'Safety is about partnership': Safety through the lens of patients and caregivers.

INTRODUCTION: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. METHODS: This is a qualitative descriptive study utilizing focus groups and one-to-one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. FINDINGS: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. CONCLUSIONS: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. PATIENT OR PUBLIC CONTRIBUTIONS: An advisory group guided the research and was co-chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day-to-day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives.

Patient and Caregiver Engagement in an Era of COVID-19: What Did We Learn and How Do We Move Forward?

Patient and caregiver engagement is a core component of high-quality healthcare systems. The COVID-19 pandemic revealed to us the fragility of patient and family engagement that was not as firmly rooted in the health system as expected. In this paper, we reflect on case examples from healthcare organizations across Canada where pivots and adaptations were made to patient engagement activities. We share core enablers of engagement in times of high system stress, drawing on illustrative examples. We then synthesize key learnings in relation to existing literature and conclude with reflective questions as we orient the work of engagement into the future.

Beyond the Crisis: Transforming Health Systems Through Community Engagement.

How can we effectively partner during crises? How can partnership with communities, patients, caregivers, providers and leaders be sustained and even evolve during difficult times? The opening paper of this special issue (Kuluski et al. 2024) probed these questions. The six response papers in this issue emphasized engagement that moves from partnership with individuals and communities to efforts that are led by communities; trauma-informed approaches at an individual and organizational level; and shed light on the interdependency of culture and leadership. By broadening our engagement efforts with communities, we are more apt to co-produce improvements in care that also address the social determinants of health.

Mapping the evidence on dementia care pathways - A scoping review.

BACKGROUND: One way of standardizing practice and improving patient safety is by introducing clinical care pathways; however, such pathways are typically geared towards assisting clinicians and healthcare organizations with evidence-based practice. Many dementia care pathways exist with no agreed-upon version of a care pathway and with little data on experiences about their use or outcomes. The objectives of the review were: (1) to identify the dementia care pathway's purpose, methods used to deploy the pathway, and expected user types; (2) to identify the care pathway's core components, expected outcomes, and implications for persons with dementia and their care partners; and (3) determine the extent of involvement by persons with dementia and/or their care partners in developing, implementing, and evaluating the care pathways. METHODS: We systematically searched six literature databases for published literature in the English language in September 2023 utilizing Arskey and O'Malley's scoping review framework. RESULTS: The findings from the dementia care pathways (n = 13) demonstrated assistance in dementia diagnostic and management practices for clinicians and offered structured care processes in clinical settings. For this reason, these pathways emphasized assessment and interventional post-diagnostic support, with less emphasis on community-based integrated dementia care. CONCLUSION: Future dementia care pathway development can seek the involvement of persons with dementia and care partners in designing, implementing and evaluating such pathways, ensuring that outcome measures properly reflect the impact on persons with lived dementia experience and their care partners.

Commentary: Engagement for Research and Quality Improvement - More Than Just Words.

We reflect on the paper from Hahn-Goldberg et al. (2024) who shared key learnings from a pan-Canadian quality improvement (QI) and patient engagement care transition initiative called Bridge-to-Home. In considering the approach and outcomes presented in their paper, we have generated reflections and practical suggestions on how to amplify engagement work even further: (1) patient engagement and QI are about relationships; (2) seamlessly implementing complex interventions across siloed organizations continues to be a challenge, which engagement alone cannot solve; (3) it is time for a paradigm shift; (4) QI is about human behaviour change and is inherently messy; and (5) embedding fulsome evaluation of engagement is essential.

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Co-design for stroke intervention development: Results of a scoping review.

BACKGROUND: Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers. MATERIALS AND METHODS: A scoping review informed by Joanna Briggs Institute and Arksey & O'Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively. RESULTS: Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term 'co-design.' Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described. CONCLUSIONS: Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.

"I think we did the best that we could in the space:" A qualitative study exploring individuals' experiences with three unconventional environments for patients with a delayed hospital discharge.

