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.

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.

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.

"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.

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.

HPV vaccine acceptance among African-American mothers and their daughters: an inquiry grounded in culture.

BACKGROUND: Much of the research on African-Americans' HPV vaccine acceptance has largely focused on racial/ethnic differences related to cognitive, socio-economical, and structural factors that contribute to differences in HPV vaccine acceptance and completion. A growing body of literature suggest that cultural factors, such as mistrust of healthcare providers (HCPs) and the healthcare system, religion, and social norms related to appropriate sexual behaviors, also plays a prominent role in their HPV vaccine acceptance. However, these studies were limited in their use of theoretical approaches necessary to conceptualize and operationalize culture. OBJECTIVE: To explore the influence of culture on African-American mothers' and daughters' HPV vaccine acceptance using the PEN-3, a culturally-centered conceptual framework. METHODS: Grounded theory techniques were used to explore cultural factors that influenced the acceptance of the HPV vaccine among African-American mothers (n = 28) and their daughters (n = 34). RESULTS: Positive attitudes towards vaccination stemmed from beliefs that the HPV vaccine has cancer prevention benefits and that vaccinations in general protected against infectious diseases. Negative attitudes stemmed from beliefs that the HPV vaccine was too new, not effective, daughters were too young, and that vaccines were not a one-size-fits-all intervention. Majority of mothers and daughters indicated that their religious doctrine did not impede their HPV vaccination decisions. For a few mothers, religious beliefs could not be separated from their HPV vaccination decisions and ultimately deterred HPV vaccine acceptance. HCP recommendations were valued however mothers were often dissatisfied with the detail of information communicated. Support networks provided both positive and negative types of social support to mothers and daughters. The media highlighted the cancer prevention benefits of the HPV vaccine and unintentionally communicated negative information of the HPV vaccine, which deterred HPV vaccine acceptance. CONCLUSION: Study findings can inform the development of culturally appropriate interventions that advances the evidence on cervical cancer prevention.

African-American parents' and daughters' beliefs about HPV infection and the HPV vaccine.

OBJECTIVE: To increase our understanding about the health beliefs of African-American parents and their daughters toward HPV infection and HPV vaccine acceptance. METHODS: The Health Belief Model was used as a guiding framework. Principles of grounded theory, theoretical sampling, and constant comparison analysis were used to qualitatively analyze data generated from personal interviews of African-American parents (n = 30) and their 12- to 17-year-old daughters (n = 34). RESULTS: Mothers and daughters perceived low susceptibility to HPV infection and perceived the HPV vaccine as beneficial in protecting against genital warts and cervical cancer. Compared to daughters, parents placed particular emphasis on the vaccine's protection against genital warts. A major HPV vaccine acceptance barrier among parents and daughters was the politicization of the HPV vaccine by government figures. In addition, concerns about unknown side effects, safety, and effectiveness of HPV vaccination emerged. Cues to action varied among parents and daughters, and self-efficacy was higher among parents than daughters. CONCLUSION: Understanding the health beliefs that promote HPV vaccine acceptance, while identifying and addressing beliefs that are barriers among parents and daughters, will assist in the development of appropriate HPV vaccine promotion initiatives for African-American parents and daughters.

Associations among hearing loss, hospitalization, readmission and mortality in older adults: A systematic review.

OBJECTIVE: Older adults with hearing loss face many challenges impacting health outcomes. The objective of this review was to evaluate current evidence for associations among hearing loss, hospitalizations, readmissions and mortality in older adults living with hearing loss. METHODS: A systematic search, of PubMed, CINAHL and Embase was performed in October 2018. Studies that were included consisted of populations aged 50 and older, publications after 2004, clearly defined hearing loss measurements, and non-aggregated, appropriate outcome variables. We excluded deafness, specified hearing losses, and cochlear implant users. RESULTS: Fifteen mortality studies, four hospitalization studies, and one readmission study were identified. After adjustments, three mortality, three hospitalization, and the one readmission study found significant associations. DISCUSSION: Hearing loss was associated with an increased risk of hospitalizations, readmission and mortality. However, there is insufficient evidence to support that hearing loss is independently associated to increased risk of these outcomes.

Stigma of Sickle Cell Disease: A Systematic Review.

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.

Amplified hearing device use in acute care settings for patients with hearing loss: A feasibility study.

The objective of this study was to assess the feasibility of using amplified hearing devices (AHD) in acute care settings for patients with hearing loss. Secondary objectives include patient and nurse satisfaction, and nursing perceived productivity. Twenty-five adult hard of hearing patients and 15 nurses were evaluated. Patients with a perceived hearing handicap were identified through the Hearing Handicap for the Elderly Screening Version. Patient and staff nurse surveys were used to assess for satisfaction with using the AHD. Nurses were surveyed to evaluate whether they felt the AHD made patient communication more efficient and effective. Twenty-four patients expressed satisfaction with the AHD and would use it in future hospitalizations. Nurses also reported satisfaction, perceived improvement of patient communication and decreased time spent communicating with patients. Results demonstrate the feasibility of using an AHD in acute care inpatient settings where elderly hard of hearing patients are common.

