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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.

The scope and standards of professional nursing practice define and guide high-quality nursing care. This article describes the collaboration between the International Home Care Nurses Organization and the American Nurses Association to develop evidence-based scope and standards of practice relevant to home-based nursing around the world. This article describes the collaboration between the International Home Care Nurses Organization and the American Nurses Association to develop evidence-based scope and standards of practice relevant to home-based nursing around the world. [ABSTRACT FROM AUTHOR]

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]