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Abstract Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. Methods Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19’s effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. Results A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. Conclusions This research evaluates the pandemic’s interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities.

Previous research indicates home health nurses (HHNs) worry that current home health care trends are threatening their ability to provide high-quality nursing care. High-quality nursing requires patient-centered and culture-sensitive care. These 2 attributes are indicators of high-quality nursing care. In this qualitative study, 20 HHNs were interviewed to discover their insights into 2 research questions: What barriers affect HHNs' ability to provide patient-centered, culture-sensitive, high-quality nursing care and how do these barriers affect HHNs and patients? Participants were professional HHNs who provided skilled intermittent care to diverse patient populations in their homes. Participants believed that a lack of time, high productivity requirements, pay-per-visit compensation, documentation burden, EMR systems, and the "industrialization" of HHNs' practice create structural barriers to high-quality home health nursing. Medicare was perceived as contributing to the barriers with burdensome documentation requirements and regulations that impeded holistic patient-centered care. Nurse participants indicated that the effects of these barriers were nurse stress, burnout, moral distress, and intent to leave; lower patient outcomes and satisfaction; and healthcare disparities. Additional research about the structural barriers were reviewed and found to support the nurses' perceptions of barriers to high-quality nursing care. In a value-based purchasing system, agencies need to support high-quality nursing care by tackling the barriers to its practice. To address the barriers comprehensively, agencies can institute policies that mirror the American Nurses Credentialing Center's Pathway to Excellence ®. Medicare policy makers should examine how present policies adversely affect high-quality nursing care. [ABSTRACT FROM AUTHOR]

Introduction: Culture-sensitive (CS) and patient-centered (PC) care are considered essential to achieve high-quality equitable care. The purpose of this study was to determine how expert nurses incorporate CS/PC care into their assessment and care planning practices, especially for culturally diverse and marginalized patients. Methodology: Using a qualitative, descriptive design, we conducted a focus group at the October 2019 Transcultural Nursing Society Conference. Participants (n = 9) discussed how they instilled cultural sensitivity and patient-centeredness into their assessment and care planning skills. Results: Participants revealed attitudes, knowledge, and skills associated with CS/PC assessment and care planning. They also identified specific strategies for translating CS/PC theory into assessment and care planning practices. Discussion: Three principles and many pragmatic strategies for incorporating CS/PC care into daily practice emerged from the data. Nurses may find these principles and strategies helpful in integrating CS/PC care into their daily care of patients in busy clinical settings. [ABSTRACT FROM AUTHOR]

Introduction. Home health patients, who are members of minority and vulnerable groups, suffer disparate outcomes. Patient-centered care (PCC) and culturally-competent care (CCC) aim to facilitate high-quality, equitable care. How home health nurses incorporate PCC and CCC principles into their assessment and care-planning practices has not been -investigated. This study answers the question, " What is the process by which home health nurses develop their culture-sensitive/patient-centered assessment and care planning skills? " Methods. Home health nurses (n= 20) were recruited into this grounded theory study from agencies around the United States via flyers, websites, and contacts. We conducted in-depth recorded interviews using a semi-structured interview guide to ask questions about nurses' assessment and care-planning practices, their understanding of CCC and PCC principles, and facilitators/barriers to CCC and PCC practice. Results. Participants primarily gained their CCC and PCC assessment and care-planning skills through a "seat of your pants," trial-and-error process, with little educational or agency assistance. They combined caring, diverse patient experiences, and critical, creative self-reflection on their experiences to gradually learn helpful, though not optimal, CCC and PCC strategies. However, they reported numerous barriers that discouraged or distressed them in their quest to deliver culturally-competent and patient-centered care. Only a few nurses demonstrated the resilience to overcome these challenges creatively and happily. Conclusion. If we accept that patient-centered care and culturally competent care are key elements of high-quality, equitable care, this grounded theory may help home healthcare clinicians, administrators, educators, and policy-makers identify impact points for enhancing CS/PC practices. [ABSTRACT FROM AUTHOR]

