Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

'Being a patient the rest of my life'- The influence of patient participation during recovery after brachial plexus injury.

BACKGROUND: Given the modest functional outcomes seen after surgical reconstruction and subsequent therapy, increasing attention is being directed to patient satisfaction and psychological aspects of recovery after brachial plexus injury (BPI). PURPOSE: To better understand the recovery course after surgical reconstruction for BPI, we used qualitative interviews and focused on common points of frustration for patients. STUDY DESIGN: Qualitative, interpretive description study METHODS: We conducted semi-structured interviews with BPI patients who were 6+ months post-surgical reconstruction. The interview focused on the patients' experience with BPI, focusing on emotional aspects of recovery. Interviews were transcribed and independently coded by 2 researchers. We used inductive and deductive analysis to organize codes into themes. Once thematic saturation was reached, no additional interviews were conducted. RESULTS: We interviewed 15 BPI patients at median 13 months after surgery (range: 6-43 months). Our analysis revealed: (1) BPI patients expressed variable degrees of participation during recovery, with the indeterminate state of function making it difficult to adjust to life after BPI. (2) The uncertainty while waiting for improved function is frustrating to BPI patients, with many patients expressing concern for activities and moments they are missing due to injury. (3) While many BPI patients feel left out of decision-making, those who felt engaged in the process expressed less frustration and more acceptance of their status. CONCLUSION: Traumatic BPI patients those who felt engaged in decision-making were more receptive to adjustment to their new state of function. When coordinating multidisciplinary care, measures to encourage patients to feel agency over their outcome and to develop self-management skills have the potential to improve patient satisfaction.

COVID-19 Related Facilitators and Barriers to In-Person Learning for Children With Intellectual and Development Disabilities: A Follow-Up.

BACKGROUND: Students with intellectual and developmental disabilities (IDD) and the staff who support them were largely in-person during the 2021-2022 school year, despite their continued vulnerability to infection with SARS-CoV-2. This qualitative study aimed to understand continued perceptions of weekly SARS-CoV-2 screening testing of students and staff amidst increased availability of vaccinations. METHODS: Twenty-three focus groups were held with school staff and parents of children with IDD to examine the perceptions of COVID-19 during the 2021-2022 school year. Responses were analyzed using a directed thematic content analysis approach. RESULTS: Four principal themes were identified: strengths and opportunities of school- and district-level mitigation policies; experience at school with the return to in-person learning; facilitators and barriers to participation in SARS-CoV-2 screening testing; and perceptions of SARS-CoV-2 testing in light of vaccine availability. IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Despite the increased availability of vaccines, school staff and families agreed that saliva-based SARS-CoV-2 screening testing helped increase comfort with in-person learning as long as the virus was present in the community. CONCLUSION: To keep children with IDD in school during the pandemic, families found SARS-CoV-2 screening testing important. Clearly communicating school policies and mitigation strategies facilitated peace of mind and confidence in the school district.

Addressing serious and continuing research noncompliance and integrity violations through action plans: Interviews with institutional officials.

Serious and continuing research noncompliance and integrity violations undermine the quality of research and trust in science. When researchers engage in these behaviors, institutional officials (IOs) often develop corrective action plans. Ideally, such plans address the root causes so noncompliance or research integrity violations discontinue. The aim of this study was to identify what IOs perceive as causes and action plan activities typically prescribed. We conducted semi-structured in-depth interviews with 47 IOs at research institutions across the U.S. including: institutional review board and institutional animal care and use committee chairs and directors, chief research officers, research compliance and integrity officers, and institutional conflicts of interest chairs and directors. The most common root causes identified were: 1) lack of knowledge or training, 2) failure to provide research team supervision, and 3) researcher attitudes toward compliance. The most common action plan activities include: 1) retraining in compliance or research integrity, 2) follow-up and hands-on involvement with the researcher, and 3) mandated oversight or mentoring. Because the most commonly identified action plan activities fail to adequately address the majority of root causes, our findings suggest a need for IOs to rethink existing approaches to action plan development to more effectively target root causes.

Psychosocial work environment stressors for school staff during the COVID-19 pandemic: Barriers and facilitators for supporting wellbeing.

