Feasibility of In-Home Virtual Reality for Chronic Pain in Sickle Cell Disease.

PURPOSE: This study assessed the feasibility of an in-home virtual reality intervention for chronic pain in adults with sickle cell disease. DESIGN: Two-group, parallel, randomized, multiple methods design with surveys, and interviews. METHODS: Participants were randomized to virtual reality or audio control, with 2-16-minute daily modules for 8 weeks, a daily pain diary survey, and a post study interview. Chronic pain and pain correlates were evaluated at baseline and every 4 weeks for 3 months. Feasibility outcomes were participant enrollment (set at > 50%), questionnaire response (> 50%), intervention use, and cybersickness (< 20%). RESULTS: Of the individuals approached, 67.8% (n = 19) were enrolled. Questionnaire response rates were 100% at baseline, 57.8% at week 4, and < 50% at weeks 8 and 12. The intervention was used for a median of 781 minutes and 210 minutes in the virtual reality and audio groups, respectively. Participants reported slight symptoms of cybersickness with no reports of severe symptoms, and the intervention was acceptable. CONCLUSIONS: Home-based virtual reality can be used in future sickle cell disease research. To further strengthen evaluations of virtual reality in adults with sickle cell who experience chronic pain, future trials should address sample size limitations and incorporate recommended strategies to address cybersickness and questionnaire response. CLINICAL IMPLICATIONS: The first known application of in-home virtual reality for chronic pain in adults with sickle cell disease was successful. Findings can inform future in-home investigations of virtual reality in this underserved population.

Social Determinants of Health in Graduate Nursing Simulation Education: An Integrative Review.

BACKGROUND: This integrative review examined how simulation is being used to teach graduate nursing students about the social determinants of health (SDH). METHODS: The literature search focused on studies that included a sample of graduate nursing students who participated in an SDH simulation-based education (SBE). The timeframe used was 2013 to 2023 as this is when SBE emerged in graduate nursing education. Databases searched included Academic Search Complete, Cumulative Index to Nursing and Allied Health Literature, PubMed, and Web of Science. RESULTS: Nine studies included a sample of graduate nursing students and were included in this review. Published studies ranged from 2013 to 2023. CONCLUSION: The findings of this review highlight the need for graduate nursing faculty to design, implement, and evaluate transformative SDH-specific SBE that prepares students to understand their role as social justice advocates for health equity.

Transitions experienced by mothers of children/adolescents with sickle cell disease in the context of the COVID-19 pandemic.

OBJECTIVE: To analyze the transitions experienced by mothers and children/adolescents with sickle cell disease after the emergence of the COVID-19 pandemic. METHOD: A qualitative study involving 19 mothers of children and adolescents with sickle cell disease. Data were obtained through semi-structured interviews via WhatsApp, followed by Thematic Analysis and Descending Hierarchical Classification with the help of Interface de R pour les Analyses Multidimensionnelles de Texteset de Questionnaires and interpreted in the light of Afaf Meleis' Transition Theory. RESULTS: Support from family members for displacement; mothers' adherence to the routine of daily stimuli and physical exercises favored healthy transitions; lack of remote health care; low socioeconomic resources; interruption of the physiotherapy service; and maternal overload favor unhealthy transitions. FINAL CONSIDERATIONS: Efforts/movements by mothers ensure the healthy transition of children/adolescents with sickle disease during the pandemic, while supporting their unhealthy transition.

Unlocking Population-Specific Treatments to Render Equitable Approaches and Management in Cardiovascular Disease: Development of a Situation-Specific Theory for African American Emerging Adults.

BACKGROUND: Emerging adulthood (18-25 years old) is a distinct developmental period in which multiple life transitions pose barriers to engaging in healthy lifestyle behaviors that reduce cardiovascular disease risk. There is limited theory-based research on African American emerging adults. OBJECTIVE: This article introduces a synthesized empirically testable situation-specific theory for cardiovascular disease prevention in African American emerging adults. METHODOLOGY: Im and Meleis' integrative approach was used to develop the situation-specific theory. RESULTS: Unlocking Population-Specific Treatments to Render Equitable Approach and Management in Cardiovascular Disease is a situation-specific theory developed based on theoretical and empirical evidence and theorists' research and clinical practice experiences. DISCUSSION: African American emerging adults have multifaceted factors that influence health behaviors and healthcare needs. Unlocking Population-Specific Treatments to Render Equitable Approaches and Management in Cardiovascular Disease has the potential to inform theory-guided clinical practice and nursing research. Recommendations for integration in nursing practice, research, and policy advocacy are presented. Further critique and testing of the theory are required.

