A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States.

PURPOSE: The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. METHODS: Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. RESULTS: Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. CONCLUSIONS: Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs. Implications for rehabilitationMost people with amyotrophic lateral sclerosis (PALS) in this sample reported experiencing dysarthria, with 71.3% indicating at least some detectable speech disturbance (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating ≤ 3) and 56.5% reporting reduced intelligibility (ALSFRS-R speech rating ≤ 2).Respondents used a wide variety of communication methods. Among respondents who were unable to meet their communication needs with speech alone, 84.6% used unaided methods (including speech), 52.3% used low-tech augmentative and alternative communication (AAC) and 90.8% used a speech-generating device.Service delivery improvements are needed to ensure timely, ongoing and comprehensive AAC education and intervention for PALS and their families.Communication over video calls (including virtual healthcare visits) is common among PALS and may be an important target for AAC intervention as the COVID-19 pandemic continues to limit in-person gatherings and appointments.

Can patient-centered communication reduce the effects of medical mistrust on patients' decision making?

OBJECTIVE: Mistrust in medical institutions has been implicated as a barrier that disproportionately affects the quality of health care received by patients. Although patient-centered communication has been shown to improve patient-provider relationships, little is known as to whether it may reduce the effects of medical mistrust on patients' decision-making and trust in physicians (physician mistrust). METHOD: In a laboratory study, 231 primary care patients (101 African American and 130 White participants) were randomly assigned to one of two conditions in which they viewed video recorded, standardized vignettes depicting a cardiologist recommending coronary bypass surgery to a patient diagnosed with angina and 3-vessel coronary artery disease. In each vignette, the cardiologist-actor demonstrated either low or high patient-centered communication behavior. Participants were asked to assume the role of the patient interacting with the video-recorded physician. RESULTS: Hypotheses were partially supported. High levels of medical mistrust were associated with greater physician mistrust and lesser endorsement of the hypothetical bypass surgery. Among patients exposed to high patient-centered communication, the relationships between medical mistrust and both physician mistrust and surgery endorsement were weaker than among patients exposed to low patient-centered communication. Although African American patients reported greater medical mistrust compared with White patients, respondents' race did not moderate the relationships. CONCLUSIONS: Results suggest that mistrust toward health care may unfavorably affect interactions and patients' health-related outcomes. Physicians may buffer the effects of mistrust by using patient-centered communication skills such as soliciting the patient's concerns and priorities and being responsive to the health care needs which patients identify (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Racial centrality may be linked to mistrust in healthcare institutions for African Americans.

Evidence suggests that racial identity is an important component to African Americans' self-concepts and therefore may be relevant to patients' trust in healthcare, yet little is known as to how racial identity may influence trust or mistrust. African American adults (N = 220) in the greater Portland, Oregon, area provided survey reports of healthcare-related attitudes and experiences. Those who reported higher racial centrality had lower trust in healthcare institutions. Based on these findings, clinicians employing patient-centered care approaches should recognize racial identity as an important component to patients' experiences when they seek to deliver equitable care to African American patients.

Out-of-Hospital Pediatric Patient Safety Events: Results of the CSI Chart Review.

OBJECTIVE: Studies of adult hospital patients have identified medical errors as a significant cause of morbidity and mortality. Little is known about the frequency and nature of pediatric patient safety events in the out-of-hospital setting. We sought to quantify pediatric patient safety events in EMS and identify patient, call, and care characteristics associated with potentially severe events. METHODS: As part of the Children's Safety Initiative -EMS, expert panels independently reviewed charts of pediatric critical ambulance transports in a metropolitan area over a three-year period. Regression models were used to identify factors associated with increased risk of potentially severe safety events. Patient safety events were categorized as: Unintended injury; Near miss; Suboptimal action; Error; or Management complication ("UNSEMs") and their severity and potential preventability were assessed. RESULTS: Overall, 265 of 378 (70.1%) unique charts contained at least one UNSEM, including 146 (32.8%) errors and 199 (44.7%) suboptimal actions. Sixty-one UNSEMs were categorized as potentially severe (23.3% of UNSEMs) and nearly half (45.3%) were rated entirely preventable. Two factors were associated with heightened risk for a severe UNSEM: (1) age 29 days to 11 months (OR 3.3, 95% CI 1.25-8.68); (2) cases requiring resuscitation (OR 3.1, 95% CI 1.16-8.28). Severe UNSEMs were disproportionately higher among cardiopulmonary arrests (8.5% of cases, 34.4% of severe UNSEMs). CONCLUSIONS: During high-risk out-of-hospital care of pediatric patients, safety events are common, potentially severe, and largely preventable. Infants and those requiring resuscitation are important areas of focus to reduce out-of-hospital pediatric patient safety events.