Does Attendance at a Sickle Cell Educational Conference Improve Clinician Knowledge and Attitude Toward Patients with Sickle Cell Disease?

Sickle cell disease (SCD) is a genetic disease associated with both chronic pain and acute painful events referred to as vaso-occlusive crises. Individuals with SCD suffer from a multitude of medical complications in addition to pain. Patients often are stigmatized as "drug-seeking" and receive inadequate pain management. The purpose of this study was to compare clinicians' SCD knowledge and attitudes toward patients with SCD before attending a 2-day conference on SCD (T1) with knowledge and attitudes immediately postconference (T2) and 2 months postconference (T3). A prospective, descriptive survey design was used. The authors administered surveys to assess SCD knowledge and clinicians' attitudes toward patients with SCD at three time points: T1 (N = 59), T2 (N = 38), and T3 (N = 30). SCD knowledge was measured using a 20-item survey, and clinicians' attitudes toward patients with SCD were measured with the General Perceptions About Sickle Cell Patients Scale, which included items on four independent subscales: positive attitudes, negative attitudes, concern-raising behaviors, and red-flag behaviors. The authors compared changes in knowledge and attitude scores between T1-T2 and T1-T3. Overall, knowledge scores were significantly improved (p < .001) and significantly increased between T1-T2 (p < .0001) and T1-T3 (p = .01). Negative attitudes trended lower over the three time points (p = .07), but a significant decrease in the negative attitudes score was only noted for T1-T3 (Z = -2.16.17, p = .03). Attendance at an educational SCD conference was an effective means to improve knowledge and decrease negative attitudes among clinicians. These differences were maintained at 2 months postconference.

Perceptions of young adults with sickle cell disease concerning their disease experience.

AIM: To describe the perceptions of young adults with sickle cell disease concerning their disease experience. BACKGROUND: Sickle cell disease is a lifelong, genetic condition with both acute and chronic painful exacerbations. Little is known of the experiences of young adults with sickle cell disease. DESIGN: This study used a qualitative, descriptive design with semi-structured, life review interviews. METHODS: Between August 2010-September 2012, purposive sampling was used to recruit participants with a known sickle cell disease diagnosis who were ages 18-35 years, were being seen in an outpatient sickle cell clinic and were English speaking. Participants provided demographic information and responded to two interviews. A content analysis was then used to interpret participants' narratives of their experiences of living with sickle cell disease. RESULTS/FINDINGS: A sample of 29 young adults with sickle cell disease consisted of 79·3% females, 35·6% employed full-time or part-time, 71·6% single/never married and 57·8% with sickle cell anaemia. Their mean age was 25·8 with 13·2 years of education. Four major interview themes were identified: (1) struggles to maintain or achieve good quality of life or life satisfactions; (2) strategies to maintain self-care; (3) interruptions to family, work and social roles; and (4) difficulties accessing needed health care. CONCLUSION: Young adults face many challenges while living with sickle cell disease. With a better understanding of their disease experience and how it influences their quality of life, researchers can begin tailoring appropriate interventions to improve health outcomes in this vulnerable, minority population.

Role of self-care in sickle cell disease.

Self-care is an important aspect of managing a chronic disease. In sickle cell disease (SCD), home self-care contributes to individual pain management and thus pain crisis prevention. A better understanding of self-care can help health care providers equip patients with the resources and skills necessary to participate in their disease management. The aim of this study was to examine factors that influence self-care among young adults with SCD. A descriptive, cross-sectional study was conducted using secondary data analysis. Participants were recruited from two SCD clinics in the southeastern United States. The sample consisted of 103 young adults, ages 18 to 30 years, with SCD. Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, sociodemographics, self-care, and hospital visits for pain crises. Study participants were primarily women (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an annual average of three hospital visits for pain crises. Participants, on average, had 12 years of education, an annual household income of $35,724, and were 24 years old. Social support (p = .001), SCD self-efficacy (p = .002), and years of education (p = .043) were significantly related to self-care. Of the hypothesized variables, only income was significantly associated with hospital visits for pain crises (r = -0.219, p = .05). Individuals with SCD may benefit from self-care interventions that enhance social support, SCD self-efficacy, and access to education. To inform intervention development, further investigation is needed regarding daily self-care behaviors used by young adults with SCD.

Nurses' attitudes toward patients with sickle cell disease: a worksite comparison.