Psychometrics of the Sickle Cell Disease Health-Related Stigma Scale-Short Form.

Health-related stigma, a form of devaluation related to a health condition, is common in individuals with sickle cell disease (SCD). Pain is the hallmark symptom of SCD, and health-related stigma is often described during care-seeking for pain management. Few published instruments measure health-related stigma in individuals with SCD. This study builds on the psychometrics of the 30- and 40-item Sickle Cell Disease Health-Related Stigma Scale (SCD-HRSS). In a sample of 197 adults with SCD, the results support the reliability and validity of a 21-item scale, the SCD-HRSS-Short Form, with an overall Cronbach's alpha reliability of 0.91 and discriminant validity with the PROMIS-29 subscales (anxiety, depressive symptoms, pain interference, physical fatigue, sleep, and role satisfaction). A shorter yet reliable and valid scale may decrease the burden for this underrepresented, minoritized population while still providing important information regarding their experiences of stigmatization.

Exercise Capacity and Biomarkers Among Children and Adolescents With Sickle Cell Disease.

BACKGROUND: Sickle cell disease is the most common genetic hemoglobinopathy globally and systemically affects body functioning, decreasing exercise capacity. OBJECTIVE: To assess exercise capacity through the 6-minute walk test (6MWT) and biomarkers in children and adolescents with sickle cell disease. MATERIALS AND METHODS: Cross-sectional study involving 20 children and adolescents from Brazil. Demographic and socioeconomic data were obtained. Baseline measurements included biomarkers (red blood cells, hemoglobin, hematocrit, white blood cells, platelets, reticulocytes, lactate dehydrogenase, creatine phosphokinase, C-reactive protein, interleukin 6, and fetal hemoglobin). The following data were obtained before, during, and after the 6MWT: heart rate, blood pressure, and peripheral oxygen saturation. RESULTS: Eighteen children and adolescents ages 5-14 years old were analyzed, 61.1% boys, 100% black or brown, and 61.1% in primary education, with low household income. The average distance walked in 6MWT was 463.8 (137.7) m, significantly less than the predicted value (P < .001). The distance of 6MWT was associated positively with age (P = .042) and inversely with reticulocyte count (P = .42) and interleukin 6 (P = .00). Age modified the effect of interleukin 6 in younger children (P = .038). CONCLUSION: Our findings suggest increased baseline levels of biomarkers of hemolysis and inflammation impact on 6MWT performance.

Transitions experienced by mothers of children/adolescents with sickle cell disease in the context of the COVID-19 pandemic / Transiciones vividas por madres de niños/adolescentes con enfermedad de células falciformes en el contexto de la pandemia de COVID-19 / Transições vivenciadas por mães de crianças/adolescentes com doença falciforme no contexto da pandemia da COVID-19

ABSTRACT Objective: To analyze the transitions experienced by mothers and children/adolescents with sickle cell disease after the emergence of the COVID-19 pandemic. Method: A qualitative study involving 19 mothers of children and adolescents with sickle cell disease. Data were obtained through semi-structured interviews via WhatsApp, followed by Thematic Analysis and Descending Hierarchical Classification with the help of Interface de R pour les Analyses Multidimensionnelles de Texteset de Questionnaires and interpreted in the light of Afaf Meleis' Transition Theory. Results: Support from family members for displacement; mothers' adherence to the routine of daily stimuli and physical exercises favored healthy transitions; lack of remote health care; low socioeconomic resources; interruption of the physiotherapy service; and maternal overload favor unhealthy transitions. Final considerations: Efforts/movements by mothers ensure the healthy transition of children/adolescents with sickle disease during the pandemic, while supporting their unhealthy transition.