The role of simulation in mixed-methods research: a framework & application to patient safety.

BACKGROUND: Research in patient safety is an important area of health services research and is a national priority. It is challenging to investigate rare occurrences, explore potential causes, and account for the complex, dynamic context of healthcare - yet all are required in patient safety research. Simulation technologies have become widely accepted as education and clinical tools, but have yet to become a standard tool for research. METHODS: We developed a framework for research that integrates accepted patient safety models with mixed-methods research approaches and describe the performance of the framework in a working example of a large National Institutes of Health (NIH)-funded R01 investigation. RESULTS: This worked example of a framework in action, identifies the strengths and limitations of qualitative and quantitative research approaches commonly used in health services research. Each approach builds essential layers of knowledge. We describe how the use of simulation ties these layers of knowledge together and adds new and unique dimensions of knowledge. CONCLUSIONS: A mixed-methods research approach that includes simulation provides a broad multi-dimensional approach to health services and patient safety research.

Emergency medical services responders' perceptions of the effect of stress and anxiety on patient safety in the out-of-hospital emergency care of children: a qualitative study.

OBJECTIVE: Prehospital emergency medical services (EMS) providers report anxiety as the second most common contributor to paediatric patient safety events. The objective of this study was to understand how EMS providers perceive the effect of stress and anxiety on paediatric out-of-hospital patient safety. SETTING: This was a nationwide study of EMS providers from 44 of 50 (88%) US states. PARTICIPANTS: A total of 753 eligible EMS professionals, including emergency medical technicians, emergency department physicians and nurses (general and paediatric), and respiratory therapists who participate in out-of-hospital transports. PRIMARY AND SECONDARY OUTCOME MEASURES: Outcomes included responses to: (1) clinical situations where heightened stress or anxiety was likely to contribute to safety events, (2) aspects of these clinical situations that cause stress or anxiety and (3) how stress or anxiety may lead to paediatric safety events. RESULTS: EMS providers reported that the clinical situations where stress and anxiety were more likely to contribute to paediatric patient safety events were trauma, respiratory distress and cardiac issues. Key themes were: (1) provider sympathy or identification with children, (2) difficulty seeing an innocent child hurt and the inherent value of children and (3) insufficient exposure to paediatric emergencies. CONCLUSIONS: Caring for paediatric emergencies creates unique stresses on providers that may affect patient safety. Many of the factors reported to cause provider stress and anxiety are inherent attributes of children and therefore not modifiable. Tools that support care during stressful conditions such as cognitive aids may help to mitigate anxiety in the prehospital care of children. Further research is needed to identify opportunities for and attributes of interventions.

What is the key to culturally competent care: Reducing bias or cultural tailoring?

OBJECTIVE: To gain a better understanding as to whether disparities in patient-provider relationships arise from ethnic minority patients being treated differently than European American patients while they would prefer to be treated the same, or whether disparities arise when ethnic minority patients are treated the same as European American patients while they would prefer to be treated differently. METHOD: African-American, Latina/Latino and European American community members were recruited to participate in one of 27 focus group discussions. Topics included what made a good or bad relationship with a doctor and what led one to trust a doctor. A thematic analysis was conducted using NVivo 10. RESULTS: Patients of all groups described experiences that reflected the concepts of patient-centred care, such as wanting a clinician who is attentive to patients' needs. African-American patients reported experiences they viewed as discriminatory. Some African-American patients felt it was appropriate to racially/ethnically contextualise their care, and most Latina/Latino patients preferred language/culturally concordant clinicians. CONCLUSION: Health care disparities might be reduced through a patient-centred approach to cultural competency training, general knowledge of the cultural context of clinicians' patient population, and attention to the effects of racial bias and discrimination among both clinicians and non-clinical staff.

African American experiences in healthcare: "I always feel like I'm getting skipped over".

