Exploring the experiences of adults with stroke in virtual community-based stroke programs: a qualitative descriptive study.

BACKGROUND: Stroke is among the top contributors to disability and can impact an individual's cognition, physical functioning, and mental health. Since the COVID-19 pandemic, several community-based organizations have started delivering stroke programs virtually. However, participants' experiences in these programs remain understudied, and evidence-based guidelines to inform and optimize virtual stroke program development and delivery are lacking. Thus, this study aimed to describe the perspectives and experiences of individuals with stroke who participated in virtual community-based organization stroke programs, including perceived access and participation facilitators and barriers and suggestions for improving these programs. METHODS: A qualitative descriptive design was used to gather participant experiences through semi-structured interviews. Audio-recorded interviews were conducted on Zoom and transcribed verbatim. Adult participants who had experienced a stroke and attended at least one Canadian virtual community-based organization stroke program were recruited. Data were analyzed using inductive thematic analysis. RESULTS: Twelve participants (32-69 years, 2-23 years post-stroke, eight women and four men) participated in this study. Five themes were identified: (1) motives to join virtual community-based organization stroke programs, including gaining peer connections, knowledge and information; (2) perceived barriers to accessing and participating in virtual community-based organization stroke programs, including technology inequities, difficulties navigating technology, and inadequate facilitation; (3) perceived facilitators to accessing and participating in virtual community-based organization stroke programs, including remote access, virtual platform features and program leader characteristics/skills; (4) unmet needs during virtual community-based organization stroke programs, including in-person connection and individualized support; and (5) suggestions and preferences for improving virtual community-based organization stroke programs, including program facilitation, content and format. CONCLUSIONS: Study findings highlight opportunities to improve virtual community-based organization stroke programs to optimize participant experiences and outcomes. Addressing the barriers and suggestions identified in this study may improve virtual community-based organization stroke programs' access and quality.

Comparing stroke rehabilitation inpatients and clinical trials eligibility criteria: A secondary chart review analysis revealing that most patients could have been excluded from rehabilitation trials based on comorbidity status.

Background: The generalizability of treatments examined in rehabilitation randomized controls trials (RCTs) partly depend on the similarity between trial subjects and a stroke rehabilitation inpatient population. The aim of this study was to determine the proportion of stroke rehabilitation inpatients that would have been eligible or ineligible to participate in published stroke RCTs. Methods: This was a secondary analysis of chart review data collected as part of an independent quality improvement initiative. Data pertaining to the characteristics of stroke rehabilitation inpatients (e.g. age, cognitive impairment, previous stroke, comorbidities) were extracted from the medical charts of patients consecutively admitted to an inpatient stroke rehabilitation unit at a large urban rehabilitation hospital in Canada. Using the exclusion criteria categories of stroke RCTs identified from a systematic scoping review of 428 RCTs, we identified how many stroke rehabilitation inpatients would have been eligible or ineligible to participate in stroke RCTs based on their age, cognitive impairment, previous stroke and presence of comorbidities. Results: In total, 110 stroke rehabilitation inpatients were included. Twenty-four percent of patients were 80 years of age or older, 84.5% had queries or concerns regarding patient cognitive abilities, 28.0% had a previous stroke, and 31.8% had a severe stroke. Stroke rehabilitation inpatients had six comorbidities on average. Based on these factors, most stroke rehabilitation inpatients could have been excluded from stroke RCTs, with cognitive impairment the most common RCT exclusion criteria. Conclusions: Changes to the design of RCTs would support the development of clinical practice guidelines that reflect stroke rehabilitation inpatient characteristics, enhancing equity, diversity, and inclusion within samples and the generalizability of results.

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.

"Why Do We Always Have to Focus on the Bad": A Strengths-Based Approach to Identify the Positive Aspects of Care From the Perspective of Older Adults Using a Secondary Qualitative Analysis.

Hospitalization is often viewed as a burdensome and stressful period for older adults and their family caregivers; however, little attention has been given to the positive aspects of the care continuum journey. The purpose of this article is to highlight the positive aspects of healthcare from the perspective of Canadian older adults with complex needs and their family caregivers. This study utilized a strengths-based theoretical perspective to conduct a secondary qualitative analysis of interviews with 12 older adults and seven family caregivers. Four themes relating to positive aspects of care were identified, including: (1) looking beyond illness, (2) emotional support from healthcare providers, (3) timely discharge, and (4) upholding independence. Focusing on the positive aspects can help determine areas of care practice that currently work well. These insights will be valuable for current and future initiatives seeking to restructure and optimize healthcare services for older adults.

Scoping review protocol of the use of codesign methods in stroke intervention development.

