Young carers' perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study.

OBJECTIVES: Despite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role. DESIGN AND SETTING: A mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions. RESULTS: Eight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system. CONCLUSION: Study findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.

Medication self-management toolkits for adults with multiple sclerosis: A scoping review.

Background: Multiple sclerosis (MS) is an autoimmune disease that is often treated with multiple medications. Managing multiple medications, also known as polypharmacy, can be challenging for persons with MS. Toolkits are instructional resources designed to promote behaviour change. Toolkits may support medication self-management for adults with MS, as they have been useful in other populations with chronic conditions. Objective: The main purpose of this review was to identify and summarize medication self-management toolkits for MS, as related to the design, delivery, components, and measures used to evaluate implementation and/or outcomes. Methods: A scoping review was conducted following guidelines by JBI. Articles were included if they focused on adults (18 years or older) with MS. Results: Six articles reporting on four unique toolkits were included. Most toolkits were technology-based, including mobile or online applications, with only one toolkit being paper-based. The toolkits varied in type, frequency, and duration of medication management support. Varying outcomes were also identified, but there were improvements reported in symptom management, medication adherence, decision-making, and quality of life. The six studies were quantitative in design, with no studies exploring the user experience from a qualitative or mixed-methods design. Conclusions: There is limited research on medication self-management toolkits among adults with MS. Future development, implementation, and evaluation mixed-methods research are needed to explore user experiences and overall design of toolkits.

Medication self-management interventions for persons with stroke: A scoping review.

The use of multiple medications is common following a stroke for secondary prevention and management of co-occurring chronic conditions. Given the use of multiple medications post-stroke, optimizing medication self-management for this population is important. The objective of this scoping review was to identify and summarize what has been reported in the literature on interventions related to medication self-management for adults (aged 18+) with stroke. Electronic databases (Ovid Medline, Ovid Embase, EBSCO CINAHL, Ovid PsycINFO, Web of Science) and grey literature were searched to identify relevant articles. For inclusion, articles were required to include an adult population with stroke undergoing an intervention aimed at modifying or improving medication management that incorporated a component of self-management. Two independent reviewers screened the articles for inclusion. Data were extracted and summarized using descriptive content analysis. Of the 56 articles that met the inclusion criteria, the focus of most interventions was on improvement of secondary stroke prevention through risk factor management and lifestyle modifications. The majority of studies included medication self-management as a component of a broader intervention. Most interventions used both face-to-face interactions and technology for delivery. Behavioural outcomes, specifically medication adherence, were the most commonly targeted outcomes across the interventions. However, the majority of interventions did not specifically or holistically target medication self-management. There is an opportunity to better support medication self-management post-stroke by ensuring interventions are delivered across sectors or in the community, developing an understanding of the optimal frequency and duration of delivery, and qualitatively exploring experiences with the interventions to ensure ongoing improvement.

A scoping review of medication self-management intervention tools to support persons with traumatic spinal cord injury.

BACKGROUND: Persons with traumatic spinal cord injury (SCI) use multiple medications (polypharmacy) to manage the high number of secondary complications and concurrent conditions. Despite the prevalence of polypharmacy and challenges associated with managing medications, there are few tools to support medication self-management for persons with SCI. OBJECTIVE: The purpose of this scoping review was to identify and summarize what is reported in the literature on medication self-management interventions for adults with traumatic SCI. METHODS: Electronic databases and grey literature were searched for articles that included an adult population with a traumatic SCI and an intervention targeting medication management. The intervention was required to incorporate a component of self-management. Articles were double screened and data were extracted and synthesized using descriptive approaches. RESULTS: Three studies were included in this review, all of which were quantitative. A mobile app and two education-based interventions to address self-management of SCI, medication management, and pain management, respectively, were included. Only one of the interventions was co-developed with patients, caregivers, and clinicians. There was minimal overlap in the outcomes measured across the studies, but learning outcomes (e.g., perceived knowledge and confidence), behavioural outcomes (e.g., management strategies, data entry), and clinical outcomes (e.g., number of medications, pain scores, functional outcomes) were evaluated. Results of the interventions varied, but some positive outcomes were noted. CONCLUSIONS: There is an opportunity to better support medication self-management for persons with SCI by co-designing an intervention with end-users that comprehensively addresses self-management. This will aid in understanding why interventions work, for whom, in what setting, and under what circumstances.

Raising the bar for patient experience during care transitions in Canada: A repeated cross-sectional survey evaluating a patient-oriented discharge summary at Ontario hospitals.

