Exploring the Inclusion of Person-Centered Care Domains in Stroke Transitions of Care Interventions: A Scientific Statement From the American Heart Association.

BACKGROUND: Health care teams along the stroke recovery continuum have a responsibility to support care transitions and return to the community. Ideally, individualized care will consider patient and family preferences, best available evidence, and health care professional input. Person-centered care can improve patient-practitioner interactions through shared decision-making in which health professionals and institutions are sensitive to those for whom they provide care. However, it is unclear how the concepts of person-centered care have been described in reports of stroke transitional care interventions. METHODS: A secondary analysis of a systematic review and meta-analysis was undertaken. We retrieved all included articles (n=17) and evaluated the extent to which each intervention explicitly addressed 7 domains of person-centered care: alignment of care with patients' values, preferences, and needs; coordination of care; information and education; physical comfort; emotional support; family and friend involvement; and smooth transition and continuity of care. RESULTS: Most of the articles included some aspects of person-centeredness; we found that certain domains were not addressed in the descriptions of transitional care interventions, and no articles mentioned all 7 domains of person-centered care. We identified 3 implications for practice and research: (1) delineating person-centered care components when reporting interventions, (2) elucidating social and cultural factors relevant to the study sample and intervention, and (3) clearly describing the role of family and nonmedical support in the intervention. CONCLUSIONS: There is still room for greater consistency in the reporting of person-centeredness in stroke transitions of care interventions, despite a long-standing definition and conceptualization of person-centered care in academic and clinically focused literature.

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

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

Engagement in meaningful activities post suicide loss: A scoping review protocol.

RATIONALE: Each day, more than 10 Canadians die by suicide. Each suicide leaves entire communities to manage the traumatic aftermath of this loss. Individuals bereaved by suicide loss are at a higher risk of experiencing negative mental health outcomes. Current research suggests that engagement in meaningful activities may be an avenue to protecting mental health. It is important to understand if this is also the case for those experiencing bereavement post suicide loss. To date, there has not been a synthesis of the literature examining suicide loss and the nature and extent of engagement in meaningful activities post loss. OBJECTIVES: 1) To describe the nature and extent of the peer-reviewed suicide loss and bereavement literature related to engagement in meaningful activities; and 2) to identify facilitators and barriers that may impact engagement in meaningful activities post loss. METHODS: This paper describes a scoping review protocol that will be completed using stages identified by Arksey and O'Malley and updated by Levac and colleagues. Joanna Briggs Institute framework will also guide this review. Four electronic databases will be searched for suicide bereavement/loss concepts. Two reviewers will apply inclusion and exclusion criteria to identify articles discussing engagement in meaningful activities of everyday living post loss. Data will be descriptively summarized and analyzed using inductive content analysis. Results will be reported following PRISMA Extension for Scoping Reviews. EXPECTED RESULTS: A descriptive summary and conceptual map describing the current state of the peer-reviewed literature will be constructed. CONCLUSION: Experiencing a suicide loss increases the risk of negative mental health outcomes. A synthesis of literature is required to map the current available evidence related to suicide bereavement and engagement in meaningful activities, with potential implications for improving supports and services for those bereaved. This protocol is register with Open Science Framework Registries (10.17605/OSF.IO/M2NES).

Facilitators and barriers to pressure injury prevention, management and education: Perspectives from healthcare professionals-A qualitative study.

This study aims to (1) characterize healthcare professionals' (HCPs') experiences related to the prevention and management of pressure injuries (PIs) and (2) explore the educational needs of individuals with a past or current history of PIs and their caregivers from the perspective of HCPs. This is a qualitative descriptive study. HCPs (n = 18) were interviewed using a semi-structured interview guide. Interviews were audio-recorded, transcribed verbatim and coded using NVivo. Three overarching themes encompassing various dimensions were identified: (1) Facilitators related to PI prevention and management, (2) Challenges related to PI prevention and management and (3) Recommendations for improving patient and caregiver PI education. HCPs identified a greater number of challenges than facilitators related to PI care. This study emphasizes the importance of a patient-centred and interprofessional approach to patient education for PI prevention and management. Meaningful interventions focused on the patient may improve health literacy and empower patients and caregivers in PI care. Investing in preventive measures and raising awareness are crucial to reducing PI incidence. The findings have implications for HCPs and researchers seeking to enhance patient care and promote effective PI prevention strategies.

