Outcomes Among Mexican American and Non-Hispanic White Informal Stroke Caregivers.

BACKGROUND: Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. METHODS: Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. RESULTS: Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (ß, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (ß, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (ß, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (ß, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. CONCLUSIONS: Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.

Caring for Stroke Survivors: Ethnic Differences in Informal Caregiver Needs Among Mexican American and Non-Hispanic White Communities.

BACKGROUND: After stroke, Mexican American (MA) individuals have worse 90-day neurological, functional, cognitive, and quality of life outcomes and a higher prevalence of poststroke depression compared with non-Hispanic White (NHW) individuals. MA individuals receive more help through informal, unpaid caregiving than NHW individuals. We examined ethnic differences in needs identified by MA and NHW stroke caregivers. METHODS: Caregivers were identified from the population-based BASIC study (Brain Attack Surveillance in Corpus Christi) in Nueces County, Texas from October 2019 to November 2021. Responses to the Caregiver Needs and Concerns Checklist were collected at 90-day poststroke to assess caregiver needs. Using the cross-sectional sample, prevalence scores and bivariate analyses were used to examine ethnic differences between Caregiver Needs and Concerns Checklist items. Linear regression was used to examine adjusted associations of ethnicity with the total average needs for each domain. Models were adjusted for patient and caregiver age and sex, caregiver education level, and employment status, patient insurance status, prestroke function, cognitive status, language, and functional outcome at 90 days, intensity and duration of caregiving, presence of other caregivers (paid/unpaid), and cohabitation of patient and caregiver. RESULTS: A total of 287 were approached, and 186 stroke caregivers were included with a median age of 54.2 years and 80.1% being women caregivers: 74.3% MA and 25.7% NHW individuals. MA caregivers had significantly lower education (

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.

"If you respect me, you are respecting my culture": methods and recommendations for personalizing a TBI transitional care intervention.

OBJECTIVE: Despite research, national legislation, and clinical guidelines supporting transitional care, there is minimal benefit from existing transitional care interventions for racial/ethnic minorities with traumatic brain injury (TBI) discharged home from acute hospital care. Existing TBI transitional care interventions are not tailored to address the needs/preferences of patients from various racial/ethnic minority groups. The purpose of this study was to describe use of personalization to tailor a TBI transitional care intervention for various racial/ethnic groups. DESIGN: Following preliminary intervention manual development, a qualitative descriptive study was conducted using eight focus groups with 40 English-and Spanish-speaking participants (12 patients, 12 caregivers, and 16 providers). RESULTS: Three personalization-related themes emerged: 1) what is important to me, 2) finding someone to deliver the intervention who can adapt to my needs, and 3) respect over culture. Findings informed personalization strategies within our final manual. CONCLUSIONS: We recommend researchers who wish to use personalization to tailor interventions to consider: 1) allowing stakeholders to dictate what is most important and 2) implementing an iterative intervention development process with input from diverse stakeholders. Findings have implications for informing the development of transitional care interventions to increase the likelihood that interventions are inclusive of needs and preferences of various races/ethnicities.

Clinical Performance Measures for Stroke Rehabilitation: Performance Measures From the American Heart Association/American Stroke Association.

The American Heart Association/American Stroke Association released the adult stroke rehabilitation and recovery guidelines in 2016. A working group of stroke rehabilitation experts reviewed these guidelines and identified a subset of recommendations that were deemed suitable for creating performance measures. These 13 performance measures are reported here and contain inclusion and exclusion criteria to allow calculation of rates of compliance in a variety of settings ranging from acute hospital care to postacute care and care in the home and outpatient setting.

Implementation of Complex Interventions: Lessons Learned From the Patient-Centered Outcomes Research Institute Transitional Care Portfolio.