INTRODUCTION: Codesign is an emerging research method to enhance intervention development by actively engaging non-researchers (eg, people who have had a stroke, caregivers and clinicians) in research. The involvement of non-researchers in research is becoming increasingly popular within health studies as it may produce more relevant and effective findings. The stroke population commonly exhibits challenges such as aphasia and cognitive changes that may limit their participation in codesign. However, the use of codesign within the stroke literature has not been comprehensively reviewed. This scoping review will determine: (1) what is the extent, range and nature of stroke research that has used codesign methods? (2) What codesign methods have been used to develop stroke interventions? (3) What considerations for codesigning interventions with people who have stroke are not captured in the findings? METHODS AND ANALYSIS: This is a protocol for a scoping review to identify the literature relating to stroke, and codesign will be conducted on OVID Medline, OVID Embase, OVID PsychINFO, EBSCO CINAHL, the Cochrane Library, Scopus, PEDro-Physiotherapy Evidence Database and Global Index Medicus. Studies of any design and publication date will be included. Title and abstract and full-text review will be conducted independently by two reviewers. Data will be extracted, collated and then summarised descriptively using quantitative (eg, numerical descriptions) and qualitative (eg, textual descriptions) methods. Numerical summaries will map the extent (eg, number of studies), range (eg, types of studies) and nature (eg, types of interventions developed) of the literature on this topic. A thematic analysis will provide insights into the codesign methods (eg, activities, non-researchers), including heterogeneity across and within studies. ETHICS AND DISSEMINATION: This review protocol does not require ethics approval as data has not been collected/analysed. The findings will highlight opportunities and recommendations to inform future codesign research in stroke and other populations who exhibit similar challenges/disabilities, and they will be disseminated via publications, presentations and stakeholder meetings. TRIAL REGISTRATION NUMBERREGISTRATION: Open Science Framework: 10.17605/OSF.IO/NSD2W.

Community-based culturally tailored education programmes for black adults with cardiovascular disease, diabetes, hypertension and stroke: a systematic review protocol of primary empirical studies.

INTRODUCTION: Chronic conditions and stroke disproportionately affect black adults in communities all around the world partly due to patterns of systemic racism, disparities in care, and lack of resources. Culturally tailored programmes can potentially meet the needs of the communities they serve, including black adults who may experience reduced access to postacute services. To address unequal care received by black communities, a shift to community-based programmes that deliver culturally tailored programmes may give an alternative to a healthcare model which reinforces health inequities. The objectives of this review are to: (1) synthesise key programme characteristics and outcomes of culturally tailored community-based (CBCT) programmes that are designed to improve health outcomes in black adults with cardiovascular disease, hypertension, diabetes, or stroke and (2) identify which of the five categories of culturally appropriate programmes from Kreuter and colleagues have been used to implement CBCT programmes. METHODS AND ANALYSIS: This is a protocol for a systematic review that will search Medline, Embase and Cumulative Index to Nursing and Allied Health Literature databases to identify studies of CBCT programmes for black adults with cardiovascular disease, hypertension, diabetes, or stroke between 2000 and 2021. Two reviewers will assess each study based on the inclusion criteria and any disagreements will be resolved by a third reviewer. Data will be extracted using a customised data extraction form to identify programme characteristics and the strategies used to develop culturally appropriate programmes. AMSTAR will be used to evaluate the articles included in the study. The aggregated data will be presented through textual descriptions of programme characteristics and outcomes. ETHICS AND DISSEMINATION: This systematic review protocol does not require ethics approval without the inclusion of human participants and will use studies that have previously obtained informed consent. The systematic review findings will be disseminated in a peer-reviewed journal and used to inform future research led by JF and HS. TRIAL REGISTRATION NUMBER: PROSPERO CRD42021245772.

Recommendations for the Design and Delivery of Transitions-Focused Digital Health Interventions: Rapid Review.

BACKGROUND: Older adults experience a high risk of adverse events during hospital-to-home transitions. Implementation barriers have prevented widespread clinical uptake of the various digital health technologies that aim to support hospital-to-home transitions. OBJECTIVE: To guide the development of a digital health intervention to support transitions from hospital to home (the Digital Bridge intervention), the specific objectives of this review were to describe the various roles and functions of health care providers supporting hospital-to-home transitions for older adults, allowing future technologies to be more targeted to support their work; describe the types of digital health interventions used to facilitate the transition from hospital to home for older adults and elucidate how these interventions support the roles and functions of providers; describe the lessons learned from the design and implementation of these interventions; and identify opportunities to improve the fit between technology and provider functions within the Digital Bridge intervention and other transition-focused digital health interventions. METHODS: This 2-phase rapid review involved a selective review of providers' roles and their functions during hospital-to-home transitions (phase 1) and a structured literature review on digital health interventions used to support older adults' hospital-to-home transitions (phase 2). During the analysis, the technology functions identified in phase 2 were linked to the provider roles and functions identified in phase 1. RESULTS: In phase 1, various provider roles were identified that facilitated hospital-to-home transitions, including navigation-specific roles and the roles of nurses and physicians. The key transition functions performed by providers were related to the 3 categories of continuity of care (ie, informational, management, and relational continuity). Phase 2, included articles (n=142) that reported digital health interventions targeting various medical conditions or groups. Most digital health interventions supported management continuity (eg, follow-up, assessment, and monitoring of patients' status after hospital discharge), whereas informational and relational continuity were the least supported. The lessons learned from the interventions were categorized into technology- and research-related challenges and opportunities and informed several recommendations to guide the design of transition-focused digital health interventions. CONCLUSIONS: This review highlights the need for Digital Bridge and other digital health interventions to align the design and delivery of digital health interventions with provider functions, design and test interventions with older adults, and examine multilevel outcomes. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-045596.

