Moderating Effects of Informal Care on the Relationship Between ADL Limitations and Adverse Outcomes in Stroke Survivors.

BACKGROUND: Stroke survivors with limitations in activities of daily living (ADL) have a greater risk of experiencing falls, hospitalizations, or physical function decline. We examined how informal caregiving received in hours per week by stroke survivors moderated the relationship between ADL limitations and adverse outcomes. METHODS: In this retrospective cohort, community-dwelling participants were extracted from the National Health and Aging Trends Study (2011-2020; n=277) and included if they had at least 1 formal or informal caregiver and reported an incident stroke in the prior year. Participants reported the amount of informal caregiving received in the month prior (low [<5.8], moderate [5.8-27.1], and high [27.2-350.4] hours per week) and their number of ADL limitations (ranging from 0 to 7). Participants were surveyed 1 year later to determine the number of adverse outcomes (ie, falls, hospitalizations, and physical function decline) experienced over the year. Poisson regression coefficients were converted to average marginal effects and estimated the moderating effects of informal caregiving hours per week on the relationship between ADL limitations and adverse outcomes. RESULTS: Stroke survivors were 69.7% White, 54.5% female, with an average age of 80.5 (SD, 7.6) years and 1.2 adverse outcomes at 2 years after the incident stroke. The relationships between informal caregiving hours and adverse outcomes and between ADL limitations and adverse outcomes were positive. The interaction between informal caregiving hours per week and ADL limitations indicated that those who received the lowest amount of informal caregiving had a rate of 0.12 more adverse outcomes per ADL (average marginal effect, 0.12 [95% CI, 0.005-0.23]; P=0.041) than those who received the highest amounts. CONCLUSIONS: Informal caregiving hours moderated the relationship between ADL limitations and adverse outcomes in this sample of community-based stroke survivors. Higher amounts relative to lower amounts of informal caregiving hours per week may be protective by decreasing the rate of adverse outcomes per ADL limitation.

What do spouse primary caregivers of patients with glioblastoma want medical providers to know? A qualitative thematic reflexive analysis of letters written by primary caregivers from a secret Facebook support group.

OBJECTIVES: To analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their experiences for medical providers of patients with GBM. DESIGN: A qualitative study using reflexive thematic analysis of letters written by female spouses/life partners and primary caregivers of patients with GBM. PARTICIPANTS: 101 current or former female spouse primary caregivers of patients with GBM wrote letters to share with the medical community between July 2019 and August 2019. INCLUSION CRITERIA: (1) the primary caregiver who is a spouse of a patient with glioblastoma, (2) be a member of the secret Facebook group, 'We are the wives of GBM and this is our story', and (3) completed informed consent for the contents of their letter to be included for primary and secondary data analysis. Participants who wrote letters but did not complete the informed consent were excluded from the study. RESULTS: Themes from the letters included the patient experiences: (1) medical details of the disease trajectory, (2) interactions of the patient/caregiver dyads with healthcare and (3) the changing patient condition over time. Themes focused on the caregiver experiences: (1) caregiver challenges, (2) caregiver responses and (3) caregiver coping strategies, and description of tangible needs that would help other caregivers in the future. Caregiver needs were highest during the living with disease progression phase. Caregivers wanted more education and to be valued as members of the care team. CONCLUSION: Shared decision-making through family-centred care would be beneficial for primary caregivers of patients with GBM. These findings provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers.

Working-Age Caregivers of Stroke Survivors: Needs, Concerns, and Quality of Life.