BACKGROUND: Patient experience when transitioning home from hospital is an important quality metric linked to improved patient outcomes. We evaluated the impact of a hospital-based care transition intervention, patient-oriented discharge summary (PODS), on patient experience across Ontario acute care hospitals. METHODS: We used a repeated cross-sectional study design to compare yearly positive (top-box) responses to four questions centered on discharge communication from the Canadian Patient Experience Survey (2016-2020) among three hospital cohorts with various levels of PODS implementation. Generalized Estimating Equations using a binomial likelihood accounting for site level clustering was used to assess continuous linear time trends among cohorts and cohort differences during the post-implementation period. This research had oversight from a public advisory group of patient and caregiver partners from across the province. RESULTS: 512,288 individual responses were included. Compared to non-implementation hospitals, hospitals with full implementation (>50% discharges) reported higher odds for having discussed the help needed when leaving hospital (OR = 1.18, 95% CI = 1.02-1.37) and having received information in writing about what symptoms to look out for (OR = 1.44, 95% = 1.17-1.78) post-implementation. The linear time trend was also significant when comparing hospitals with full versus no implementation for having received information in writing about what symptoms to look out for (OR = 1.05, 95% CI = 1.01-1.09). INTERPRETATION: PODS implementation was associated with higher odds of positive patient experience, particularly for questions focused on discharge planning. Further efforts should center on discharge management, specifically: understanding of medications and what to do if worried once home.

A qualitative study exploring the experiences of individuals living with stroke and their caregivers with community-based poststroke services: A critical need for action.

BACKGROUND: Unmet poststroke service needs are common among people living in the community. Community-Based Stroke Services (CBSS) have the potential to address these unmet needs, yet there are no comprehensive guidelines to inform the design of CBSS, and they remain an understudied aspect of stroke care. This study aimed to describe the perceived barriers to accessing community-based stroke services, benefits from these programs and opportunities to address unmet needs. METHODS: This was a qualitative descriptive study with interviews and focus groups conducted with people living with stroke and caregivers. Data were transcribed and analyzed thematically. RESULTS: Eighty-five individuals with stroke and caregivers participated. Four key overarching themes were identified: facilitators and barriers to accessing and participating in community-based stroke services; components of helpful and unhelpful stroke services; perceived benefits of community-based stroke services; and opportunities to address unmet stroke service needs. INTERPRETATIONS: The findings resonate with and extend prior literature, suggesting a critical need for personalized and tailored stroke services to address persistent unmet needs. We call on relevant stakeholders, such as policymakers, providers, and researchers, to move these insights into action through comprehensive guidelines, practice standards and interventions to personalize and tailor CBSS.

The Young Carers' Journey: A Systematic Review and Meta Ethnography.

Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers' experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers' experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map.

Medication Supports at Transitions Between Hospital and Other Care Settings: A Rapid Scoping Review.

PURPOSE: Transitions in care (TiC) often involves managing medication changes and can be vulnerable moments for patients. Medication support, where medication changes are reviewed with patients and caregivers to increase knowledge and confidence about taking medications, is key to successful transitions. Little is known about the optimal tools and processes for providing medication support. This study aimed to identify describe patient or caregiver-centered medication support processes or tools that have been studied within 3 months following TiC between hospitals and other care settings. METHODS: Rapid scoping review; English-language publications from OVID MEDLINE, OVID EMBASE, Cochrane Library and EBSCO CINAHL (2004-July 2019) that assessed medication support interventions delivered within 3 months following discharge were included. A subset of titles and abstracts were assessed by two reviewers to evaluate agreement and once reasonable agreement was achieved, the remainder were assessed by one reviewer. Eligibility assessment for full-text articles and data charting were completed by an experienced reviewer. RESULTS: A total of 7671 unique citations were assessed; 60 studies were included. Half of the studies (n = 30/60) were randomized controlled trials. Most studies (n = 45/60) did not discuss intervention development, particularly whether end users were involved in intervention design. Many studies (n = 37/60) assessed multi-component interventions with written/print and verbal education components. Few studies (n = 5/60) included an electronic component. Very few studies (n = 4/60) included study populations at high risk of adverse events at TiC (eg, people with physical or intellectual disabilities, low literacy or language barriers). CONCLUSION: The majority of studies were randomized controlled trials involving verbal counselling and/or physical document delivered to the patient before discharge. Few studies involved electronic components or considered patients at high-risk of adverse events. Future studies would benefit from improved reporting on development, consideration for electronic interventions, and improved reporting on patients with higher medication-related needs.

Tool development to improve medication information transfer to patients during transitions of care: A participatory action research and design thinking methodology approach.