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.

Mobile Technology-Based Interventions for Stroke Self-Management Support: Scoping Review.

BACKGROUND: There is growing interest in enhancing stroke self-management support using mobile health (mHealth) technology (eg, smartphones and apps). Despite this growing interest, "self-management support" is inconsistently defined and applied in the poststroke mHealth intervention literature, which limits efforts to synthesize and compare evidence. To address this gap in conceptual clarity, a scoping review was conducted. OBJECTIVE: The objectives were to (1) identify and describe the types of poststroke mHealth interventions evaluated using a randomized controlled trial design, (2) determine whether (and how) such interventions align with well-accepted conceptualizations of self-management support (the theory by Lorig and Holman and the Practical Reviews in Self-Management Support [PRISMS] taxonomy by Pearce and colleagues), and (3) identify the mHealth functions that facilitate self-management. METHODS: A scoping review was conducted according to the methodology by Arksey and O'Malley and Levac et al. In total, 7 databases were searched. Article screening and data extraction were performed by 2 reviewers. The data were analyzed using descriptive statistics and content analysis. RESULTS: A total of 29 studies (26 interventions) were included. The interventions addressed 7 focal areas (physical exercise, risk factor management, linguistic exercise, activities of daily living training, medication adherence, stroke education, and weight management), 5 types of mobile devices (mobile phones or smartphones, tablets, wearable sensors, wireless monitoring devices, and laptops), and 7 mHealth functions (educating, communicating, goal setting, monitoring, providing feedback, reminding, and motivating). Collectively, the interventions aligned well with the concept of self-management support. However, on an individual basis (per intervention), the alignment was less strong. CONCLUSIONS: On the basis of the results, it is recommended that future research on poststroke mHealth interventions be more theoretically driven, more multidisciplinary, and larger in scale.

The stroke transitional care intervention for older adults with stroke and multimorbidity: a multisite pragmatic randomized controlled trial.

BACKGROUND: This study aimed to test, in real-world clinical practice, the effectiveness of a Transitional Care Stroke Intervention (TCSI) compared to usual care on health outcomes, self-management, patient experience, and health and social service use costs in older adults (≥ 55 years) with stroke and multimorbidity (≥ 2 chronic conditions). METHODS: This pragmatic randomized controlled trial (RCT) included older adults discharged from hospital to community with stroke and multimorbidity using outpatient stroke rehabilitation services in two communities in Ontario, Canada. Participants were randomized 1:1 to usual care (control group) or usual care plus the 6-month TCSI (intervention group). The TCSI was delivered virtually by an interprofessional (IP) team, and included care coordination/system navigation support, phone/video visits, monthly IP team conferences, and an online resource to support system navigation. The primary outcome was risk of hospital readmission (all cause) after six-months. Secondary outcomes included physical and mental functioning, stroke self-management, patient experience, and health and social service use costs. The intention-to-treat principle was used to conduct the primary and secondary analyses. RESULTS: Ninety participants were enrolled (44 intervention, 46 control); 11 (12%) participants were lost to follow-up, leaving 79 (39 intervention, 40 control). No significant between-group differences were seen for baseline to six-month risk of hospital readmission. Differences favouring the intervention group were seen in the following secondary outcomes: physical functioning (SF-12 PCS mean difference: 5.10; 95% CI: 1.58-8.62, p = 0.005), stroke self-management (Southampton Stroke Self-Management Questionnaire mean difference: 6.00; 95% CI: 0.51-11.50, p = 0.03), and patient experience (Person-Centred Coordinated Care Experiences Questionnaire mean difference: 2.64, 95% CI: 0.81, 4.47, p = 0.005). No between-group differences were found in total healthcare costs or other secondary outcomes. CONCLUSIONS: Although participation in the TCSI did not impact hospital readmissions, there were improvements in physical functioning, stroke self-management and patient experience in older adults with stroke and multimorbidity without increasing total healthcare costs. Challenges associated with the COVID-19 pandemic, including the shift from in-person to virtual delivery, and re-deployment of interventionists could have influenced the results. A larger pragmatic RCT is needed to determine intervention effectiveness in diverse geographic settings and ethno-cultural populations and examine intervention scalability. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04278794 . Registered May 2, 2020.