PURPOSE: The purpose of this study was to characterize the unmet needs and concerns of working-age caregivers of stroke survivors and to explore the relationships between these unmet needs and concerns and factors such as stroke survivor functional independence, caregiver strain, caregiver self-efficacy, caregiver perceived social support, and caregiver quality of life (QoL). DESIGN: Cross-sectional descriptive design was used in this study. METHODS: Participants ( N = 103) completed an online survey. Descriptive statistics, bivariate Pearson correlation, and linear regression analysis was performed. RESULTS: Negative correlations were found between caregiver needs and concerns and both stroke survivor functional independence and caregiver self-efficacy. Positive correlations were identified between caregiver needs and concerns and caregiver strain. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race, and gender were statistically significantly associated with caregiver QoL. CLINICAL RELEVANCE TO THE PRACTICE OF REHABILITATION NURSING: Results of this study can inform nurses as they collaborate with informal caregivers and researchers in optimizing the rehabilitation and discharge process and aiding in the support of caregiver QoL. CONCLUSION: Working-age caregivers of stroke survivors expressed many needs and concerns. These needs, along with other factors, can affect outcomes including QoL in caregivers and stroke survivors.

Individual and systems-related factors associated with heart failure self-care: a systematic review.

BACKGROUND: Heart failure (HF) is a prevalent condition worldwide. HF self-care is a set of behaviors necessary for improving patient outcomes. This study aims to review and summarize the individual and system-related factors associated with HF self-care published in the last seven years (Jan 2015 - Dec 2021) using the Socioecological Model as a review framework. METHODS: An experienced nursing librarian assisted authors in literature searches of CINAHL Plus with Full Text, Ovid Nursing, PsychINFO, and PubMed databases for peer-reviewed descriptive studies. Inclusion criteria were HF sample with self-care as the outcome variable, and a quantitative descriptive design describing individual and/or system-level factors associated with self-care. Exclusion criteria were interventional or qualitative studies, reviews, published before 2015, non-English, and only one self-care behavior as the outcome variable. The search yielded 1,649 articles. Duplicates were removed, 710 articles were screened, and 90 were included in the full-text review. RESULTS: A subset of 52 articles met inclusion and exclusion criteria. Study quality was evaluated using modified STROBE criteria. Study findings were quantitated and displayed based on socioecological levels. Self-care confidence, HF knowledge, education level, health literacy, social support, age, depressive symptoms, and cognitive dysfunction were the most frequently cited variables associated with self-care. Most factors measured were at the individual level of the Socioecological Model. There were some factors measured at the microsystem level and none measured at the exosystem or macrosystem level. CONCLUSION: Researchers need to balance the investigation of individual behaviors that are associated with HF self-care with system-level factors that may be associated with self-care to better address health disparities and inequity.

Interactive mobile application for Parkinson's disease deep brain stimulation (MAP DBS): An open-label, multicenter, randomized, controlled clinical trial.

INTRODUCTION: Deep brain stimulation (DBS) is an effective treatment for Parkinson's disease (PD), but its efficacy is tied to DBS programming, which is often time consuming and burdensome for patients, caregivers, and clinicians. Our aim is to test whether the Mobile Application for PD DBS (MAP DBS), a clinical decision support system, can improve programming. METHODS: We conducted an open-label, 1:1 randomized, controlled, multicenter clinical trial comparing six months of SOC standard of care (SOC) to six months of MAP DBS-aided programming. We enrolled patients between 30 and 80 years old who received DBS to treat idiopathic PD at six expert centers across the United States. The primary outcome was time spent DBS programming and secondary outcomes measured changes in motor symptoms, caregiver strain and medication requirements. RESULTS: We found a significant reduction in initial visit time (SOC: 43.8 ± 28.9 min n = 37, MAP DBS: 27.4 ± 13.0 min n = 35, p = 0.001). We did not find a significant difference in total programming time between the groups over the 6-month study duration. MAP DBS-aided patients experienced a significantly larger reduction in UPDRS III on-medication scores (-7.0 ± 7.9) compared to SOC (-2.7 ± 6.9, p = 0.01) at six months. CONCLUSION: MAP DBS was well tolerated and improves key aspects of DBS programming time and clinical efficacy.

The preparedness assessment for the transition home after stroke predicts key domains of caregiver health.