BACKGROUND: Despite the well-documented risks to patient safety associated with transitions from one care setting to another, health care organizations struggle to identify which interventions to implement. Multiple strategies are often needed, and studying the effectiveness of these complex interventions is challenging. OBJECTIVE: The objective of this study was to present lessons learned in implementing and evaluating complex transitional care interventions in routine clinical care. RESEARCH DESIGN: Nine transitional care study teams share important common lessons in designing complex interventions with stakeholder engagement, implementation, and evaluation under pragmatic conditions (ie, using only existing resources), and disseminating findings in outlets that reach policy makers and the people who could ultimately benefit from the research. RESULTS: Lessons learned serve as a guide for future studies in 3 areas: (1) Delineating the function (intended purpose) versus form (prespecified modes of delivery of the intervention); (2) Evaluating both the processes supporting implementation and the impact of adaptations; and (3) Engaging stakeholders in the design and delivery of the intervention and dissemination of study results. CONCLUSION: These lessons can help guide future pragmatic studies of care transitions.

Experiences of Family Caregivers After an Acute Neurological Event.

BACKGROUND: Family of patients hospitalized in an intensive care unit (ICU) often immediately assume the role of caregiver to an individual with significant health care needs. The transition into this caregiver role may be sudden and unexpected; their experiences are not well understood. The purpose of this qualitative study was to explore experiences of family caregivers in the neurocritical care unit in order to identify areas for enhancing patient- and family-centered care. METHODS: This single-center ethnographic study explored the use of systems theory to investigate the perceptions, experiences, and attitudes of family/caregivers regarding their relationships and interactions between the patient, other family, members of the healthcare provider team, and health system after an acute neurological event in Argentina. Field notes from 9 weeks of direct observation together with transcripts from nine semi-structured interviews (transcribed verbatim and translated from Spanish to English) were analyzed using a grounded theory approach. RESULTS: Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el tratohumano, and finding unity in purpose. In the neurocritical care environment, an important intermediary role exists for family/caregivers and the patient, other family, and healthcare providers. CONCLUSIONS: The results demonstrate the potential for family, providers, and the health system to influence family/caregivers' experience with neurocritical care. Involving families as part of the care team could have implications for patient- and family-centered care.

Socio-ecological perspective on factors influencing acute recovery of younger stroke survivors: A mixed methods study.

AIMS: Stroke is affecting an increasing number of young and middle-aged adults. Given the substantial diversion from anticipated life trajectories that younger stroke survivors experience as a result of their stroke deficits, their health-related quality of life (HRQOL) is likely to be negatively impacted during the immediate post-acute recovery period. The aim of this study was to generate a comprehensive understanding of the influences on HRQOL and acute recovery during the first three months following stroke for younger adults using a socio-ecological perspective. DESIGN: Longitudinal, convergent mixed methods design. METHODS: HRQOL survey data, assessed using the Patient Generated Index (N = 31), and qualitative interview data about survivors' recovery experiences (N = 20) were collected. Simple linear regression and effect size results were integrated with themes and sub-themes identified from conventional content analysis using joint data displays. RESULTS: Depression and fatigue negatively affected recovery at the individual level. At the family and societal level, family functioning, social support including being married, having insurance, working, adequate income and being unemployed post-stroke all positively impacted recovery. Qualitative findings revealed determination, coping, and accessing healthcare to positively affect recovery though a meta-inference could not be drawn as no quantitative data addressed these concepts. CONCLUSION: A variety of factors intersecting across socio-ecological levels were perceived by young stroke survivors to influence acute recovery experiences and outcomes. IMPACT: This study identified individual-, family- and societal-level factors in younger adults' environments that may affect the acute stroke recovery experience. Findings underscore the need for research and clinical approaches that consider environmental factors at multiple levels of influence when supporting stroke recovery for younger adults.

Recovery experiences of younger stroke survivors who are parents: A qualitative content analysis.

AIMS AND OBJECTIVES: To explore the experience of parenting for younger stroke survivors (aged 18 to 64 years at the time of the stroke). BACKGROUND: Stroke among younger adults increased 43% between 2000 and 2010. The social, emotional and physical functioning of younger adults affects multiple aspects of their lives including parenting. There is limited research on the experience of parenting after stroke. DESIGN: This is a qualitative descriptive study. METHODS: We conducted individual semi-structured interviews with 10 younger adults who were actively parenting children under the age of 18 years at the time of stroke. Conventional content analysis was used to analyse the data. We report the methods and results using the COREQ checklist. RESULTS: Impairments from stroke disrupted participants' identity, relationships and roles as a parent. The degree to which parenting abilities and behaviours were affected by stroke was contingent upon the type and severity of impairments as well as the children's age. Participants also observed emotional and behavioural changes in their children in response to their stroke. Support from family, friends, healthcare providers and children's school/day care was crucial to participants throughout their stroke recovery. Two major themes emerged: (a) finding a new normal; and (b) support for parenting post-stroke. CONCLUSIONS: Findings enable a deeper understanding of the distinct parenting challenges younger stroke survivors face and can inform future research on this population. RELEVANCE FOR CLINICAL PRACTICE: Study findings highlight the need for continual and tailored follow-up by nurses and other allied healthcare professionals to decrease the difficulty stroke survivors experience when trying to resume their role as parents.

