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Sickle cell disease (SCD) is the most common inherited blood disorder in both Jamaica and the United States and is characterized by poor quality of life and debilitating complications, with the hallmark symptom being pain caused by acute and chronic conditions. Individuals with SCD often experience stigma due to their disease status, opioid use, and race. This study sought to understand the influence of perceived stigma and demographic/clinical characteristics on quality of life in adults with SCD in Jamaica (n = 50) and the United States (n = 50). Participants completed interviewer-administered surveys including demographic/clinical characteristics; the Measure of Sickle Cell Stigma (MoSCS); and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). A set of general linear models for each country was built to examine the influence of explanatory variables on the quality of life outcomes. Overall, stigma scores were low for both countries, with the exception of the MoSCS disclosure concerns and expected discrimination subscales, where scores averaged medium and high, respectively. In both countries, being employed was associated with better quality of life; and reports of stigma (internalized stigma and expected discrimination) was associated with worse quality of life. These findings have several implications for healthcare providers caring for individuals with SCD, policy makers, and researchers. Specifically, findings can be used to advocate for improved access to mental health care for individuals with SCD and inform stigma reduction intervention approaches in SCD. [ABSTRACT FROM AUTHOR]

Attachment theory posits that parenting plays akey role in children's attachment and subsequent development. Given the normativity of racial discrimination on everyday life experiences of African American families, there is a need to integrate historical and socio-environmental processes in studies to understand how minoritized parents raise secure and stable children. Results from the current study revealed direct associations between mothers' reports of discrimination and heightened depression and anxiety. Maternal discriminatory experiences were indirectly associated with more negative parenting and compromised parent-child relationship quality, through mothers' psychological functioning. Elevated emotional and behavioral management problems among youth were directly associated with exposure to racial discrimination. Exposure to discrimination during middle childhood facilitated adapted or learned strategies to manage similar situations as youth transitioned into adolescence, with reduced patterns of depressive symptomology. No significant gender effects emerged. Implications for theoretical advancement and future research are provided. [ABSTRACT FROM AUTHOR]

Introduction: Sex-based clinical outcome differences in sickle cell disease (SCD) remain largely unknown despite evidence that female sex is associated with an increased lifespan. To better characterize sex-based differences in SCD, we assessed pain, treatment characteristics, laboratory measures and complications among males and females currently enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry. Methods: The SCDIC consists of eight comprehensive SCD centers and one data coordinating center that received funding from the National Heart Lung and Blood Institute to improve outcomes for individuals with SCD. Eligibility criteria included: 15 to 45 years of age and a confirmed diagnosis of SCD. Self-report surveys were completed and data were also abstracted from the participants' medical records. Results: A total of 2,124 participants were included (mean age: 27.8 years; 56% female). The majority had hemoglobin SS SCD genotype. Females had worse reports of pain severity (mean (SD) T-score 51.6 (9.6) vs 49.3 (10), p<0.001), more vaso-occlusive episodes (p = 0.01) and a higher occurrence of 3 or more hospital admissions in the past year (30.9% vs. 25.5, p = 0.03). On multivariable analysis, males had higher odds of acute chest syndrome (odds ratio (OR) 1.4, p = 0.002), cardiovascular (OR 1.70, p<0.001) and musculoskeletal (OR 1.33, p = 0.0034) complications and lower odds of depression (OR 0.77, p = 0.0381). Females had higher fetal hemoglobin levels with and without hydroxyurea use (9.6% vs 8.5%, p = 0.03 and 3% vs 2.2%, p = 0.0005, respectively). Conclusion: Our data suggests that sex differences in clinical outcomes do occur among individuals with SCD. Future research needs to explore the mechanisms underlying these differences. [ABSTRACT FROM AUTHOR]

Due to the impact of persistent structural racism, Black men have low rates of hypertension treatment and control despite having high rates of hypertension‐related mortality. Peer‐based education can improve blood pressure monitoring and lower blood pressure in Black men with hypertension. To address this disparity, we implemented weekly community‐based group classes for severe hypertension at a Federally Qualified Health Center. After 9 months, 28 classes were held and 96 individuals were served. Fifty‐six percent of the person‐hours of attendance have been by Black men. Seven individuals were interviewed about their perspectives and preferences for the classes. They reported that the peer‐based model of the group classes was advantageous, and they would recommend the classes to a friend. Successes of implementation included (a) ability to facilitate medication adjustments for participants with blood pressure readings that were over target goal, (b) capacity to give participants take‐home blood pressure monitors, (c) and the community‐centered approach. Challenges included variability in attendance by participants and retention of individuals with uncontrolled hypertension in primary care. These findings have implications for other Federally Qualified Health Centers seeking to design similar health promotion programs and policy makers evaluating the funding and reimbursement models for community‐based disease management programs. [ABSTRACT FROM AUTHOR]

An editorial is presented on the nursing work is justice work. Topics include the nurses has spearheaded the 1970s grassroots feminist effort calling for reform in health care to address domestic violence, the health care community to identify domestic violence as an epidemic inextricably has linked to homicide, and the status quo that domestic violence has a private matter to be dealt with outside of health care.

