the limit of their abilities. While SBAR was used in the context of falls prevention and management, it was also utilized it in a variety of other clinical and non-clinical situations such as transitions in care, as a debriefing tool and for conflict resolution. Staff found the tool useful in helping to communicate relevant and succinct information, and to "close the loop" by providing recommendations and accountabilities for action. Suggestions are provided to other organizations considering adopting the SBAR tool within their clinical settings, including the use of an implementation tool kit and video simulation for enhanced uptake.

Rehabilitation services following total joint replacement: a qualitative analysis of key processes and structures to decrease length of stay and increase surgical volumes in Ontario, Canada.

OBJECTIVES: The purpose of this study was: (1) to identify key total joint replacement (TJR) care processes and structures from acute care and rehabilitation hospitals; (2) to determine the perceived implications of practice patterns and processes on wait times, discharge planning, transitions in care, utilization of rehabilitation services, and outcomes; and (3) to understand how acute care hospitals funded for additional cases were addressing current and future rehabilitation needs. METHODS: A qualitative descriptive approach using key informant interviews was used to provide further insights and depth of understanding to current practice patterns, structures and processes of care for TJR patients. RESULTS: Twenty-three key informants from a total of 15 hospitals across Ontario participated in this project. Themes that emerged related to processes of care (e.g. patient education, preoperative services, clinical pathways), and structures that supported these processes of care (e.g. organizational supports, increased funding and resources). The results point to a number of key practices that can facilitate smooth, integrated care for TJR patients, particularly in relation to best practices to decrease length of stay and increase surgical volumes. Increased funding related to strategic priorities placed on TJRs by the provincial government was viewed as an important impetus to implement a number of these key practices. CONCLUSION: From a rehabilitation perspective, there is need for consistent funding to secure more rehabilitation services for both preoperative and post-operative management of care that allows for shorter lengths of stay and to ensure optimal outcomes.

Implementation of a safety framework in a rehabilitation hospital.

This patient safety initiative was implemented at the Toronto Rehabilitation Institute, a fully affiliated hospital of the University of Toronto that operates in-patient and outpatient facilities on five sites. A working group was created to engage the leaders and employees in defining and implementing our "ideal" safety culture. A subset of this group became the Research Team, mandated to do the "discovery work" with external groups and internal stakeholders to provide valuable input for designing the safety culture model. This involved identifying the key components required to support a safety culture, testing this model with findings from the academic literature and best in class organizations and identifying the who, what, when, where and how of each key component. Future activities will focus on the integration of safety into existing programs, initiatives and policies, seeking feedback from staff, patients and families, and evaluating the effectiveness of our intervention and the extent of the culture change.

Effectiveness of an Adapted SBAR Communication Tool for a Rehabilitation Setting.

Effective communication and teamwork have been identified in the literature as key enablers of patient safety. The SBAR (Situation-Background-Assessment-Recommendation) process has proven to be an effective communication tool in acute care settings to structure high-urgency communications, particularly between physicians and nurses; however, little is known of its effectiveness in other settings. This study evaluated the effectiveness of an adapted SBAR tool for both urgent and non-urgent situations within a rehabilitation setting. In phase 1 of this study, clinical staff, patient and family input was gathered in a focus-group format to help guide, validate and refine adaptations to the SBAR tool. In phase 2, the adapted SBAR was implemented in one interprofessional team; clinical and support staff participated in educational workshops with experiential learning to enhance their proficiency in using the SBAR process. Key champions reinforced its use within the team. In phase 3, evaluation of the effectiveness of the adapted SBAR tool focused on three main areas: staff perceptions of team communication and patient safety culture (as measured by the Agency for Healthcare Research and Quality Hospital Survey on Patient Safety Culture), patient satisfaction (as determined using the Client Perspectives on Rehabilitation Services questionnaire) and safety reporting (including incident and near-miss reporting). Findings from this study suggest that staff found the use of the adapted SBAR tool helpful in both individual and team communications, which ultimately affected perceived changes in the safety culture of the study team. There was a positive but not significant impact on patient satisfaction, likely due to a ceiling effect. Improvements were also seen in safety reporting of incidents and near misses across the organization and within the study team.

Exploration of patient safety phenomena in rehabilitation and complex continuing care.

Patient safety has been relatively unexplored in rehabilitation and complex continuing care (CCC) settings. From the perspectives of staff members, this qualitative study aimed to explore patient safety phenomena that exist within rehabilitation/CCC and to identify the characteristics of the current workplace culture that act as enablers of or barriers to patient safety. Sixty-six staff members in a large, multisite, academic rehabilitation/CCC health centre volunteered to participate in one of six interprofessional focus groups, designed to model patient care teams that exist within the clinical programs; one focus group was also conducted with support services staff. Thematic analysis revealed that rehabilitation/CCC settings present with distinct patient safety issues due to the unique and increasingly complex populations that are served, and the place of rehabilitation/CCC along the continuum of care. Enablers and barriers identified related to teamwork, culture, resources and organizational and individual responsibility. Results of this study have helped form the foundation for future patient safety initiatives within our settings, with clear emphasis on enhancing an open and just culture in which to discuss safety issues through development of improved leadership-staff relations, teamwork and communication and clearer processes and structures for accountability. The approach to addressing these issues must fit within our rehabilitation models of care.

Evaluating organizational readiness for change: a preliminary mixed-model assessment of an interprofessional rehabilitation hospital.

We conducted a Functional Organizational Readiness for Change Evaluation (FORCE) to assess the characteristics of readiness for change across two programs (N=216 employees) in an interprofessional rehabilitation hospital that was about to undergo strategic changes as part of a planned physical merger within the next two years. The study used a mixed-method approach: a quantitative survey, previously validated in a drug rehabilitation setting, followed by key informant interviews to further enlighten survey findings. Statistical analyses identified correlations between demographic variables (age, education and experience) and readiness for change, as well as the prevalence of specific organizational characteristics (motivation for change, access to resources, staff attributes, organizational climate, and exposure/ use of training opportunities) that facilitate or impede change. Findings were intended to better inform the tactics for successful implementation of upcoming initiatives. Much like assessing a patient prior to initiating a treatment, FORCE can serve as a management tool to direct the planning and implementation of changes intended to improve hospital performance.