Quality and Coordination of Care for Persons with Brain Injury in the Community: Developing a Survey

Background: Because of increasing demand on primary care physicians and a complex, fragmented, healthcare system , people now must coordinate their own healthcare and services. In response, care coordination has become a clinical specialty, typically done by nurses or social workers. People with disabilities (PWD) also must coordinate their care, including health and disability-support services, knowing who to call, advocating for themselves, and scheduling appointments, among other things. Such demands can be particularly problematic after brain injury, which may impair abilities to prioritize, coordinate, manage, and schedule activities. Coordinating services requires participation of the PWD, and supportive significant others (SSO). At present, no validated measures exist which characterize the activities that PWD and SSO do to ensure quality, coordinated care or that identify gaps in needed services. Purpose: Purposes of this thesis were: To continue development of a questionnaire on care coordination; to evaluate its clarity, acceptability, and content validity; and to collect an exploratory description of care coordination experienced be people with TBI and their SSO in the community. Methods: We completed development of the Care and Service Coordination and Management (CASCAM), an exploratory survey with structured quantitative questions and open-ended items, with versions for both the PWD and a SSO. Participants were primarily in the chronic phase of rehabilitation after brain injury. Quantitative results are primarily analyzed using descriptive methods. Interrelationships among items were also examined. Qualitative analyses identified major themes expressed in response to open-ended questions. Results: Content validity was established through verifying that the CASCAM successfully addresses issues related to care and service coordination which apply directly to people with brain injury and their SSO. Participants expressed 7 important themes in the qualitative analysis. The internal consistency of major groups of reported care coordination activities ranged from .774 to .945. Discussions: Care coordination is an essential instrumental activity of daily living for PWD living in the community. The level of internal consistency found strongly suggests that it is possible to provide a summary measure of coordination activities. Further research is needed to develop measures of care coordination to support efforts to improve our fragmented system of care

Dissertation: Examining and investigating home modifications and smart home technologies to reduce fall injury among older adults.

Nearly one in six U.S. residents are over the age of 65. The proportion of older adults in the U.S. is anticipated to grow to 22.1% of the total population by 2050. The cost of treating age related conditions and injuries is expensive, government programs including Medicaid paid over $550 Billion in 2017, and makes up between 14-16% of the federal budget each year. With the high cost of treating age related conditions and injuries, and the proportion of older adults continuing to increase every year, it is imperative that researchers and government entities find and invest in preventative measures in order to reduce injury and related healthcare costs. Among the many age-related injuries older adults suffer, falls are arguably the most important to address. It is estimated that one in three older adults has a fall every year. In 2016, falls were the seventh leading cause of death among older adults. Approximately one third of all fallers require medical attention after experiencing a fall. Over 800,000 older adults are hospitalized each year due to fall related injuries. Injuries sustained as a result of a serious fall include various fractures, traumatic brain injuries, and other cuts and bruises.Home modifications, and more recently smart home technologies, can help increase the safety of older adults living in the community. With older adults wanting to “age in place”, installing these modifications and technologies before an accident happens may lower rates of injury. Today, dozens of companies sell various smart home devices for the consumer market. Bud despite the high demand for these technologies by the American consumer, the ability of these devices to keep older adults safe, and how older adults value these technologies, remains uncertain. These home technologies may be particularly beneficial to older adults living in rural areas due to the increased isolation and limited access to healthcare resources. Previous research indicates rural populations have a greater proportion of older adults compared to urban areas, yet lack the infrastructure to provide specialty care to this population. It is estimated that more than 60 million family members provide some sort of informal care to an older adult relative. Of all of these family members, nearly 40% report spending 20 or more hours a week providing this unpaid care. Previous research has failed to examine how these family members feel about home modifications and technologies for their older adult relative. Finding ways to ease the burden of caring for older family members will significantly better the situations of many family relatives.This dissertation aims to cover three areas. 1. Identify people at risk of suffering subsequent fall injuries. Find the average time between an initial fall injury and a subsequent fall injury, and find average time between an initial fall injury and death.2. Examine the preferences of older adults living in a rural area towards various smart home technologies and home modifications.3. Examine the preferences of family members of older adults regarding smart home technologies and home modifications