Individuals with sickle cell disease (SCD) have reported being stigmatized when they seek care for pain. Nurse attitudes contribute to stigmatization and may affect patients' response to sickle cell cues, care-seeking, and ultimately patient outcomes. The purpose of this cross-sectional, descriptive, comparative design study was to determine whether there are significant differences in nurse attitudes toward patients with SCD by worksite-medical-surgical units compared with emergency departments/intensive care units (ED/ICU). The sample consisted of 77 nurses (36 nurses from the ED/ICU and 41 from medical-surgical units) who completed an anonymous online survey. No significant differences were noted in attitudes by worksite, with nurses from both sites demonstrating high levels of negative attitudes toward patients with SCD. Findings suggest that nurses from both worksites need additional education about SCD and care of this vulnerable, patient population.

An exploratory path model of the relationships between positive and negative adaptation to cancer on quality of life among non-Hodgkin lymphoma survivors.

Adaptation is an ongoing, cognitive process with continuous appraisal of the cancer experience by the survivor. This exploratory study tested a path model examining the personal (demographic, disease, and psychosocial) characteristics associated with quality of life (QOL) and whether or not adaptation to living with cancer may mediate these effects. This study employed path analysis to estimate adaptation to cancer. A cross-sectional sample of NHL survivors (N = 750) was used to test the model. Eligible participants were ≥ 18 years, at least 2 years post-diagnosis, and living with or without active disease. Sixty-eight percent of the variance was accounted for in QOL. The strongest effect (-0.596) was direct by negative adaptation, approximately 3 times that of positive adaptation (0.193). The strongest demographic total effects on QOL were age and social support; <65 years of age had better QOL and better adaptation compared to those ≥ 65. Of the disease characteristics, comorbidity score had the strongest direct effect on QOL; each additional comorbidity was associated with a 0.309 standard deviation decline on QOL. There were no fully mediated effects through positive adaptation alone. Our exploratory findings support the coexistence of positive and negative adaptations perception as mediators of personal characteristics of the cancer experience. Negative adaptation can affect QOL in a positive way. Cancer survivorship is simultaneously shaped by both positive and negative adaptation with future research and implications for practice aimed at improving QOL.

Breathing Exercises for Inpatients with Sickle Cell Disease.

Sickle cell disease (SCD) is a painful condition wherein breathing often is compromised. This pilot study supports the premise that individuals with SCD are willing to learn breathing exercises. Medical-surgical nurses should encourage breathing exercises for managing pain and preventing complications.

Care seeking for pain in young adults with sickle cell disease.

In individuals with sickle cell disease (SCD), recognizing the cues to an acute pain episode and responding appropriately are important. The purpose of this mixed-methods pilot study is to identify preliminary factors that influence care seeking for pain in young adults with SCD. Responses were received from 69 young adults with SCD, age 18-35 years. The majority of respondents (88%) wait until the pain intensity is an average of 8.7 (± 1.2) on a scale of 1 to 10 before seeking care. Prominent themes influencing care seeking for pain include: trying to treat pain at home, avoiding the emergency department because of past treatment experiences, the desire to avoid admission to the hospital, and the importance of time in the lives of the young adults with SCD. Young adults with SCD need additional support from family and healthcare providers in order to make timely, appropriate decisions regarding care seeking.

Knowledge and Experience of In-Home Virtual Reality for Chronic Pain in Sickle Cell Disease.

Many adults with sickle cell disease experience chronic, nonvaso-occlusive pain that can benefit from nonpharmacological interventions available for use in the home setting. Virtual reality (VR) has been shown to be effective in decreasing pain in chronic pain conditions and may be useful for home-based self-management of chronic pain in sickle cell. However, the literature lacks studies examining this potential. Additionally, the knowledge and experiences of adults with sickle cell who have tried VR for home-based chronic pain management have not yet been reported. This qualitative, descriptive pilot study explored the knowledge and perceptions of VR among adults with sickle cell and their experience with using in-home VR for chronic pain. Nine participants completed demographic questionnaires and an individual interview that was recorded, transcribed verbatim, and analyzed using thematic analysis. Participants were 21 to 38 years of age, and most were female (88.9%) with a medium or high sickle cell disease severity (88.9%) and a chronic pain-grade classification of grade III (high disability-moderately limiting) or grade IV (high disability-severely limiting) (55.5%). Interview themes, which aligned with the technology acceptance model, were 1) pain beliefs and self-management, 2) VR as another world, and 3) experience of using in-home VR. Based on preliminary data, VR shows promise as a strategy for nonpharmacological management of chronic pain in adults with sickle cell. However, further investigations are warranted to mitigate the challenges and limitations associated with using VR in this capacity. PERSPECTIVE: Few evidence-based, nonpharmacological interventions exist for chronic pain in adults with sickle cell disease. This first qualitative, pilot study of in-home VR for chronic pain in adults with sickle cell disease suggests that VR interventions need further exploration as a nonpharmacological strategy for mitigating their pain in the home setting.

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.

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.