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.

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.

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.

"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.

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.

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.

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.

Recommendations made by patients, caregivers, providers, and decision-makers to improve transitions in care for older adults with hip fracture: a qualitative study in Ontario, Canada.

BACKGROUND: Older adults frequently experience fall-related injuries, including hip fractures. Following a hip fracture, patients receive care across a number of settings and from multiple different providers. Transitions between providers and across settings have been noted as a vulnerable time, with potentially negative impacts. Currently, there is limited research on how to improve experiences with transitions in care following a hip fracture for older adults from the perspectives of those with lived experienced. The purpose of this study was to explore service recommendations made by patients, caregivers, healthcare providers, and decision-makers for improving transitions in care for older adults with hip fracture. METHODS: This descriptive qualitative study was part of a larger longitudinal qualitative multiple case study. Participants included older adults with hip fracture, caregivers supporting an individual with hip fracture, healthcare providers, and decision-makers. In-depth, semi-structured interviews were conducted with all participants, with patients and caregivers having the opportunity to participate in follow-up interviews as they transitioned out of hospital. All interviews were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: A total of 47 participants took part in 65 interviews. We identified three main categories of recommendations: (1) hospital-based recommendations; (2) community-based recommendations; and (3) cross-sectoral based recommendations. Hospital-based recommendations focused on treating patients and families with respect, improving the consistency, frequency, and comprehensiveness of communication between hospital providers and between providers and families, and increasing staffing levels. Community-based recommendations included the early identification of at-risk individuals and providing preventative and educational programs. Cross-sectoral based recommendations were grounded in enhanced system navigation through communication and care navigators, particularly within primary and community care settings. CONCLUSIONS: Our findings highlighted the central role primary care can play in providing targeted, integrated services for older adults with hip fracture. The recommendations outlined have the potential to improve experiences with care transitions for older adults with hip fracture, and thus, addressing and acting on them should be a priority.

Building integrated, adaptive and responsive healthcare systems - lessons from paramedicine in Ontario, Canada.

BACKGROUND: Being responsive and adaptive to local population needs is a key principle of integrated care, and traditional top-down approaches to health system governance are considered to be ineffective. There is need for more guidance on taking flexible, complexity-aware approaches to governance that foster integration and adaptability in the health system. Over the past two decades, paramedics in Ontario, Canada have been filling gaps in health and social services beyond their traditional mandate of emergency transport. Studying these grassroots, local programs can provide insight into how health systems can be more integrated, adaptive and responsive. METHODS: Semi-structured interviews were conducted with people involved in new, integrated models of paramedic care in Ontario. Audio recordings of interviews were transcribed and coded inductively for participants' experiences, including drivers, enablers and barriers to implementation. Thematic analysis was done to ascertain key concepts from across the dataset. RESULTS: Twenty-six participants from across Ontario's five administrative health regions participated in the study. Participants described a range of programs that included acute, urgent and preventative care driven by local relationship networks of paramedics, hospitals, primary care, social services and home care. Three themes were developed that represent participants' experiences implementing these programs in the Ontario context. The first theme, adapting and being nimble in tension with system structures, related to distributed versus central control of programs, a desire to be nimble and skepticism towards prohibitive legal and regulatory systems. The second theme, evolving and flexible professional role identity, highlighted the value and challenges of a functionally flexible workforce and interest in new roles amongst the paramedic profession. The third theme, unpredictable influences on program implementation, identified events such as the COVID-19 pandemic and changing government priorities as accelerating, redirecting or inhibiting local program development. CONCLUSIONS: The findings of this study add to the discourse on governing health systems towards being more integrated, adaptive and responsive to population needs. Governance strategies include: supporting networks of local organizational relationships; considering the role of a functionally flexible health workforce; promoting a shared vision and framework for collaboration; and enabling distributed, local control and experimentation.

A qualitative study exploring hospital-based team dynamics in discharge planning for patients experiencing delayed care transitions in Ontario, Canada.

