Exploratory factor and confirmatory analyses of the polycystic ovary syndrome health-related quality of life questionnaire (PCOSQ-50).

BACKGROUND: A condition-specific instrument is necessary to measure the health-related quality of life among those with polycystic ovary syndrome (PCOS), the most common chronic endocrinopathy among women. The first instrument was developed in 1988, followed by several revisions. However, further recommendations from all versions include additional application and measurement among different cultural populations of women with PCOS and psychometric testing based on use among larger samples of women with PCOS. Thus, the purpose of this study was to explore the factor structure of the Polycystic Ovary Syndrome Questionnaire (PCOSQ-50) using an international cross-sectional survey data from women with PCOS aged 18-42 years. METHODS: Using data from the largest known international cross-sectional study of women with PCOS aged 18-42 years (n = 935) to date, exploratory factor and confirmatory analyses were conducted for the PCOSQ-50, followed by factor labeling using a thematic analysis approach. RESULTS: Respondents were 31.0 ± 5.8 years of age, mostly White (72%), well-educated (56% had a college degree), married (69%), and employed full-time (65%). Three-quarters (74%) of the sample had one or more chronic conditions in addition to PCOS. Approximately 20% of the respondents originated from countries such as the United Kingdom, Australia, South Africa, etc. The PCOSQ-50 demonstrated good reliability but may be best described using a 7-factor model. The 7-factor model revealed goodness-of-fit. Thematic analysis suggested the following labels of those seven factors: hirsutism, fertility, isolation/trepidation, sexual function, self-esteem, emotional, and obesity. CONCLUSION: More research is needed to adapt the current PCOSQ-50, as well as to create an age-appropriate PCOS-specific HRQoL instrument for peri-postmenopausal women with PCOS.

When a baby is born, so is a parent: Understanding the effects of preterm birth on Black parents through the lens of the NIMHD framework.

BACKGROUND: The rate of preterm birth (PTB) is high in the United States and Black infants remain disproportionately affected, with the disparity between Black and White infant deaths greater today than it was under antebellum slavery. PURPOSE: The National Institute on Minority Health and Disparities Research Framework reflects a unique set of determinants relevant to the understanding and promotion of minority health. METHODS: We have applied this framework to better understand the effects of PTB on Black parents and the distribution of the social determinants of health, including structural determinants and root causes of inequities. DISCUSSION: This adaptation shows the intersection in maternal and infant health that shapes individuals' experiences, drives disparities and impacts perinatal outcomes in critical periods over the lifecourse. CONCLUSION: In our efforts to achieve health equity, it is imperative that we study the underlying mechanisms and recognize that policies, institutional structures, and social factors are drivers of racism.

Hepatitis B immunity among undergraduate nursing students: A brief report.

BACKGROUND: Health sciences students who report low/equivocal hepatitis B titers may be required to repeat the immunization series, even though the result may not indicate non-immunity. METHOD: To describe hepatitis B immunity patterns, this retrospective, descriptive study utilized de-identified vaccination records and anti-HBs titers of three cohorts of sophomore nursing students entering clinical rotations in 2018-2019. RESULTS: Only 33% of students had initial anti-HBs quantitative serum titer ≥10 mIU/ml, demonstrating immunity. After students with low/equivocal titers (n = 191, 64%) were re-immunized per institution protocol, only 2% (n = 7) were identified as non-responders. Cumulative costs incurred by students for revaccination and repeat titer exceeded $20,000, with a process time of up to 8 months. CONCLUSION: While rates of exposure to hepatitis B in acute care settings have steadily declined in the United States, students who go on to practice in community and public health settings have increased risk of exposure. Following best practices in demonstrating hepatitis B immunity, which include a single challenge dose followed by titer 4 weeks later, would decrease per student costs, wait time, and administrative burden associated with documentation and student counseling.

Next generation nurse scientists: A systems approach to engaging undergraduate students in research.