BACKGROUND: Caregivers of stroke survivors often experience adverse health effects due to poor preparation. OBJECTIVES: We evaluate the concurrent and predictive validity of the Preparedness Assessment for the Transition Home after Stroke (PATH-s) family caregiver assessment tool relative to important domains of caregiver health and stroke survivor outcomes. METHODS: A convenience sample of caregivers (N = 183) was assessed on several health-related quality of life instruments prior to stroke survivor discharge (T1), and at 30-days (T2) and 90-days (T3) post-discharge. RESULTS: Caregivers completed assessments at T1 (N = 183), T2 (N = 116, 63%), and T3 (N = 97, 53%). At T1, the PATH-s demonstrated concurrent validity with depressive symptoms (r = -0.26, p < .001), global health (r = 0.45 p < .001) and activation (r = 0.34, p < .001). The PATH-s also has predicted improvements in T2 outcomes including depressive symptoms (radj = -0.21, p < .05), global health (radj = 0.30, p < .01), perceived stress (radj = -0.30, p < .01), activation (radj = 0.21, p < .05), caregiving-specific health-related quality of life (r = 0.23, p < .05), and caregiver strain (r = -0.36, p < .001). At T3, higher scores on the PATH-s were a significant predictor for improvements in activation (radj = 0.24, p < .05). CONCLUSION: The PATH-s demonstrates good concurrent and predictive validity and predicts important domains relevant to caregiver well-being. This can be used to identify gaps in caregiver preparedness so interventions can be tailored to optimize the transition home and mitigate adverse effects of caregiving.

Familial caregiving following stroke: findings from the comprehensive post-acute stroke services (COMPASS) pragmatic cluster-randomized transitional care study.

BACKGROUND: Stroke patients discharged home often require prolonged assistance from caregivers. Little is known about the real-world effectiveness of a comprehensive stroke transitional care intervention on relieving caregiver strain. OBJECTIVES: To describe the effect of the COMPASS transitional care (COMPASS-TC) intervention on caregiver strain and characterize the types, duration, and intensity of caregiving. METHODS: The cluster-randomized COMPASS pragmatic trial evaluated the effectiveness of COMPASS-TC versus usual care with patients with mild stroke and TIA at 40 hospitals in North Carolina, USA. Of 5882 patients enrolled, 4208 (71%) identified a familial caregiver. A follow-up Caregiver Questionnaire, including the Modified Caregiver Strain Index, was administered at approximately three months post-discharge. Demographics and frequency, duration, and intensity of caregiving were compared between groups. RESULTS: 1228 caregivers (29%) completed the questionnaire. Completion was positively associated with older patient age, white race, and spousal relationship. One-third of the caregivers provided ≥30 hours of care per week and 889 (79%) provided care ≥9 weeks. Average standardized caregiver strain was 21.9 (0-100), increasing with stroke severity and comorbidity burden. Women caregivers reported higher strain than men. Treatment allocation was not associated with caregiver strain. CONCLUSIONS: This sample of mild stroke and TIA survivors received significant assistance from familial caregivers. However, caregiver strain was relatively low. Findings support the importance of familial caregiving in stroke, the continued disproportionate burden on women within the family, and the need for future research on caregiver support.

Informal caregiver training to address functional mobility limitations of stroke survivors: a scoping review.

BACKGROUND AND OBJECTIVES: Informal caregivers of stroke survivors often report the need for training on how to care for a loved one with functional mobility limitations. Evidence on training interventions to help informal caregivers with issues related to mobility is varied. The objective of this scoping review was to examine the literature including skill-based training interventions that educate caregivers on functional mobility for stroke survivors. RESEARCH DESIGN AND METHODS: We extracted studies from OVID Medline, Cochrane, ISI Web of Knowledge, and Embase published between 1990 and 2021. At every stage of assessment, data extraction forms were used to reach consensus among at least three out of four authors. We followed PRISMA-ScR guidelines and Arskey and O'Malley's framework to chart information into several tables based on research questions and summarized with descriptive statistics. RESULTS: Most studies were conducted outside the US focused on training in mobility and activities of daily living. The stroke survivor, on average, was an older individual (mean age 64.8 [SD = 5.3] years). The informal caregiver was predominately a younger female spouse (mean age 54.2 [SD = 6.3]). More than a third of the studies reported improvement in the stroke survivors' physical function post-intervention, with a mean follow-up time of 4.4 months. Effective studies tended to include stroke survivors with less cognitive and functional mobility limitations at higher training dosages. DISCUSSION AND IMPLICATIONS: Gaps in our understanding of informal caregiver training for those caring for stroke survivors are identified, and recommendations are provided for future research.