RESUMEN Objetivo: Analizar las transiciones vividas por madres y niños/adolescentes con enfermedad de células falciformes después del surgimiento de la pandemia de COVID-19. Método: Estudio cualitativo en el que participaron 19 madres de niños y adolescentes con enfermedad de células falciformes. Los datos se obtuvieron a través de entrevistas semiestructuradas vía WhatsApp, seguidas de Análisis Temático y Clasificación Jerárquica Descendente con la ayuda deInterface de R pour les AnalysesMultidimensionnelles de Textes et de Questionnairese interpretadas a la luz de la Teoría de la Transición de AfafMeleis. Resultados: Apoyo de familiares por desplazamiento; la adherencia de las madres a la rutina de estímulos diarios y ejercicios físicos favoreció las transiciones saludables; falta de atención médica remota; bajos recursos socioeconómicos; interrupción del servicio de fisioterapia; y la sobrecarga materna favorecen las transiciones poco saludables. Consideraciones finales: Los esfuerzos/movimientos de las madres aseguran la transición saludable de los niños/adolescentes con enfermidades de células falciformes durante la pandemia, al mismo tiempo que apoyan su transición no saludable.

RESUMO Objetivo: Analisar as transições vivenciadas por mães de crianças/adolescentes com doença falciforme após o surgimento da pandemia da COVID-19. Método: Estudo qualitativo, envolveu 19 mães de crianças e adolescentes com doença falciforme. Os dados foram obtidos mediante entrevistas semiestruturadas via WhatsApp, seguidas de Análise Temática e Classificação Hierárquica Descendente com auxílio do Interface de R pourles Analyses Multidimensionnelles de Textes et de Questionnaires e interpretados à luz da Teoria de Transições de Afaf Meleis. Resultados: Apoio dos familiares para deslocamento; adesão das mães à rotina de estímulos diários e exercícios físicos favoreceram as transições saudáveis; inexistência de atendimento de saúde remoto; baixos recursos socioeconômicos; interrupção do serviço de fisioterapia; e sobrecarga materna favorecem as transições insalubres. Considerações finais: Esforços/movimentos das mães asseguraram a transição saudável de crianças/adolescentes com doença falciforme durante a pandemia, ao mesmo tempo que corroborou para a transição insalubre das mesmas.

Individuals with Sickle Cell Disease Using SBAR as a Communication Tool: A Pilot Study.

BACKGROUND: Sickle cell disease (SCD) is a hemoglobinopathy that causes debilitating pain. Patients often report dissatisfaction during care seeking for pain or a sickle cell crisis (SCC). The Theory of Self-Care Management for SCD conceptualizes assertive communication as a self-care management resource that improves healthcare outcomes. OBJECTIVES: This pilot study aimed to determine whether adults with SCD could learn to use the Situation, Background, Assessment, Recommendation (SBAR) communication method using a web-based trainer, and it aimed to determine their perceptions of the training. METHODS: The participants included n = 18 adults with SCD. Inter-rater reliability (IRR) among three reviewers was used to evaluate the participants' ability to respond as expected to prompts using SBAR communication within the web-based platform. Content analysis was used to describe the participants' perspectives of the acceptability of using the SBAR patient-HCP communication simulation. RESULTS: The SBAR IRR ranged from 64 to 94%, with 72% to 94% of the responses being evaluated as the using of the SBAR component as expected. The predominant themes identified were (1) Patient-Provider Communication and Interaction; (2) Patients want to be Heard and Believed; (3) Accuracy of the ED Experience and Incorporating the Uniqueness of each Patient; and (4) the Overall Usefulness of the Video Trainer emerging. CONCLUSIONS: This pilot study supported the usefulness and acceptability of a web-based intervention in training adults with SCD to use SBAR to enhance patient-HCP communication. Enhancing communication may mitigate the barriers that individuals with SCD encounter during care seeking and improve the outcomes. Additional studies with larger samples need to be conducted.

Use and efficacy of virtual, augmented, or mixed reality technology for chronic pain: a systematic review.