What matters to program partners when implementing a community-based exercise program for people post-stroke? A theory-based qualitative study and cost analysis.

Background: Community-based exercise programs integrating a healthcare-community partnership (CBEP-HCP) can facilitate lifelong exercise participation for people post-stroke. Understanding the process of implementation from multiple perspectives can inform strategies to promote program sustainability. Purpose: To explore stakeholders' experiences with undertaking first-time implementation of a group, task-oriented CBEP-HCP for people post-stroke and describe associated personnel and travel costs. Methods: We conducted a descriptive qualitative study within a pilot randomized controlled trial. In three cities, trained fitness instructors delivered a 12-week CBEP-HCP targeting balance and mobility limitations to people post-stroke at a recreation centre with support from a healthcare partner. Healthcare and recreation managers and personnel at each site participated in semi-structured interviews or focus groups by telephone post-intervention. Interviews and data analysis were guided by the Consolidated Framework of Implementation Research and Theoretical Domains Framework, for managers and program providers, respectively. We estimated personnel and travel costs associated with implementing the program. Results: Twenty individuals from three sites (4 recreation and 3 healthcare managers, 7 fitness instructors, 3 healthcare partners, and 3 volunteers) participated. We identified two themes related to the decision to partner and implement the program: (1) Program quality and packaging, and cost-benefit comparisons influenced managers' decisions to partner and implement the CBEP-HCP, and (2) Previous experiences and beliefs about program benefits influenced staff decisions to become instructors. We identified two additional themes related to experiences with training and program delivery: (1) Program staff with previous experience and training faced initial role-based challenges that resolved with program delivery, and (2) Organizational capacity to manage program resource requirements influenced managers' decisions to continue the program. Participants identified recommendations related to partnership formation, staff/volunteer selection, training, and delivery of program activities. Costs (in CAD) for first-time program implementation were: healthcare partner ($680); fitness coordinators and instructors ($3,153); and participant transportation (personal vehicle: $283; public transit: $110). Conclusion: During first-time implementation of a CBEP-HCP, healthcare and hospital managers focused on cost, resource requirements, and the added-value of the program, while instructors and healthcare partners focused on their preparedness for the role and their ability to manage individuals with balance and mobility limitations. Trial Registration: ClinicalTrials.gov, NCT03122626. Registered April 17, 2017-Retrospectively registered, https://www.clinicaltrials.gov/ct2/show/NCT03122626.

Stroke Experiences and Unmet Needs of Individuals of African Descent Living in High-Income Economy Countries: a Qualitative Meta-Synthesis.

BACKGROUND: Stroke service disparities experienced by individuals of African descent highlight the need to optimize services. While qualitative studies have explored participants' unique experiences and service needs, a comprehensive synthesis is lacking. To address current knowledge gaps, this review aimed to synthesize existing literature on the experiences of individuals of African descent impacted by a stroke living in high-income economy countries in terms of stroke prevention, management, and care. METHODS: A qualitative meta-synthesis incorporating a meta-study approach was conducted to obtain comprehensive and interpretive insights on the study topic. Four databases were searched to identify qualitative English-language studies published in the year 2022 or earlier on the experiences of adults of African descent who were at risk or impacted by a stroke and living in high-income economy countries. Study methods, theory, and data were analyzed using descriptive and interpretive analyses. RESULTS: Thirty-seven studies met our inclusion criteria, including 29 journal articles and 8 dissertations. Multiple authors reported recruitment as a key challenge in study conduct. Multiple existing theories and frameworks of health behaviours, beliefs, self-efficacy, race, and family structure informed research positionality, questions, and analysis across studies. Participant experiences were categorized as (1) engagement in stroke prevention activities and responses to stroke symptoms, (2) self-management and self-identity after stroke, and (3) stroke care experiences. CONCLUSIONS: This study synthesizes the experiences and needs of individuals of African descent impacted by stroke. Findings can help tailor stroke interventions across the stroke care continuum, as they suggest the need for intersectional and culturally humble care approaches.

Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review.

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

Conditions and strategies influencing sustainability of a community-based exercise program incorporating a healthcare-community partnership for people with balance and mobility limitations in Canada: A collective case study of the Together in Movement and Exercise (TIME™) program.

Background: Community-based exercise programs delivered through healthcare-community partnerships (CBEP-HCPs) are beneficial to individuals with balance and mobility limitations. For the community to benefit, however, these programs must be sustained over time. Purpose: To identify conditions influencing the sustainability of CBEP-HCPs for people with balance and mobility limitations and strategies used to promote sustainability based on experiences of program providers, exercise participants, and caregivers. Methods: Using a qualitative collective case study design, we invited stakeholders (program providers, exercise participants, and caregivers) from sites that had been running a CBEP-HCP for people with balance and mobility limitations for ≥4 years; and sites where the CBEP-HCP had been discontinued, to participate. We used two sustainability models to inform development of interview guides and data analysis. Qualitative data from each site were integrated using a narrative approach to foster deeper understanding of within-organization experiences. Results: Twenty-nine individuals from 4 sustained and 4 discontinued sites in Ontario (n = 6) and British Columbia (n = 2), Canada, participated. Sites with sustained programs were characterized by conditions such as need for the program in the community, presence of secure funding or cost recovery mechanisms, presence of community partners, availability of experienced and motivated instructors, and the capacity to allocate resources towards program marketing and participant recruitment. For sites where programs discontinued, diminished participation and/or enrollment and an inability to allocate sufficient financial, human, and logistical resources towards the program affected program continuity. Participants from discontinued sites also identified issues such as staff with low motivation and limited experience, and presence of competing programs within the organization or the community. Staff associated the absence of referral pathways, insufficient community awareness of the program, and the inability to recover program cost due to poor participation, with program discontinuation. Conclusion: Sustainability of CBEP-HCPs for people with balance and mobility limitations is influenced by conditions that exist during program implementation and delivery, including the need for the program in the community, and organization and community capacity to bear the program's financial and resource requirements. Complex interactions among these factors, in addition to strategies employed by program staff to promote sustainability, influence program sustainability.

A Narrative Inquiry Into the Lived Experiences of the Oldest-Old Caregivers and How These Are Shaped by Age and Aging.

BACKGROUND AND OBJECTIVES: Oldest-old (80+) spousal caregivers of people with dementia are a fast-growing, highly vulnerable, and poorly understood population. As oldest-old individuals, these caregivers have a high likelihood of experiencing aging-related changes (e.g., frailty and multimorbidity) that result in unique caregiving experiences and support needs. Specialized interventions, sensitive to caregivers' age- and aging-related experiences and needs, may be required to provide adequate support to this group. To date, this group has received limited attention in the literature. Thus, the purpose of this study was to elucidate how age and aging shape the experiences of oldest-old spousal caregivers of people with dementia. RESEARCH DESIGN AND METHODS: We used a narrative gerontology approach, with 2-3 semistructured interviews with 11 caregivers ages 80-89 (25 interviews in total). We analyzed narrative data thematically. RESULTS: We identified 4 main themes representing caregivers' perceptions of age or aging: aging as decline, aging as life experience, doings in older age, and older age as perceived by others. Our results illustrate a breadth of age- and aging-related caregiving experiences stemming from each perception. DISCUSSION AND IMPLICATIONS: This study provides insight into the particular experiences of oldest-old spousal caregivers of people with dementia and provides a foundation for critical future research that will continue to explore the experiences of this unique and fast-growing caregiving group. A more nuanced understanding of this caregiving subgroup is needed to develop age-sensitive health and social care services to meet their needs and, ultimately, improve their well-being and that of their spouses.

Conceptualization of frailty in rehabilitation interventions with adults: a scoping review.

