Falling through the net of stroke care

The provision of healthcare services has been shown to differ by social characteristics such as gender, age and social status. The processes by which such differences arise are unclear. We report findings from a qualitative interview study with stroke service providers undertaken during an investigation of inequalities in stroke care. We interviewed 41 professionals from hospital and community settings in south London. Participants' accounts are used to explore how it is that patients' trajectories of care might not follow evidence-based guidelines, focusing on stroke unit admission, provision of hospital rehabilitation therapies and community health and social services. Categories of patients who might not receive best care were people who were cognitively impaired, those regarded as having 'complex problems', those with communication problems and younger people. Additionally, the local availability of services was thought to affect individuals' chances of receiving particular components of care. Although professionals spoke of certain types of patients as 'falling through the net' (of services), their accounts suggest that they channel patients through services according to an implicit template of the individual suited to the service. Those who do not fit the service as currently resourced may have reduced access to specific components of care. If inequalities in access to care are to be addressed we require a better understanding of how professionals' decision-making processes test the fit between service users and the implicit template of 'suitable' patient or client.     

Community-based post-stroke service provision and challenges: a national survey of managers and inter-disciplinary healthcare staff in Ireland

ABSTRACT: BACKGROUND: The extent of stroke-related disability typically becomes most apparent after patient discharge to the community. Maximising rehabilitation input at this point can minimise the impact of disability. As part of the Irish National Audit of Stroke Care (INASC), a national survey of community-based allied health professionals and public health nurses was conducted. The aim was to document the challenges to service availability for patients with stroke in the community and to identify priorities for service improvement. METHODS: The study was a cross-sectional tailored interview survey with key managerial and service delivery staff. As comprehensive listings of community-based health professionals involved in stroke care were not available, a cascade approach to information gathering was adopted. Representative regional managers for services incorporating stroke care (N=7) and disciplinary allied health professional and public health nurse managers (N=25) were interviewed (94% response rate). RESULTS: Results indicated a lack of formal, structured community-based services for stroke, with no designated clinical posts for stroke care across disciplines nationally. There was significant regional variation in availability of allied health professionals. Considerable inequity was identified in patient access to stroke services, with greater access, where available, for older patients (>65 years). The absence of a stroke strategy and stroke prevalence statistics were identified as significant impediments to service planning, alongside organisational barriers limiting the recruitment of additional allied health professional staff, and lack of sharing of discipline-specific information on patients. CONCLUSIONS: This study highlighted major gaps in the provision of inter-disciplinary team community-based services for people with stroke in one country. Where services existed, they were generic in nature, rarely inter-disciplinary in function and deficient in input from salient disciplines. Challenges to optimal care included the need for strategic planning; increased funding of healthcare staff; increased team resources and teamwork; and removal of service provision barriers based on age. There were notably many challenges beyond funding. Similar evaluations in other healthcare systems would serve to provide comparative lessons to serve to tackle this underserved aspect of care for patients with stroke and their families.     

Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

What benefits will choice bring to patients? Literature review and assessment of implications

OBJECTIVES: To assess the demand for, and likely impact of, increasing patient choice in health care. The study examined whether patients would like to exercise choice of hospital, primary care provider and treatment, and investigated the likely impact of policies designed to increase choice on equity of access, and on the efficiency and quality of service delivery. METHOD: Theory-based literature review including an analysis of the intended and unintended impact of choice-related policies in health care in the UK, European Union and USA. Selected papers focused not only on offering choice to individual patients but also evidence of the impact of choice by patients' agents such as GPs, and on the impact of introducing choice in education and social services. RESULTS: Choosing between hospitals or primary care providers is not currently a high priority for the public, except where local services are poor, e.g. they have long waiting times and where individual patients' circumstances do not limit their ability to travel. When patients become ill, they are increasingly likely to wish to rely on a trusted health practitioner to choose their treatment. Better educated populations make greater use of information and are more likely to exercise choice in health care. The increase in inequality which this could produce might be reduced by specific provision of information and help, enabling less advantaged populations to make choices about health care. There was little evidence in the literature that providing greater choice will in itself improve efficiency or quality of care. CONCLUSION: Although patients may themselves make limited use of choices, the existence of choice may, in theory, stimulate providers to improve quality of care. Patients do, however, want to be more involved in individual decisions about their own treatment, and generally participate much less in these decisions than they would wish.     