Background: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggest early diagnosis and treatment are critical. The purpose of this study was to evaluate neurology appointment wait times for newborn screening identified infants, pediatric cases mirroring SMA symptomatology, and cases in which SMA is suspected by the referring physician. Approaches for triaging and expediting referrals in the US were also explored. Methods: Cure SMA surveyed healthcare professionals from two cohorts: (1) providers affiliated with SMA care centers and (2) other neurologists, pediatric neurologists, and neuromuscular specialists. Surveys were distributed directly and via Medscape Education, respectively, between July 9, 2020, and August 31, 2020. Results: Three hundred five total responses were obtained (9% from SMA care centers and 91% from the general recruitment sample). Diagnostic journeys were shorter for infants eventually diagnosed with SMA Type 1 if they were referred to SMA care centers versus general sample practices. Appointment wait times for infants exhibiting "hypotonia and motor delays" were significantly shorter at SMA care centers compared to general recruitment practices (p = 0.004). Furthermore, infants with SMA identified through newborn screening were also more likely to be seen sooner if referred to a SMA care center versus a general recruitment site. Lastly, the majority of both cohorts triaged incoming referrals. The average wait time for infants presenting at SMA care centers with "hypotonia and motor delay" was significantly shorter when initial referrals were triaged using a set of "key emergency words" (p = 0.036). Conclusions: Infants directly referred to a SMA care center versus a general sample practice were more likely to experience shorter SMA diagnostic journeys and appointment wait times. Triage guidelines for referrals specific to "hypotonia and motor delay" including use of "key emergency words" may shorten wait times and support early diagnosis and treatment of SMA. [ABSTRACT FROM AUTHOR]

Objectives: Reporting an incident to police is a key event in the criminal legal process. The current study centers types of disability and how this may shape victim and third-party reporting while considering well-known correlates. Methods: Using the National Crime Victimization Survey (2016–2020), the current study examines police reporting in incidents involving victims with disabilities compared to victims without disabilities. This study not only considers whether the victim reported, but also third-party reporting to the police. We also explore the reasons why individuals with disabilities did not report incidents to police. Results: Incidents involving victims with cognitive disabilities were less likely to be reported to the police by the victim. There were no statistical differences in third-party reporting for any of the forms of disability considered. Notably, in incidents involving both Deaf/Blind victims and victims with physical disabilities, victims were more likely to cite perceptions of police ineffectiveness as a reason for not reporting. In incidents with victims with physical or cognitive disabilities, fear of reprisal from the offender was a more salient concern. Conclusions: This study underscores the importance of examining the victimization experiences of marginalized populations and their willingness to engage with the criminal legal system. [ABSTRACT FROM AUTHOR]

Objective: As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. Methods: Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19's effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. Results: A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. Conclusions: This research evaluates the pandemic's interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities. [ABSTRACT FROM AUTHOR]

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Caldasia, a journal published by the Instituto de Ciencias Naturales of the Universidad Nacional de Colombia, was the arena of language tensions originating in scientific exchanges in the mid-20th century at a time when English was in the process of affirming its place as the lingua franca of science. In the 1940s, the journal showed indications of a multilingual process reflected in the considerable presence of US authors and their articles in English published in its pages. This paper examines Caldasia's communication circuit, specifically the negotiations that emerged between the editor and US researchers when deciding on the most appropriate language for publishing the articles. Selecting the language of the articles was considered by them as a critical element in determining the geographical scope of the journal, positioning Caldasia as a regional or international journal. This analysis demonstrates how the tension between multilingual repertoires and linguistic ideologies was experienced in Caldasia. The editor promoted Caldasia as a multilingual journal and to reach this objective the editor managed the multilingual repertoires of the authors in the journal. The case of Caldasia indicates that the Anglicization process of science in the XX century required intense scientific contacts carried out in non-English-speaking spaces; multilingualism was one of the strategies by which English became a globally accepted language. [ABSTRACT FROM AUTHOR]

