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.

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.

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.

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.

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.

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.

Implementation of a billable transitional care model for stroke patients: the COMPASS study.

BACKGROUND: The COMprehensive Post-Acute Stroke Services (COMPASS) pragmatic trial compared the effectiveness of comprehensive transitional care (COMPASS-TC) versus usual care among stroke and transient ischemic attack (TIA) patients discharged home from North Carolina hospitals. We evaluated implementation of COMPASS-TC in 20 hospitals randomized to the intervention using the RE-AIM framework. METHODS: We evaluated hospital-level Adoption of COMPASS-TC; patient Reach (meeting transitional care management requirements of timely telephone and face-to-face follow-up); Implementation using hospital quality measures (concurrent enrollment, two-day telephone follow-up, 14-day clinic visit scheduling); and hospital-level sustainability (Maintenance). Effectiveness compared 90-day physical function (Stroke Impact Scale-16), between patients receiving COMPASS-TC versus not. Associations between hospital and patient characteristics with Implementation and Reach measures were estimated with mixed logistic regression models. RESULTS: Adoption: Of 95 eligible hospitals, 41 (43%) participated in the trial. Of the 20 hospitals randomized to the intervention, 19 (95%) initiated COMPASS-TC. Reach: A total of 24% (656/2751) of patients enrolled received a billable TC intervention, ranging from 6 to 66% across hospitals. IMPLEMENTATION: Of eligible patients enrolled, 75.9% received two-day calls (or two attempts) and 77.5% were scheduled/offered clinic visits. Most completed visits (78% of 975) occurred within 14 days. Effectiveness: Physical function was better among patients who attended a 14-day visit versus those who did not (adjusted mean difference: 3.84, 95% CI 1.42-6.27, p = 0.002). Maintenance: Of the 19 adopting hospitals, 14 (74%) sustained COMPASS-TC. CONCLUSIONS: COMPASS-TC implementation varied widely. The greatest challenge was reaching patients because of system difficulties maintaining consistent delivery of follow-up visits and patient preferences to pursue alternate post-acute care. Receiving COMPASS-TC was associated with better functional status. TRIAL REGISTRATION: ClinicalTrials.gov number: NCT02588664. Registered 28 October 2015.

Unexplained Variation for Hospitals' Use of Inpatient Rehabilitation and Skilled Nursing Facilities After an Acute Ischemic Stroke.

BACKGROUND AND PURPOSE: Rehabilitation is recommended after a stroke to enhance recovery and improve outcomes, but hospital's use of inpatient rehabilitation facilities (IRFs) or skilled nursing facility (SNF) and the factors associated with referral are unknown. METHODS: We analyzed clinical registry and claims data for 31 775 Medicare beneficiaries presenting with acute ischemic stroke from 918 Get With The Guidelines-Stroke hospitals who were discharged to either IRF or SNF between 2006 and 2008. Using a multilevel logistic regression model, we evaluated patient and hospital characteristics, as well as geographic availability, in relation to discharge to either IRF or SNF. After accounting for observed factors, the median odds ratio was reported to quantify hospital-level variation in the use of IRF versus SNF. RESULTS: Of 31 775 patients, 17 662 (55.6%) were discharged to IRF and 14 113 (44.4%) were discharged to SNF. Compared with SNF patients, IRF patients were younger, more were men, had less health-service use 6 months prestroke, and had fewer comorbid conditions and in-hospital complications. Use of IRF or SNF varied significantly across hospitals (median IRF use, 55.8%; interquartile range, 34.8%-75.0%; unadjusted median odds ratio, 2.59; 95% confidence interval, 2.44-2.77). Hospital-level variation in discharge rates to IRF or SNF persisted after adjustment for patient, clinical, and geographic variables (adjusted median odds ratio, 2.87; 95% confidence interval, 2.68-3.11). CONCLUSIONS: There is marked unexplained variation among hospitals in their use of IRF versus SNF poststroke even after accounting for clinical characteristics and geographic availability. CLINICAL TRIAL REGISTRATION: URL: https://clinicaltrials.gov. Unique identifier: NCT02284165.

The Comprehensive Post-Acute Stroke Services (COMPASS) study: design and methods for a cluster-randomized pragmatic trial.