Aim: Characterize use and efficacy/effectiveness of virtual, augmented, or mixed reality (VR/AR/MR) technology as non-pharmacological therapy for chronic pain. Methods: Systematic search of 12 databases to identify empirical studies, of individuals who experience chronic pain or illness involving chronic pain, published between 1990 and 2021. JBI Critical Appraisal Checklists assessed study bias and a narrative synthesis was provided. Results: 46 studies, investigating a total of 1456 participants and including 19 randomized controlled trials (RCT), were reviewed. VR/AR/MR was associated with improved pain-related outcomes in 78% of the RCTs. Conclusion: While most studies showed effects immediately or up to one month post treatment, RCTs are needed to further evaluate VR/AR/MR, establish long-term benefits, and assess accessibility, especially among individuals who experience pain management disparities.

Virtual, augmented and mixed reality (VR/AR/MR) are technologies that can be used to manage chronic pain. The use and effectiveness of VR/AR/MR were examined during a review of 46 research studies, which included 1456 participants and 19 randomized controlled trials (RCTs). In 78% of the RCTs, VR/AR/MR improved pain or pain-related outcomes. While most studies showed a benefit on pain immediately or up to 1 month after treatment, more research is needed to assess the long-term benefits of VR/AR/MR on pain and understand how these technologies provide pain relief in the body. Additionally, the accessibility and cost­effectiveness of VR/AR/MR must be evaluated. These areas for future research must consider individuals who experience disparities in the treatment of chronic pain.

"Into the Lion's Den": COVID-19 Experiences of Black Adults with Sickle Cell Disease.

Adults living with sickle cell disease are at risk for experiencing severe illness from coronavirus disease 2019 (COVID-19) due to the complexity of their disease. Additionally, self-management and navigating the healthcare system may be challenging during the COVID-19 pandemic. Therefore, we conducted telephone interviews with 25 participants to explore the experiences of Black adults living with sickle cell disease during the early months of the pandemic in the United States. Three overarching themes characterize their experiences: management of sickle cell disease was further complicated by the pandemic, fear of the virus contributed to physical and social isolation, and employment and financial challenges affected well-being. The pandemic contributed to changes in health care maintenance and had a disproportionate impact on this population. Addressing social and structural determinants of health and disruptions in health care accessibility is critical to advancing health and health care equity for individuals living with sickle cell disease.

Supporting racial, ethnic minority, and disadvantaged undergraduate nursing students with honors projects.

BACKGROUND: Underrepresented racial and ethnic minority (UREM) and disadvantaged background (DB) students often feel a lack of belonging and community in higher education. Participation in Honors Programs has been shown to build a sense of belonging and community associated with short and long-term benefits for both students and their academic institutions. PURPOSE: To describe the program we implemented (the MM program) to increase UREM and DB student representation in a SON Honors Program. METHOD: A prospective, descriptive study of SON UREM and DB honors students with a May graduation date of 2017-2020. RESULTS: A total of 129 students completed honors with 23 MM UREM and DB students completing honors. Seven received highest honors award distinction that exemplifies exceptional work at a level beyond usually high expectations. CONCLUSIONS: A supportive environment for UREM and DB students with resources are essential for students to consider and also complete an honors project.

Effects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study.

PURPOSE: To investigate the feasibility, acceptability, and preliminary efficacy of a 6-session music therapy protocol on self-efficacy, quality of life, and coping skills in adults with sickle cell disease (SCD). PATIENTS AND METHODS: Using a mixed-methods intervention design, adults with SCD (ages 21-57; mean age 32.33) were randomized (1:1) to either 1) a 6-session music therapy (MT) intervention (n = 12) or 2) waitlist control (WLC) (n = 12) using stratified randomization where factors were age in years (≤30 vs >30), and sex (male, female). All participants completed two weeks of daily electronic pain diary entries and self-efficacy, quality of life, and coping skills measures before and after their assigned study condition to explore preliminary efficacy. MT participants were taught music exercises accessed via smartphone and subsequently interviewed to determine feasibility and acceptability. RESULTS: The enrollment rate was 89%. All study measures were completed, with high rates of electronic pain diary completion at baseline (70%) and 2-week follow-up (66%). Interviews revealed two overall themes related to MT participants' experience: 1) participants learned new self-management skills and 2) MT improved participants' ability to cope with pain. MT participants demonstrated 100% attendance. In preliminary analyses, MT participants demonstrated significant improvements (means ± SD) in self-efficacy (5.42 ± 5.43, p = 0.008, d = 1.20), PROMIS sleep disturbance (-1.49 ± 6.68, p = 0.023, d = -0.99), PROMIS pain interference (-2.10 ± 4.68, p = 0.016, d = -1.06), and ASCQ-Me social functioning impact scores (2.97 ± 6.91, p = 0.018, d = 1.05) compared to WLC participants. CONCLUSION: Preliminary findings support the feasibility and acceptability of music therapy for home use in adults with SCD. While music therapy may assist adults with SCD in improving self-efficacy and quality of life, subsequent, fully-powered clinical research is needed to determine its efficacy.

