Coretta M. Jenerette

Health-Related Stigma in Young Adults With Sickle Cell Disease

Health-related stigma is increasingly becoming a major public health issue that is receiving more attention. Young adults with sickle cell disease (SCD) are at risk for health-related stigmatization due to the many challenges of the disease. SCD includes the lifelong challenges of managing the chronic illness while accessing and navigating the health care system. The burdens of the disease can affect all aspects of the lives of individuals with SCD to include physiological, psychological, and social well-being. Although others may be involved in the process of stigmatization, the purpose of this paper was to support the need to develop patient-oriented interventions to prevent and treat health-related stigma in young adults with SCD, as these individuals may face health-related stigma throughout their lives, but especially immediately after transitioning from pediatric to adult care. Additionally, the Revised Theory of Self-Care Management for Sickle Cell Disease is offered as a framework from which theory-based interventions can be derived.

Outcomes of an Uncertainty Management Intervention in Younger African American and Caucasian Breast Cancer Survivors

PURPOSE/OBJECTIVES To determine whether breast cancer survivors (BCSs) who received an uncertainty management intervention, compared to an attention control condition, would have less uncertainty, better uncertainty management, fewer breast cancer-specific concerns, and more positive psychological outcomes. DESIGN A 2 × 2 randomized block, repeated-measures design, with data collected at baseline and two other points postintervention, as well as a few days before or after either a mammogram or oncologist visit. SETTING Rural and urban clinical and community settings. SAMPLE 313 female BCSs aged 50 or younger; 117 African Americans and 196 Caucasians. METHODS Participants were blocked on ethnicity and randomly assigned to intervention or control. The intervention, consisting of a scripted CD and a guide booklet, was supplemented by four scripted, 20-minute weekly training calls conducted by nurse interventionists. The control group received the four scripted, 20-minute weekly training calls. MAIN RESEARCH VARIABLES Uncertainty in illness, uncertainty management, breast cancer-specific concerns, and positive psychological outcomes. FINDINGS BCSs who received the intervention reported reductions in uncertainty and significant improvements in behavioral and cognitive coping strategies to manage uncertainty, self-efficacy, and sexual dysfunction. CONCLUSIONS The intervention was effective as delivered in managing uncertainties related to being a younger BCS. IMPLICATIONS FOR NURSING The intervention can realistically be applied in practice because of its efficient and cost-effective nature requiring minimal direct caregiver involvement. The intervention allows survivors who are having a particular survival issue at any given point in time to access information, resources, and management strategies. KNOWLEDGE TRANSLATION Materials tested in CD and guide booklet format could be translated into online format for survivors to access as issues arise during increasingly lengthy survivorship periods. Materials could be downloaded to a variety of electronic devices, fitting with the information needs and management styles of younger BCSs.

Testing the Theory of Self-care Management for sickle cell disease.

Factors predicting health outcomes in persons with sickle cell disease (SCD) were investigated within the framework of the theory of self-care management for SCD, which proposes that vulnerability factors negatively affect health care outcomes and self-care management resources and positively mediate the relationship between vulnerability factors and health care outcomes. A cross-sectional descriptive design was used to test the model with a sample of 232 African American adults with SCD. Results supported the negative effect of vulnerability factors on health outcomes. The overall model was supported, however, self-care management resources did not mediate the relationship between vulnerability and health care outcomes. The findings provide support for interventions to increase self-care management resources to improve health care outcomes.

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.

Models of inter-institutional collaboration to build research capacity for reducing health disparities

Health disparities are inequities in the health of different groups of people that may lead to needless pain, suffering, and premature death. The Yale-Howard Partnership Center on Reducing Health Disparities by Self and Family Management is part of a federally-funded initiative to foster the development of partnerships among researchers, faculty, and students at minority-serving institutions and research-intensive institutions. The goal of the initiative is to maximize the resources available to each of the partnering institutions. The purpose of this article is to describe the models of research collaboration that have emerged from the Yale-Howard Partnership Center on Reducing Health Disparities by Self and Family Management.

