Barbara J. Lutz

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.

The Crisis of Stroke: Experiences of Patients and Their Family Caregivers

Abstract Purpose: Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Methods: Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Results: Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients’ needs on discharge. Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let al.one the crisis of discharge and all of the new responsibilities with which they must deal.

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.

Rethinking intervention strategies in stroke family caregiving.

&NA; Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivors physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.

Disability in Everyday Life

The authors explored how persons with disabilities perceived the experience of disability in their everyday lives. The findings suggest that the current models in the literature do not address disability adequately. Instead, disability was described as a multifaceted, complex experience that is integrated into the lives of persons with disabilities. The degree to which integration was possible was influenced by three disability-related factors: (a) the fundamental effects of the disabling condition, (b) others’ perceptions of disability, and (c) the need for and use of resources. Important contextual conditions included the environment, time, and experience. Ultimately, it was the match between how these persons perceived themselves and what was important in their lives, and the influence of the three factors that determined how well they were able to integrate disability into their lives. The findings suggest the need for a conceptual model that reflects the personal experience of disability.

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.

Public health nursing case management for women receiving temporary assistance for needy families: a randomized controlled trial using community-based participatory research.

OBJECTIVES We evaluated the effectiveness of a community-based participatory research-grounded intervention among women receiving Temporary Assistance for Needy Families (TANF) with chronic health conditions in increasing (1) health care visits, (2) Medicaid knowledge and skills, and (3) health and functional status. METHODS We used a randomized controlled trial design to assign 432 women to a public health nurse case management plus Medicaid intervention or a wait-control group. We assessed Medicaid outcomes pre- and posttraining; other outcomes were assessed at 3, 6, and 9 months. RESULTS Medicaid knowledge and skills improved (P < .001 for both). Intervention group participants were more likely to have a new mental health visit (odds ratio [OR] = 1.92; P = .007), and this likelihood increased in higher-risk subgroups (OR = 2.03 and 2.83; P = .04 and .006, respectively). Depression and functional status improved in the intervention group over time (P = .016 for both). No differences were found in routine or preventive care, or general health. CONCLUSIONS Health outcomes among women receiving TANF can be improved with public health interventions. Additional strategies are needed to further reduce health disparities in this population.

Determinants of Discharge Destination for Stroke Patients

&NA; Discharge to community is an important outcome measure for rehabilitation facilities. Studies consistently find that stroke patients with higher scores on the Functional Independence Measure™ (FIM) are more likely to be discharged to the community. Other variables, including age, gender, and living status, also have shown a relationship to discharge destination for stroke patients. This study explored the differences between stroke patients who were discharged to the community and those who were discharged to a nursing home after a stay on an acute inpatient rehabilitation unit. Results indicated that older patients and those with lower admission FIM scores are more likely to be discharged to nursing homes, but many patients who fit this profile are discharged to the community. The main destination determinant was how well a patients need for care matched informal caregiving resources. These findings indicate a need for additional focused assessment of available care giving resources.

Testing a home-telehealth programme for US veterans recovering from stroke and their family caregivers

Purpose. The study purpose was to implement a stroke-specific, care coordination home telehealth (CCHT) programme for US veterans with stroke and their family caregivers. Methods. In a non-randomized open trial using a mixed methods design, we tested the utility of a stroke-specific, home telehealth programme with 18 veterans and 14 caregivers for 14 days. Programme questions assessed physical impairment, depressive symptoms, and fall prevalence among veterans, and burden level among family caregivers. Nine veterans and six caregivers completed post-programme interviews exploring their experiences with telehealth. Results. During the 14-day trial, 55% of the veterans screened positive for depression at least once, 36% of the caregivers had clinically significant burden, half of the veterans and caregivers reported post-stroke concerns, and 90% believed post-stroke contact from a care coordinator would have been helpful. In the interviews, seven veterans indicated they had fallen or almost fallen post-stroke. Themes centred on tailoring CCHT to individual needs, coordinating with support services, identifying safety issues, and providing information about stroke prevention. Conclusions. Home telehealth offers innovative ways to target post-stroke rehabilitation programmes to the needs and concerns of patients and their caregivers, and should include regular real-time contact between stroke patients and their healthcare providers.

Improving Primary Care for Persons with Disabilities: The nature of expertise

It has been well documented that persons with disabilities (PWDs) have a more vulnerable health status than persons without disabilities; yet, they often receive inadequate primary care within the US health care system. This study explores how PWDs think about the health care they receive, particularly how primary care providers facilitate or hinder quality care for PWDs. The findings from this study expand the concept of expertise in health care, suggesting it goes well beyond technical competence of health care providers. For PWDs, expertise is multi-dimensional, not solely the domain of providers and includes having knowledge and using that knowledge within the context of the provider-patient relationship. PWDs identified three distinct areas of expertise: medical/technical, medical/biographical, and systems. Expertise can be brought to health care encounters by both PWDs and providers, and it can be developed through collaboration during interactions between providers and PWDs.