Purpose: We aimed to synthesize the literature that considered frailty in the evaluation of rehabilitation interventions for adults (aged ≥18) by answering: (1) how is frailty defined in rehabilitation intervention research?; (2) how is frailty operationalized in rehabilitation intervention research?; (3) what are the characteristics of rehabilitation interventions for frail adults and what frailty related outcomes are assessed?Materials and methods: A scoping review was conducted. Data were analyzed using descriptive statistics and qualitative content analysis.Results: 53 articles met the inclusion criteria. Most studies were conducted in Europe and involved randomized control trials. The included studies reported on rehabilitation interventions that only included individuals aged 50 or older. Thirteen studies used Fried's definition of frailty, but most (n = 27) did not use any definition. Many studies did not differentiate between the conceptualization (e.g., definition) and operationalization (e.g., use of inclusion/exclusion criteria, outcome measures) of frailty. Most interventions focused on exercise. Instrumental activities of daily living reported most frequently as outcomes (n = 11).Conclusions: There is an absence of consistent definitions of frailty in rehabilitation interventions and current definitions tend to focus on physical functioning. The authors suggest rehabilitation researchers consider an expanded definition of frailty informed by the International Classification of Functioning, Disability and Health framework.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals should use an expanded definition of frailty, informed by the International Classification of Functioning, Disability and Health framework, should include physical, mental, personal, environmental, and social factors to decrease, delay, or prevent frailty in adults.Rehabilitation professionals should consider a broader operationalization of frailty that is not dependent on age and physical functioning.Rehabilitation professionals that consider a broader conceptualization of frailty should tailor interventions to the specific needs of frail 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.

Association Between Tracheostomy and Functional, Neuropsychological, and Healthcare Utilization Outcomes in the RECOVER Cohort.

Tracheostomy is commonly performed in critically ill patients requiring prolonged mechanical ventilation (MV). We evaluated the outcomes of tracheostomy in patients who received greater than or equal to 1 week MV and were followed for 1 year. DESIGN: In this secondary analysis of a prospective observational study, we compared outcomes in tracheostomy versus nontracheostomy patients. Outcomes post ICU included Functional Independence Measure (FIM) subscales, 6-Minute Walk Test (6MWT), Short Form 36 (SF36), Medical Research Council (MRC) Scale, pulmonary function tests (PFTs), Impact of Event Scale (IES), Beck Depression Inventory-II (BDI-II), and vital status and disposition. SETTING: Nine University affiliated ICUs in Canada. PATIENTS: Medical/surgical patients requiring MV for 7 or more days who were enrolled in the Towards RECOVER Study. MEASUREMENTS AND MAIN RESULTS: Of 398 ICU survivors, 193 (48.5%) received tracheostomy, on median ICU day 14 (interquartile range [IQR], 8-0 d). Patients with tracheostomy were older, had similar severity of illness, had longer MV duration and ICU and hospital stays, and had higher risk of ICU readmission (odds ratio [OR], 1.9; 95% CI, 1.0-3.2) and hospital mortality (OR, 2.6; 95% CI, 1.1-6.1), but not 1-year mortality (hazard ratio, 1.41; 95% CI, 0.88-1.2). Over 1 year, tracheostomy patients had lower FIM-Total (7.7 points; 95% CI, 2.2-13.2); SF36, IES, and BDI-II were similar. From 3 months, tracheostomy patients had 12% lower 6MWT (p = 0.0008) and lower MRC score (3.4 points; p = 0.006). Most PFTs were 5-8% lower in the tracheostomy group. Tracheostomy patients had similar specialist visits (rate ratio, 0.63; 95% CI, 0.28-2.4) and hospital readmissions (OR, 0.82; 95% CI, 0.54-1.3) but were less likely to be at home at hospital discharge and 1 year. CONCLUSIONS: Patients who received tracheostomy had more ICU and hospital care and higher hospital mortality compared with patients who did not receive a tracheostomy. In 1 year follow-up, tracheostomy patients required a higher daily burden of care, expressed by FIM.

A qualitative study exploring family caregivers' support needs in the context of medical assistance in dying.

