Experiences of caregivers and individuals living with traumatic brain injury in accessing health information: a qualitative investigation.

BACKGROUND/PURPOSE: Rehabilitation and treatment of chronic symptoms of traumatic brain injury (TBI) present life-long challenges. This qualitative study aimed to understand the experience of individuals with TBI and caregivers in finding and using health information and to understand their interest in participating in research. METHODS: Participants were recruited through hospital listservs, websites, social media, and word of mouth from across the US. A qualitative constructivism research method was used to analyze responses from semi-structured interviews with 24 individuals, 11 with TBI and 13 caregivers. RESULTS: Three major themes emerged from the analyses: 1) processes and resources for finding TBI-related health information, 2) reliability of information, and 3) participation in research. Study participants described using the internet, consulting with healthcare professionals, reading research articles, and seeking out information from other individuals with TBI or caregivers to search for information. Participants also shared their experiences related to evaluating the reliability of information and the impact of individuals with TBI and caregivers participating on research teams. CONCLUSION: Participants identified various needs in finding relevant health information and highlighted gaps in searching for and using health information. Participants identified an overarching need for improved dissemination of information that is both accessible and reliable.

Incorporating the Concept of Relevance in Clinical Rehabilitation Research and Its Reviews May Improve Uptake by Stakeholders.

ABSTRACT: The "relevance" of research to stakeholders is an important factor in influencing the uptake of new knowledge into practice; however, this concept is neither well defined nor routinely incorporated in clinical rehabilitation research. Developing a uniform definition, measurement standards, stakeholder engagement strategies, and guiding frameworks that bolster relevance may help incorporate the concept as a key element in research planning and design. This article presents a conceptual argument for why relevance matters, proposes a working definition, and suggests strategies for operationalizing the construct in the context of clinical rehabilitation research. We place special emphasis on the importance of promoting relevance to patients, caregivers, and clinicians and provide preliminary frameworks and innovative study designs that can assist clinical rehabilitation researchers in doing so. We argue that researchers who include a direct statement regarding why and to whom a study is relevant and who incorporate considerations of relevance throughout all phases of study design produce more useful research for patients, caregivers, and clinicians, increasing its chance of uptake into practice. Consistent consideration of relevance, particularly to nonacademic audiences, during the conceptualization, study design, presentation, and dissemination of clinical rehabilitation research may promote the uptake of findings by patients, caregivers, and providers.

Access, Utilization, and Implementation of Research Among Rehabilitation Nurses: A Qualitative Study.

PURPOSE: This study aimed to understand rehabilitation nurses' perceptions of research information, related barriers, and avenues for future research, specifically in those caring for individuals with burn injury, spinal cord injury, or traumatic brain injury. DESIGN: Qualitative semistructured interviews were conducted. METHODS: Eighteen interviews were conducted. A thematic network approach identified codes and developed basic, organizing, and global themes. RESULTS: Researchers identified factors that facilitated research uptake, determined organizational structures that support research culture, and described nurse engagement with literature. CONCLUSIONS: Although participants desired to engage with the research literature, they identified barriers including time constraints, heavy workloads, and lack of access. To facilitate research uptake, research must be easily accessible, be easily digestible, and include clinical practice recommendations. Research must expand its scope to address issues relevant to the rehabilitation population. CLINICAL RELEVANCE: Our findings may be used to drive improvements in research competence, facilitate knowledge translation, and support evidence-based practice among rehabilitation nurses.

Examination of Health Information Needs of Caregivers of and Individuals with Burn Injuries.