Inclusion of Older Adults in Digital Health Technologies to Support Hospital-to-Home Transitions: Secondary Analysis of a Rapid Review and Equity-Informed Recommendations.

BACKGROUND: Digital health technologies have been proposed to support hospital-to-home transition for older adults. The COVID-19 pandemic and the associated physical distancing guidelines have propelled a shift toward digital health technologies. However, the characteristics of older adults who participated in digital health research interventions to support hospital-to-home transitions remain unclear. This information is needed to assess whether current digital health interventions are generalizable to the needs of the broader older adult population. OBJECTIVE: This rapid review of the existing literature aimed to identify the characteristics of the populations targeted by studies testing the implementation of digital health interventions designed to support hospital-to-home transitions, identify the characteristics of the samples included in studies testing digital health interventions used to support hospital-to-home transitions, and create recommendations for enhancing the diversity of samples within future hospital-to-home digital health interventions. METHODS: A rapid review methodology based on scoping review guidelines by Arksey and O'Malley was developed. A search for peer-reviewed literature published between 2010 and 2021 on digital health solutions that support hospital-to-home transitions for older adults was conducted using MEDLINE, Embase, and CINAHL databases. The data were analyzed using descriptive statistics and qualitative content analysis. The Sex- and Gender-Based Analysis Plus lens theoretically guided the study design, analysis, and interpretation. RESULTS: A total of 34 studies met the inclusion criteria. Our findings indicate that many groups of older adults were excluded from these interventions and remain understudied. Specifically, the oldest old and those living with cognitive impairments were excluded from the studies included in this review. In addition, very few studies have described the characteristics related to gender diversity, education, race, ethnicity, and culture. None of the studies commented on the sexual orientation of the participants. CONCLUSIONS: This is the first review, to our knowledge, that has mapped the literature focusing on the inclusion of older adults in digital hospital-to-home interventions. The findings suggest that the literature on digital health interventions tends to operationalize older adults as a homogenous group, ignoring the heterogeneity in older age definitions. Inconsistency in the literature surrounding the characteristics of the included participants suggests a need for further study to better understand how digital technologies to support hospital-to-home transitions can be inclusive.

Synthesising evidence regarding hospital to home transitions supported by volunteers of third sector organisations: a scoping review protocol.

INTRODUCTION: Given the risks inherent in care transitions, it is imperative that patients discharged from hospital to home receive the integrated care services necessary to ensure a successful transition. Despite efforts by the healthcare sector to develop health system solutions to improve transitions, problems persist. Research on transitional support has predominantly focused on services delivered by healthcare professionals; the evidence for services provided by lay navigators or volunteers in this context has not been synthesised. This scoping review will map the available literature on the engagement of volunteers within third sector organisations supporting adults in the transition from hospital to home. METHODS AND ANALYSIS: Using the well-established scoping review methodology outlined by the Joanna Briggs Institute, a five-stage review is outlined: (1) determining the research question, (2) search strategy, (3) inclusion criteria, (4) data extraction and (5) analysis and presentation of the results. The search strategy will be applied to 10 databases reflecting empirical and grey literature. A two-stage screening process will be used to determine eligibility of articles. To be included in the review, articles must describe a community-based programme delivered by a third sector organisation that engages volunteers in the provisions of services that support adults transitioning from hospital to home. All articles will be independently assessed for eligibility, and data from eligible articles will be extracted and charted using a standardised form. Extracted data will be analysed using narrative and descriptive analyses. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review. Members of an international special interest group focused on the voluntary sector will be consulted to provide insight and feedback on study findings, help with dissemination of the results and engage in the development of future research proposals. Dissemination activities will include peer-reviewed publications and academic presentations.

Community Care for People with Complex Care Needs: Bridging the Gap between Health and Social Care.

INTRODUCTION: A growing number of people are living with complex care needs characterized by multimorbidity, mental health challenges and social deprivation. Required is the integration of health and social care, beyond traditional health care services to address social determinants. This study investigates key care components to support complex patients and their families in the community. METHODS: Expert panel focus groups with 24 care providers, working in health and social care sectors across Toronto, Ontario, Canada were conducted. Patient vignettes illustrating significant health and social care needs were presented to participants. The vignettes prompted discussions on i) how best to meet complex care needs in the community and ii) the barriers to delivering care to this population. RESULTS: Categories to support care needs of complex patients and their families included i) relationships as the foundation for care, ii) desired processes and structures of care, and iii) barriers and workarounds for desired care. DISCUSSION AND CONCLUSIONS: Meeting the needs of the population who require health and social care requires time to develop authentic relationships, broadening the membership of the care team, communicating across sectors, co-locating health and social care, and addressing the barriers that prevent providers from engaging in these required practices.