Experiences of African Americans Living With Sickle Cell Disease.

INTRODUCTION: About 100,000 individuals in the United States live with sickle cell disease (SCD). Palliative care (PC) can improve symptom management for these individuals. The purpose of the study was to explore (a) the experiences of people living with SCD, and (b) their knowledge and perceptions of PC. METHOD: Using a qualitative, descriptive design, adults with SCD were recruited from a foundation in the southeastern United States. Data included social and SCD-related demographics and audio-recorded, semi-structured focus groups. Analysis took a thematic analysis approach. RESULTS: Participants: There were 16 African Americans who participated in the study, 75% of whom were females, and aged 22 to 71 years. Five themes were identified: unique and unpredictable impact of SCD on daily life, the changing experience of SCD over time, stigmatization/marginalization in health care interactions, perceptions of support in managing SCD symptoms/crises, and PC: "What is it?" DISCUSSION: Participants lacked PC knowledge. PC should be offered to individuals with SCD as part of comprehensive SCD management.

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention.

Objective: To determine the factors predicting the engagement of young adults who have sickle cell disease (SCD) or sickle cell trait (SCT) with an online reproductive health education intervention and engagement effects on knowledge. Methods: The cross-sectional study included 167 participants who completed the web-based intervention either face-to-face (F2F) or online delivery (OL). Measures include: time used relative to length of the intervention narration and media (engagement) and the SCKnowIQ questionnaire. Ordinal regression was conducted. Results: The sample mean age was 26-years (SD=5), 68% were female, 54% had SCD, and 68% were in the F2F group. Adjusting for age, partner sickle cell status, marital status, and education, participants who were female (p=.003), had SCD (p=.018), or had F2F delivery (p < .001) were more likely to spend more time on the intervention. Adjusting for baseline knowledge and modality, more time spent on the intervention was associated with higher posttest knowledge (p=.006). Conclusions: Future studies are necessary to understand reasons underpinning engagement and to investigate other unmeasured factors, such as intervention interactivity elements, that could also be associated with engagement. Innovation: This study of young adults with SCD or SCT provides much needed insight about their engagement with online reproductive health education.

Feelings experienced by mothers and children/adolescents with sickle disease in the context of the covid-19 pandemic / Sentimientos experimentados por madres y niños/adolescentes con enfermedad falciforme en el contexto de la pandemia del covid-19 / Sentimentos vivenciados por mães e crianças/adolescentes com doença falciforme no contexto da pandemia da covid-19

ABSTRACT Objective to know the feelings of children/adolescents with Sickle Cell Disease perceived by mothers and to identify feelings experienced by mothers of children/adolescents with Sickle Cell Disease after the emergence of the COVID-19 pandemic. Method qualitative study, developed in a city in the state of Bahia with the participation of 19 mothers of children and adolescents with Sickle Cell Disease. Data were obtained between March and April 2020 through semi-structured interviews via WhatsApp calls, which were submitted to thematic, factor and similarity analysis after transcription. Results the participants reported feeling overloaded due to dedicating themselves full time to the care of their children, who were more vulnerable and emotionally unstable due to social distancing. Therefore, strategies were adopted by mothers, intending to help adaptation and stress reduction - provided by the context of the pandemic - for themselves and in their children. Conclusion mothers of children/adolescents with Sickle Cell Disease need to be supported and instrumentalized in order to implement care centered on the psychoemotional dimension and seek specialized help, especially regarding feelings triggered due to the need to maintain the therapeutic routine of their children in the midst of the pandemic.