Caregiver-Delivered Stroke Rehabilitation in Rural China.

Background and Purpose- Stroke disability is a major health burden in rural China where rehabilitation services are inadequate. We aimed to determine the effectiveness of a novel nurse-led, caregiver-delivered model of stroke rehabilitation in rural China. Methods- A multicenter prospective, randomized open, blinded outcome assessed, controlled trial was conducted in 3 rural county hospitals in China: Zhangwu, Liaoning Province (Northeast); Qingtongxia, Ningxia Hui Autonomous Region (Northwest); and Dianjiang, Chongqing Municipality (Southwest). Adult patients (age 18-79 years) with residual disability (Barthel Index score ≤80/100) after a recent acute stroke were randomized to a new service model or usual care. The new intervention was multifaceted and was based on a task-shifting / training-the-trainers model, supported by a custom-designed smartphone application, where patients and caregivers received evidence-based in-hospital education and stroke rehabilitation training (focus on mobility, self-care, and toileting), delivered by trained nurses before hospital discharge, and 3 postdischarge support telephone calls. Outcome assessments were undertaken before hospital discharge and at 3 and 6 months. Primary outcome was physical functioning (Barthel Index scores) at 6 months, assessed by research staff blind to treatment allocation, adjusted for baseline covariates in an intention-to-treat analysis. Secondary outcomes included measures of mobility, health-related quality of life, mood, and caregiver burden. The study included a process evaluation that assessed intervention fidelity. Results- From November 2014 to December 2016, 246 stroke patients were randomized to intervention (n=118) or control (n=128) groups. There was no statistically significant difference in adjusted 6-month Barthel Index scores between groups (70.1 versus 74.1, mean difference, -4.0 [95% CI, -10.0 to 2.9]), nor any differences across the other outcome measures. Process evaluation interviews revealed that the intervention was desirable and positively accepted by nurses, caregivers, and patients but was considered too complex despite efforts to simplify materials for the rural context. Key strategies identified for future studies included the use of community health workers, smartphone application enhancement, and simpler and more frequent training for nurses, caregivers, and patients. Conclusions- A novel nurse-led, digital supported, caregiver-delivered stroke rehabilitation program did not improve patient physical functioning after stroke in rural China. Further stroke rehabilitation research suitable for resource-poor settings is required, with several components being suggested through stakeholder interviews in our study. Clinical Trial Registration- URL: https://www.clinicaltrials.gov . Unique identifier: NCT02247921.

Health Services Research in Rehabilitation and Disability-The Time is Now.

Policy drives practice, and health services research (HSR) is at the intersection of policy, practice, and patient outcomes. HSR specific to rehabilitation and disability is particularly needed. As rehabilitation researchers and providers, we are uniquely positioned to provide the evidence that guides reforms targeting rehabilitative care. We have the expertise to define the value of rehabilitation in a policy-relevant context. HSR is a powerful tool for providing this evidence. We need to continue building capacity for conducting rigorous, timely rehabilitation-related HSR. Fostering stakeholder engagement in these research efforts will ensure we maintain a patient-centered focus as we address the "Triple Aim" of better care, better health, and better value. In this Special Communication we discuss the role of rehabilitation researchers in HSR. We also provide information on current resources available in our field for conducting HSR and identify gaps for capacity building and future research. Health care reforms are a reality, and through HSR we can give rehabilitation a strong voice during these transformative times.

Depression and Functional Status Among African American Stroke Survivors in Inpatient Rehabilitation.