OBJECTIVE: Although African Americans perceive discrimination in health care settings, experience higher levels of medical mistrust compared with European Americans, and experience poorer communication with health care providers, little is known as to how these barriers to quality patient-provider relationships arise and manifest themselves. This study examined experiences of African American community members regarding these barriers and additionally explored participants' perspectives on race in the patient-provider relationship. METHODS: Focus groups were conducted as part of a study exploring participants' experiences and relationships in health care settings. Sixty African American adults were recruited through community settings and activities to participate in 1 of 9 focus groups segmented by gender. Transcripts were reviewed for content related to perceived discrimination, mistrust, poor communication, and race discordance. Themes providing insight into participants' subjective experience of these potential relationship barriers were derived through qualitative coding (using NVivo 10) and iterative discussion. RESULTS: Perceived discrimination arose when African American patients, particularly women, felt their symptoms or problems were discredited. Medical mistrust occurred when clinicians did not convey respect to patients, leaving patients to wonder whether their clinician's treatment was discriminatory or not. Poor communication arose when clinicians did not acknowledge patients' perspectives during interactions. Patients often viewed these actions as discriminatory. CONCLUSIONS: African Americans experience poor communication with their health care providers, medical mistrust, and perceived discrimination when accessing health care in numerous and sometimes interrelated ways. The investigators recommend ways to reduce the experience of such barriers and to improve patient-provider relationships for African Americans in health care. (PsycINFO Database Record

Understanding the value of mixed methods research: the Children's Safety Initiative-Emergency Medical Services.

Mixed methods research has significant potential to broaden the scope of emergency care and specifically emergency medical services investigation. Mixed methods studies involve the coordinated use of qualitative and quantitative research approaches to gain a fuller understanding of practice. By combining what is learnt from multiple methods, these approaches can help to characterise complex healthcare systems, identify the mechanisms of complex problems such as medical errors and understand aspects of human interaction such as communication, behaviour and team performance. Mixed methods approaches may be particularly useful for out-of-hospital care researchers because care is provided in complex systems where equipment, interpersonal interactions, societal norms, environment and other factors influence patient outcomes. The overall objectives of this paper are to (1) introduce the fundamental concepts and approaches of mixed methods research and (2) describe the interrelation and complementary features of the quantitative and qualitative components of mixed methods studies using specific examples from the Children's Safety Initiative-Emergency Medical Services (CSI-EMS), a large National Institutes of Health-funded research project conducted in the USA.

Patient Safety Perceptions in Pediatric Out-of-Hospital Emergency Care: Children's Safety Initiative.

OBJECTIVE: To characterize emergency medical service (EMS) providers' perceptions of the factors that contribute to safety events and errors in the out-of-hospital emergency care of children. STUDY DESIGN: We used a Delphi process to achieve consensus in a national sample of 753 emergency medicine physicians and EMS professionals. Convergence and stability were achieved in 3 rounds, and findings were reviewed and interpreted by a national expert panel. RESULTS: Forty-four (88%) states were represented, and 66% of participants were retained through all 3 rounds. From an initial set of 150 potential contributing factors derived from focus groups and literature, participants achieved consensus on the following leading contributors: airway management, heightened anxiety caring for children, lack of pediatric skill proficiency, lack of experience with pediatric equipment, and family members leading to delays or interference with care. Somewhat unexpectedly, medications and communication were low-ranking concerns. After thematic analysis, the overarching domains were ranked by their relative importance: (1) clinical assessment; (2) training; (3) clinical decision-making; (4) equipment; (5) medications; (6) scene characteristics; and (7) EMS cultural norms. CONCLUSIONS: These findings raise considerations for quality improvement and suggest important roles for pediatricians and pediatric emergency physicians in training, medical oversight, and policy development.

Understanding safety in prehospital emergency medical services for children.

OBJECTIVE: For over a decade, the field of medicine has recognized the importance of studying and designing strategies to prevent safety issues in hospitals and clinics. However, there has been less focus on understanding safety in prehospital emergency medical services (EMS), particularly in regard to children. Roughly 27.7 million (or 27%) of the annual emergency department visits are by children under the age of 19, and about 2 million of these children reach the hospital via EMS. This paper adds to our qualitative understanding of the nature and contributors to safety events in the prehospital emergency care of children. METHODS: We conducted four 8- to 12-person focus groups among paid and volunteer EMS providers to understand 1) patient safety issues that occur in the prehospital care of children, and 2) factors that contribute to these safety issues (e.g., patient, family, systems, environmental, or individual provider factors). Focus groups were conducted in rural and urban settings. Interview transcripts were coded for overarching themes. RESULTS: Key factors and themes identified in the analysis were grouped into categories using an ecological approach that distinguishes between systems, team, child and family, and individual provider level contributors. At the systems level, focus group participants cited challenges such as lack of appropriately sized equipment or standardized pediatric medication dosages, insufficient human resources, limited pediatric training and experience, and aspects of emergency medical services culture. EMS team level factors centered on communication with other EMS providers (both prehospital and hospital). Family and child factors included communication barriers and challenging clinical situations or scene characteristics. Finally, focus group participants highlighted a range of provider level factors, including heightened levels of anxiety, insufficient experience and training with children, and errors in assessment and decision making. CONCLUSIONS: The findings of our study suggest that, just as in hospital medicine, factors at the systems, team, child/family, and individual provider level system contribute to errors in prehospital emergency care. These factors may be modifiable through interventions and systems improvements. Future studies are needed to ascertain the generalizability of these findings and further refine the underlying mechanisms.