Introduction: After periods of remote and/or hybrid learning as a result of the COVID-19 global pandemic, the return to in-person learning has been beneficial for both students and teachers, but it has not been without challenges. This study was designed to assess the impact of the return to in-person learning on the school experience, and efforts made to ease the transition in furthering a positive in-person learning environment. Materials and methods: We conducted a series of listening sessions with 4 stakeholder groups: students (n = 39), parents (n = 28), teachers/school staff (n = 41), and a combination of listening sessions and semi-structured interviews with building level and district administrators (n = 12), focusing on in-school experiences during the 2021-2022 school year amidst the COVID-19 pandemic. A primarily deductive qualitative analysis approach was employed to code the data followed by a primarily inductive thematic analysis, followed by thematic aggregation, thus providing depth and identification of nuances in the data. Results: Three main themes emerged around school staff experiences: (1) increased levels of stress and anxiety manifested in key ways, including students' challenges with personal behavior management contributing to increased aggression and staff shortages; (2) school staff described key contributors to stress and anxiety, including feeling excluded from decision making and challenges with clear and consistent communication; and (3) school staff described key facilitators that supported their management of anxiety and stress, including adaptability, heightened attention and resources to wellbeing, and leveraging interpersonal relationships. Discussion: School staff and students faced significant stress and anxiety during the 2021-2022 school year. Further exploration and identification of approaches to mitigate key contributors to increased stress and anxiety for school staff, along with increased opportunities for implementing key facilitators that were identified as important in managing and navigating the increased stress and anxiety offer valuable opportunities for helping to create a supportive work environment for school staff in the future.

Trends in Brachial Plexus Surgery: Characterizing Contemporary Practices for Exploration of Supraclavicular Plexus.

BACKGROUND: There is variability in treatment strategies for patients with brachial plexus injury (BPI). We used qualitative research methods to better understand surgeons' rationale for treatment approaches. We hypothesized that distal nerve transfers would be preferred over exploration and nerve grafting of the brachial plexus. METHODS: We conducted semi-structured interviews with BPI surgeons to discuss 3 case vignettes: pan-plexus injury, upper trunk injury, and lower trunk injury. The interview guide included questions regarding overall treatment strategy, indications and utility of brachial plexus exploration, and the role of nerve grafting and/or nerve transfers. Interview transcripts were coded by 2 researchers. We performed inductive thematic analysis to collate these codes into themes, focusing on the role of brachial plexus exploration in the treatment of BPI. RESULTS: Most surgeons routinely explore the supraclavicular brachial plexus in situations of pan-plexus and upper trunk injuries. Reasons to explore included the importance of obtaining a definitive root level diagnosis, perceived availability of donor nerve roots, timing of anticipated recovery, plans for distal reconstruction, and the potential for neurolysis. Very few explore lower trunk injuries, citing concern with technical difficulty and unfavorable risk-benefit profile. CONCLUSIONS: Our analysis suggests that supraclavicular exploration remains a foundational component of surgical management of BPI, despite increasing utilization of distal nerve transfers. Availability of abundant donor axons and establishing an accurate diagnosis were cited as primary reasons in support of exploration. This analysis of surgeon interviews characterizes contemporary practices regarding the role of brachial plexus exploration in the treatment of BPI.

Distance and Transportation Barriers to Colorectal Cancer Screening in a Rural Community.

Rural residents in underserved areas face many barriers to health services, including colonoscopies for colorectal cancer (CRC) screening, but rural healthcare providers may assist patients navigating these challenges due to familiarity with local contexts. In 2017 to 2018, we interviewed clinical practitioners and staff (n = 40) at 13 primary care and gastroenterology locations across rural Southern Illinois. We used a semi-structured interview guide that addressed system, provider, and patient levels including domains related to barriers, facilitators, and needs for intervention. This article focuses on 3 main elements related to distance and transportation that emerged from inductive coding. First, providers described long distance travel for care as normalized but not necessarily preferable. Second, they identified and described distance-related challenges specific to CRC screening, and third, providers discussed strategies, mostly related to transportation, they use to navigate those challenges. Finally, they suggested a variety of broader solutions to reduce distance and transportation barriers to screening. Overall, distance to care remains a challenge to increasing CRC screening and contributes to disparities in rural communities. To increase early detection and reduce rural cancer disparities, efforts to increase screening and follow-up must address ways to help patients and providers navigate this distance within their local communities and contexts.

Patient Perspectives after Trapeziectomy and Ligament Reconstruction Tendon Interposition: A Qualitative Analysis.