Burns are a leading cause of trauma worldwide with about 450,000 burn injuries being treated at medical facilities in the United States each year. Finding relevant information on the long-term consequences of burn injuries is a significant challenge for many individuals with burn injuries and their caregivers. This qualitative study aimed to identify how individuals with burn injuries and caregivers of individuals with burn injuries prefer to access and use health information, identify obstacles to accessing useful information, and identify information most needed by burn survivors and caregivers. Participants were recruited through hospital listservs, websites, social media, and word of mouth from across the United States. Semi-structured interviews were conducted with 23 individuals, 12 with burn injuries and 11 caregivers of individuals with burn injuries. Three specific needs were identified: (1) more direction from health professionals in finding health information relevant to burn injuries; (2) more internet-based access points that connect individuals to appropriate support networks; and (3) more support for long-term consequences of burn injuries, specifically with psychological, social, and other chronic physical issues. Participants identified various needs in finding relevant health information, thereby highlighting gaps in current literature and the dissemination of current literature. One potential way to address these deficiencies is to consider user-centered design principles in developing research, by more directly involving individuals with burn injuries and caregivers as part of the research team.

Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury.

Objectives: To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. Methods: For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Results: Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Conclusion: Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.

Narrative review of clinical practice guidelines for treating people with moderate or severe traumatic brain injury.

BACKGROUND: Practice guidelines (CPGs) provide informed treatment recommendations from systematic reviews and assessment of the benefits and harms that are intended to optimize patient care. Review of CPGs addressing rehabilitation for people with moderate/severe traumatic brain injury (TBI), has not been fully investigated. OBJECTIVE: Identify published, vetted, clinical practice guidelines that address rehabilitation for people with moderate/severe TBI. METHODS: Six data bases were accessed using key word search terms: "Traumatic Brain Injury" and "Clinical Practice Guidelines" and "Rehabilitation". Further inclusions included "adult" and "moderate or severe". Exclusions included: "mild" and "concussive injury". Three reviewers read abstracts and manuscripts for final inclusion. The AGREE II template was applied for additional appraisal. RESULTS: There were 767 articles retrieved using the search terms, 520 were eliminated because of content irrelevance; and 157 did not specify rehabilitation treatment or did not follow a process for CPGs. A total of 17 CPGs met all criteria and only 4 of these met all AGREE II criteria. CONCLUSION: There are few CPGs addressing rehabilitation for people with moderate/severe TBI. More interventional trials are needed to determine treatment effectiveness. Timely and methodologically sound vetting of studies are needed to ensure CPG reliability and facilitate access to quality, effective treatment for people with moderate/severe TBI.

Narrative Review of Clinical Practice Guidelines for Rehabilitation of People With Spinal Cord Injury: 2010-2020.

ABSTRACT: Clinical practice guidelines provide reliable, vetted, and critical information to bring research to practice. Some medical specialties (e.g., physical medicine and rehabilitation) provide multidomain treatment for various conditions. This presents challenges because physical medicine and rehabilitation is a small specialty, a diverse patient base in terms sociodemographics and diagnosis, treatments are difficult to standardize, and rehabilitation research is underfunded. We wished to identify quality and applicability of clinical practice guidelines and searched "Spinal Cord Injury AND Clinical Practice Guidelines AND Rehabilitation" and vetting process.Three hundred fifty-nine articles were identified of which 58 met all criteria for full-text review of which 13 were included in the final selection. Additional publications were accessed from a nondatabase search. Five articles addressed postacute care, community treatment. Nine articles had no recorded vetting process but addressed rehabilitation as an outcome and were included separately. Many of the clinical practice guidelines were developed without evidence from randomized controlled trials, one had input from stakeholders, and some are out of date and do not address important aspects of changes in demographics of the affected population and the use of newer technologies such as sensors and robotics and devices. Identification of these gaps may help stimulate treatment that is clinically relevant, accessible, and current.

Paucity of Clinical Practice Guidelines for the Rehabilitation of Burn Survivors.