Background: Sickle cell disease (SCD) is an inherited blood disorder associated with acute pain crisis and other complications that lead to frequent emergency department (ED) visits. To improve outcomes, the National Heart, Lung and Blood Institute (NHLBI) published recommendations for management of acute pain crisis. NHLBI also funded eight centers across the United States to participate in the Sickle Cell Disease Implementation Consortium. This six-year effort consists of two phases. Phase one involved conducting needs assessments of barriers and facilitators to SCD care. The aim of this study was to describe challenges and facilitators to caring for SCD from the perspective of ED providers in central North Carolina (NC). Methods and findings: We conducted a needs assessment survey with ED providers throughout NC. We also conducted focus groups and an interview with ED providers from three healthcare facilities in central NC. One hundred and eleven surveys (60.6% physicians, 26% registered nurses, 13.5% physician assistants) were completed and 13 providers participated in 3 focus groups and 1 interview. Slightly more than half (50. 4%) utilized individualized dosing protocols to treat sickle cell pain. Only 32.4% of the providers were aware of the NHLBI SCD recommendations. Barriers to care from the survey included: patient behavior (67.57%), the opioid epidemic (67.57%), overcrowding (64.86%), and concern about addiction (49.55%). Perceived barriers to care identified in the focus groups and interview included: high patient volumes, lack of SCD care protocols, poor communication among providers and stigma. Facilitators to care included: individualized pain plans, comfort prescribing opioids and electronic medical records. Conclusion: SCD care is influenced by many factors. Our results illuminate the need for increased use of the NHLBI SCD recommendations, individualized pain protocols, and use of electronic medical records and other care-interventions, specifically geared towards improving provider knowledge and mitigating provider bias. [ABSTRACT FROM AUTHOR]

A disease-focused course entitled "Understanding Sickle Cell Disease: A Biopsychosocial Approach" addressed the complex nature of SCD using patient-centered, global and interdisciplinary approaches. Sickle cell disease (SCD) is a rare inherited blood disorder that requires multidisciplinary care. Worldwide 20–25 million individuals have SCD, which is associated with a shortened lifespan due to many medical complications and social and behavioral health challenges. Health care professionals often have limited knowledge of SCD as they typically learn about it within the context of their own disciplines. This article provides twelve tips for educators that can be used to develop a similar course on any disease, with considerations for both low- and high-resource countries. The tips were devised from personal experience and available literature. Through these twelve tips, we provide a practical framework for increasing knowledge of complex diseases like SCD using a comprehensive elective course. [ABSTRACT FROM AUTHOR]

The aim of this systematic review was to synthesize the literature regarding health-related stigma in adolescents and adults living with sickle cell disease (SCD). Four domains were identified from 27 studies: (1) social consequences of stigma; (2) the effect of stigma on psychological well-being; (3) the effect of stigma on physiological well-being; and (4) the impact of stigma on patient-provider relationships and care-seeking behaviors. Current literature revealed that SCD stigma has detrimental consequences. Methodological issues as well as research and practice implications were identified. Future research should further examine the impact of health-related stigma on self-management of SCD. [ABSTRACT FROM AUTHOR]

College women who experience sexual violence (SV) and disordered eating (DE) are at risk for comorbid mental health symptomology (depression, somatization) and risky health behaviors (dating status, alcohol use). The purpose of this study is to explore associations of coexisting sexual violence history and disordered eating with mental health and health behaviors in college women. This cross sectional descriptive study is a secondary analysis of survey data from college students from five universities (n= 2747). College women with both SV and DE were more likely to experience increased depressive and somatic symptoms and participate in risky health behaviors. [ABSTRACT FROM PUBLISHER]

Background: The purpose of this study was to pilot test two sickle cell-specific instruments, the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and Jenerette Self-Care Assessment Tool (J-SAT), to determine recruitment rate, percent completion of the instrument battery, and patient perceptions of health-related quality of life outcomes and self-care activities in a convenience sample of adults with sickle cell disease (SCD). Methods: A cross-sectional pilot study was conducted. Participants were recruited from a sickle cell clinic and conference on SCD. Subjects completed self-administered assessments including demographic and clinical characteristics, ASCQ-Me, and the J-SAT. Results: Twenty of 22 participants completed the instruments (2 refusals) and most instruments had 100% completion rates. Participants reported average to healthier status on ASCQ-Me measures than a normative referent population of 556 individuals with SCD. Participants also reported high disease severity and high J-SAT scores (mean = 30.2), indicating frequent participation in self-care activities. Conclusions: There was good participation, low refusal rates, and subjects completed the instruments and items without difficulty. Based on this work, a multi-method, multi-site study in Jamaica and the USA will be conducted to understand the relationships between health-related quality of life, stigma, and self-management in adults with SCD. [ABSTRACT FROM AUTHOR]