BACKGROUND: The authors aimed to explore patients' perioperative experience after trapeziectomy and ligament reconstruction tendon interposition through semistructured patient interviews to identify deficiencies in preoperative patient counseling. METHODS: The authors conducted semistructured interviews with 14 patients who had undergone ligament reconstruction tendon interposition either 10 to 14 weeks or 9 to 12 months postoperatively at the time of their interview. The semistructured interview guide was developed by a fellowship-trained hand surgeon and a qualitative research specialist to discuss each patient's perioperative experience. Inductive and deductive qualitative coding strategies were used to develop a codebook. All transcripts were then double-coded and discussed to develop recurrent major themes from the patient interviews. RESULTS: The authors' interviews identified three major themes discussed consistently on the patient perioperative experience. First, despite specific counseling about a 3- to 6-month postoperative rehabilitation period, patients were still surprised at the length of the recovery process in regaining function, range of motion, and strength. Second, patients repeatedly outlined that surgery on the dominant hand imparted specific limitations that made the postoperative course difficult. Third, patients discussed the importance of hand therapy both in rehabilitation and in guiding patient postoperative expectations. CONCLUSIONS: Preoperative counseling is of vital importance to set patient expectations in terms of overall expected outcomes, but also regarding early limitations, expectations, and overall recovery length. These themes have influenced how we counsel our patients about recovery after thumb carpometacarpal surgery and may help other surgeons identify areas for improvement in their discussions with patients.

"This New Chapter of Life": Content Analysis of Facebook Posts After Traumatic Brachial Plexus Injury.

Background: After traumatic brachial plexus injuries (BPI), the sudden loss of physical function is often accompanied by psychological distress. Given the complex nature and relative infrequency of the injury, BPI patients will often use online resources for information about their injury as well as emotional support. Questions/Purpose: Recognizing the influence of social media, we sought to search a popular social media platform to identify challenges faced by BPI patients and strategies used to overcome these challenges. Methods: We searched "traumatic brachial plexus injury" on Facebook and selected the 2 most popular BPI support groups. We collected posts regarding traumatic BPI from November 1, 2018 through November 1, 2019. We performed inductive and deductive thematic analysis of the posts to identify recurring topics, knowledge gaps, and peer interaction dynamics. Results: We analyzed 7694 posts from the 2 Facebook support groups. The following themes emerged: (1) BPI patients express discontent regarding the inability to use their arm and the slow or stagnant pace of recovery; (2) BPI patients are frustrated over their inability to retain their preinjury livelihood; and (3) BPI patients emphasize that acceptance and moving on are key components of adjustment to their condition. Some patients described the role of limb amputation in achieving these goals. Conclusions: Our analysis demonstrates the areas in which BPI patients are in need of emotional support. Adjustment to BPI might be facilitated through multidisciplinary care that addresses emotional aspects of recovery and emphasizes self-management skills, in addition to the traditional focus on physical function.

Variability in Surgeon Approaches to Emotional Recovery and Expectation Setting After Adult Traumatic Brachial Plexus Injury.

PURPOSE: Increasing emphasis has been placed on multidisciplinary care for patients with traumatic brachial plexus injury (BPI), and there has been a growing appreciation for the impact of psychological and emotional components of recovery. Because surgeons are typically charged with leading the recovery phase of BPI, our objective was to build a greater understanding of surgeons' perspectives on the care of BPI patients and potential areas for improvement in care delivery. METHODS: We conducted semistructured qualitative interviews with 14 surgeons with expertise in BPI reconstruction. The interview guide contained questions regarding the surgeons' practice and care team structure, their attitudes and approaches to psychological and emotional aspects of recovery, and their preferences for setting patient expectations. We used inductive thematic analysis to identify themes. RESULTS: There was a high degree of variability in how surgeons addressed emotional and psychological aspects of recovery. Whereas some surgeons embraced the practice of addressing these components of care, others felt strongly that BPI surgeons should remain focused on technical aspects of care. Several participants described the emotional toll that caring for BPI patients can have on surgeons and how this concern has affected their approach to care. Surgeons also recognized the importance of setting preoperative expectations. There was an emphasis on setting low expectations in an attempt to minimize the risk for dissatisfaction. Surgeons described the challenges in effectively counseling patients about a condition that is prone to substantial injury heterogeneity and variability in functional outcomes. CONCLUSIONS: Our results demonstrate wide variability in how surgeons address emotional, psychological, and social barriers to recovery for BPI patients. CLINICAL RELEVANCE: Best practices for BPI care are difficult to establish because of the relative heterogeneity of neurologic injury, the unpredictable impact and recovery of the patient, and the substantial variability in physician approach to the care of these patients.

"Pill Pushers and CBD Oil"-A Thematic Analysis of Social Media Interactions About Pain After Traumatic Brachial Plexus Injury.