Reducing HIV and partner violence risk among women with criminal justice system involvement: a randomized controlled trial of two motivational interviewing-based interventions.

Women with histories of incarceration show high levels of risk for HIV and intimate partner violence (IPV). This randomized controlled trial with women at risk for HIV who had recent criminal justice system involvement (n = 530) evaluated two interventions based on Motivational Interviewing to reduce either HIV risk or HIV and IPV risk. Baseline and 3, 6, and 9-month follow-up assessments measured unprotected intercourse, needle sharing, and IPV. Generalized estimating equations revealed that the intervention groups had significant decreases in unprotected intercourse and needle sharing, and significantly greater reductions in the odds and incidence rates of unprotected intercourse compared to the control group. No significant differences were found in changes in IPV over time between the HIV and IPV group and the control group. Motivational Interviewing-based HIV prevention interventions delivered by county health department staff appear helpful in reducing HIV risk behavior for this population.

Violence against women with HIV risk and recent criminal justice system involvement: prevalence, correlates, and recommendations for intervention.

This research note examines the prevalence and correlates of intimate partner violence (IPV) and other violence (OV) among women (N = 529) at risk for HIV and with histories of criminal justice system involvement. The 3-month prevalences of IPV and OV were 31.2% and 18.7%, respectively. IPV was associated with having a current main partner, substance use, sexual risk behavior, trading sex, anxiety, depression, and lower self-esteem. OV was associated with no current employment or schooling, unstable housing, drug use, trading sex, anxiety, depression, and lower self-esteem. The high prevalence of violence demonstrates the need for intervention in this population; the correlates show that effective interventions must address the complex issues in these women's lives.

Uncovering patterns of HIV risk through multiple housing measures.

Understanding the relationships between housing and HIV has been limited by reliance on a single housing indicator based on current living arrangements (e.g., stable, unstable, or homeless). This paper examines the cross-sectional and longitudinal relationships between five housing indicators (objective housing stability, subjective housing stability, supportive housing, number of residences in the last 6 months, and housing services needs) and four HIV risk behaviors (hard drug use, needle sharing, sex exchange, and unprotected intercourse) among women at-risk for HIV and with recent criminal justice system involvement (n = 493). In cross-sectional analyses, each risk behavior was associated with multiple indicators of poor housing, and the patterns of association varied by risk behavior. In the longitudinal analyses, changes in risk behavior were associated with changes in housing status since the previous assessment. These indicators reflect different aspects of housing and are uniquely associated with different risk behaviors. The relationships between housing and HIV risk are complex, and both constructs must be recognized as multidimensional.

Sexual behaviors in an urban bathhouse 15 years into the HIV epidemic.

OBJECTIVE: To characterize the population and sexual behaviors of men currently attending gay bathhouses. METHODS: Men entering a bathhouse in Portland, Oregon, were asked to complete a one-page questionnaire. Data collection ended when 1000 surveys were obtained. Questionnaires assessed demographics, self-reported HIV status, drug and alcohol use, and sexual behavior in the preceding 30 days. RESULTS: The estimated response rate was 80%-90%. Of 1000 respondents, 829 (83%) reported having anal or oral sex at a bathhouse in the previous 30 days, 715 (86%) engaged in oral sex, 420 (51%) in anal sex, and 89 (11%) in high-risk (unprotected anal) sex. In multivariate analysis, characteristics associated with men reporting high-risk sex compared with men reporting other sexual activities at the bathhouse were HIV infection (odds ratio [OR], 2.2; 95% confidence interval [CI], 1.02-4.0); >or= 5 sexual partners in previous 30 days (OR, 3.2; 95% CI, 2.0-5.3); having anonymous sex at other sites (OR, 2.1; 95% CI, 1.2-3.8). CONCLUSIONS: Although most bathhouse patrons engaged in lower risk activities, those reporting unprotected anal sex were more likely to report HIV infection and to have multiple sexual partners. Well into the HIV epidemic, bathhouses remain venues for ongoing spread of HIV and opportunities for intervention.