BACKGROUND: Given growing hospital capacity pressures, persistent delayed discharges, and ongoing efforts to improve patient flow, the use of unconventional environments (newly created or repurposed areas for patient care) is becoming increasingly common. Despite this, little is known about individuals' experiences in providing or receiving care in these environments. OBJECTIVES: The objectives of this study were to: (1) describe the characteristics of three unconventional environments used to care for patients experiencing a delayed discharge, and (2) explore individuals' experiences with the three unconventional environments. METHODS: This was a multi-method qualitative study of three unconventional environments in Ontario, Canada. Data were collected through semi-structured interviews and observations. Participants included patients, caregivers, healthcare providers, and clinical managers who had experience with delayed discharges. In-person observations of two environments were conducted. Interviews were transcribed and notes from the observations were recorded. Data were coded and analyzed thematically. RESULTS: Twenty-nine individuals participated. Three themes were identified for unconventional environments: (1) implications on the physical safety of patients; (2) implications on staffing models and continuity of care; and, (3) implications on team interactions and patient care. Participants discussed how the physical set-up of some unconventional spaces was not conducive to patient needs, especially those with cognitive impairment. Limited space made it difficult to maintain privacy and develop social relationships. However, the close proximity of team members allowed for more focused collaborations regarding patient care and contributed to staff fulfilment. A smaller, consistent care team and access to onsite physicians seemed to foster improved continuity of care. CONCLUSIONS: There is potential to learn from multi-stakeholder perspectives in unconventional environments to improve experiences and optimize patient care. Key considerations include keeping hallways and patient rooms clear, having communal spaces for activities and socialization, co-locating team members to improve interactions and access to resources, and ensuring a consistent care team.

Reconceptualizing Patient Safety Beyond Harm: Insights From a Mixed-Methods Qualitative Inquiry.

BACKGROUND: Although patients' and care partners' perspectives on patient safety can guide health care learning and improvements, this information remains underutilized. Efforts to leverage this valuable data require challenging the narrow focus of safety as the absence of harm. PURPOSE: The purpose of this study was to gain a broader insight into how patients and care partners perceive and experience safety. METHODS: We used a mixed-methods approach that included a literature review and interviews and focus groups with patients, care partners, and health care providers. An emergent coding schema was developed from triangulation of the 2 data sets. RESULTS: Two core themes-feeling unsafe and feeling safe-emerged that collectively represent a broader view of safety. CONCLUSION: Knowledge from patients and care partners about feeling unsafe and safe needs to inform efforts to mitigate harm and promote safety, well-being, and positive outcomes and experiences.

Long-term care transitions during a global pandemic: Planning and decision-making of residents, care partners, and health professionals in Ontario, Canada.

The COVID-19 pandemic appears to have shifted the care trajectories of many residents and care partners in Ontario who considered leaving LTC to live in the community for a portion or the duration of the pandemic. This type of care transition-from LTC to home care-was highly uncommon prior to the pandemic, therefore we know relatively little about the planning and decision-making involved. The aim of this study was to describe who was involved in LTC to home care transitions in Ontario during the COVID-19 pandemic, to what extent, and the factors that guided their decision-making. A qualitative description study involving semi-structured interviews with 32 residents, care partners and health professionals was conducted. Transition decisions were largely made by care partners, with varied input from residents or health professionals. Stakeholders considered seven factors, previously identified in a scoping review, when making their transition decisions: (a) institutional priorities and requirements; (b) resources; (c) knowledge; (d) risk; (e) group structure and dynamic; (f) health and support needs; and (g) personality preferences and beliefs. Participants' emotional responses to the pandemic also influenced the perceived need to pursue a care transition. The findings of this research provide insights towards the planning required to support LTC to home care transitions, and the many challenges that arise during decision-making.

Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process.

BACKGROUND: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. OBJECTIVE: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. METHODS: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. RESULTS: The project has been funded by the Canadian Institutes of Health Research. CONCLUSIONS: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50463.

Maximizing the value of patient and public involvement in the digital health co-design process: A qualitative descriptive study with design leaders and patient-public partners.