RESUMEN Objetivo conocer los sentimientos de los niños/adolescentes con Drepanocitosis percibidos por las madres e identificar los sentimientos experimentados por las madres de niños/adolescentes con Drepanocitosis después del surgimiento de la pandemia de COVID-19. Método estudio cualitativo, desarrollado en una ciudad del estado de Bahía con la participación de 19 madres de niños y adolescentes con enfermedad de células falciformes. Los datos se obtuvieron entre marzo y abril de 2020 a través de entrevistas semiestructuradas a través de llamadas de WhatsApp, que fueron sometidas a análisis temático, factorial y de similitud después de la transcripción. Resultados los participantes relataron sentirse sobrecargados al dedicar tiempo completo al cuidado de sus hijos, quienes se encontraban más vulnerables e inestables emocionalmente debido al distanciamiento social. Por lo tanto, las estrategias fueron adoptadas por las madres, con la intención de adaptarse y reducir las tensiones, proporcionadas por el contexto de la pandemia, en ellas y en sus hijos. Conclusión las madres de niños/adolescentes con Enfermedad de Células Falciformes necesitan ser apoyadas e instrumentalizadas para implementar cuidados centrados en la dimensión psicoemocional y buscar ayuda especializada, especialmente en relación a los sentimientos desencadenados por la necesidad de mantener la rutina terapéutica de sus hijos en la medio de la pandemia.

RESUMO Objetivo conhecer sentimentos de crianças/adolescentes com Doença Falciforme percebidos pelas mães e identificar sentimentos vivenciados por mães de crianças/adolescentes com Doença Falciforme após o surgimento da pandemia da COVID-19. Método estudo qualitativo, desenvolvido numa cidade do estado da Bahia com a participação de 19 mães de crianças e adolescentes com Doença Falciforme. Os dados foram obtidos entre março e abril de 2020 mediante entrevistas semiestruturadas via WhatsApp, as quais, após transcritas, foram submetidas a análise temática, análise fatorial e análise de similitude. Resultados as participantes referiram sentir sobrecarga ao dedicarem tempo integral aos cuidados dos filhos, que se mostraram mais vulneráveis e instáveis emocionalmente devido ao distanciamento social. Diante disso, estratégias foram adotadas pelas mães, tencionando a adaptação e a diminuição das tensões - proporcionadas pelo contexto da pandemia - nelas mesmas e em seus filhos. Conclusão as mães de crianças/adolescentes com Doença Falciforme necessitam ser apoiadas e instrumentalizadas para que se implementem cuidados centrados na dimensão psicoemocional e se busque ajuda especializada, principalmente diante daqueles sentimentos deflagrados em razão da necessidade de manter a rotina terapêutica dos seus filhos em meio à pandemia.

Ser adolescente apesar das restrições e da discriminação impostas pela doença falciforme / Ser adolescente pese a las restricciones y a la discriminación impuestas por la enfermedad de células falciformes / Being an adolescent despite the restrictions and discrimination imposed by sickle cell disease

Resumo Objetivo Compreender as experiências de ser adolescente com a doença falciforme. Métodos Estudo qualitativo, realizado em unidade de referência no estado da Bahia entre março e junho de 2018. Participaram dez adolescentes com doença falciforme, os dados foram obtidos mediante desenhos-estória com tema e entrevistas semiestruturadas e submetidos à análise embasada na Teoria Fundamentada nos Dados. Resultados A experiência do adolescente com doença falciforme é representada pela categoria central "Buscando ser um adolescente normal, apesar das restrições e da discriminação impostas pela doença falciforme" e mais cinco categorias: "Sentindo-se diferente dos outros adolescentes", ao perceberem seu crescimento alterado, vivenciarem problemas clínicos e se compararem aos demais adolescentes; "Vivendo com restrições em sua rotina diária", de ordem física e alimentar demandadas no autocuidado e manejo da doença para o alcance de qualidade de vida; "Vivenciando situações ruins", na experiência de dor, constantes hospitalizações, medo da morte e incerteza quanto ao futuro; "Sentindo-se um adolescente normal", quando podiam manter suas atividades sociais com escola, amigos e família; e "Percebendo o estigma", ao temerem a discriminação e adotarem modos de ocultar que possuíam a doença. Conclusão Ao buscar ser um adolescente normal os participantes aspiraram assumir o controle sobre a própria vida, evitar rupturas na rotina e atender às expectativas sociais, protegendo sua identidade de rótulos e discriminação.