Impact of systems of care and blood pressure management on stroke outcomes

Stroke is the third leading cause of death in the United States and the leading cause of disability. Stroke patients' outcomes are strongly determined by how long they remain untreated ("time is brain"). The Joint Commission's adoption of stroke performance improvement measures combined with the Centers for Medicare and Medicaid's more recent adoption in October 2009 make a systems approach to improving stroke outcomes a higher priority. As hospitals establish local and regional stroke care systems to meet these performance measures, treatment of emergent high blood pressure (BP) is a major consideration to improve rapid triage and management of acute stroke patients. Intravenous thrombolysis with tissue plasminogen activator (tPA) is a critical quality of care component for acute ischemic stroke (AIS) treatment, but its administration is contingent on BP management. For patients with AIS who are potentially eligible for tPA and patients with intracerebral hemorrhage, timely, controlled BP may improve patient outcomes. Appropriate BP management, however, is still controversial given the heterogeneity of stroke subtypes, the varying attributes of candidate antihypertensive agents, and both local and central hemodynamics. Additionally, organizational delivery system factors may be suboptimal at some hospitals. Under current hospital stroke performance measures, payment mechanisms, and emergency department throughput measures, the impact of BP management may become transparent to patients and payers, and have important consequences for hospital-derived stroke outcomes.     

A model for costs of stroke services

In industrialised countries, stroke is one of the most common causes of death and handicap, and the costs for stroke services are high. However, rational planning of stroke services and estimation of the costs of their provision are complex, even when generic pathways for stroke diagnosis and treatment are well understood. The reason is the chronic nature of cerebro-vascular disease and the cumulative effect of disabling brain injury. In this paper we describe development of a computer model for estimating the costs of stroke services, intended for use by planners and purchasers of stroke care services. The model operates by incrementing patients' experience of stroke events and their outcomes in annual steps, and is calibrated using Swedish data. We demonstrate the cost consequences by simulating three different policy changes. The model facilitates comparisons between stroke prevention, treatment and rehabilitation, and we conclude that by combining the three policy options it is possible to reduce the costs for stroke services markedly.     

Improving adolescent pregnancy outcomes and maternal health:a case study of comprehensive case managed services

Our findings indicate how health outcomes regarding adolescent pregnancy and maternal and infant health care are intertwined with a case management process that fosters measures that are social in nature-the provision of direct services, as well as the encouragement of informal social supports systems. They also show how case managed services in a small, nongovernmental organization (NGO) with a strong commitment to its clients may provide the spontaneity and caring which results in a "match" between client needs and the delivery of services-and positive outcomes for pregnant women, early maternal health and infant health. The delivery of such case managed services in a manner which is intensive, comprehensive, flexible and integrated contributes significantly to such improved health outcomes.     

System induced setbacks in stroke recovery

This study reports research on the experiences of stroke survivors and their informal carers who are receiving stroke services in the community. As part of a qualitative evaluation of a Pilot Community Stroke Service in Nottingham, England, interviews were conducted with stroke survivors, their families and friends, alongside interviews with the managers and professionals providing the service. The findings from the interview data were compared across cases and with findings from analyses of documentary data such as clients' individual plans, and participant observational data, such as those of team meetings. Data analysis revealed that of the 57 survivors, 13 had suffered setbacks that were a direct consequence of their interactions with health and social care services and were system induced. This paper introduces and discusses the concept of the system induced setback by exploring the experiences of these 13 survivors. Implications for understanding the interplay of service provision and disease process are highlighted.     

Diversity in intermediate care

This paper discusses the evolution of intermediate care (IC) and presents interim observations from a survey of providers in England being conducted as part of a national evaluation. Telephone interviews covering various issues concerning the level of provision and style of delivery have been conducted with 70 services to date. Data from these are used to discuss the progress, range and nature of IC in relation to clinician viewpoints and academic and official literature on the subject. IC ‘on the ground’ is a multiplicitous entity, with provision apparently evolving in accordance with the particularities of local need. While protocols for medical involvement in IC generally appear to be well established, there are some tensions concerning integration of services in a locality, care management processes and questions of flexibility and inclusiveness in relation to eligibility criteria.     

Effective professional practice: protocol for a systematic review of health professionals' management of obesity

While much attention has been paid to interventions to help overweight and obese people lose weight, relatively little is known about the contribution of health professionals to obesity reduction. As in other clinical areas, variations in the provision of health care for overweight and obese people may affect health outcomes. In this area in particular, there is reason to believe that practice may be adversely affected because of some providers' negative attitudes towards the patient group.
This work aims to identify strategies that are effective in improving health professionals' management of obesity or the delivery of health care services for overweight and obese people. In contrast to recent systematic reviews of patient-targeted approaches, this review focuses specifically on interventions designed to improve health professionals' practice. It is undertaken in association with the Cochrane Effective Practice and Organisation of Care (EPOC) Group. The protocol for this review is described.     