The work of managing a chronic illness: A job description.

RATIONALE: Self-management of a chronic illness is a struggle for many patients. There is substantial evidence that patients are not as successful as they and their providers would like. Considering patient self-management through an innovative and diverse lens could help patients, providers and the health care system to consider novel changes to improve success. AIMS AND OBJECTIVES: To provide a complete view of patient work by utilizing the human resources management practice of job analysis to develop an initial job description for patients suffering from chronic illness. METHODS: Study design was descriptive qualitative with analysis aiming to identify those reoccurring ideas from the data. Thirty patients, with at least one chronic illness, in three focus groups were assembled for this study. Verbatim recordings and notes were used to categorize the data provided. Five coders analyzed the data independently, and jointly met to discuss the themes identified. Demographic data was collected via surveys. RESULTS: Patients with chronic illness engage in five primary 'job' duties including self-care (actions taken to effectively manage physical and psychological symptoms), managing relationships (effective management of relationships with employers, family, friends and providers to ensure the best outcomes), managing resources (understanding and managing finances, health and prescription medication insurance), coordination (managing and scheduling visits to providers) and research/education (gathering information and conducting research relative to all aspects of managing one's illness). Relevant knowledge, skills, abilities (KSAs) and other resources were identified that are necessary for patients to effectively perform the five job duties. CONCLUSIONS: Creating a job description for the 'job' of patient is a crucial step in understanding the work chronically ill patients undertake. Knowing the duties, their associated tasks and KSAs, and resources required to perform those tasks enables patients and their providers and advocates to better identify ways to assist, relieve and encourage these patients in order to maximize patient success.

Categorizing national caregiver recommendations to support family caregivers and address unmet needs.

BACKGROUND: Recognizing family caregivers as vital providers of long-term assistance to loved ones with chronic illness, several national organizations developed recommendations to improve support for family caregivers. PURPOSE: This article categorizes these recommendations to advance family-centered nursing practice, develop health policies, and advocate for family caregiver support. METHODS: Six reports of caregiver recommendations published in the United States from 2016 to 2021 were analyzed using thematic analysis. FINDINGS: The 108 recommendations were organized into five categories: policy; caregiver assessment and support; health professional practices; public awareness; advance care planning. DISCUSSION: Ensuring economic security, establishing a national data collection strategy, addressing caregivers' diverse needs, improving access to health care and support services, and increasing public awareness were highlighted. CONCLUSION: The recommendations provide a roadmap for nurses at all levels of practice to advocate for a national agenda to develop, fund, and implement inclusive health care policies and interventions to address unmet caregiver needs and maximize support.

Improving Caregiver Health through Systematic Assessment and a Tailored Plan of Care.

Caregivers often experience strain and negative effects on their well-being. We tested the effects of a caregiver assessment and tailored care plan for caregivers of patients transitioning home from an inpatient rehabilitation facility (IRF), a study involving two groups: usual care (n = 225) (preimplementation) and intervention (postimplementation) (n = 215). Caregivers in the intervention group were assessed using the 25-item self-reported Preparedness Assessment for the Transition Home during the IRF stay. A tailored care plan was implemented in response to the assessment. Caregivers in both groups completed the Modified Caregiver Strain Index and Global Health Scale at 30- and 90-day postdischarge. After adjusting for baseline and demographics, caregivers in the intervention group reported lower strain (p < .01) and better overall health (p < .05) at 30-day post-IRF discharge, relative to usual care. Implementing a systematic caregiver assessment and tailored care plan in the IRF may mitigate the adverse effects of caregiving.