Clinical practice guidelines (CPGs) provide an efficient route from research to practice because they follow a prescribed, vetted process for evidence collection. CPGs offer underserved fields, such as burn rehabilitation, an accessible approach to reliable treatment. A literature search was performed using the terms "Burns AND CPGs AND Rehabilitation." Three reviewers determined whether guideline development followed an established vetting process. "Rehabilitation" required evidence of treatment to improve, maintain, or restore human function and provide treatment to facilitate recovery. Only 160 articles were obtained and, after adding the term "functional outcome," 62 remained for full-text review, of which 21 were eligible. When articles were scored for inclusion of both rehabilitation AND function or functional outcome AND guideline vetting, seven articles remained. One was community based. Nine articles had no recorded vetting process but addressed rehabilitation as an outcome. There is a paucity of CPGs relevant to clinical rehabilitation for burn survivors, likely a result of very few published intervention trials, rare randomized controlled trials addressing rehabilitation, absence of data to establish an evidence base for practice recommendations, an inadequate number of community-based intervention trials, and little patient input. It is likely that rehabilitation of burn survivors will improve if more people gain skills in meeting the needs of people with burn injury. An increase in trained professionals may lead to an increase in intervention trials and research to establish evidence for CPGs. People engaged in burn research have an opportunity to devise a systematic, generally agreed-upon approach toward evaluating burn patients and treatment outcomes that will permit data sharing across the world and assess patients throughout the acute and chronic phases of burn injury.

Scoping review of peer reviewed publications addressing rehabilitation for people sustaining traumatic spinal cord injury.

Study Design: Scoping review Objective: To study the design, clinical setting and outcome measures used in spinal cord injury rehabilitation publications. Methods: A literature search on PubMed and Medline was conducted focusing on articles published between 1990-2016 and using "traumatic SCI", "functional outcomes", "rehabilitation", "work" and "return to work" as outcomes. Studies were categorized based on design (intervention, including RCTs vs. non-intervention studies), settings (inpatient vs. outpatient vs. transition), and outcome measures used (impairment vs. function vs. participation/integration vs. quality of life vs. symptoms). Work-related studies were categorized independently. Results: Five hundred forty-four articles met the inclusion criteria. Of these, 234 were interventional studies, including 23 RCTs. Studies were evenly divided among inpatient, outpatient and transition settings. Of the 234 interventional studies, 143 used functional evaluations. Sixty-one different functional instruments were used, with a predominant use of the Functional Independence Measure (61 times) and an additional use of SCI-specific measures, i.e. Spinal Cord Independence Measure and Craig Handicap Assessment and Reporting Technique (13 times each). Fifty-one studies measured mobility, while only three measured hand functions. The work-related sub-analysis revealed 32 intervention studies (no RCTs), of which 15 used functional evaluations and only three focused on tetraplegia. Conclusion: Our study revealed a paucity of intervention trials and RCTs, indicating a dearth of knowledge that would be needed to establish evidence-based practice guidelines. This is particularly true for tetraplegia. While standard measures of function were frequently used, providing valuable data, there is no consensus about what exact outcome measure to use. Using newer measurement techniques, for instance based on the application of item response theory, should be considered to enhance uniformity.

Development and Testing of the CAHPS Cancer Care Survey.

PURPOSE: The Consumer Assessment of Healthcare Providers and Systems (CAHPS) Cancer Care Survey is a systematic assessment of health care experiences of patients with cancer. It supports comparisons among all cancer treatment settings and modalities. METHODS: Formative research included 16 focus groups with patients receiving treatment and family members; advice from a panel of oncology and quality improvement experts; and interviews with stakeholders representing oncology associations, accredited cancer centers, and community oncology practices. We conducted cognitive tests of the instrument and field tests at six cancer centers and four community oncology practices, after which the survey was finalized and obtained the CAHPS trademark. RESULTS: The survey includes 56 questions that form six core composite measures (Getting Timely Care; Supporting Patient Self-Management; Available to Provide Care and Information; Provider Communication; Care Coordination; and Courteous Office Staff); two single-item measures of family participation in care and interpreter services; and two global ratings of cancer care and the treatment team. Sixteen additional items form three supplemental composite measures: Shared Decision-Making, Keeping Patients Informed, and Access to Care. CONCLUSION: Mail-only, mail-telephone mixed-mode, and Web-mail mixed-mode data collection methods are recommended. The questionnaires and instructions for use are free and available in English and Spanish on the CAHPS Website (www.ahrq.gov/cahps).