This article explores how North Korean leaders tried to maneuver between Iran and Iraq to gain greater leverage in the Cold War. Both of these Middle Eastern countries seemed potentially attractive partners for Pyongyang, but they were often on hostile terms with each other. The article considers how the Iraq-Iran rivalry and domestic changes in Iraq and Iran affected North Korean policy. Even when Pyongyang's cooperation with one or the other of the two states reached a high level, the North Koreans also reached out to the other country, regardless of the position of either state and of external actors such as the Soviet Union and China. The North Koreans generally avoided taking a public stand on the Iraq-Iran dispute, but on occasion they became more deeply involved. Mainly, the North Korean government sought to maximize the number of its partners, rather than to make a stable commitment to just one state. In turn, both Iraq and Iran eventually came to perceive North Korea as a state that was mostly out to benefit itself rather than helping either of them. [ABSTRACT FROM AUTHOR]

Disease-modifying therapies for spinal muscular atrophy (SMA) are rapidly changing the outlook for many individuals by substantially altering the clinical course, phenotypic expression, and functional outcomes. Physical therapists have played critical roles in the effective conduct and execution of clinical trials leading to the approval of these therapies. Given the treatment landscape, educating practicing clinicians to understand best practice is of great importance, and a timely call to action to facilitate knowledge translation from SMA researchers to clinicians is necessary. The SMA Clinical Trial Readiness Program engaged clinical and research centers, identified physical therapy knowledge gaps related to evaluation and outcomes assessment, and provided educational resources, including the development of a SMA Best Practices Clinical Evaluator Toolkit. Toolkit content synthesizes evidence and covers a breadth of issues relevant to practice, including background on SMA and the drug pipeline; therapist roles and responsibilities related to research; clinical and research evaluation; and useful materials and resources for additional education, training, and professional development. Surveys and telephone interviews were conducted with physical therapists managing individuals with SMA to determine their SMA practice experience and educational needs. Their recommendations, along with synthesized SMA research evidence, provided input into toolkit content development and assisted in identifying gaps important to address. Impact was assessed over time via utilization feedback surveys downloaded by clinicians across various settings. Open-ended feedback supported beneficial use of the toolkit for clinicians and researchers working with individuals with SMA. Next steps should include timely dissemination to bring this resource and others into practice in a systematic, efficacious, and engaging manner. As the treatment landscape for SMA evolves, the therapist's role in multidisciplinary care and research is of great importance, and a call to action for the development, implementation, evaluation and reporting of informed knowledge using evidence-based knowledge translation strategies is critical. Impact Partnership among patient advocacy groups, industry collaborators, and key opinion leaders/experts can optimize essential resource development to address the knowledge gap for best practices in physical therapy. This partnership model can be replicated for other diseases, providing an efficient way to support clinical trial readiness and target early development of evidence-based content and resources related to both research and best practice clinical evaluation for physical therapist researchers, clinicians, and patients. While identifying knowledge gaps and resource development are initial steps toward change in SMA practice, a rapidly changing rehabilitation outlook warrants a call to action for enhanced efforts aimed at improving rehabilitation evaluation, assessment, and care for this population. It is critical to forge a timely path forward for development, implementation, and sustainability of effective knowledge translation to practice for SMA. [ABSTRACT FROM AUTHOR]