An Assessment of Mental Health Services for Veterans in the State of Texas

This report describes the complex challenges faced by veterans and their families in seeking, navigating, and attaining adequate mental health care in Texas. There are 1.7 million veterans in Texas, comprising 8.6 percent of the adult population. According to the U.S. Department of Veteran Affairs (VA), the number of veterans requiring mental health services has grown dramatically and will continue to increase, making veterans’ mental health care an urgent issue in Texas. The federal agencies responsible for military and veterans mental health care, the U.S. Department of Defense (DoD) and the VA, have created new programs and invested significant financial and staff resources. Despite barriers to addressing veterans mental health needs. Texas state agencies have increased funding and instituted new mental health programs supporting returning veterans. Nonprofit agencies focused on veteran’s mental health have multiplied across Texas and the U.S. over the past decade to fill gaps in care. While these organizations provide a growing and increasingly diverse set of resources for veterans to extend the scope of support, volunteer efforts can suffer from fragmentation and overlap. The report identifies current practices, challenges, and opportunities within and across each group of service providers. The report draws on government reports, scholarly literature, and agency websites, as well as interviews with counselors, Veteran Service Officers, nonprofit providers, state officials, and veterans themselves. This report offers five recommendations toward the goal that veterans’ mental health care in Texas become comprehensive, inclusive, effective, and efficient. First, there is a need for greater inter-agency communication across organizations, improved outreach efforts, and increased services for hard-to-reach populations, such as homeless veterans. Second, federal agencies ought to address staff shortages, improve the transition from DoD to VA care, and increase feedback. Third, at the state level, specialized services are needed to address unique veterans’ needs concentrated in cities across Texas as well as those dispersed in rural areas. Fourth, providers can improve mental health care by integrating social services and law enforcement. Fifth, both veterans and providers can benefit if they recognize opportunities for cooperation and coordination and work towards long-term goals that emphasize outcomes that improve the lives of returning veterans. This research was funded in part by the Jack S. Blanton Research Fellowship and the George A. Roberts Research Fellowship of the IC² Institute.IC2 Institut

Leveling the Playing Field: Attracting, Engaging, and Advancing People with Disabilities

People with disabilities experience significant challenges in finding employment. The participation of people with disabilities in the workforce and their median income are both less than half that of the civilian workforce. They work part time 68 percent more frequently than people without disabilities. These disheartening results persist despite the enactment of significant federal legislation aimed at making the workplace more supportive and accessible to people with disabilities. The Conference Board Research Working Group (RWG) on Improving Employment Outcomes for People with Disabilities was convened to address how to overcome these disparities. It was sponsored by the Employment and Disability Institute at Cornell University, under a grant from the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education. The RWG members focused on four questions: 1) The business case: Is it advantageous for organizations to employ people with disabilities? 2) Organizational readiness: What should organizations do to create a workplace that enables people with disabilities to thrive and advance? 3) Measurement: How can success for both people with disabilities and the organization itself be determined? 4) Self-disclosure: How can people with disabilities, especially those whose disabilities are not obvious, be encouraged to identify themselves so that resources can be directed toward them and outcomes can be measured

Augmentative-Alternative Communication Access for Individuals with Communication Disorders in Medical Settings

This study surveyed speech-language pathologists (SLPs) working in medical settings in the state of Florida in order to: (a) assess the availability of AAC devices, related materials, and services in acute, sub-acute, long-term care, and outpatient medical facilities, (b) examine barriers and supports in providing AAC services to patients with complex communication needs (CCN) in the aforementioned settings, and (c) determine perceived levels of AAC knowledge of health care practitioners. One of the study\u27s major findings was that 97.59% of SLPs served at least one patient they identified as having CCNs, and 94.1% of respondents indicated that their patients could benefit from increased access to AAC devices and service delivery. A notable finding relating to the need for increased AAC-related communication partner instruction (CPI) is as follows: 97% and 100% of respondents indicated that increased CPI for medical practitioners/staff and family members, respectively, were important elements in order to ensure functional communication for individuals with AAC needs in the medical setting. Major barriers to providing AAC services related to device access (i.e., lack of AAC supports / devices, lack of funding for equipment, length of time of device funding). Other barriers were related to the nature of medical settings (i.e., frequently changing caseloads, limited time with patients) and demands of the job (i.e., lack of time to prepare AAC materials / devices). Supports to providing AAC services included low-tech AAC options and mobile technologies. In terms of practitioner knowledge, 57.6% of respondents rated themselves not at all or somewhat knowledgeable regarding AAC. Physicians, nurses, and other rehabilitation professionals were rated as less than knowledgeable by 95%, 97%, and 84.3% of participants, respectively. Overall, the findings of this study suggests there is a high prevalence of patients in medical settings with AAC needs, and some face unmet communication needs resulting from barriers related to the setting itself, lack of access to AAC devices and materials, and limited time spent on AAC service delivery