OBJECTIVES: Family members are often involved in the provision of care to a relative at some point in their life. Their role becomes inherently complex when their care recipient is interested in seeking medical assistance in dying (MAID). As assisted death for "grievous and irremediable conditions" was legalized in Canada in 2016, the perspectives of family caregivers have received little attention. To best support caregivers to individuals seeking assisted dying, healthcare practitioners must first understand the perspectives of family caregivers in this context. The objective of this qualitative study was to explore the experiences and support needs of family caregivers who are or who have provided care to individuals who are seeking or have sought MAID. METHODS: This study employed a qualitative descriptive design. Family caregivers supporting individuals living with grievous and irremediable conditions were recruited through social media outlets and support organizations. Data were collected through semi-structured telephone interviews and online surveys. Data were transcribed and analyzed using thematic analysis. RESULTS: The study included 11 participants, comprising spouses, parents, and adult children. The research identified three prevalent themes: the caregiver experience including roles and responsibilities and the impact of their role; the MAID experience including the process and their thoughts and feelings about MAID; and caregiver insight into supports and services viewed as valuable or needed for the MAID process. SIGNIFICANCE OF RESULTS: Study findings may assist in the provision and development of best practice resources and guidelines to support healthcare professionals involved in the delivery of MAID. Specifically, caregivers need to be supported in the context of their caregiving responsibilities to minimize the impact on their own lives and optimize their MAID experience.

Community-based exercise programs incorporating healthcare-community partnerships to improve function post-stroke: feasibility of a 2-group randomized controlled trial.

BACKGROUND: Despite the potential for community-based exercise programs supported through healthcare-community partnerships (CBEP-HCPs) to improve function post-stroke, insufficient trial evidence limits widespread program implementation and funding. We evaluated the feasibility and acceptability of a CBEP-HCP compared to a waitlist control group to improve everyday function among people post-stroke. METHODS: We conducted a 3-site, pilot randomized trial with blinded follow-up evaluations at 3, 6, and 10 months. Community-dwelling adults able to walk 10 m were stratified by site and gait speed and randomized (1:1) to a CBEP-HCP or waitlist control group. The CBEP-HCP involved a 1-h, group exercise class, with repetitive and progressive practice of functional balance and mobility tasks, twice a week for 12 weeks. We offered the exercise program to the waitlist group at 10 months. We interviewed 13 participants and 9 caregivers post-intervention and triangulated quantitative and qualitative results. Study outcomes included feasibility of recruitment, interventions, retention, and data collection, and potential effect on everyday function. RESULTS: Thirty-three people with stroke were randomized to the intervention (n = 16) or waitlist group (n = 17). We recruited 1-2 participants/month at each site. Participants preferred being recruited by a familiar healthcare professional. Participants described a 10- or 12-month wait in the control group as too long. The exercise program was implemented per protocol across sites. Five participants (31%) in the intervention group attended fewer than 50% of classes for health reasons. In the intervention and waitlist group, retention was 88% and 82%, respectively, and attendance at 10-month evaluations was 63% and 71%, respectively. Participants described inclement weather, availability of transportation, and long commutes as barriers to attending exercise classes and evaluations. Among participants in the CBEP-HCP who attended ≥ 50% of classes, quantitative and qualitative results suggested an immediate effect of the intervention on balance, balance self-efficacy, lower limb strength, everyday function, and overall health. CONCLUSION: The CBEP-HCP appears feasible and potentially beneficial. Findings will inform protocol revisions to optimize recruitment, and program and evaluation attendance in a future trial. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03122626 . Registered April 21, 2017 - retrospectively registered.

Exploring the poststroke experiences and unmet needs of South Asian communities in high-income countries: a scoping review protocol.