BACKGROUND: Patients discharged home after stroke face significant challenges managing residual neurological deficits, secondary prevention, and pre-existing chronic conditions. Post-discharge care is often fragmented leading to increased healthcare costs, readmissions, and sub-optimal utilization of rehabilitation and community services. The COMprehensive Post-Acute Stroke Services (COMPASS) Study is an ongoing cluster-randomized pragmatic trial to assess the effectiveness of a comprehensive, evidence-based, post-acute care model on patient-centered outcomes. METHODS: Forty-one hospitals in North Carolina were randomized (as 40 units) to either implement the COMPASS care model or continue their usual care. The recruitment goal is 6000 patients (3000 per arm). Hospital staff ascertain and enroll patients discharged home with a clinical diagnosis of stroke or transient ischemic attack. Patients discharged from intervention hospitals receive 2-day telephone follow-up; a comprehensive clinic visit within 2 weeks that includes a neurological evaluation, assessments of social and functional determinants of health, and an individualized COMPASS Care Plan™ integrated with a community-specific resource database; and additional follow-up calls at 30 and 60 days post-stroke discharge. This model is consistent with the Centers for Medicare and Medicaid Services transitional care management services provided by physicians or advanced practice providers with support from a nurse to conduct patient assessments and coordinate follow-up services. Patients discharged from usual care hospitals represent the control group and receive the standard of care in place at that hospital. Patient-centered outcomes are collected from telephone surveys administered at 90 days. The primary endpoint is patient-reported functional status as measured by the Stroke Impact Scale 16. Secondary outcomes are: caregiver strain, all-cause readmissions, mortality, healthcare utilization, and medication adherence. The study engages patients, caregivers, and other stakeholders (including policymakers, advocacy groups, payers, and local community coalitions) to advise and support the design, implementation, and sustainability of the COMPASS care model. DISCUSSION: Given the high societal and economic burden of stroke, identifying a care model to improve recovery, independence, and quality of life is critical for stroke survivors and their caregivers. The pragmatic trial design provides a real-world assessment of the COMPASS care model effectiveness and will facilitate rapid implementation into clinical practice if successful. TRIAL REGISTRATION: Clinicaltrials.gov: NCT02588664 ; October 23, 2015.

Becoming the Parent of a Child With Life-Threatening Food Allergies.

Food induced anaphylaxis (FIA) is a serious medical event and managing it can place tremendous mental, emotional and financial burdens on parents of children with FIA. Using grounded theory methods, the experiences of parents caring for a child with FIA and the adjustments and strategies used to effectively manage a child's diagnosis were examined. Findings revealed once a child is diagnosed with FIA, parental competency is often severely challenged, calling into question parents' ability to succeed in the parenting role. To regain parental competency, parents engage in a 3 phase process to learn how to parent a child with FIA.

Holistic Needs of University Students with Invisible Disabilities: A Qualitative Study.

AIM: To inform rehabilitation professionals' role in supporting transition to higher education through identification and description of disability related needs experienced by university students. METHODS: Participants were recruited from a large research-intensive university in the southeastern United States and included 13 students eligible for university disability services, 9 university personnel, and 1 parent of a university student with a disability. Disabilities of study participants were invisible; all but one chose to disclose diagnostic information. Data from 15 individual interviews and 2 focus groups were analyzed for themes. RESULTS: The Navigating Parallel Demands theme elucidates the ways disability related needs extended beyond the classroom to areas of health and wellness, social, and daily living. Navigation in Context describes personal and environmental circumstances surrounding processes used to meet a broad-range of demands. CONCLUSION: University participation requires students with disabilities to navigate and manage a wide range of demands while securing appropriate supports. Findings inform rehabilitation professionals in providing anticipatory guidance when preparing students with invisible disabilities for postsecondary educational transitions.

Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association.

Stroke is a leading cause of severe, long-term disability. Most stroke survivors are cared for in the home by a family caregiver. Caregiver stress is a leading cause of stroke survivor institutionalization, which results in significant costs to the healthcare system. Stroke family caregiver and dyad intervention studies have reported a variety of outcomes. A critical analysis of 17 caregiver intervention studies and 15 caregiver/stroke survivor dyad intervention studies was conducted to provide evidence-based recommendations for the implementation and future design of stroke family caregiver and dyad interventions.

Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association.

BACKGROUND AND PURPOSE: The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. METHODS: Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations. RESULTS: The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. CONCLUSIONS: Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.

Risk adjustment of ischemic stroke outcomes for comparing hospital performance: a statement for healthcare professionals from the American Heart Association/American Stroke Association.

BACKGROUND AND PURPOSE: Stroke is the fourth-leading cause of death and a leading cause of long-term major disability in the United States. Measuring outcomes after stroke has important policy implications. The primary goals of this consensus statement are to (1) review statistical considerations when evaluating models that define hospital performance in providing stroke care; (2) discuss the benefits, limitations, and potential unintended consequences of using various outcome measures when evaluating the quality of ischemic stroke care at the hospital level; (3) summarize the evidence on the role of specific clinical and administrative variables, including patient preferences, in risk-adjusted models of ischemic stroke outcomes; (4) provide recommendations on the minimum list of variables that should be included in risk adjustment of ischemic stroke outcomes for comparisons of quality at the hospital level; and (5) provide recommendations for further research. METHODS AND RESULTS: This statement gives an overview of statistical considerations for the evaluation of hospital-level outcomes after stroke and provides a systematic review of the literature for the following outcome measures for ischemic stroke at 30 days: functional outcomes, mortality, and readmissions. Data on outcomes after stroke have primarily involved studies conducted at an individual patient level rather than a hospital level. On the basis of the available information, the following factors should be included in all hospital-level risk-adjustment models: age, sex, stroke severity, comorbid conditions, and vascular risk factors. Because stroke severity is the most important prognostic factor for individual patients and appears to be a significant predictor of hospital-level performance for 30-day mortality, inclusion of a stroke severity measure in risk-adjustment models for 30-day outcome measures is recommended. Risk-adjustment models that do not include stroke severity or other recommended variables must provide comparable classification of hospital performance as models that include these variables. Stroke severity and other variables that are included in risk-adjustment models should be standardized across sites, so that their reliability and accuracy are equivalent. There is a pressing need for research in multiple areas to better identify methods and metrics to evaluate outcomes of stroke care. CONCLUSIONS: There are a number of important methodological challenges in undertaking risk-adjusted outcome comparisons to assess the quality of stroke care in different hospitals. It is important for stakeholders to recognize these challenges and for there to be a concerted approach to improving the methods for quality assessment and improvement.

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.

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.

Women's experiences in a community-based participatory research randomized controlled trial.

Integrating community-based participatory research (CBPR) into traditional study designs can enhance outcomes in studies with disadvantaged groups. Little is known, however, about study participants' experiences with these approaches, the underlying processes involved in creating more positive outcomes, and whether undesirable effects on study outcomes occur simultaneously. We conducted focus group interviews with 31 disadvantaged women who participated in a CBPR-driven randomized controlled trial (RCT) both to explore their study experiences and to obtain their interpretations of select study findings. Using dimensional analysis, we found the tailored health questionnaire, treatment by study staff members, and RCT participants' understandings of and responses to randomization were salient to what women described as transformative experiences that occurred over the course of the RCT. These findings have implications for understanding how CBPR and non-CBPR aspects of interventions and study designs have the potential to affect both process and endpoint study outcomes.

The impact of interactions with providers on stroke caregivers' needs.

PURPOSE: Preparation for caregiving is improved through engaged interactions between stroke family caregivers and healthcare providers throughout the care trajectory. We explored caregivers' perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation. DESIGN: Seventeen caregivers, included in this grounded theory study, were interviewed during a rehabilitation stay and postdischarge. Data were analyzed using dimensional and comparative analysis. FINDINGS: Caregivers described interactions with providers on a continuum from collaborative to disconnected, and a range of strategies to enhance interactions. CONCLUSIONS: Caregivers want to be actively engaged with providers during inpatient rehabilitation and collaborative interactions enhance preparedness and care satisfaction. RELEVANCE: Family members should be assessed for caregiving capacity and interactions between providers and caregivers should be individualized to specific needs. Providers must also be aware that many caregivers are not active information seekers. They must engage caregivers who may not even know what questions to ask.

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.

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.