Outlook Magazine, Winter 2015

https://digitalcommons.wustl.edu/outlook/1197/thumbnail.jp

Alzheimer’s Disease and Other Dementias Workgroup: Alzheimer’s Disease and Other Dementias Report and Recommendations

Rates of Alzheimer’s disease and other dementias are expected to increase greatly over the next decades. Many practices lack guidelines on how to increase quality of diagnosing, treating, and supporting people with dementia and their family members and other caregivers. This workgroup met from January to November 2017, aligned with and built off the Alzheimer’s State Plan, and organized recommendations with the following focus areas: Early detection and appropriate diagnosis Ongoing care and support or management including for family members and caregivers Advance care planning and palliative care Assessment and planning for need for increased support and/or higher levels of care Preparing for potential hospitalization Screening for delirium risk during hospitalization for all patients over 6

An Ecological Approach to Rehabilitation for Traumatic Brain Injury

Advancements in technology, research, and practice are scientifically establishing the relationship between the mind, body, and built environment. In modern TBI rehabilitation medicine, a team of specialists works together to assess the physical, mental, and emotional effects of brain injuries on individual patients and to develop and carry out a plan of action that helps them to overcome, compensate for, and cope with changes in their levels of ability. TBI rehabilitation can integrate holistic practices that better consider an integrated mind-body relationship as well as the built environment as potentially significant factors in supporting functional ability.This thesis investigates the potential role of architecture, and specifically the design of a setting for traumatic brain injury rehabilitation, based on an ecological framework. Ecology is the study of organism-environment systems. In 2001, the World Health Organization adopted a model of ability/ disability that broadens the understanding of contributing factors to include the social and physical environment. Ecological psychology serves as a promising roadmap for the new era of neuroscience where a more holistic approach includes the mind-body and environment. Initial research began with a literature review of the principles, basis, history, and current state of neuroscience, brain injury, and ecological approaches to psychology, design, and science as applied to traumatic brain injury and the design of settings for TBI rehabilitation. Ecological approaches to design call for the design of the built environment to be in synergy with the natural processes of the planet rather than continuing the damaging patterns of industrial history. Ecological validity in science calls for real-world functioning results from research. Building on principles within ecological psychology, ecological design, and ecological validity, six architectural design guidelines were developed to address these obstacles that focus not just on the patient, but on the entire ecosystem that surrounds the TBI patient community in rehabilitation. These design guidelines include community interaction, encouragement of movement, therapy throughout, authenticity, respite, and multisensory stimulation. The design guidelines were applied to the design of a prototypical regional comprehensive inpatient rehabilitation hospital for traumatic brain injury, one of the most common emerging prototypical building types for TBI rehabilitation where patients live for weeks or months during recovery. The site selected was in a mid-size regional city on an existing medical campus in a mixed-use walkable community. The primary program elements include an inpatient wing, administrative, outpatient, clinical, therapy, and public areas. A site in Knoxville TN was then analyzed for constraints and opportunities with respect to the overlay of a building program for a Traumatic Brain Injury Rehabilitation Hospital based on the design guidelines. The thesis project proposes a rehabilitation facility designed according to ecological principles in science, psychology, and architecture with the intent to address the needs and rehabilitation of TBI patients more holistically. The proposal includes a series of distinct features from site design, building organization, spatial affordances, and building systems selected for their ecological impact. The constraint of a steeply sloped site presented a design opportunity to provide an atrium connector that facilitates community engagement with patients who possess a variety of physical and cognitive abilities through multisensory stimulation, multiple modes of vertically traversing the sloped site and multistory building, a rich regional material palette, a west-facing translucent solar screen for variable multisensory effects, and openness, connectivity, and order for intuitive wayfinding. The inpatient wings were designed for more diverse sensory experience with a variety of space scales, multi-function family areas, and outdoor porches. The sustainable design approach includes investigation of emerging laminated timber construction usage for institutional settings as well as environmental control systems that are earth-coupled, save energy, and provide a greater degree of personal control. The ecologically derived design guidelines permeated all scales of design from site selection to details and informed all program areas including multisensory and diverse therapy locations and patient spaces