A scoping review of burn rehabilitation publications incorporating functional outcomes.

OBJECTIVE: The objective for this manuscript is two-fold: determine the scope of clinical rehabilitation research involving burn-injured persons and assess whether research outcomes include function, return to needed, and desirable routines. Has this research addressed rehabilitation needs of the burn injured? METHODS: We performed a scoping review of literature (1990-2016) using the method of Arksey and O'Malley. Search terms included "rehabilitation", "function", "burn injury" and "work". Two independent reviewers identified articles that met criteria for abstract and full review. Variables of interest were counts of the number of intervention studies, studies performed in outpatient settings/inpatient settings, or both; count of the distribution of outcome measures that included impairment, function, participation, return to prior roles and percent of burns rehabilitation publications as a function of total rehabilitation articles published. RESULTS: Sixty-four articles were selected for review and 22 employed an intervention. Nine articles were intervention trials that used functional measures. Of the 22 intervention trials 3 (14%) were performed while subjects were inpatients, 9 (41%) while they were outpatients, and 10 (45%) while they were both. There were 67 articles that met inclusion for work-related studies. Fourteen were intervention trials, 9 utilized functional outcomes and 5 used impairment outcomes exclusively. Less than 1% of clinical rehabilitation research addresses burns injury and <1% of the randomized trials in rehabilitation relates to burn injury CONCLUSIONS: There are few studies, few intervention trials and among these, very few that use function or return to community based activity as outcomes for people with burn injury.

Scoping review of clinical rehabilitation research pertaining to traumatic brain injury: 1990-2016.

INTRODUCTION: Understanding the impact of disease on function and improving functional outcomes is an important goal of rehabilitation. This scoping review analyzes 25 years of published traumatic brain injury (TBI) clinical rehabilitation research (CRR) to determine the frequency with which function is a research goal. METHODS: The review protocol was prepared by experienced clinical researchers in the field. We used these search terms: "moderate traumatic brain injury" and "severe traumatic brain injury" and "functional outcomes"; and "rehabilitation" and "educational outcomes" or "cognition" or "community roles" or "community integration" "behavior" or "neuropsychology" or "quality of life", or "vocational outcomes" or "work" or "return to work". Publications from January 1, 1990-December 31, 2016 were included. RESULTS: 1,815 articles met initial criteria, of which 202 were intervention studies, 84 were randomized controlled trials and 353 prospective non-intervention studies. The combination of intervention and prospective non-intervention studies (n = 555) were analyzed for the kind of measurement tools used. Impairment measures (60%) and symptom measures (43%) either singly or in combination were most frequently used. Measures of function were employed in fewer than 30%. For single outcomes, 95 publications used impairment measures, 60 used symptoms and only18 used function. There were 117 studies that used neurocognitive measures. Participation/societal integration evaluation tools were used for community integration(n = 77) employment (n = 50) and independent living status (n = 37). DISCUSSION: This scoping review identifies a need for additional types of clinical research in the field of TBI CRR. Much of the research is aimed at mitigating impairment and controlling symptoms rather than promoting function. Future efforts by the CRR community studying TBI should address this need.

Health status, difficulties, and desired health information and services for veterans with traumatic brain injuries and their caregivers: A qualitative investigation.

Traumatic brain injury (TBI) is considered the signature injury among military service member and Veterans who served in Operation Iraqi Freedom and Operation Enduring Freedom with over 360,000 individuals sustaining a first-time TBI in the military. These service members and Veterans, and their caregiver(s), must navigate multiple health systems and find experts across many fields of expertise to recover and optimize functionality. Twenty-two individuals, 10 caregivers of Veterans with TBI, 12 Veterans with TBI, participated in semi-structured interviews. Responses were coded using NVivo. Participants from both groups reported difficulties finding community supportive services (support groups) in local communities. Most participants identified the need for an advocate or point-person to help guide them to needed services and provide ongoing support in the post-acute health care recovery phase. Caregivers and Veterans desired a more personalized recovery plan from their medical professionals. When describing their ideal health information and services model most identified interactivity and twenty-four-hour availability as essential components. To provide Veterans and caregivers with optimal support and resources to navigate a complicated health services system, advocates and personalized care plans are needed. Future research should examine the feasibility and cost-effectiveness of these services.