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.

Home Health Management of Parkinson Disease Deep Brain Stimulation: A Randomized Clinical Trial.

Importance: The travel required to receive deep brain stimulation (DBS) programming causes substantial burden on patients and limits who can access DBS therapy. Objective: To evaluate the efficacy of home health DBS postoperative management in an effort to reduce travel burden and improve access. Design, Settings, and Participants: This open-label randomized clinical trial was conducted at University of Florida Health from November 2017 to April 2020. Eligible participants had a diagnosis of Parkinson disease (PD) and were scheduled to receive DBS independently of the study. Consenting participants were randomized 1:1 to receive either standard of care or home health postoperative DBS management for 6 months after surgery. Primary caregivers, usually spouses, were also enrolled to assess caregiver strain. Interventions: The home health postoperative management was conducted by a home health nurse who chose DBS settings with the aid of the iPad-based Mobile Application for PD DBS system. Prior to the study, the home health nurse had no experience providing DBS care. Main Outcomes and Measures: The primary outcome was the number of times each patient traveled to the movement disorders clinic during the study period. Secondary outcomes included changes from baseline on the Unified Parkinson's Disease Rating Scale part III. Results: Approximately 75 patients per year were scheduled for DBS. Of the patients who met inclusion criteria over the entire study duration, 45 either declined or were excluded for various reasons. Of the 44 patients enrolled, 19 of 21 randomized patients receiving the standard of care (mean [SD] age, 64.1 [10.0] years; 11 men) and 23 of 23 randomized patients receiving home health who underwent a minimum of 1 postoperative management visit (mean [SD] age, 65.0 [10.9] years; 13 men) were included in analysis. The primary outcome revealed that patients randomized to home health had significantly fewer clinic visits than the patients in the standard of care arm (mean [SD], 0.4 [0.8] visits vs 4.8 [0.4] visits; P < .001). We found no significant differences between the groups in the secondary outcomes measuring the efficacy of DBS. No adverse events occurred in association with the study procedure or devices. Conclusions and Relevance: This study provides evidence supporting the safety and feasibility of postoperative home health DBS management. Trial Registration: ClinicalTrials.gov Identifier: NCT02474459.

Psychometric Properties of the Preparedness Assessment for the Transition Home After Stroke Instrument.

PURPOSE: The aim of this study was to evaluate psychometric properties of the Preparedness Assessment for the Transition Home After Stroke (PATH-s), a novel instrument to assess stroke caregiver commitment and capacity. The PATH-s instrument can be obtained at www.rehabnurse.org/pathtool. DESIGN: The design of this study is cross-sectional. METHODS: The PATH-s, the Preparedness for Caregiving Scale (PCS), the Patient Health Questionnaire, the Perceived Stress Scale, and the Global Health Scale were self-reported from a convenience sample of caregiver-stroke survivor dyads (n = 183) during inpatient rehabilitation. RESULTS: Exploratory factor analysis revealed eight factors underlying the PATH-s structure. The PATH-s Cronbach's alpha of .90 demonstrated criterion-related validity with the PCS (r = .79, p < .01). Both the PATH-s and the PCS were negatively correlated with the Patient Health Questionnaire (r = -.26 and -.27, respectively; p < .01) and the Perceived Stress Scale (r = -.12 and -.15, respectively; p > .05) and positively correlated with the Global Health Scale (r = -.46 and .46, respectively; p < .01), indicating convergent validity. CONCLUSIONS: The PATH-s demonstrates excellent internal consistency and satisfactory criterion-related and convergent validity. CLINICAL RELEVANCE: The PATH-s may be used to assess the risk/needs of caregivers over time.

Comprehensive Stroke Care and Outcomes: Time for a Paradigm Shift.