BACKGROUND: Medication changes during transitions of care is a recognized challenge that has been linked to adverse events. The delivery of medication instructions during transition from hospital to home is a priority area for improvement. OBJECTIVE: The goals of this work were to 1) understand the current experiences of patients and families; and 2) co-design tools to improve medication information transfer during transitions of care together with patients, families, and providers. METHODS: A participatory action approach, using mixed methods within a design thinking framework was used. Participants were chosen from patient groups at higher risk of adverse events, guided by extreme user design, which posits that needs of extreme users can also fit the majority. Providers, patients and family (users) were interviewed to understand current experiences with medication information transfer during transitions of care and to solicit input on potential elements to inform tool design. Users were engaged in iterative creation of prototypes. RESULTS: A total of 116 patients, family caregivers, and providers were engaged throughout this project. Findings highlighted challenges currently experienced, strengthening the case for tools that engage the patient and family in medication information transfer. Important information included why medications were prescribed, how to take them, side effects, and an explanation of the role of community pharmacists. Displaying information in a grid format was preferred. Two tools were prototyped: (1) A Medication Whiteboard for engaging patients and families in creating their medication routine, and (2) A Patient Oriented Medication List for providing medication instructions and as a reference once patients are home. CONCLUSIONS: Through the use of mixed methods within a design thinking framework, the team was able to understand the challenges and design prototypes of tools that both engage patients and families in developing their medication routine and improve medication information transfer during transitions of care.

Opportunity to inform social needs within a hospital setting using data-driven patient engagement.

BACKGROUND: High-risk patients account for a disproportionate amount of healthcare use, necessitating the development of care delivery solutions aimed specifically at reducing this use. These interventions have largely been unsuccessful, perhaps due to a lack of attention to patients' social needs and engagement of patients in developing solutions. METHODS: The project team used a combination of administrative data, information culled from charts and interviews with high-risk patients to understand social needs, the current experience of addressing social needs in the hospital, and patient preferences and identified opportunities for improvement. Interviews were conducted in March and April 2020, and patients were asked to reflect on their experiences both before and during the COVID-19 pandemic. RESULTS: A total of 4579 patients with 26 168 visits to the emergency department and 2904 inpatient admissions in the previous year were identified. Qualitative analysis resulted in three themes: (1) the interaction between social needs, demographics, and health; (2) the hospital's role in addressing social needs; and (3) the impact of social needs on experiences of care. Themes related to experiences before and during COVID-19 did not differ. Three opportunities were identified: (1) training for staff related to stigma and trauma, (2) improved documentation of social needs and (3) creation of navigation programmes. DISCUSSION: Certain demographic factors were clearly associated with an increased need for social support. Unfortunately, many factors identified by patients as mediating their need for such support were not consistently captured. Going forward, high-risk patients should be included in the development of quality improvement initiatives and programmes to address social needs.

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.

Implementation, spread and impact of the Patient Oriented Discharge Summary (PODS) across Ontario hospitals: a mixed methods evaluation.

BACKGROUND: Traditional discharge processes lack a patient-centred focus. This project studied the implementation and effectiveness of an individualized discharge tool across Ontario hospitals. The Patient Oriented Discharge Summary (PODS) is an individualized discharge tool with guidelines that was co-designed with patients and families to enable a patient-centred process. METHODS: Twenty one acute-care and rehabilitation hospitals in Ontario, Canada engaged in a community of practice and worked over a period of 18 months to implement PODS. An effectiveness-implementation hybrid design using a triangulation approach was used with hospital-collected data, patient and provider surveys, and interviews of project teams. Key outcomes included: penetration and fidelity of the intervention, change in patient-centred processes, patient and provider satisfaction and experience, and healthcare utilization. Statistical methods included linear mixed effects models and generalized estimating equations. RESULTS: Of 65,221 discharges across hospitals, 41,884 patients (64%) received a PODS. There was variation in reach and implementation pattern between sites, though none of the between site covariates was significantly associated with implementation success. Both high participation in the community of practice and high fidelity were associated with higher penetration. PODS improved family involvement during discharge teaching (7% increase, p = 0.026), use of teach-back (11% increase, p < 0.001) and discussion of help needed (6% increase, p = 0.041). Although unscheduled healthcare utilization decreased with PODS implementation, it was not statistically significant. CONCLUSIONS: This project highlighted the system-wide adaptability and ease of implementing PODS across multiple patient groups and hospital settings. PODS demonstrated an improvement in patient-centred discharge processes linked to quality standards and health outcomes. A community of practice and high quality content may be needed for successful implementation.

'There was no preamble': Comparing the Transition from Hospital to Home in Different Care Settings.