Introduction/Aims: Spinal muscular atrophy (SMA) treatment may increase survival and improve physical function among adolescents and young adults. Validated patient‐reported outcome measures are needed to understand which treatment benefits are clinically meaningful and to develop targeted resources for this population. To date, use of the SMA Health Index (SMA‐HI) in pediatric and young adult populations has been limited. Here, we report results from a survey of adolescents and young adults with SMA to quantifiably understand individuals' perceptions of disease burden. Methods: Participants aged 12–25 y with a self‐reported diagnosis of SMA completed an online survey containing demographic questions and the SMA‐HI, a patient‐reported outcome measure that assesses individuals' perceptions of disease burden in 15 symptomatic areas. Results: Eighty‐eight participants completed the survey. Total SMA‐HI scores and SMA‐HI subscale scores including shoulder and arm function; back, chest, and abdominal function; activity participation; hand and finger strength; swallowing function; gastrointestinal function; respiratory function; mobility and ambulation, and total disease burden were significantly higher (greater disease burden) in patients with poorer motor function and severe SMA. SMA‐HI total and subscale scores were generally lower in adolescents (12–17 y old) versus adults (18–25 y old), suggesting a possible progression of symptomatic disease burden over time. Discussion: This study demonstrates the utility of the SMA‐HI for measuring clinically relevant disease burden in adolescents and young adults with SMA. This study demonstrates how disease burden varies by age, SMA type, and other demographics. [ABSTRACT FROM AUTHOR]

Introduction: Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for recruitment and retention. This study sought to better understand clinical trial participant experiences and attitudes within spinal muscular atrophy (SMA), and how the evolving treatment landscape and participant characteristics may predict attitudes. Methods: A survey was developed following a review of published literature and discussions with caregivers of SMA trial participants. This was distributed via email to known trial participants in Cure SMA's database, announcements in Cure SMA's newsletter, and emails to SMA clinical trial principal investigators. Results: Seventy complete surveys reflecting unique clinical trial experiences were included in analysis. Responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. In regression analysis, participant gender, age, and race all emerged as significant predictors (p < 0.05) of motivators, concerns, stressors, and benefits, as did respondent type, knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. Conclusion: This research provides new perspective on patient experiences in SMA clinical trials. It underscores the importance of information and efforts to anticipate and accommodate participant needs. These findings may inform study design and interactions with research participants. They may become especially important in supporting recruitment and retention as more treatment options become available. Plain Language Summary: Clinical trials can be stressful experiences for patients and their caregivers, especially when participants are affected by serious diseases. By understanding trial participants' attitudes and experiences, researchers may be better able to accommodate their interests when designing and conducting research studies. This study sought insight into attitudes and experiences of spinal muscular atrophy (SMA) clinical trial participants by surveying people who participated in SMA clinical trials in the USA. The data used in analysis reflected 70 unique clinical trial experiences. Survey responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. Whether or not specific motivators, concerns, stressors, and benefits were important was predicted by participant gender, age, and race, as well as respondent type (participant or caregiver), knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. This research provides new perspective on patient experiences in SMA clinical trials, and may be used to inform future study design and interactions with research participants. [ABSTRACT FROM AUTHOR]

Based on ethnographies conducted in post-genocide communities in Bosnia and Herzegovina, in the Bosnian refugee diaspora groups in Australia, Europe and the USA, and fieldwork on the island of Tanna (Vanuatu), in this article I discuss the challenges of the researcher and the researched in negotiating the space between perceived cultural insiderness and professional outsiderness. Firstly, I start by outlining the concept of academic kinship, the intellectual and social connections and networks that sustain and set the parameters for the researcher's construction of reality. Building upon the idea of kinship and elective affinity, I then move on to discuss examples from the fieldwork and literature relating to "doubly-engaged ethnography" (PACHECO-VEGA & PARIZEAU, 2018, p.1)--involving both emic and etic perspectives--and consider ethics and politics of this research approach. I conclude with an ethnographic vignette from my fieldwork on an island of strangers, highlighting how the mutual commitment to elective affinity and embracing both emic and etic perspectives create a dynamic research context in which different engagements in the field open up a conceptual space where the local and the global intersect, and where the roles of researched and researcher, insiders and outsiders, continue to be negotiated and (re)defined. [ABSTRACT FROM AUTHOR]