PURPOSE: To examine the prevalence of poststroke depression (PSD) among African American stroke survivors and the association of depression with functional status at inpatient rehabilitation facility (IRF) discharge. METHODS: Secondary data analysis was conducted of a patient cohort who received care at 3 IRFs in the United States from 2009 to 2011. Functional status was measured by the Functional Independence Measure (FIM). Multiple linear regression models were used to examine associations of PSD and FIM motor and cognitive scores. RESULTS: Of 458 African American stroke survivors, 48.5% were female, 84% had an ischemic stroke, and the mean age was 60.8 ± 13.6 years. Only 15.4% (n = 71) had documentation of PSD. Bivariate analyses to identify factors associated with depression identified a higher percentage of patients with depression than without who were retired due to disability (17.1% versus 11.6%) or employed (31.4% versus 19.6%) prestroke (P = .041). Dysphagia, cognitive deficits, and a lower admission motor FIM score were also significantly more common among those with depression. There was no significant relationship between depression and functional status after adjusting for patient characteristics. CONCLUSIONS: In this study, 15% of the African Americans who received rehabilitation after a stroke had documentation of PSD but this was not associated with functional status at discharge.

Assessment of Home-Time After Acute Ischemic Stroke in Medicare Beneficiaries.

BACKGROUND AND PURPOSE: Stroke survivors have identified home-time as a meaningful outcome. We evaluated home-time as a patient-centered outcome in Medicare beneficiaries with ischemic stroke in comparison with modified Rankin Scale (mRS) score at 90 days and at 1 year post event. METHODS: Patients enrolled in Get With The Guidelines-Stroke (GWTG-Stroke) and Adherence Evaluation After Ischemic Stroke-Longitudinal (AVAIL) registries were linked to Medicare claims to ascertain home-time, defined as time spent alive and out of a hospital, inpatient rehabilitation, or skilled nursing facilities, at 90 days and at 1 year after admission. The correlation of home-time with mRS at 90 days and at 1 year was evaluated by Pearson correlation coefficients, and the ability of home-time to discriminate mRS (0-2) was assessed by c-index. RESULTS: There were 815 patients with ischemic stroke (age median, 76 years [interquartile range {IQR}, 70-82]; 46% women; National Institutes of Health Stroke Scale median, 4 [IQR, 2-7]) from 88 hospitals. The 90-day and 1-year median home-times were 79 (IQR, 52-86) days and 349 (IQR, 303-360) days and median mRS were 2 (IQR, 1-4) and 2 (IQR, 1-4). Greater home-time within 90 days was significantly correlated with lower 90-day mRS (Pearson correlation coefficient, -0.731; P<0.0001) and showed strong ability to discriminate functional independence with mRS 0 to 2 (c-index, 0.837). Similar findings were observed at 1 year. CONCLUSIONS: In a population of older patients with ischemic stroke, home-time was readily available from administrative data and associated with mRS at 90 days and 1 year. Home-time represents a novel, easily measured, patient-centered, outcome measure for an episode of stroke care.

Hospital Variation in Home-Time After Acute Ischemic Stroke: Insights From the PROSPER Study (Patient-Centered Research Into Outcomes Stroke Patients Prefer and Effectiveness Research).

BACKGROUND AND PURPOSE: Stroke survivors identify home-time as a high-priority outcome; there are limited data on factors influencing home-time and home-time variability among discharging hospitals. METHODS: We ascertained home-time (ie, time alive out of a hospital, inpatient rehabilitation facility, or skilled nursing facility) at 90 days and 1-year post discharge by linking data from Get With The Guidelines-Stroke Registry patients (≥65 years) to Medicare claims. Using generalized linear mixed models, we estimated adjusted mean home-time for each hospital. Using linear regression, we examined associations between hospital characteristics and risk-adjusted home-time. RESULTS: We linked 156 887 patients with ischemic stroke at 989 hospitals to Medicare claims (2007-2011). Hospital mean home-time varied with an overall unadjusted median of 59.5 days over the first 90 days and 270.2 days over the first year. Hospital factors associated with more home-time over 90 days included higher annual stroke admission volume (number of ischemic stroke admissions per year); South, West, or Midwest geographic regions (versus Northeast); and rural location; 1-year patterns were similar. Lowest home-time quartile patients (versus highest) were more likely to be older, black, women, and have more comorbidities and severe strokes. Home-time variation decreased after risk adjustment (interquartile range, 57.4-61.4 days over 90 days; 266.3-274.2 days over 1 year). In adjusted analyses, increasing annual stroke volume and rural location were associated with significantly more home-time. CONCLUSIONS: In older ischemic stroke survivors, home-time post discharge varies by hospital annual stroke volume, severity of case-mix, and region. In adjusted analyses, annual ischemic stroke admission volume and rural location were associated with more home-time post stroke.