A qualitative study examining methods of accessing and identifying research relevant to clinical practice among rehabilitation clinicians.

PURPOSE: Research examining the utilization of evidence-based practice (EBP) specifically among rehabilitation clinicians is limited. The objective of this study was to examine how various rehabilitative clinicians including physical therapists, occupational therapists, rehabilitation counselors, and physiatrists are gaining access to literature and whether they are able to implement the available research into practice. METHODS: A total of 21 total clinicians were interviewed via telephone. Using NVivo, a qualitative analysis of the responses was performed. RESULTS: There were similarities found with respect to the information-seeking behaviors and translation of research across the different clinician types. Lack of time was reported to be a barrier for both access to literature and implementation of research across all clinician types. The majority of clinicians who reported having difficulty with utilizing the published literature indicated that the literature was not applicable to their practice, the research was not specific enough to be put into practice, or the research found was too outdated to be relevant. In addition, having a supportive work environment aided in the search and utilization of research through providing resources central to assisting clinicians in gaining access to health information. CONCLUSION: Our study identified several barriers that affect EBP for rehabilitation clinicians. The findings suggest the need for researchers to ensure that their work is applicable and specific to clinical practice for implementation to occur.

Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation.

BACKGROUND: In order to meet the challenges of caring for an injured person, caregivers need access to health information. However, caregivers often feel that they lack adequate information. Previous studies of caregivers have primarily focused on either their time and emotional burdens or their health outcomes, but the information needs of caregivers have not been thoroughly investigated. OBJECTIVE: The purpose of this investigation was to identify the preferred sources of health information for caregivers supporting individuals with injuries and to explore how access to this information could be improved. METHODS: A total of 32 caregivers participated in semistructured interviews, which were used in order to develop a more in-depth understanding of these caregivers' information needs. Digital audio recordings of the interviews were used for analysis purposes. These audio recordings were analyzed using a thematic analysis or qualitative content analysis. All of participant's interviews were then coded using the qualitative analysis program, Nvivo 10 for Mac (QSR International). RESULTS: The caregivers endorsed similar behaviors and preferences when seeking and accessing health information. Medical professionals were the preferred source of information, while ease of access made the Internet the most common avenue to obtain information. The challenges faced by participants were frequently a result of limited support. In describing an ideal health system, participants expressed interest in a comprehensive care website offering support network resources, instructive services about the injury and caregiving, and injury-specific materials. CONCLUSIONS: According to the participants, an ideal health information system would include a comprehensive care website that offered supportive network resources, instructive services about the injury and caregiving, and materials specific to the type of patient injury.

A need for an augmented review when reviewing rehabilitation research.

There is a need for additional strategies for performing systematic reviews (SRs) to improve translation of findings into practice and to influence health policy. SRs critically appraise research methodology and determine level of evidence of research findings. The standard type of SR identifies randomized controlled trials (RCTs) as providing the most valid data and highest level of evidence. RCTs are not among the most frequently used research design in disability and health research. RCTs usually measure impairments for the primary research outcome rather than improved function, participation or societal integration. It forces a choice between "validity" and "utility/relevance." Other approaches have effectively been used to assess the validity of alternative research designs, whose outcomes focus on function and patient-reported outcomes. We propose that utilizing existing evaluation tools that measure knowledge, dissemination and utility of findings, may help improve the translation of findings into practice and health policy.

Impact of a decision-making aid for suspected urinary tract infections on antibiotic overuse in nursing homes.

