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 anemia. 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 healthcare. 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.

Background 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. Aims To examine factors which influence self-care among young adults with SCD. Design A descriptive, cross-sectional study was conducted using secondary data analysis. Settings Participants were recruited from two SCD clinics in the southeastern United States. Participants The sample consisted of 103 young adults, ages 18–30 years, with SCD. Methods Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, socio-demographics, self-care, and hospital visits for pain crises. Results Study participants were primarily female (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an average of three hospital visits for pain crises annually. 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=−.219, p=.05). Conclusions 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.

Background 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. Aim The purpose of this study was to determine if there are significant differences in nurse attitudes towards patients with SCD by worksite- medical-surgical units compared to emergency departments/intensive care units (ED/ICU). Design The study used a cross-sectional, descriptive comparative design. Setting/Participants The sample consisted of 77 nurses (36 nurses from the ED/ICU and 41 nurses from medical-surgical units) who completed an anonymous online survey. Results and Conclusions There were no significant differences in attitudes by worksite with both sites having high levels of negative attitudes towards patients with SCD. Findings suggest that nurses from both worksites need additional education about SCD and care of this vulnerable, patient population.

Preliminary findings were promising and support the need for additional studies evaluating improvisational music therapy interventions for acute pain management in adults with SCD.

In the United States (U.S.), Blacks have higher morbidity and mortality from cardiovascular disease (CVD) than other racial groups. The Black racial group includes African Americans (AAs), African immigrants (AIs), and Afro-Caribbeans (ACs); however, little research examines how social determinants differentially influence CVD risk factors in each ethnic subgroup. We analyzed the 2010-2014 National Health Interview Survey, a cross-sectional, nationally representative survey of non-institutionalized civilians. We included 40,838 Blacks: 36,881 AAs, 1660 AIs, and 2297 ACs. Age- and sex-adjusted hypertension prevalence was 37, 22, and 21% in AAs, ACs, and AIs, respectively. Age- and sex-adjusted diabetes prevalence was 12, 10, and 7% in AAs, ACs, and AIs, respectively. In the multivariable logistic regression analyses, social determinants of hypertension and diabetes differed by ethnicity. Higher income was associated with lower odds of hypertension in AAs (aOR 0.86, 95% CI 0.77-0.96) and ACs (aOR 0.55, 95% CI 0.37-0.83). In AAs, those with some college education (aOR 0.79, 95% CI 0.68-0.92) and college graduates (aOR 0.62, 95% CI 0.53-0.73) had lower odds of hypertension than those with < high school education. In AIs, having health insurance was associated with higher odds of hypertension (aOR 1.59, 95% CI 1.04-2.42) and diabetes (aOR 3.22, 95% CI 1.29-8.04) diagnoses. We observed that the social determinants associated with hypertension and diabetes differed by ethnicity. Socioeconomic factors of health insurance and income were associated with a disparate prevalence of hypertension by ethnic group. Future research among Blacks should stratify by ethnicity to adequately address the contributors to health disparities.

Acute, intermittent vaso-occlusive pain is the hallmark of sickle cell disease (SCD) and is associated with substantial morbidity and impaired quality of life (QOL). The subgroup of adults with SCD who transition from recurrent, acute pain to chronic, persistent pain have even greater QOL impairment and higher rates of healthcare utilization. Self-management is central to SCD management; however, its role in chronic pain management is not established. This qualitative study was conducted to answer the following research questions: (1) What is the chronic pain experience of adults with SCD? (2) What self-management strategies do adults with SCD use for chronic pain? and (3) Do adults with SCD have any needs in the self-management of chronic pain? Eighteen Black adults with SCD completed a demographics questionnaire and an interview. The majority of the participants were 21-30 years of age (mean 33.5, SD 7.6), female (61.1%), employed at least part-time (61.1%), single/never married (72.2%), and had a SCD type of sickle cell anemia (55.5%). Interview analysis revealed three major themes: (1) the chronic pain experience; (2) strategies for managing chronic pain; and (3) challenges and needs in managing chronic pain. Study findings can be used to support chronic pain management among adults with SCD. Further research is needed to devise and implement effective strategies for the prevention and management of chronic SCD pain.

Background Sickle cell disease (SCD) is primarily characterized by pain. This chronic pain with acute exacerbations is the most common reason for hospital visits, admissions, and readmissions, particularly in young adults (aged 18–39 years). People who present to the hospital for pain crises often report that nurses lack knowledge of SCD and, consequently, they do not provide appropriate, timely care. Objectives Because pain episodes often result in hospital admissions, this article highlights prominent issues that staff nurses need to know. Methods Using a review of the literature and case studies, the authors provide recommendations to improve care of adults with SCD. Findings No objective signs of a sickle cell pain crisis exist. Patients react to pain in different ways and use various coping mechanisms in response. Suspected opioid addiction should not affect the provision of nursing care. Pain must be treated appropriately to decrease the potential for prolonged admissions and/or readmissions. Patients are to be acknowledged as experts and collaborated with in developing an appropriate plan of care. Advocacy on behalf of the patient is important for better communication with providers. With this knowledge, nurses will be better equipped to provide the appropriate and timely care required to manage pain crises experienced by individuals living with SCD.

Among 170 adults with sickle cell disease, we evaluated chronic pain impact and disability prevalence, assessed age and gender differences, and identified psychosocial predictors of chronic pain intensity and disability. Most participants had a high level of disability. Chronic pain intensity and disability were significantly associated with pain catastrophizing and chronic pain self-efficacy, and worsened with age. Further research is needed to confirm study findings and develop interventions, including palliative care approaches that address catastrophizing and disability, particularly for young women and middle-aged adults with sickle cell disease. Moreover, consistent clinical assessment of chronic pain and psychosocial health should be implemented.