INTRODUCTION: South Asian groups experience a higher burden of stroke and poorer functional outcomes after stroke than their White counterparts. However, within the stroke literature, there has been little focus on the unique poststroke needs of the South Asian community and opportunities for community-based services to address these needs. RESEARCH QUESTION: What is the current knowledge base related to the experiences and needs, including unmet needs of people living with stroke and their caregivers from South Asian communities living in high-income countries? AIMS: This is a protocol for a review that intends to synthesise existing studies of the poststroke experiences and needs of individuals from South Asian communities to uncover opportunities for community-based resources to address these needs. METHODS AND ANALYSIS: This scoping review methodology will be guided by modified Arksey and O'Malley (2005) and Joanna Briggs Institute frameworks. A search on OVID Medline, OVID Embase, OVID PsycINFO, EBSCO CINAHL, the Cochrane Library, Scopus and Global Index Medicus will be conducted to synthesise existing peer-reviewed literature (all study designs). Grey literature will be searched through detailed hand searching. Literature focusing on the poststroke experiences and needs of South Asian groups impacted by stroke residing in high-income countries will be included. Study descriptors will be extracted (eg, study location, type, methodology). Data will be analysed descriptively and thematically. Team meetings will provide opportunities for peer debriefing, thereby enhancing analytic rigour. CONCLUSION AND IMPLICATIONS: Findings will enhance knowledge of the poststroke experiences and needs of South Asian communities living in high-income countries and identify actionable opportunities for community-based resources to address needs. ETHICS AND DISSEMINATION: Ethics approval was not required for this scoping review protocol. Community-based organisations will be consulted to provide insights into the analysis and assist with dissemination. Dissemination of findings will also occur through a publication and academic presentations.

Brothers and sisters sharing in the care of a parent with dementia.

Brothers' and sisters' experiences providing care to a parent with dementia differ, but little is known about how mixed-gender siblings share their caregiving responsibilities or how sharing affects their relationship. This study aimed to explore mixed-gender siblings processes for distributing caregiving tasks when caring for a parent with dementia and the impact of sharing care on their relationship. This descriptive qualitative study recruited fourteen English-speaking mixed-gender sibling pairs caring for a parent with dementia. Online open-ended surveys and individual semi-structured interviews were completed. Interviews and surveys explored division of caregiving responsibilities, conflict resolution, and the effects of sharing care on sibling relationships. Thematic analysis was used to analyze the qualitative data. Five themes were identified: goal of shared caregiving is to meet parents' needs, sisters often take the lead, practical issues affect sharing of caregiving activities, personal resources or skills affect division of responsibilities, and shared caregiving influences relationship quality. Understanding how siblings share caregiving responsibilities can inform the practices of healthcare professionals who care for people with dementia and their family caregivers.

Perceptions of Digital Technology Experiences and Development Among Family Caregivers and Technology Researchers: Qualitative Study.

BACKGROUND: Caregiving is highly stressful and is associated with poor mental and physical health. Various technologies, including mobile and eHealth apps, have been developed to address caregiver needs. However, there is still a paucity of research examining the technology perceptions of informal caregivers, especially from the perspectives of sex, gender, and diversity. OBJECTIVE: To address the research gap and inform the development of future caregiving technologies, this study aims to examine how family caregivers perceive using technology to assist with their caregiving routines; identify the sex, gender, and diversity factors that shape these perceptions; and understand how these perceptions and needs are reflected within the current technology development process. METHODS: Semistructured interviews were conducted with 16 informal caregivers of individuals with a range of chronic medical conditions and 8 technology researchers involved in caregiving technology projects. RESULTS: Three main themes with subthemes were developed. The first main theme is that caregivers see a need for technology in their lives, and it comprises the following 3 subthemes: caregiving is a challenging endeavor, technology is multifaceted, and caregiver preferences facilitate technology use. The second main theme is that relationships play a vital role in mediating technology uptake, and it comprises the following 2 subthemes: the caregiver-care recipient dynamic shapes technology perceptions and caregivers rely on external sources for technology information. Finally, the third main theme is that barriers are present in the use and adoption of technology, and it comprises the following 2 subthemes: technology may not be compatible with personal values and abilities and technology that is not tailored toward caregivers lacks adoption. CONCLUSIONS: The findings highlight the multifaceted role that technology can play in aiding caregiving while drawing attention to the perceived drawbacks of these technologies among caregivers. The inclusion of technology researchers in this study provides a more holistic understanding of technologies in caregiving from their initial development to their eventual uptake by caregivers.