Our qualitative descriptive study compared how older patients and their informal caregivers experienced the care transition from acute care or rehabilitation to home. We recruited patients 65 years of age or older, or their informal caregivers, from in-patient units within acute care hospitals and rehabilitation facilities to participate in semi-structured interviews. We identified emergent themes via thematic analysis. In all, 16 patients and four patient caregivers participated. Across all care settings, caregivers were integral in facilitating the transition as well as experiencing variable discharge preparation, health care providers' optimizing transitions, and missed care and medication discrepancies at transition points. Orthopedic and rehabilitation patients more commonly voiced prior transition experiences in discharge preparation, including having to unexpectedly coordinate and wait for outpatient services. Differing responses between acute care and orthopedic settings suggest that transitional care practices and policies favor an individualized approach that considers patients' previous experiences, needs, and care expectations.

Patients' and caregivers' perspectives on factors that influence understanding of and adherence to hospital discharge instructions: a qualitative study.

BACKGROUND: Many patients have difficulty understanding and adhering to discharge instructions once home from hospital. We assessed patient and family caregiver perspectives on factors that influence understanding of and adherence to discharge instructions. METHODS: We conducted a qualitative study using semistructured interviews of participants aged 18 years or more enrolled in a multicentre mixed-methods study who were discharged from 3 acute care hospitals across Ontario with a diagnosis of congestive heart failure, chronic obstructive pulmonary disease or pneumonia. Patients were recruited between March and November 2016. We used directed content analysis to derive themes and subthemes. RESULTS: Twenty-seven participants (16 patients and 11 family members) described 5 themes that affected their understanding of and adherence to discharge instructions: 1) the role of caregivers, 2) relationships with inpatient and outpatient health care providers, 3) previous hospital stay, 4) barriers to accessing postdischarge care and 5) system-level processes. Subthemes highlighted the importance participants attributed to who provides the instructions, the development of resilience and advocacy through previous admissions, the benefits of addressing language and physical disability barriers, reviewing instructions in a unhurried manner, and ensuring that written instructions are meaningful and actionable. INTERPRETATION: Care transition interventions targeting improved communication are unlikely to improve understanding of and adherence to discharge instructions on their own. A patient-centred framework that promotes positive relationships with a patient's circle of care, reflects previous experiences with discharge, addresses equity barriers, and enhances strategies for patient and caregiver engagement at the time of discharge may optimize understanding and adherence once the patient is home.

Planning Capacity for Mental Health and Addiction Services in the Emergency Department: A Discrete-Event Simulation Approach.

Ontario has shown an increasing number of emergency department (ED) visits, particularly for mental health and addiction (MHA) complaints. Given the current opioid crises Canada is facing and the legalization of recreational cannabis in October 2018, the number of MHA visits to the ED is expected to grow even further. In face of these events, we examine capacity planning alternatives for the ED of an academic hospital in Toronto. We first quantify the volume of ED visits the hospital has received in recent years (from 2012 to 2016) and use forecasting techniques to predict future ED demand for the hospital. We then employ a discrete-event simulation model to analyze the impacts of the following scenarios: (a) increasing overall demand to the ED, (b) increasing or decreasing number of ED visits due to substance abuse, and (c) adjusting resource capacity to address the forecasted demand. Key performance indicators used in this analysis are the overall ED length of stay (LOS) and the total number of patients treated in the Psychiatric Emergency Services Unit (PESU) as a percentage of the total number of MHA visits. Our results showed that if resource capacity is not adjusted, ED LOS will deteriorate considerably given the expected growth in demand; programs that aim to reduce the number of alcohol and/or opioid visits can greatly aid in reducing ED wait times; the legalization of recreational use of cannabis will have minimal impact, and increasing the number of PESU beds can provide great aid in reducing ED pressure.

Patient experiences using a novel tool to improve care transitions in patients with heart failure: a qualitative analysis.

