Length of Stay Does Not Predict Change in Epilepsy Monitoring Unit Comfort Questionnaire Scores.

ABSTRACT: BACKGROUND: The epilepsy monitoring unit (EMU) is a clinical setting designed to help diagnose and analyze the nature behind a patient's seizures in a hospitalized unit. Patients admitted to an EMU may experience sleep deprivation, withdrawal of antiepileptic medications, and the use of a continuous electroencephalogram. The purpose of this study was to explore change in patient comfort during an EMU admission. METHODS: The Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ) was used to evaluate the initial stress level of EMU patients on their date of admission versus their fourth day on the unit. RESULTS: The average EMUCQ score from the admission date was 196.6 (26.28), whereas the mean EMUCQ score on the fourth day was 197.8 (24.79). The P value of .802 and t value of 0.25 indicated that the scores were not statistically significantly different. CONCLUSION: Although some scores indicated there was a large change between baseline and follow-up, these scores could not be readily attributed to the patient's length of stay in the unit. Future studies should examine the role of specific variables hypothesized to impact comfort in the EMU.

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.

Sleep Quality, Pain and Self-Efficacy among Community-Dwelling Adults with Sickle Cell Disease.

The aim of this paper was to report the findings of a study examining relationships among sleep, pain, self-efficacy, and demographic attributes of community-dwelling adults with sickle cell disease (SCD). Sleep difficulty has been self-reported among adults with chronic pain. Past studies have demonstrated that chronic pain results in sleep difficulties and other complications that threaten effective functioning. Community-dwelling adults with SCD are living longer and need to be evaluated for sleep quality, pain, and self-efficacy. Little is known about whether adults with SCD-related pain have disturbances in sleep and self-efficacy, and if these disturbances are affected by age and/or gender. The purpose of this descriptive, correlational study was to examine the relationships among sleep, pain, self-efficacy, and demographic attributes among community-dwelling adults with SCD, and who use support services of state SCD Associations in the United States. For this secondary data analysis, the study was conducted from June, 2014 to December, 2014 and used a descriptive correlational design to analyze data from a primary study of a convenience sample of 90 subjects with SCD, who were 18 years of age and older. Linear regression was used to compute the relationship between dependent and independent variables. All measures were self-reported. It was found that gender did not significantly affect reports of sleep, pain, or self-efficacy. Self-efficacy accounted for direct relationships with sleep and inverse relationships with pain. Some individuals (16.7%) reported sleeping very well, however, the majority (83.3%) was not sleeping very well, and a greater number of individuals (93.3%) reported having some pain. Among adults with chronic SCD pain, self-efficacy is important in maintaining a stable quality of health. Future assessments, interventions, and research should include comprehensive sleep and pain evaluations, and measures to improve self-efficacy and sleep quality, as well as measures to decrease pain among community-dwelling adults with SCD.

Scholarly tailgating defined: A diverse, giant network.

Scholarly tailgating and developmental relationships can soar professional identity, advance one's scholarly career and foster cultural diversity in healthcare. This paper provides the definition and basis of scholarly tailgating for scholars who wish to propel their careers and help enable diverse cultural approaches. The concept of scholarly tailgating explains the use of homophilic and diverse, multidisciplinary network relationships to foster an intellectual community in healthcare, and to benefit healthcare consumer. Scholars can benefit from standing on the shoulders of giants and allowing the aerodynamic wind to propel them to soaring career heights. Prudent scholars, apart from utilizing homophilic relationships and balancing these relationships with diverse heterophilic relationships, are able to lead in the professional academy, and become innovators who practice with cultural relevance. Multi-ethnic, diverse scholars working collaboratively can assist in igniting conversation and actions that reduce disparities, which are indigenous to those who are most vulnerable. Purposeful strategic planning and development of diverse networks that support scholarly advancement can best achieve these career accomplishments.

Voices of Adults Living with Sickle Cell Disease Pain.

The purpose of this qualitative study was to describe the lived experiences of adults with sickle cell disease-related pain. Using a qualitative, phenomenological approach, a purposive sample of 13 African-American adults living with Sickle Cell Disease (SCD) was recruited from a national SCD support group. Participants were asked to describe living with SCD-related pain and their experiences with pain management. Four themes emerged from the data: (1) description of the pain experience, (2) pain scales do not work, (3) managing pain, and (4) managing relationships. Persons living with SCD need comprehensive pain assessment from Health-Care Providers [HCPs], who recognize the impact of pain on their patients' lives. The findings support further research aimed at the assessment and management of SCD-related pain. HCPs are strategically positioned to improve health outcomes for those with SCD pain by listening to patients' unique stories and accurately assessing and effectively intervening to promote pain relief for patients living with SCD-related pain.

Genomics and pain research in sickle cell disease: an explanation of heterogeneity?

Sickle cell disease (SCD) is a chronic illness, and the major complication, pain, results in complex multidimensional problems that affect an individual's ability to maintain adequate quality of life in multiple areas. Chronic SCD pain is inadequately treated, because it is not well understood, and the degree of chronic pain, clinical presentation, and sequela complications can vary from patient to patient, even among individuals with the same SCD genotype. The reason for this variation is unknown, but the underlying cause might be genetic. Researchers have not explored the contribution of a genomic variable to the occurrence of heterogeneous chronic SCD pain. Previous research on the guanosine triphosphate cyclohydrolase (GCH1) gene suggests that in some cases, phenotypic heterogeneity in human sensitivity to pain correlates with underlying genotypic variations in the GCH1 gene. These findings imply that genotypic variations might also explain why some SCD patients experience more chronic pain than others.