BACKGROUND: In attempt to improve continuity of patient care and reduce length of stay, hospitals have placed an increased focus on reducing delayed discharges through discharge planning. Several benefits and challenges to team-based approaches for discharge planning have been identified. Despite this, professional hierarchies and power dynamics are common challenges experienced by healthcare providers who are trying to work as a team when dealing with delayed discharges. The objective of this study was to explore what was working well with formal care team-based discharge processes, as well as challenges experienced, in order to outline how teams can function to better support transitions for patients experiencing a delayed discharge.  METHODS: We conducted a descriptive qualitative study with hospital-based healthcare providers, managers and organizational leaders who had experience with delayed discharges. Participants were recruited from two diverse health regions in Ontario, Canada. In-depth, semi-structured interviews were conducted in-person, by telephone or teleconference between December 2019 and October 2020. All interviews were recorded and transcribed. A codebook was developed by the research team and applied to all transcripts. Data were analyzed inductively, as well as deductively through directed content analysis. RESULTS: We organized our findings into three main categories - (1) collaboration with physicians makes a difference; (2) leadership should meaningfully engage with frontline providers and (3) partnerships across sectors are critical. Regular physician engagement, as equal members of the team, was recommended to improve consistent communication, relationship building between providers, accessibility, and in-person communication. Participants highlighted the need for a dedicated senior leader who ensured members of the team were treated as equals and advocated for the team. Improved partnerships across sectors included the enhanced integration of community-based providers into discharge planning by placing more focus on collaborative practice, combined discharge planning meetings, and having embedded and physically accessible care coordinators in the hospital. CONCLUSIONS: Team-based approaches for delayed discharge can offer benefits. However, to optimize how teams function in supporting these processes, it is important to consistently collaborate with physicians, ensure senior leadership engage with and seek feedback from frontline providers through co-design, and actively integrate the community sector in discharge planning.

Student-senior isolation prevention partnership: a Canada-wide programme to mitigate social exclusion during the COVID-19 pandemic.

Amidst the pandemic, Canada has taken critical steps to curb the transmission of the 2019 novel coronavirus disease (COVID-19). A key intervention has been physical distancing. Although physical distancing may protect older adults and other at-risk groups from COVID-19, research suggests quarantine and isolation may worsen mental health. Among older adults, social exclusion and social safety nets are social determinants of health (SDOH) that may be uniquely affected by the COVID-19 physical distancing measures. Health promotion programmes designed to reduce social exclusion and enhance social safety nets are one way to mitigate the potential mental health implications of this pandemic. The Student-Senior Isolation Prevention Partnership (SSIPP) is a student-led, community health promotion initiative that has scaled into a nation-wide effort to improve social connection among older adults. This initiative began with in-person visits and transformed into a tele-intervention guided by health promotion principles due to COVID-19. SSIPP continued to target the SDOH of social exclusion and social safety nets by pairing student volunteers with older adults to engage in weekly phone- and video-based interactions. Informed by the community partnership model by Best et al., SSIPP is built on the three orientations of empowerment, behaviour and organization, which are achieved through cross-disciplinary collaboration. This article reviews the importance of the adaptability of health promotion programmes, such as SSIPP during a pandemic, placing an emphasis on the lessons learned and future steps.

A common way to slow the spread of the 2019 novel coronavirus disease (COVID-19) is for people to keep their distance from one another. This has led to isolation and loneliness, especially for older adults. The Student­Senior Isolation Prevention Partnership (SSIPP) is a programme developed by students and physicians in Toronto, Canada. The programme pairs student volunteers with older adults for weekly social interactions. These interactions were in-person before COVID-19. Following the physical distancing recommendations as a result of COVID-19, the programme quickly adapted to use phone and video calls instead. Establishing and leveraging key partnerships, identifying a window of opportunity, assessing community-specific needs and creating national manuals and protocols were key factors in facilitating simultaneous expansion across Canada. This article addresses the importance of programmes like SSIPP in preventing negative health impacts associated with loneliness and isolation. The authors also discuss the adaptability of SSIPP, lessons learned for future pandemic efforts and next steps.

In Pursuit of Better Care Transitions: Lessons Learned from a Co-Designed Project.