BACKGROUND: Antibiotics are highly utilized in nursing homes. The aim of the study was to test the effectiveness of a decision-making aid for urinary tract infection management on reducing antibiotic prescriptions for suspected bacteriuria in the urine without symptoms, known as asymptomatic bacteriuria (ASB) in twelve nursing homes in Texas. METHOD: A pre- and post-test with comparison group design was used. The data was collected through retrospective chart review. The study sample included 669 antibiotic prescriptions for suspected urinary tract infections ordered for 547 nursing home residents. The main measurement for the outcome variable was whether an antibiotic was prescribed for suspected urinary tract infections with no symptoms present. RESULTS: Most of the prescriptions for antibiotics UTIs were written without documented symptoms - thus for asymptomatic bacteuria (ASB) (71 % during the pre-intervention period). Exposure to the decision-making aid decreased the number of prescriptions written for ASB (from 78 % to 65 % in the low-intensity homes and from 65 % to 57 % in the high-intensity homes), and decreased odds of a prescription being written for ASB (OR = 0.63, 95 % CI = 0.25 - 1.60 for low-intensity homes; OR = 0.79, 95 % CI = 0.33 - 1.88 for high-intensity homes). The odds of a prescription being written for ASB decreased significantly in homes that succeeded in implementing the decision-making aid (OR = 0.35, 95 % CI = 0.16-0.76), compared to homes with no fidelity. CONCLUSIONS: The decision-making aid improved antibiotic stewardship in nursing homes.

Effects of organizational context on Lean implementation in five hospital systems.

BACKGROUND: Despite broad agreement among researchers about the value of examining how context shapes implementation of improvement programs and projects, limited attention has been paid to contextual effects on implementation of Lean. PURPOSE: To help reduce gaps in knowledge of effects of intraorganizational context, we researched Lean implementation initiatives in five organizations and examined 12 of their Lean rapid improvement projects. All projects aimed at improving clinical care delivery. METHODOLOGY/APPROACH: On the basis of the literature on Lean, innovation, and quality improvement, we developed a framework of factors likely to affect Lean implementation and outcomes. Drawing on the framework, we conducted semistructured interviews and applied qualitative codes to the transcribed interviews. Available documents, data, and observations supplemented the interviews. We constructed case studies of Lean implementation in each organization, compared implementation across organizations, and compared the 12 projects. FINDINGS: Intraorganizational characteristics affecting organization-wide Lean initiatives and often also shaping project outcomes included CEO commitment to Lean and active support for it, prior organizational capacity for quality improvement-based performance improvement, alignment of the Lean initiative with the organizational mission, dedication of resources and experts to Lean, staff training before and during projects, establishment of measurable and relevant project targets, planning of project sequences that enhance staff capabilities and commitment without overburdening them, and ensuring communication between project members and other affected staff. Dependence of projects on inputs of new information technology was a barrier to project success. Incremental implementation of Lean produced reported improvements in operational efficiency and occasionally in care quality. However, even under the relatively favorable circumstances prevailing in our study sites, incremental implementation did not readily change organizational culture. PRACTICE IMPLICATIONS: This study should alert researchers, managers, and teachers of management to ways that contexts shape Lean implementation and may affect other types of process redesign and quality improvement.

Identifying and Understanding the Health Information Experiences and Preferences of Individuals With TBI, SCI, and Burn Injuries.

INTRODUCTION: Traumatic brain injury, spinal cord injury, and burn injury can cause lifelong disability and changes in quality of life. In order to meet the challenges of postinjury life, various types of health information are needed. We sought to identify preferred sources of health information and services for persons with these injuries and discover how accessibility could be improved. METHODS: Thirty-three persons with injury participated in semistructured interviews. Responses to interview questions were coded using NVivo. RESULTS: Participants' difficulties accessing health information varied by injury type and individually. The majority of respondents found information via the Internet and advocated its use when asked to describe their ideal health information system. Nearly all participants supported the development of a comprehensive care website. When searching for health information, participants sought doctor and support group networks, long-term health outcomes, and treatments specific to their injury. CONCLUSION: To optimize the quality of health information resources, Internet-based health-care platforms should add or highlight access points to connect patients to medical professionals and support networks while aggregating specialized, injury-specific research and treatment information.