Rationale and design of a cluster-randomized multifaceted intervention trial to improve stroke care quality in China: The GOLDEN BRIDGE-Acute Ischemic Stroke.

BACKGROUND: Prior studies have demonstrated a significant gap between guideline-based recommendations and clinical practice in the management of acute ischemic stroke (AIS) in China. AIMS: This study implements a targeted multifaceted quality improvement intervention in AIS patients and identifies the feasibility and efficacy of this intervention. DESIGN: This is a multicenter, 2-arm, open-label, cluster-randomized trial involving 40 clusters (hospitals) from China National Network of Stroke Research. Hospitals are randomized to receive a targeted multifaceted quality improvement intervention (experimental group) or routine standard of care (control group). The multifaceted intervention includes an evidence-based clinical pathway, written care protocols, a quality coordinator, and a monitoring and feedback system of performance measures. The number of enrolled patients in the trial will be 4,800. Primary outcome is the measure of the adherence to AIS evidence-based performance measures including the composite measure (defined as the total number of interventions performed among eligible patients divided by the total number of possible interventions among eligible patients) and the all-or-none measure (defined as the proportion of eligible patients who receive all of the performance measure interventions for which they are eligible). Secondary patient outcomes include inhospital death; a new vascular event; disability; and all-cause death at 3, 6, and 12 months after initial symptom onset. All analyses will be performed according to the intention-to-treatment principle and accounted for clustering using generalized estimating equations. CONCLUSIONS: If proven effective, this targeted multifaceted intervention model will be extended nationwide as a model to bridge the evidence-based gap in the AIS management in China.

Efficacy of BETTER transitional care intervention for diverse patients with traumatic brain injury and their families: Study protocol of a randomized controlled trial.

OBJECTIVE: The purpose of this study is to examine the efficacy of BETTER (Brain Injury, Education, Training, and Therapy to Enhance Recovery) vs. usual transitional care management among diverse adults with traumatic brain injury (TBI) discharged home from acute hospital care and families. METHODS: This will be a single-site, two-arm, randomized controlled trial (N = 436 people, 218 patient/family dyads, 109 dyads per arm) of BETTER, a culturally- and linguistically-tailored, patient- and family-centered, TBI transitional care intervention for adult patients with TBI and families. Skilled clinical interventionists will follow a manualized protocol to address patient/family needs. The interventionists will co-establish goals with participants; coordinate post-hospital care, services, and resources; and provide patient/family education and training on self- and family-management and coping skills for 16 weeks following hospital discharge. English- and Spanish-speaking adult patients with mild-to-severe TBI who are discharged directly home from the hospital without inpatient rehabilitation or transfer to other settings (community discharge) and associated family caregivers are eligible and will be randomized to treatment or usual transitional care management. We will use intention-to-treat analysis to determine if patients receiving BETTER have a higher quality of life (primary outcome, SF-36) at 16-weeks post-hospital discharge than those receiving usual transitional care management. We will conduct a descriptive, qualitative study with 45 dyads randomized to BETTER, using semi-structured interviews, to capture perspectives on barriers and facilitators to participation. Data will be analyzed using conventional content analysis. Finally, we will conduct a cost/budget impact analysis, evaluating differences in intervention costs and healthcare costs by arm. DISCUSSION: Findings will guide our team in designing a future, multi-site trial to disseminate and implement BETTER into clinical practice to enhance the standard of care for adults with TBI and families. The new knowledge generated will drive advancements in health equity among diverse adults with TBI and families. TRIAL REGISTRATION: NCT05929833.