In this commentary, we reflect on our experience of co-designing an intervention to address challenges due to delayed hospital discharge (known as alternate level of care in Canada). Through a series of focus groups and co-design sessions, we identified common challenges with delayed discharge (including a lack of services while waiting for discharge and poor communication with the care team). In co-designing service improvements, we (1) amplified the voices of patients and caregivers, which helped them feel unified in their experience and (2) developed tools that aim to improve patient, caregiver and provider experiences. In this commentary, we reflect on these impacts along with the key lessons learned.

Applying the principles of adaptive leadership to person-centred care for people with complex care needs: Considerations for care providers, patients, caregivers and organizations.

BACKGROUND: Health systems in many countries see person-centred care as a critical component of high-quality care but many struggle to operationalize it in practice. We argue that models such as adaptive leadership can be a critical lever to support person-centred care, particularly for people who have multiple complex care needs. OBJECTIVE: To reflect on two concepts: person-centred care and adaptive leadership and share how adaptive leadership can advance person-centred care at the front-line care delivery level and the organizational level. FINDINGS: The defining feature of adaptive leadership is the separation of technical solutions (ie applying existing knowledge and techniques to problems) from adaptive solutions (ie requiring shifts in how people work together, not just what they do). Addressing adaptive challenges requires identifying key assumptions that may limit motivations for change and the behaviours influenced by these assumptions. Thus, effective care for patients, particularly those with multiple complex care needs, often entails helping care providers and patients to examine their relationships and behaviours not just identifying technical solutions. Addressing adaptive challenges also requires a supportive and enabling organizational context. We provide illustrative examples of how adaptive leadership principles can be applied at both the front line of care and the organization level in advancing person-centred care delivery. CONCLUSIONS: Advancing person-centred care at both the clinical and organizational levels requires a growth mindset, a willingness to try (and fail) and try again, comfort in being uncomfortable and a commitment to figure things out, in partnership, in iterative ways. Patients, caregivers, care providers and organizational leaders all need to be adaptive leaders in this endeavour.

"Caregiving is like on the job training but nobody has the manual": Canadian caregivers' perceptions of their roles within the healthcare system.

BACKGROUND: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. METHODS: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers - as a resource, as a co-worker, and as a co-client. RESULTS: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of 'care-coordinator', which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. CONCLUSIONS: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

A qualitative study exploring the lived experiences of deconditioning in hospital in Ontario, Canada.

BACKGROUND: Older adults, especially those with physical and social complexities are at risk of hospital-associated deconditioning. Hospital-associated deconditioning is linked to increased length of stay in hospital, stress, and readmission rates. To date, there is a paucity of research on the experiences and implications of deconditioning in hospital from different perspectives. Therefore, the objectives of this exploratory, descriptive qualitative study were to explore hospital-associated deconditioning from the views of different stakeholders and to develop an understanding of deconditioning from physical, social, and cognitive perspectives. METHODS: Between August 2018 and July 2019, in-depth, semi-structured interviews were conducted with patients 50 years or older, who had a hip fracture or delay in discharge, as well as caregivers, providers, and decision-makers who provided support or impacted care processes for these patients. Participants were recruited from one urban and one rural health region located in Ontario, Canada. All interviews were audio-recorded, transcribed, and analyzed using a constant comparison approach. RESULTS: A total of 80 individuals participated in this study. Participants described insufficient activities in hospital leading to boredom and mental and physical deconditioning. Patients were frustrated with experiencing deconditioning and their decline in function seemed to impact their sense of self and identity. Deconditioning had substantive impacts on patients' ability to leave hospital to their next point of care. Providers and decision-makers understood the potential for deconditioning but felt constrained by factors beyond their control. Factors that appeared to impact deconditioning included the hospital's built environment and social capital resources (e.g., family, roommates, volunteers, staff). CONCLUSIONS: Participants described a substantial lack of physical, cognitive, and social activities, which led to deconditioning. Recommendations to address deconditioning include: (1) measuring physical/psychological function and well-being throughout hospitalization; (2) redesigning hospital environments (e.g., create social spaces); and (3) increasing access to rehabilitation during acute hospital stays, while patients wait for the next point-of-care.