Health care limits: representations and unconscious processes related to the population at the hospital emergency entrance

This article presents some results from a study aimed at analyzing the limits and possibilities defined by inter-subjective and unconscious processes of solidarity, cooperation, and life care production in health services. A public hospital with an emergency department in the city of Rio de Janeiro, Brazil, was selected as a case study. The French school of psychosociology, oriented by the psychoanalytical clinical approach, the psychoanalytical theory on inter-subjective and group processes, and work psychodynamics provided the basis for the study's methodological strategies and analysis of the results. The study analyzed health professionals' psychological representations and unconscious processes related to emergency department users and their demands, and their consequences for the health care provided to this clientele. Some particularly important images such as "need" were used as a category that conceals the diversity of demand, in an unconscious process with multiple reductions: from denial of social suffering to denial of the patients' human condition.     

The use of pluralistic evaluation to explore people's experiences of stroke services in the community

The aim of the present study was to explore the experience of stroke survivors and their informal carers of stroke services in the community, as part of a pluralistic evaluation of a Pilot Community Stroke Service (PCSS) in Nottingham, England. The research design involved qualitative in-depth interviews with four main stakeholder groups in the evaluation, in combination with analyses of varied data sources, including participant observational and documentary. In addition to interviews with 57 stroke survivors and their carers (as appropriate), interviews were conducted with the team of the PCSS, individually and as a group, and with a range of other workers. The pluralistic approach of the evaluation revealed that tensions and social conflicts at the interface between services, and particularly between health and social care services, had a negative impact on the quality of life of clients and carers alike, which were experienced as 'setbacks', and which could be shown to be system induced. Such 'System Induced Setbacks' also had negative consequences for the team of the PCSS, since rather than being a 'top up' service, in such cases it became a 'mop up' service, compensating for the shortfall in service provision. Thus its aims and objectives could not be fully realized. It was concluded that pluralistic evaluation had a number of strengths including that, because of its attention to process and social context, it revealed the existence of System Induced Setbacks and their negative and long-term impact on the daily lives of clients and carers, and on the team of the PCSS, in a way which would not have been possible had a quantitative approach been used.     

Centralisation of acute stroke services in London: Impact evaluation using two treatment groups

The bundling of clinical expertise in centralised treatment centres is considered an effective intervention to improve quality and efficiency of acute stroke care. In 2010, 8 London Trusts were converted into Hyper Acute Stroke Units. The intention was to discontinue acute stroke services in 22 London hospitals. However, in reality, provision of services declined only gradually, and 2 years later, 15% of all patients were still treated in Trusts without a Hyper Acute Stroke Unit. This study evaluates the impact of centralising London's stroke care on 7 process and outcome indicators using a difference‐in‐difference analysis with two treatment groups, Hyper Acute and discontinued London Trusts, and data on all stroke patients recorded in the hospital episode statistics database from April 2006 to April 2014. The policy resulted in improved thrombolysis treatment and lower rates of pneumonia in acute units. However, 6 indicators worsened in the Trusts that were meant to discontinue services, including deaths within 7 and 30 days, readmissions, brain scan rates, and thrombolysis treatment. The reasons for these results are difficult to uncover and could be related to differences in patient complexity, data recording, or quality of care. The findings highlight that actual implementation of centralisation policies needs careful monitoring and evaluation.     

An Emergency Medical Services Toolkit for Improving Systems of Care for Stroke in North Carolina

The Centers for Disease Control and Prevention is partnering with the National Association of Chronic Disease Directors and the North Carolina Office of EMS to design, develop, and implement an emergency medical services (EMS) performance improvement toolkit to evaluate opportunities to improve the emergency identification and treatment of acute stroke. The EMS Acute Stroke Care Toolkit is being developed, tested, and implemented in all 100 counties in the state by the EMS Performance Improvement Center, the agency that provides technical assistance for EMS in North Carolina. The toolkit helps each EMS system in defining, measuring, and analyzing their system of care and promotes collaboration through public education, regional stroke planning with hospitals, EMS service configuration, EMS staffing patterns, EMS education, and timely care delivery. We outline the issues surrounding acute stroke care, the role of emergency medical systems in stroke care, and the components of the EMS Acute Stroke Care Toolkit designed to improve EMS systems and outcomes for stroke patients.     