Taking learning to the learner: using audio teleconferencing for postclinical conferences and more.

Clinical educators are often burdened by conflicts that occur as they try to balance multiple postclinical scheduling demands with students' varying timetables. The purpose of this article is to inform educators how to use teleconferences to deliver valuable postclinical debriefing, model professional growth experiences, and more. The innovative use of teleconferencing as a pedagogical method enables educators to take learning to the learners.

Spirituality, Self-Efficacy, and Quality of Life among Adults with Sickle Cell Disease.

Spirituality and self-efficacy both have been identified as factors that contribute to management of chronic illnesses and quality of life (QOL). For individuals with sickle cell disease (SCD), the lifespan is increasing, but adults report low self-efficacy, ineffective coping skills and poor QOL. The care of adult patients with SCD requires a complex, multidisciplinary team approach with a focus not only on physiological, psychological, and social needs, but also on spiritual needs. However, spirituality, self-efficacy and QOL have been little studied in individuals with SCD.This study explored the relationships among spirituality, self-efficacy, and QOL in adults with SCD. The study used a descriptive correlational design. Prospective participants, 18 years and older, were invited to participate in the study through a mail out and electronic survey.Individuals who reported high levels of spirituality and self-efficacy reported high levels of QOL. Self-efficacy and spirituality accounted for more than 50%, of the variance in QOL.This study provides information about the roles that spirituality, self-efficacy, and QOL play in the lives of adults with SCD and gives direction for developing holistic interventions.

USING LIVED EXPERIENCES OF ADULTS TO UNDERSTAND CHRONIC PAIN: SICKLE CELL DISEASE, AN EXEMPLAR.

Healthcare provision pertaining to painful, chronic conditions can best be optimized by developing positive healthcare provider (HCP)-patient relationships that minimize fragmented care. Nurses, with their holistic, humanistic approach provide a multidimensional focus that fosters individualized and effective outcomes for chronic events. The chronic pain phenotype is subjective, difficult to assess, define and effectively manage. Individuals with one such chronic syndrome, sickle cell disease (SCD), are living longer with pain that is poorly defined and inadequately managed. In addition to using quantitative assessment, clinicians and researchers must use substantive qualitative inquiry to understand the pain from the individual's perspective, define, and appropriately manage the pain. Combined quantitative and qualitative inquiry can help clinicians and researchers gain insights into pain experiences. This manuscript summarizes the importance of including a narrative (qualitative) inquiry, to offer a holistic, comprehensive and humanistic approach to understanding chronic pain from the individual's perspective and subsequently positively impacting care delivery. All nurses in the academy-educators, clinicians and researches need to include a qualitative approach to care delivery, investigation and evaluation of the phenomenon pain, and intentionally demonstrate care. The experiences of individuals with chronic sickle cell disease (SCD) pain are used as an exemplar.

Nurses collaborating with cross disciplinary networks: starting to integrate genomics into practice.

Nurses and other health-care providers are poised to include genetic discoveries into practice settings and to translate such knowledge for consumer benefit within culturally appropriate contexts. Nurses must seek collaboration with multi-disciplinary networks both locally and internationally. They must also capitalize on the expertise of other seasoned researchers in order to gain national and international exposure, recognition, and funding. Scholarly tailgating is using network relationships to achieve one's professional goals, and capitalizing on expert knowledge from seasoned researchers, educators, and practitioners from diverse international groups. By using scholarly tailgating principles, nurses can become important agents of change for multi-disciplinary networks, and thereby assist in decreasing health disparities. The purpose of this document is to encourage and inspire nurses to seek collaborative multi-disciplinary networks to enable genomic integration into health-care practice and education. Strategies for integrating genomics into practice settings are discussed.

Can heterogeneity of chronic sickle-cell disease pain be explained by genomics? A literature review.

UNLABELLED: This literature review explores the potential of genomics to explain, or at least contribute to the discussion about, heterogeneity in chronic pain in sickle-cell disease (SCD). BACKGROUND: Adults with SCD, a single-gene disorder, are living longer than in years past, yet report being burdened by chronic pain. With only a few studies on chronic pain in this population, the epidemiology is unclear. However, research in the area of pain genetics continues to advance since the conclusion of the Human Genome Project. Two pain susceptibility genes, catechol-O-methyltransferase (COMT) and cytochrome P450, have, to date, been discovered that can increase individual susceptibility to the development of chronic pain. METHOD: A search was conducted in PubMed, CINAHL, and EBSCO using the terms "sickle cell,'' "chronic pain,'' "polymorphism,'' "genetics,'' "pain genetics,'' "human,'' "adult,'' "association studies,'' and "pain susceptibility genes'' to search for articles published between 1970 and 2008. FINDINGS: Chronic pain generally is more prevalent and severe than previously reported, and individuals with SCD report daily pain. The genomic era has made it possible for scientists to identify pain susceptibility genes that contribute to variability in the interindividual experience of chronic pain. CONCLUSION: Nurses are well positioned to generate and translate genomic research, thus improving care delivery. Such research may lead to the identification of polymorphisms associated with pain sensitivity in individuals with SCD.