Digital health interventions have enormous potential to support patients and the public in achieving their health goals. Nonetheless, many digital health interventions are failing to effectively engage patients and the public. One solution that has been proposed is to directly involve patients and the public in the design process of these digital health interventions. Although there is consensus that involving patients and the public in collaborative design is valuable, design teams have little guidance on how to maximize the value of their collaborative design work. The main objective of this study was to understand how the value of patient and public involvement in digital health design can be maximized, from the perspective of design leaders and patient-public partners. Using a qualitative descriptive methodology, we conducted semi-structured interviews with 19 design leaders and 9 patient-public partners. Interviewees agreed that involving patients and the public was valuable, however, they questioned if current collaborative methods were optimized to ensure maximal value. Interviewees suggested that patient and public collaborative design can add value through four different mechanisms: (1) by allowing the design process to be an empowering intervention itself, (2) by ensuring that the digital health intervention will be effectively engaging for users, (3) by ensuring that the digital health intervention will be seamlessly implemented in practice, and (4) by allowing patient-public collaborations extend beyond the initial product design. Overall, interviewees emphasized that although collaborative design has historically focused on improving the digital health product itself, patients and the public have crucial insights on implementation planning as well as how collaborative design can be used as its own empowering intervention. The results of this paper provide clarity about the ways that patient and public collaborative design can be made more valuable. Digital health design teams can use these results to be more intentional about their collaborative design approaches.

Understanding the connection between hospital goals and patient and family engagement: A scoping review.

The person-centered care movement has influenced hospitals to make patient and family engagement (PE) an explicit commitment in their strategic plans. This is often reflected in mission, vision, and value (MVV) statements, which are organizational artifacts intended to influence the attitudes, beliefs, and actions of hospital teams and employees because of their saliency in organizational documents and communications. Previous research has found that organizational goals for PE, like those articulated in MVV statements, can lead to effective and meaningful PE. However, a deeper understanding of how and under which circumstances MVV statements encourage and promote PE practices is needed. A scoping review was conducted to understand the connection between hospital PE goals (such as MVV statements) and PE processes and practices. The research question was: what is known about how hospital MVV statements relate to PE processes and activities? Following Arksey and O'Malley's scoping review approach, 27 articles were identified as relevant to the research question. These articles revealed five strategies that help realize hospital PE goals: communicating organizational goals; aligning documents that convey organizational goals; aligning organizational processes to support PE; providing employees with resources and support; and motivating and empowering employees to integrate PE into their work. We discuss the implications of misalignment between hospital goals and practices, which reduce team and individual motivation toward hospital PE goals.

"We have to save him": a qualitative study on care transition decisions in Ontario's long-term care settings during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has contributed to a global crisis in long-term care (LTC) with devastating consequences for residents, families and health professionals. In Ontario, Canada the severity of this crisis has prompted some care partners to move residents home with them for the duration or a portion of the pandemic. This type of care transition, from LTC to home care, was highly unusual pre-pandemic and arguably suboptimal for adults with complex needs. This paper presents the findings of a qualitative study to better understand how residents, care partners, and health professionals made care transition decisions in Ontario's LTC settings during the pandemic. METHODS: Semi-structured interviews were conducted with 32 residents, care partners and health professionals who considered, supported or pursued a care transition in a LTC setting in Ontario during the pandemic. Crisis Decision Theory was used to structure the analysis. RESULTS: The results highlighted significant individual and group differences in how participants assessed the severity of the crisis and evaluated response options. Key factors that had an impact on decision trajectories included the individuals' emotional responses to the pandemic, personal identities and available resources. CONCLUSIONS: The findings from this study offer novel important insights regarding how individuals and groups perceive and respond to crisis events.

The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping.

BACKGROUND: Care transitions have a significant impact on patient health outcomes and care experience. However, there is limited research on how clients receiving care in the home care sector experience the hospital-to-home transition. An essential strategy for improving client care and experience is through client engagement efforts. The study's aim was to provide insight into the care transition experiences and perspectives of home care clients and caregivers of those receiving home care who experienced a hospital admission and returned to home care services by thematically and illustratively mapping their collective journey. METHODS: This study applied a qualitative descriptive exploratory design using a patient journey mapping approach. Home care clients and their caregivers with a recent experience of a hospital discharge back to the community were recruited. A conventional inductive approach to analysis enabled the identification of categories and a collective patient journey map. Follow-up interviews supported the validation of the map. RESULTS: Seven participants (five clients and two caregivers) participated in 11 interviews. Participants contributed to the production of a collective journey map and the following four categories and themes: (1) Touchpoints as interactions with the health system; Life is changing; (2) Pain points as barriers in the health system: Sensing nobody is listening and Trying to find a good fit; (3) Facilitators to positive care transitions: Developing relationships and gaining some continuity and Trying to advocate, and (4) Emotional impact: Having only so much emotional capacity. CONCLUSIONS: The patient journey map enabled a collective illustration of the care transition depicted in touchpoints, pain points, enablers, and feelings experienced by home care recipients and their caregivers. Patient journey mapping offers an opportunity to acknowledge home care clients and their caregivers as critical to quality care delivery across the continuum.

Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems.

Globally, health systems are increasingly striving to deliver evidence based care that improves patients', caregivers' and communities' health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experiences-experiences accessing and/or supporting someone who accesses healthcare services-are now viewed by many systems as expertise and an important part of understanding and improving care quality. Patients', caregivers' and communities' participation in health systems can range from healthcare organizational design to being members of research teams. Unfortunately, this involvement greatly varies and these groups are often sidelined to the start of research projects, with little to no role in later project stages. Additionally, some systems may forgo direct engagement, focusing solely on patient data collection and analysis. Given the benefits of active patient, caregiver and community participation in health systems on patient health outcomes, systems have begun identifying different approaches to studying and applying findings of patient, caregiver and community informed care initiatives in a rapid and consistent fashion. The learning health system (LHS) is one approach that can foster deeper and continuous engagement of these groups in health systems change. This approach embeds research into health systems, continuously learning from data and translating findings into healthcare practices in real time. Here, ongoing patient, caregiver and community involvement is considered vital for a well functioning LHS. Despite their importance, great variability exists as to what their involvement means in practice. This commentary examines the current state of patient, caregiver and community participation in the LHS. In particular, gaps in and need for resources to support their knowledge of the LHS are discussed. We conclude by recommending several factors health systems must consider in order to increase participation in their LHS. Systems must: (1) assess patients', caregivers and community understanding of how their feedback are used in the LHS and how collected data are used to inform patient care; (2) review the level and extent of these groups' participation in health system improvement activities; and (3) examine whether health systems have the workforce, capacity and infrastructure to nurture continuous and impactful engagement.

Patients, caregivers and communities have started taking more hands on roles in health systems, partnering with healthcare providers and researchers to impact the ways healthcare services are made and delivered. Their input has been shown to improve patient health. While many systems are working to include patients, caregivers and communities in helping improve healthcare, this work often focuses on collecting and analyzing patient data without using it in a timely way. Also, the level of their input can vary and is often limited to the start of a research project. As more health systems recognize the importance of their input in creating better healthcare, some are using different approaches to make this feedback a constant part of their systems. The learning health system (LHS) is one approach that can support deeper and ongoing patient, caregiver and community involvement in health system change. In the LHS, projects are frequently reviewed and feedback used to help health systems make changes as they go. While their involvement is critical to a well functioning LHS, it is unclear what this involvement looks like. This commentary reviews the current state of this involvement. We offer readers a way forward and suggestions to help them determine if they are actively including patients, caregivers and communities in their LHS. Suggestions include reviewing: (1) the ways data are collected and used; (2) how patients, caregivers and communities are involved in health system improvement efforts; and (3) whether or not systems have the tools needed to frequently partner with these groups.

An interrupted time series study using administrative health data to examine the impact of the COVID-19 pandemic on alternate care level acute hospitalizations in Ontario, Canada.

BACKGROUND: Many health systems struggle with delayed discharges (known as alternate level of care [ALC] in Canada). Our objectives were to describe and compare patient and hospitalization characteristics by ALC status, and to examine the impact of the initial period of the COVID-19 pandemic on ALC rates in Ontario, Canada. METHODS: We conducted an interrupted time series using linked administrative data for acute care hospital discharges in Ontario between Feb. 28, 2018, and Nov. 30, 2020. We measured the monthly ALC rate among discharges before and after the onset of the COVID-19 pandemic (Mar. 1, 2020). We used interrupted time series regressions to examine the association between the onset of the pandemic and average ALC monthly rates. RESULTS: We identified no meaningful differences in patient and admission characteristics, irrespective of time; however, differences were identified by ALC status. The overall average monthly rate of ALC discharges before the COVID-19 pandemic was 4.9% and after the onset of the pandemic was 5.0%. These discharges dropped to 4.3% (n = 3558) in March 2020 but then rebounded to their peak of 5.8% (n = 3915). There was no significant change in the average level of ALC rates per month after the onset of the pandemic (increase of 0.36% average per month, 95% confidence interval [CI] -0.11% to 0.83%) or monthly rate of change (slope) after the onset of the pandemic (-0.08%, 95% CI -0.15 to 0). INTERPRETATION: We identified a continued high rate of hospital discharges with an ALC component despite the considerable efforts in hospital to reduce hospital occupancy during the COVID-19 pandemic. Future research should examine why ALC rates remain high despite hospital efforts.

Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis.

BACKGROUND: There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research. METHODS: A scoping review of three databases and thematic analysis were conducted. Sixty-one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included. RESULTS: Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed. CONCLUSION: Engaging PWLE-from consultation to co-creation throughout the research cycle-is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science. PATIENT OR PUBLIC CONTRIBUTION: PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write-up phase.

"Seeing the day-to-day situation": A grounded theory of how persons living with dementia and their family caregivers experience the hospital to home transition and beyond.

Most older adults with dementia live at home, they primarily receive care provided by family members and friends. Given the decline in memory and other cognitive functions, there to be higher rates of touch points with the health system for those living with dementia. Evidence has shown that these care transitions mark critical changes in the lives of older people, including significant and far-reaching changes to family caregivers. Therefore, it is imperative that complex social processes enacted by persons with dementia and their family caregivers in response to care transitions be more thoroughly explained. This study took place in Canada between 2019 and 2021 and adopted a constructivist grounded theory design. Twenty-five people participated in 20 interviews: 4 people living with dementia and 21 caregivers. We report on six concepts grounded in the data that are linked to a core process engaged in by the participants throughout the care transition journey and beyond: Seeing the day-to-day situation. This study contributes theoretically to the care transition literature by making explicit not only the visible work done by patient-caregiver days during the care transition journey, but it has also illuminated the ongoing processes engaged in by caregivers who are navigating the health and social care systems with their family member living with dementia. During the care transition, and beyond, the caregiver is forced to take over and connect the dots. Even though the caring experience is fraught with traumatic and very challenging situations, for many caregivers, they rise above and can reconcile their suffering with a desire to help their family member and others who may be going through similar experiences. This theory provides a foundation on which to develop theory-driven interventions that focus on support the patient-caregiver dyad during care transitions.

Making Sense of Theories, Models, and Frameworks in Digital Health Behavior Change Design: Qualitative Descriptive Study.

BACKGROUND: Digital health interventions are increasingly being designed to support health behaviors. Although digital health interventions informed by behavioral science theories, models, and frameworks (TMFs) are more likely to be effective than those designed without them, design teams often struggle to use these evidence-informed tools. Until now, little work has been done to clarify the ways in which behavioral science TMFs can add value to digital health design. OBJECTIVE: The aim of this study was to better understand how digital health design leaders select and use TMFs in design practice. The questions that were addressed included how do design leaders perceive the value of TMFs in digital health design, what considerations do design leaders make when selecting and applying TMFs, and what do design leaders think is needed in the future to advance the utility of TMFs in digital health design? METHODS: This study used a qualitative description design to understand the experiences and perspectives of digital health design leaders. The participants were identified through purposive and snowball sampling. Semistructured interviews were conducted via Zoom software. Interviews were audio-recorded and transcribed using Otter.ai software. Furthermore, 3 researchers coded a sample of interview transcripts and confirmed the coding strategy. One researcher completed the qualitative analysis using a codebook thematic analysis approach. RESULTS: Design leaders had mixed opinions on the value of behavioral science TMFs in digital health design. Leaders suggested that TMFs added the most value when viewed as a starting point rather than the final destination for evidence-informed design. Specifically, these tools added value when they acted as a gateway drug to behavioral science, supported health behavior conceptualization, were balanced with expert knowledge and user-centered design principles, were complementary to existing design methods, and supported both individual- and systems-level thinking. Design leaders also felt that there was a considerable nuance in selecting the most value-adding TMFs. Considerations should be made regarding their source, appropriateness, complexity, accessibility, adaptability, evidence base, purpose, influence, audience, fit with team expertise, fit with team culture, and fit with external pressures. Design leaders suggested multiple opportunities to advance the use of TMFs. These included improving TMF reporting, design, and accessibility, as well as improving design teams' capacity to use TMFs appropriately in practice. CONCLUSIONS: When designing a digital health behavior change intervention, using TMFs can help design teams to systematically integrate behavioral insights. The future of digital health behavior change design demands an easier way for designers to integrate evidence-based TMFs into practice.