Worldwide, stroke is prevalent, costly, and disabling in >80 million survivors. The burden of stroke is increasing despite incredible progress and advancements in evidence-based acute care therapies and despite the substantial changes being made in acute care stroke systems, processes, and quality metrics. Although there has been increased global emphasis on the importance of postacute stroke care, stroke system changes have not expanded to include postacute care and outcome follow-up. Our objectives are to describe the gaps and challenges in postacute stroke care and suboptimal stroke outcomes; to report on stroke survivors' and caregivers' perceptions of current postacute stroke care and their call for improvements in follow-up services for recovery and secondary prevention; and, ultimately, to make the case that a paradigm shift is needed in the definition of comprehensive stroke care and the designation of Comprehensive Stroke Center. Three recommendations are made for a paradigm shift in comprehensive stroke care: (1) criteria should be established for designation of rehabilitation readiness for Comprehensive Stroke Centers, (2) The American Heart Association/American Stroke Association implement an expanded Get With The Guidelines-Stroke program and criteria for comprehensive stroke centers to be inclusive of rehabilitation readiness and measure outcomes at 90 days, and (3) a public health campaign should be launched to offer hopeful and actionable messaging for secondary prevention and recovery of function and health. Now is the time to honor the patients' and caregivers' strongest ask: better access and improved secondary prevention, stroke rehabilitation, and personalized care.

Using the Preparedness Assessment for the Transition Home After Stroke Instrument to Identify Stroke Caregiver Concerns Predischarge: Uncertainty, Anticipation, and Cues to Action.

PURPOSE: The aim of the study was to better understand caregivers' concerns about long-term implications of stroke and the caregiving role after completing the Preparedness Assessment for the Transition Home After Stroke (PATH-s). DESIGN/METHODS: In this qualitative study, cognitive interviews were conducted with 20 stroke caregivers who completed the PATH-s tool as part of an instrument validation study. Data were analyzed for salient themes related to their perceptions about stroke and the caregiving role. FINDINGS: Interviews yielded robust narrative data describing how the PATH-s items aided caregivers in recognizing potential issues and concerns about stroke and the caregiving role. Caregivers experienced uncertainty about the long-term stroke prognosis, which provoked anticipation and cues to action to begin addressing their concerns. CONCLUSIONS/CLINICAL RELEVANCE: Completing the PATH-s helped caregivers identify concerns regarding the long-term implications of stroke and their caregiving role. It may serve as an important assessment tool to assist rehabilitation nurses to better understand and address caregiver needs predischarge.

Impact of an Emergency Department-to-Home Transitional Care Intervention on Health Service Use in Medicare Beneficiaries: A Mixed Methods Study.

BACKGROUND: Hospital-based acute care [emergency department (ED) visits and hospitalizations] that is preventable with high-quality outpatient care contributes to health care system waste and patient harm. OBJECTIVE: To test the hypothesis that an ED-to-home transitional care intervention reduces hospital-based acute care in chronically ill, older ED visitors. RESEARCH DESIGN: Convergent, parallel, mixed-methods design including a randomized controlled trial. SETTING: Two diverse Florida EDs. SUBJECTS: Medicare fee-for-service beneficiaries with chronic illness presenting to the ED. INTERVENTION: The Coleman Care Transition Intervention adapted for ED visitors. MEASURES: The main outcome was hospital-based acute care within 60 days of index ED visit. We also assessed office-based outpatient visits during the same period. RESULTS: The Intervention did not significantly reduce return ED visits or hospitalizations or increase outpatient visits. In those with return ED visits, the Intervention Group was less likely to be hospitalized than the Usual Care Group. Interview themes describe a cycle of hospital-based acute care largely outside patients' control that may be difficult to interrupt with a coaching intervention. CONCLUSIONS AND RELEVANCE: Structural features of the health care system, including lack of access to timely outpatient care, funnel patients into the ED and hospital admission. Reducing hospital-based acute care requires increased focus on the health care system rather than patients' care-seeking decisions.