Why does continuity of care with family doctors matter? Review and qualitative synthesis of patient and physician perspectives.

OBJECTIVE: To summarize and synthesize qualitative studies that report patient and physician perspectives on continuity of care in family practice. DATA SOURCES: MEDLINE (Ovid), EMBASE (Ovid), and PsycInfo (Ovid) were searched for qualitative primary research reporting perspectives of patients, physicians, or both, on continuity of care in family practice. STUDY SELECTION: English-language qualitative studies were selected (eg, interviews, focus groups, mixed methods) that were conducted in Canada, the United States, the United Kingdom, the European Union, New Zealand, or Australia. SYNTHESIS: Themes were extracted, summarized, and synthesized. Six overarching themes emerged: continuity of care enables person-centred care; continuity of care increases quality of care; continuity of care leads to greater confidence in medical decision making; continuity of care comes with drawbacks; the absence of continuity of care may lead to medical and psychological harm; and continuity of care can foster greater joy and meaning in a physician's work. Out of the 6 themes, patients and physicians shared the first 5. CONCLUSION: To the authors' knowledge, this is the first qualitative review reporting the unique perspectives of both patients and family physicians on continuity of care. The findings add nuanced insight to the importance of continuity of care in family practice.

"It's More than Just Needing money": The Value of Supporting Networks of Care.

It is well established in research, practice, and policy that unpaid caregivers (family and friends of people with care needs) experience stress in their role. Supports that have been put in place by policy planners and program developers to support caregivers may not be accessed by caregivers at all or may do little to reduce their stress. Accessing personal resources (education, finances), in addition to social resources (individual connections) and societal resources (community supports) are critical in fostering resilience in caregivers (helping them adapt to stress and adversity). Social capital theorists argue that creating connections at various levels can improve access to resources. This research, through qualitative interviews (n = 21), identifies the different levels of resources required to address the needs of caregivers. Our findings indicate that interventions that focus on access to personal-level resources (education, funding) are important, but are on their own insufficient. Of more importance were interventions that work to improve relationships between formal providers and families; access to interdisciplinary teams; cross-sectoral collaborations; and inter-organization relationships, highlighting that a system that works together is likely to improve caregivers' access to resources.

An alternate level of care plan: Co-designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges.

OBJECTIVE: To engage with patients, caregivers and care providers to co-design components of an intervention that aims to improve delayed hospital discharge experiences. DESIGN: This is a qualitative study, which entailed working groups and co-design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention. SETTING AND PARTICIPANTS: Our team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7-member Patient and Caregiver Advisory Council participated in all stages of the research. RESULTS: Key challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on-going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on-going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho-social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on-going engagement. DISCUSSION AND CONCLUSIONS: Our findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.

'The Future is Probably Now': Understanding of illness, uncertainty and end-of-life discussions in older adults with heart failure and family caregivers.

BACKGROUND: Earlier end-of-life communication is critical for people with heart failure given the uncertainty and high-risk of mortality in illness. Despite this, end-of-life communication is uncommon in heart failure. Left unaddressed, lack of end-of-life discussions can lead to discordant care at the end of life. OBJECTIVE: This study explores patients' and caregivers' understanding of illness, experiences of uncertainty, and perceptions of end-of-life discussions in advanced illness. DESIGN: Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. MAIN RESULTS: Understanding of illness was shaped by participants' illness-related experiences (e.g. symptoms, hospitalizations and self-care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants' inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end-of-life discussions. CONCLUSION: Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness-related challenges may delay older adults and family caregivers from engaging in end-of-life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end-of-life communication.

Patient and caregiver experience with delayed discharge from a hospital setting: A scoping review.

BACKGROUND: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital-related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. OBJECTIVE: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. SEARCH STRATEGY: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. INCLUSION CRITERIA: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer-reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. DATA EXTRACTION: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. MAIN RESULTS: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. CONCLUSION: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.