Resumen Objetivo Entender las experiencias de ser adolescente con la enfermedad de células falciformes. Métodos Estudio cualitativo, realizado en una unidad de referencia en el estado de Bahia entre marzo y junio de 2018. Participaron diez adolescentes con la enfermedad de células falciformes, se obtuvieron los datos por medio de dibujos-historia con tema y entrevistas semiestructuradas y sometidos a análisis con base a la Teoría Fundamentada en Datos. Resultados La experiencia del adolescente con enfermedad de células falciformes está representada por la categoría central "Busca ser un adolescente normal, pese a las restricciones y a la discriminación impuestas por la enfermedad de células falciformes" y otras cinco categorías: "Se sienten diferentes de los demás adolescentes", cuando se dan cuenta de su crecimiento alterado, vivencian problemas clínicos y se comparan a los demás adolescentes; "Viven con restricciones en su rutina diaria", de orden físico y alimentario que se demandan en el autocuidado y en la gestión de la enfermedad para lograr la calidad de vida; "Vivenciando malas situaciones", en la experiencia del dolor, constantes ingresos a hospitales, miedo a la muerte e incertidumbre con relación al futuro; "Sentirse un adolescente normal", cuando podían mantener sus actividades sociales en la escuela, amigos y familia; y "Percatándose del estigma", al sentir temor de la discriminación y adoptar formas de ocultar que padecen la enfermedad. Conclusión Al intentar ser un adolescente normal, los participantes aspiraron a asumir el control sobre sus propias vidas, evitar rupturas en la rutina y atender a las expectaciones sociales, protegiendo su identidad de clasificaciones y de discriminación.

Abstract Objective Understand the experiences of being an adolescent with sickle cell disease. Methods Qualitative study, conducted at a reference service in the state of Bahia, Brazil between March and June 2018. Ten adolescents with sickle cell disease participated. The data were obtained through drawings-and-stories with a theme and semi-structured interviews and analyzed based on Grounded Theory. Results The experience of adolescents with sickle cell disease is represented by the core category of "trying to be a normal adolescent, despite the restrictions and discrimination the sickle cell disease imposes", and five other categories: "Feeling different from other adolescents", when they see that their growth has altered, that they experience medical problems and compare themselves to other adolescents, "Living with restrictions in their daily routine", of physical and food-related restrictions, required in self-care and disease management to achieve quality of life, "Living in bad situations", in the experience of pain, constant hospital visits, fear of death and uncertainty about the future, "Feeling like a normal adolescent", when they were able to maintain their social activities, including school, friends, and family, and "Realizing the stigma", when they fear the discrimination and adopt ways to hide that they have the disease. Conclusion By seeking to be a normal adolescent, the participants aspired to take control over their own lives, avoid breaks from the routine and meet social expectations, protecting their identity from labels and discrimination.

Tipping Point: Integrating Social Determinants of Health Concepts in a College of Nursing.

BACKGROUND: State health rankings, national nursing education reform, and increasing awareness of social injustices propelled a college of nursing to transform its strategic plan, infrastructure, and curriculum. The prevalence of social determinants of health (SDOH) in South Carolina indicates a need for the state's health workforce to understand the impact of SDOH and recognize strategies to address and ameliorate SDOH. With the paradigmatic integration of diversity, equity, and inclusion in nursing education, there is a need for programmatic and curricular integration of SDOH to increase awareness, foster understanding, and transform perspectives among nursing faculty, staff, and students. METHOD: Institutional changes were made to improve inclusive excellence, and the evolutionary process is described. RESULTS: SDOH-rich resources and experiential learning have been integrated across a college of nursing. CONCLUSION: This journey is ongoing and essential for preparing nurses to advance patient advocacy, health equity, and social justice for diverse populations. [J Nurs Educ. 2021;60(12):703-706.].

Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease.