OBJECTIVE: To evaluate the utility of a novel discharge tool adapted for heart failure (HF) on patient experience. DESIGN: Semistructured interviews assessed the utility of a novel discharge tool adapted for HF; patient-oriented discharge summary (PODS-HF) at 72 hours and 30 days after leaving hospital. Interviews were recorded and transcribed verbatim. Three investigators used directed content analysis to determine themes and subthemes from the narrative data. SETTING: The cardiology ward of an urban academic institution in Canada. PARTICIPANTS: 13 patients and caregivers completed 24 interviews. Eligible patients were >18 years and admitted with a diagnosis of HF. RESULTS: Analysis revealed six interconnected themes: (1) Utility of discharge instructions: how patients perceive and use written and verbal instructions. Patients receiving PODS-HF identified value in the patient-centred summarised content. (2) Adherence: strategies used by patients to enhance adherence to medications, diet and lifestyle changes. PODS-HF provides a strong visual reminder, particularly early postdischarge. (3) Adaptation: how patients incorporate changes into 'new norms'. This was more evident by 30 days, and those using PODS-HF had less unscheduled visits and readmissions. (4) Relationships with healthcare providers: patients' perceptions of the roles of family physicians and specialists in follow-up care. (5) Role of family and caregivers: the pivotal role of caregivers in supporting adherence and adaptation. (6) Follow-up phone calls: the utility of follow-up calls, particularly early after discharge as a means of providing clarification, reassurance and education. CONCLUSION: PODS-HF is a useful tool that increases patients' confidence to self-manage and facilitates adherence by providing relevant written information to reference after discharge.

Analysis of emergency department length of stay for mental health visits: A case study of a Canadian academic hospital.

OBJECTIVE: The objective of this study was to examine temporal trends in mental health visits to the emergency department (ED) and to determine differences in length of stay (LOS) between mental health visits and visits for non-mental health conditions. METHODS: A population-based retrospective study was conducted for patients who visited the ED of an academic hospital located in Toronto, ON, between fiscal years 2012 and 2016. Trends in the number of visits and descriptive statistics were calculated for both mental health and non-mental health groups. Quantile regression was used to compare the median and 90th percentile LOS. RESULTS: In five years, the absolute increase in the number of mental health visits to the ED was 55.7%. The 90th percentile LOS was similar for mental and non-mental health visits that were internally transferred (10.7 hours v. 8.3 hours) but significantly higher for those who were discharged (11.4 hours v. 7.3 hours), admitted (52.6 hours v. 29.3 hours), and externally transferred (21.9 hours v. 10.0 hours). After adjusting for other variables, the 90th percentile LOS was 3.3 hours longer for mental health visits resulting in discharge (p<0.001), 24.5 hours longer for those admitted (p<0.001), and 12.7 hours longer for those externally transferred (p<0.001). CONCLUSION: The number of mental health visits to the ED is linearly increasing over time, and the LOS in the ED is significantly longer for mental health visits for almost all discharge dispositions. Thus, systematic changes are needed to address the ED capacity to provide care for the growing mental health population.

"We are doing it together"; The integral role of caregivers in a patients' transition home from the medicine unit.

BACKGROUND: An admission to hospital for acute illness can be difficult for patients and lead to high levels of anxiety. Patients are given a lot of information throughout their hospital stay and instructions at discharge to follow when they get home. For complex medical patients, the ability to retain, understand, and adhere to these instructions is a critical marker of a successful transition. This study was undertaken to explore factors impacting the ability of patients to understand and adhere to instructions. METHODS: A qualitative design of interviews with patients and caregivers was used. Participants were adult patients and caregivers with congestive heart failure, chronic obstructive pulmonary disease, or community-acquired pneumonia being discharged home from three academic acute care hospitals in Ontario, Canada. Semi structured interviews were conducted with participants within one week following their discharge from hospital. Interviews were audiotaped and transcribed. Five independent researchers participated in an iterative process of coding, reviewing, and analyzing the interviews using direct content analysis. RESULTS: In total, 27 participants completed qualitative interviews. Analysis revealed the role of the caregiver to be critical in its relation to the ability of patients to understand and adhere to discharge instructions. Within the topic of caregiving, we draw on three areas of insight: The first clarified how caregivers support patients after they are discharged home from the hospital. The second highlighted how caregiver involvement impacts patient understanding and adherence to discharge instructions. The third revealed system factors that influence a caregiver's involvement when receiving discharge instructions. CONCLUSION: Caregivers play an important role in the transition of a complex medical patient by impacting a patient's ability to understand and adhere to their discharge instructions. The themes identified in this paper highlight opportunities for healthcare providers and institutions to effectively involve caregivers during transitions from acute care hospitals to home.

Implementing Patient-Oriented Discharge Summaries (PODS): A Multisite Pilot Across Early Adopter Hospitals.

Communication gaps when patients transition from hospital to either home or community can be problematic. Partnership between Toronto Central Local Health Integration Network (TC LHIN) and OpenLab addressed this through the Patient-Oriented Discharge Summaries (PODS) project. From January through March 2015, eight hospital departments across Toronto came together to implement the PODS, a tool previously developed through a co-design process involving patients, caregivers and providers. This paper presents data on how the hospitals came together and the impact of PODS on the patient and provider experience across these hospitals and discusses it implications.