A survey of community exercise programmes for stroke survivors in Scotland

Stroke is the most common cause of complex disability in the community. Physical fitness is often reduced after stroke, but training can improve fitness and function. UK and international stroke clinical guidelines recommend long-term exercise participation for stroke survivors. However, there has been no previous research into what services are available to support this. In 2009, we conducted the first European survey of community Exercise after Stroke services. A link to our web-based survey was emailed to health, leisure service and stroke charity contacts in Scotland with email and telephone follow-up to non-respondents. The overall response rate was 64% (230/361). A total of 14 Exercise after Stroke services were identified, the majority of which were run by charity collaborations (7/14), followed by leisure centre services (4/14) and health services (3/14). We sought information on session content, referral and assessment processes, and the qualifications of exercise instructors. This information was cross-referenced with current clinical and exercise guidelines to determine whether existing resources were sufficient to meet stroke survivors' needs for safe, effective and sustainable access to exercise. The results indicated a shortage of stroke-specific community exercise programmes. Further service development is required to ensure appropriate instructor training and referral pathways are in place to enable stroke survivors to access exercise services in accordance with current guidelines.     

Embodied health movements: new approaches to social movements in health

Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories: health access movements seek equitable access to health care and improved provision of health care services; constituency-based health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and embodied health movements (EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body to social movements, especially with regard to the embodied experience of people with the disease; 2) they typically include challenges to existing medical/scientific knowledge and practice; and 3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research and expanded funding. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement.     

Effect of an expansion in private sector provision of contraceptive supplies on horizontal inequity in modern contraceptive use: evidence from Africa and Asia

Background  

One strategic approach available to policy makers to improve the availability of reproductive and child health care supplies and services as well as the sustainability of programs is to expand the role of the private sector in providing these services. However, critics of this approach argue that increased reliance on the private sector will not serve the needs of the poor, and could lead to increases in socio-economic disparities in the use of health care services. The purpose of this study is to investigate whether the expansion of the role of private providers in the provision of modern contraceptive supplies is associated with increased horizontal inequity in modern contraceptive use.     

Service Utilization,Expenditures, and Success in a Well-Established System of Care for Young People with Serious Emotional Disorders

A major challenge in the implementation of systems of care is creating mechanisms to pay for services that are provided across social services systems and by multiple agencies. Using a managed care approach to coordinate service provision may be one way to effectively bridge the gap across agencies while also providing quality care. The authors explore the benefits of a managed care approach to service delivery within a well established system of care by describing the treatment planning process used by the system of care; describing the type and patterns of services provided to young people; and by describing the process used to bill for services. The authors also examine the impact of client and service characteristics on overall expenditures as well as the effect that patterns of service utilization and expenditures of care have on the likelihood that young people and their families will successfully meet their clinical objectives.     

Outpatient rehabilitation among stroke survivors--21 States and the District of Columbia, 2005

Stroke is a leading cause of severe and long-term disability in the United States. Approximately 700,000 persons in the United States have a new or recurrent stroke each year; among those who survive, only 10% recover completely, and many of the remaining survivors need rehabilitation because of resulting impairments. Long-term disability not only affects functional status and social roles among stroke survivors but also results in substantial costs; the combined direct and indirect costs of stroke are projected to be $62.7 billion in the United States in 2007. Although studies have established that timely and intensive rehabilitation can substantially improve patients' functional outcomes and quality of life after an acute stroke, few studies have provided population-based estimates of the prevalence of acute stroke rehabilitation. To examine the prevalence of outpatient stroke rehabilitation among selected populations, CDC assessed data from the 2005 Behavioral Risk Factor Surveillance System (BRFSS) survey on stroke survivors in 21 states and the District of Columbia (DC). This report summarizes the results of that assessment, which indicated that 30.7% of the stroke survivors received outpatient rehabilitation and a higher prevalence of outpatient stroke rehabilitation was reported among men, non-Hispanic blacks, unemployed or retired adults, and persons living in the center city of a metropolitan statistical area (MSA) than in comparison groups. The findings indicated that the prevalence of stroke survivors who were receiving outpatient stroke rehabilitation services was lower than would be expected if clinical practice guideline recommendations for all stroke patients had been followed. Increasing the number of stroke survivors who receive needed outpatient rehabilitation might lead to better functional status and quality of life in this population.