OBJECTIVES: to analyze the characteristics of stigma in the interactions of people with pain and sickle cell disease and the coping strategies adopted. METHODS: qualitative study, conducted in Bahia's reference units between January and July 2018. In-depth interviews were applied to 25 adults, followed by content analysis and interpretation in light of the Sociological Theory of Stigma. RESULTS: four categories emerged from the data: Stigma in interactions with family members; Stigma in interactions with people in the general public; Stigma in interactions with health workers; and Strategies for coping with stigma. FINAL CONSIDERATIONS: in the participants' interactions, stigma produced discrediting pain reports, labeling and stereotyping, blaming patients for not improving their health, discrimination, racism, inadequate pain assessment, and delay in care. Coping included silencing, covering up, aggressive behavior, exposure to risk, reading religious texts and praises, and church attendance.

Simulation in PhD Programs to Prepare Nurse Scientists as Social Justice Advocates.

ABSTRACT: Nursing students seeking a PhD often learn only conceptually about principles such as diversity and inclusion, social determinants of health, and interprofessional team science. With only a conceptual understanding of these important elements, future nurse scientists may not fully understand their role as advocates for social justice for vulnerable populations. Students' real-life or hands-on experiences in these areas are often mentor dependent. Simulation in PhD Program is an innovative program to provide these experiences via various modalities, including authentic online activities and in-person experiences.

Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease / ¿Por qué tu dolor nunca mejora? Estigma y enfrentamiento de personas con enfermedad falciforme / Por que sua dor nunca melhora? Estigma e enfrentamento de pessoas com doença falciforme

ABSTRACT Objectives: to analyze the characteristics of stigma in the interactions of people with pain and sickle cell disease and the coping strategies adopted. Methods: qualitative study, conducted in Bahia's reference units between January and July 2018. In-depth interviews were applied to 25 adults, followed by content analysis and interpretation in light of the Sociological Theory of Stigma. Results: four categories emerged from the data: Stigma in interactions with family members; Stigma in interactions with people in the general public; Stigma in interactions with health workers; and Strategies for coping with stigma. Final Considerations: in the participants' interactions, stigma produced discrediting pain reports, labeling and stereotyping, blaming patients for not improving their health, discrimination, racism, inadequate pain assessment, and delay in care. Coping included silencing, covering up, aggressive behavior, exposure to risk, reading religious texts and praises, and church attendance.

RESUMEN Objetivos: analizar características del estigma en interacciones de personas con dolor y enfermedad falciforme y estrategias de enfrentamiento adoptadas. Métodos: estudio cualitativo, realizado en Bahia, entre enero y julio de 2018. Entrevistas en profundidad fueron aplicadas a 25 adultos, seguidas de análisis de contenido e interpretación a la luz de la Teoría Sociológica del Estigma. Resultados: cuatro categorías emergieron de los datos: Estigma en interacciones con familiares; Estigma en interacciones con personas del público general; Estigma en interacciones con los trabajadores de salud; y Estrategias de enfrentamiento del estigma. Consideraciones Finales: en las interacciones de los participantes, el estigma provocaba descrédito de los relatos de dolor, atribución de rótulos y estereotipos, culpabilización por no mejoraren la salud, discriminación, racismo, evaluación inadecuada del dolor y retraso en la atención. El enfrentamiento incluyó silenciamiento, encubrimiento, comportamiento agresivo, exposición al riesgo, lectura de textos y de himnos religiosos y frecuentación a iglesias.

RESUMO Objetivos: analisar as características do estigma nas interações de pessoas com dor e doença falciforme e as estratégias de enfrentamento adotadas. Métodos: estudo qualitativo, realizado em unidades de referência na Bahia, entre janeiro e julho de 2018. Entrevistas em profundidade foram aplicadas a 25 adultos, seguidas de análise de conteúdo e interpretação à luz da Teoria Sociológica do Estigma. Resultados: quatro categorias emergiram dos dados: Estigma nas interações com familiares; Estigma nas interações com pessoas do público geral; Estigma nas interações com os trabalhadores de saúde; e Estratégias de enfrentamento do estigma. Considerações Finais: nas interações dos participantes, o estigma provocava descrédito dos relatos de dor, atribuição de rótulos e estereótipos, culpabilização por não melhorarem a saúde, discriminação, racismo, avaliação inadequada da dor e demora no atendimento. O enfrentamento incluiu silenciamento, encobrimento, comportamento agressivo, exposição ao risco, leitura de textos e de louvores religiosos e frequentação a igrejas.