The Influence of Maternal Behaviors During Childhood on Self-Efficacy in Individuals With Sickle Cell Disease

Little is known about the influence of maternal behaviors during childhood on the self-efficacy of individuals with sickle cell disease (SCD).This study retrospectively investigated the relationship between maternal overprotection and caring during childhood and self-efficacy in adulthood. Using a cross-sectional survey design, 32 adults with SCD completed questionnaires about demographics, maternal parenting behaviors, and self-efficacy. On average, adults with SCD reported moderate levels of SCD self-efficacy, high levels of overprotection, and high levels of caring. Self-efficacy was significantly related to educational level ( r = .39, p = .04), number of SCD crises per year (r = —.41, p = .04), and caring (r = .48, p = .01). Using simultaneous regression modeling, maternal caring was significantly predictive of self-efficacy (β = .44, p = .03). Results suggest that maternal caring during childhood may promote the development of self-efficacy in adults with SCD.

Parental acceptance and uptake of the HPV vaccine among African-Americans and Latinos in the United States: A literature review

BACKGROUND African-Americans and Latinos suffer the highest cervical cancer burden compared to other populations and have sub-optimal HPV vaccination rates. OBJECTIVE To condense research findings of studies conducted with African-Americans and Latinos on factors associated with HPV vaccine acceptability and uptake. METHODS Standards for conducting an integrative review were used. PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases were searched. RESULTS Awareness about HPV and the HPV vaccine varied by demographics of parents. For Latino parents, acculturation and awareness were associated. However, findings were mixed regarding the association between acculturation and knowledge. Among African-Americans, higher socioeconomic status (SES) and awareness were associated. Sexuality-related concerns, concerns about safety and low perceived risk of daughters acquiring HPV emerged as barriers to vaccination among Latinos and African-Americans. Among Latinos, vaccine acceptability was associated with the vaccines cancer prevention benefits and a providers recommendation. Among African-Americans, acceptability was associated with awareness, perceived risk of acquiring HPV, religion, and a providers recommendation. Few interventions have been developed to increase HPV vaccine acceptance. Importantly, few studies assessed the influence of culture on vaccine acceptance and uptake. CONCLUSIONS Future research should be informed by culture-centered theories as this is the first step to inform the development of culturally-grounded interventions.

Developing a Short Form of the Simple Rathus Assertiveness Schedule Using a Sample of Adults With Sickle Cell Disease

Purpose: Ethnic and cultural norms influence an individual’s assertiveness. In health care, assertiveness may play an important role in health outcomes, especially for predominantly minority populations, such as adults with sickle cell disease. Therefore, it is important to develop measures to accurately assess assertiveness. It is also important to reduce response burden of lengthy instruments while retaining instrument reliability and validity. The purpose of this article is to describe development of a shorter version of the Simple Rathus Assertiveness Schedule (SRAS). Design: Data from a cross-sectional descriptive study of adults with sickle cell disease were used to construct a short form of the SRAS, guided by stepwise regression analysis. Results: The 19-item Simple Rathus Assertiveness Scale—Short Form (SRAS-SF) had acceptable reliability (α = .81) and construct validity and was highly correlated with the SRAS (r = .98, p = .01). Conclusions: The SRAS-SF reduces response burden, while maintaining reliability and validity.

An intervention to decrease stigma in young adults with sickle cell disease.

Young adults with sickle cell disease (SCD) are often stigmatized when they seek care for pain. The purpose of this pilot study was to test an intervention to decrease health-related stigma during care-seeking. Young adults with SCD ages 18 to 35 years (n = 90) were randomized to either the care-seeking intervention (CSI) or an attention control group that participated in life review interviews. The two groups were compared by t tests and longitudinal data analyses on the change from baseline to the last time point in total health-related stigma and health-related stigma by doctors. Findings suggest that the CSI was associated with significant increased awareness of perceived total stigma and stigma by doctors compared with the attention control group. These findings are promising in terms of lessons learned from a pilot intervention that focused on the role communication skills play in decreasing health-related stigma in young adults with SCD.

Preliminary Validity and Reliability of the Sickle Cell Disease Health-Related Stigma Scale

There have been no published studies that measure health-related stigma in individuals with sickle cell disease (SCD). This study provides preliminary validity and reliability of the Sickle Cell Disease Health-Related Stigma Scale (SCD-HRSS). Using a sample of 77 young adults with SCD, ages 18–35 years, the results support the reliability of the SCD-HRSS with an overall Cronbachs alpha reliability of 0.84 and construct validity with a positive correlation between SCD-HRSS and a measure of depressive symptoms. Participants reported the highest levels of perceived stigma from the general public, then doctors, and lastly family. Limitations and directions for future research are discussed.