Search

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.

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.

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.

Objective: Cure SMA initiated a study to further understand referral patterns and barriers impacting the pediatric-specialty care interface that may contribute to existing diagnostic delays in spinal muscular atrophy (SMA). Diagnostic awareness of SMA was also assessed. The study is part of a broader effort by the Cure SMA Industry Collaboration to further understand diagnostic delays in SMA. Background: SMA is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggests that early treatment is critical to improving survival, modifying disease progression, and is expected to alter the phenotype. Methods: Cure SMA conducted a survey gauging referral patterns, referral barriers, and diagnostic patterns in SMA among pediatricians. It was distributed …

Home healthcare patients, who are members of minority, marginalized, or vulnerable patient populations, are at risk for healthcare disparities. Inadequate attention to the needs of the many different types of diverse patient populations seen by home health agencies could compromise an agency’s outcome indicators, reimbursement in value-based payment programs and responsibility to deliver equitable quality care. Culturally competent home health nurses may have a role in decreasing disparities and improving patient outcomes. This article discusses the incidence of disparities in home health care and highlights literature about the economic, regulatory, accrediting, policy, social justice, and ethical issues surrounding disparate and inequitable care for home healthcare patients. Patients in need of culturally competent care include those characterized by diversity related to race, ethnicity, language, religion, socioeconomic status, sexual orientation, gender identification, mental and physical disabilities, and stigmatized diagnoses (e.g., obesity and substance abuse). Home healthcare nurses who strengthen the cultural competence of their care may be able to decrease the incidence of disparate outcomes. By investing in the cultural competence of their home healthcare nurses, agencies may strengthen their commitment to their missions and the financial health of their agencies.

This article examines the nature of implicit, or unconscious, bias and how such bias develops. It describes the ways that implicit bias among health care providers can contribute to health care disparities and discusses strategies nurses can use to recognize and mitigate any biases they may have so that all patients receive respectful and equitable care-regardless of their race, ethnicity, religion, sexual orientation, gender identification, socioeconomic status, disabilities, stigmatized diagnoses, or any characteristic that distinguishes them from societal norms.

Background With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12–25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12–25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. Results Eighty-five individuals—6 type Is, 58 type IIs, and 21 type IIIs—completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a variety of challenges, including but not limited to forming or maintaining close relationships, experiencing feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, notably in the survey, 39% of respondents requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.

Background Spinal Muscular Atrophy (SMA), a leading genetic cause of death in infants, is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. While early diagnosis of SMA is critical to modifying disease progression and improving outcomes, serious diagnostic delays persist. There is a need to improve SMA awareness, screening, and referral patterns. Methods Two online surveys, developed by Cure SMA for general pediatricians, were distributed by Medscape Education via email (September 2018, n = 300, December 2019, n = 600). The surveys asked about adherence to the American Academy of Pediatrics (AAP) developmental screening and surveillance guidelines, comfort with identification of early signs of neuromuscular disease (NMD), familiarity with SMA, and barriers to timely referral. Results In 2018, 70.3% of survey respondents indicated comfort in identifying early signs of NMD and 67.3% noted familiarity with SMA. 52.7% correctly indicated the need for genetic testing to make a definitive diagnosis of SMA, 74.0% meet or exceed developmental screening recommendations, and 52.0% said they would immediately refer to a specialist. In 2019, with a larger sample, 73.0% adhere to developmental screening guidelines, and awareness of the genetic testing requirement for SMA was significantly lower by 7.7% (p Conclusions Many pediatricians underutilize developmental screening tools and lack familiarity with diagnostic requirements for SMA. Continuing efforts to expand awareness and remove barriers to timely referral to SMA specialists, including reducing appointment wait times, are needed.

Background: With the approval of two treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a clinical meaningfulness survey to capture information, quantitatively and qualitatively, on the quality-of-life of this population. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the open-ended section in the survey along with the video contest findings are reported here.Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the open-ended section of the survey, while six individuals, mostly type II, participated in the SMA awareness video contest. In both settings, individuals detailed a wide variety of challenges, including but not limited to forming or maintaining close relationships, feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, in the survey, an overwhelming number of respondents (39%) requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to capture their insights in order to affect change.

Background Hospital-acquired pressure injuries strain organizational resources and negatively impact the quality of life of affected patients. However, early detection of pressure injuries is limited due to challenges with visual assessment, particularly in individuals with dark skin. Purpose The purpose of this systematic review was to determine whether sufficient research evidence exists to support the use of bedside technologies for early detection of pressure injures, which is inclusive of pressure-related blanchable erythema (PrBE), pressure-related nonblanchable erythema (PrNBE), and deep tissue pressure injury (DTPI). Search question What available bedside technologies enhance the early detection of pressure injuries? Methods A systematic search of Medline, CINAHL, Web of Science, and Cochrane databases was executed. Quantitative studies were included that examined whether accessible technologies could indicate the presence of PrBE, PrNBE, and DTPI. The quality of the research was evaluated using the Johns Hopkins Nursing Evidence-Based Practice Rating Scale. Findings We identified 18 eligible studies that represented a variety of technologies, including ultrasound (n = 5), thermography (n = 7), subepidermal moisture (SEM) measurement (n = 5), reflectance spectrometry (n = 2), and laser Doppler (n = 1). The methodological rigor in study quality was variable. Subepidermal moisture measurement provided the most consistent findings in the early detection of pressure injury. Conclusions Objective methods that provide accurate and timely assessment of DTPIs augment early implementation of optimal prevention and treatment measures. Evidence identified in this systematic review supports the use of SEM measurement devices as effective tools for early pressure injury detection. However, more research in the field of technology-enhanced, pressure injury detection is needed to support the use of existing and emerging devices.

Shirley Caillet Dieterich Lusk (1925–2017)

This article is an abridged version of a book chapter, Culturally and Linguistically Appropriate Services, published in the Handbook of Home Health Care Administration, Sixth Edition (Marilyn Harris, editor). The article describes the importance of culturally and linguistically competent care for the success of home health agencies. It uses the 15 standards of the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (CLAS Standards) as an outline for identifying strategies that home health leaders can incorporate into their agencies’ practices to enhance their care to culturally and linguistically diverse patients. Providing services that produce equitable outcomes for diverse patients is likely to enhance agency Home Health Compare and HHCAHPS (Home Health Care Consumer Assessment of Healthcare Providers and Systems) scores, Star Ratings, and reimbursement in a value-based reimbursement model.

Though extensive evidence demonstrates that U.S. minority patients suffer health care disparities, the incidence of disparities among the 3.3 million adult patients receiving skilled intermittent home health care services annually is unclear. The purpose of this systematic review is to determine the relationship of race/ethnicity on home health care patient outcomes.PRISMA guidelines were used to perform a systematic search of the literature within the CINHAL, Medline, and Web of Science databases. Search terms included variations on the terms: home health, minority race/ethnicity, and patient outcomes. Included studies evaluated adult patient outcomes to intermittent skilled home health care services from Medicare-certified agencies using federally defined race/ethnicity categories. Research quality was evaluated using the Johns Hopkins Evidence Based Practice Grading Scale.Seven studies were identified in the search. All studies were of good-to-high quality with the majority having large samples. All seven found a significant difference in patient outcomes related to race/ethnicity. Specifically, minority patients had more adverse events, less improvement in functional outcomes, and worse patient experiences when compared with majority patients.Home health care disparities exist and efforts should be made to provide culturally and linguistically appropriate care to all patients.