PURPOSE: Brachial plexus injury (BPI) patients use on-line groups for peer support, often seeking information from Facebook groups devoted to BPI. We hypothesized that a qualitative thematic analysis of posts from BPI Facebook groups would demonstrate the areas in which patients were seeking information regarding treatment of BPI and reveal potential sources of misinformation that patients may encounter. METHODS: We identified the 2 most popular public Facebook groups for BPI by searching key words "traumatic brachial plexus injury." We selected posts containing comments regarding BPI from November 1, 2018 through October 31, 2019. We excluded posts regarding brachial plexus birth injury. We used iterative inductive and deductive thematic analysis for the qualitative data to identify recurring topics, knowledge gaps, potential roles of patient educational interventions, and patient interaction dynamics. Two investigators independently coded all posts and resolved discrepancies by discussion. RESULTS: A total of 7,694 posts from 2 leading Facebook support groups were analyzed. Three themes emerged: (1) When discussing pain management, there was recurring anti-opioid sentiment. Posters who currently used opioids or supported those who did discussed perceived effects of the opioid epidemic on their treatment, on their relationships with care providers, and on availability of the medication. (2) Posters advocated for alternatives to traditional approaches to pain management, referring to prescribers as pill pushers and touting cannabinoids as a safer and more effective replacement. (3) There was strong anti-gabapentinoid sentiment owing to reported adverse effects and a perceived lack of efficacy, despite its role as a first-line treatment for neuropathic pain. CONCLUSIONS: Examination of posts from Facebook support groups for BPI revealed recurring themes, questions, misinformation, and opinions from posters with regard to treatment of neuropathic pain. These findings can help clinicians who care for BPI patients identify areas to focus on during patient encounters to address neuropathic pain that commonly occurs with BPI. CLINICAL RELEVANCE: Brachial plexus injury surgeons should be aware of information, misinformation, and opinions on social media, because these may influence patientesurgeon interactions.

A qualitative study of life satisfaction after surgery for adult traumatic brachial plexus injury.

AIMS: Brachial plexus injury (BPI) is an often devastating injury that affects patients physically and emotionally. The vast majority of the published literature is based on surgeon-graded assessment of motor outcomes, but the patient experience after BPI is not well understood. Our aim was to better understand overall life satisfaction after BPI, with the goal of identifying areas that can be addressed in future delivery of care. METHODS: We conducted semi-structured interviews with 15 BPI patients after initial nerve reconstruction. The interview guide was focused on the patient's experience after BPI, beginning with the injury itself and extending beyond surgical reconstruction. Inductive and deductive thematic analysis was used according to standard qualitative methodology to better understand overall life satisfaction after BPI, contributors to life satisfaction, and opportunities for improvement. RESULTS: Among the 15 patients interviewed, the following themes emerged: 1) happiness and life satisfaction were noted despite limitations in physical function; 2) quality of social support influences life satisfaction during recovery from BPI; and 3) social participation and having a sense of purpose impact life satisfaction during recovery from BPI. CONCLUSION: How patients perceive their BPI treatment and recovery varies widely, and is not directly linked to their self-reported functional outcome. Patients with stronger social circles and activities that give them a sense of fulfillment were more likely to be satisfied with their current status. Evaluating a patient's social network, goals, and potential supportive adaptations early in the treatment timeline through coordinated multidisciplinary care may improve overall satisfaction during recovery from BPI.Cite this article: Bone Joint Open 2020;2(1):9-15.

Approach to the Pan-brachial Plexus Injury: Variation in Surgical Strategies among Surgeons.

Treatment of pan-brachial plexus injuries has evolved significantly over the past 2 decades, with refinement and introduction of new surgical techniques, particularly free functional muscle transfer. The extent to which contemporary brachial plexus surgeons utilize various techniques as part of their treatment algorithm for pan-plexus injuries and the rationale underlying these choices remain largely unknown. METHODS: A case scenario was posed to 12 brachial plexus surgeons during semi-structured qualitative interviews. The case involved a young patient presenting 6 weeks after a pan-plexus injury from a motorcycle accident. Surgeons were asked to formulate a treatment plan. Inductive thematic analysis was used to identify commonalities and variation in approach to treatment. RESULTS: For shoulder function, the majority of surgeons would graft from a viable C5 nerve root, if possible, though the chosen target varied. Two-thirds of the surgeons would address elbow flexion with nerve transfers, though half would combine this with a free functional muscle transfer to increase elbow flexion strength. Free functional muscle transfer was the technique of choice to restore finger flexion. Finger extension, intrinsic function, and sensation were not prioritized. CONCLUSIONS: Our study sheds light on current trends in the approach to pan-plexus injuries in the U.S. and identifies areas of variability that would benefit from future study. The optimal shoulder target and the role for grafting to the MCN for elbow flexion merit further investigation. The role of FFMT plays an increasingly prominent role in treatment algorithms.