BACKGROUND: Nursing Doctor of Philosophy program enrollment has declined. Undergraduate nursing student (UGS) research engagement is associated with future graduate education, an essential element for building the nursing faculty pipeline. PURPOSE: (a) To describe the infrastructure and culture-enhancing resources and strategies associated with building UGS research engagement and (b) to evaluate UGS research engagement. METHODS: Guided by a socioecological systems model university and college documents, databases, and college of nursing survey results were used to identify approaches to, and outcomes of, engaging UGS in research. Descriptive statistics were calculated to illustrate 5-year UGS research engagement trends. FINDINGS: Resources and strategies included grant funding, research assistant funding, student research showcases, and faculty mentorship. UGS research 5-year engagement trends included (a) a 75% increase in the number of students mentored, (b) a 30% rise in funded research proposals, and (c) a 54% increase in paid research assistantships. DISCUSSION: Purposefully using existing resources, growing the college of nursing infrastructure, and cultivating a culture recognizing faculty contributions were approaches associated with increased UGS research engagement.

The Experience of Chemotherapy Teaching and Readability of Chemotherapy Educational Materials for Women with Breast Cancer.

Chemotherapy is one of the most common forms of treatment for women with breast cancer. While chemotherapy is often effective, managing side effects can be challenging. Chemotherapy education is critical in assisting patients to manage side effects and to improve the treatment experience. However, materials are often not thoroughly assessed for readability and format which could be problematic for patients learning self-care while in treatment. We used a mixed-method design to illuminate chemotherapy teaching and focused on readability and format of education materials. We scored the materials using three readability assessments: (1) Flesch Reading Ease (FRE), (2) Flesch-Kincaid (F-K), and (3) a Simple Measure of Gobbledygook (SMOG). We evaluated the format of the materials using Suitability Assessment of Materials (SAM) guidelines. Lastly, we used thematic analysis to describe the experience of 37 women with breast cancer undergoing chemotherapy education. The mean readability of the materials ranged from "difficult" to "fairly difficult" based on the FRE scoring, and the material was written on a 9th- to 13th-grade reading level. Most of the materials scored as "adequate" using SAM guidelines but lacked incorporation of graphics or illustrations. The thematic analysis revealed three major findings: (1) finding control in learning, (2) receiving unexpected support, and (3) learning in unforeseen ways. Nurses need to supplement chemotherapy education materials with individualized teaching to ensure comprehension. Additionally, nurses and website developers may want to consider implementing culturally appropriate information and use videos to combat challenging readability.

Dithered depth imaging.

Single-photon lidar (SPL) is a promising technology for depth measurement at long range or from weak reflectors because of the sensitivity to extremely low light levels. However, constraints on the timing resolution of existing arrays of single-photon avalanche diode (SPAD) detectors limit the precision of resulting depth estimates. In this work, we describe an implementation of subtractively-dithered SPL that can recover high-resolution depth estimates despite the coarse resolution of the detector. Subtractively-dithered measurement is achieved by adding programmable delays into the photon timing circuitry that introduce relative time shifts between the illumination and detection that are shorter than the time bin duration. Careful modeling of the temporal instrument response function leads to an estimator that outperforms the sample mean and results in depth estimates with up to 13 times lower root mean-squared error than if dither were not used. The simple implementation and estimation suggest that globally dithered SPAD arrays could be used for high spatial- and temporal-resolution depth sensing.

Social construction of biopsychosocial and medical experiences of women with polycystic ovary syndrome.

AIM: To explore the perceived biopsychosocial and medical experiences of women with polycystic ovary syndrome, as presented in stories written by women on a social support website. DESIGN: Qualitative descriptive using low inference content analysis, guided by the social construction of illness theoretical framework. METHODS: In July 2018, 95 of 379 website stories were randomly selected. The stories were analysed, ending in September 2018. RESULTS: Three major themes aligning with framework constructs were identified: Biopsychosocial struggles and management: "I can't even look in the mirror without wanting to cry," Sociocultural navigation: "I feel all alone and no one understands me." and Healthcare encounters: "I don't feel like I'm getting the help I need". These themes revealed that Polycystic ovary syndrome (PCOS) has biological and experiential components, which exist independently of each other and hold social and cultural meanings. CONCLUSION: Care for women with PCOS should be multidisciplinary, multidimensional, and multi-level to ameliorate biopsychosocial issues. Provider (physicians, nurse practitioners, physician assistants) education about PCOS is necessary to enhance timely diagnosis and implement individualized treatment strategies. Non-advanced practice nurses are in a unique position to have an impact on patient satisfaction and clinical outcomes by providing and reinforcing patient education, coordinating management processes, counselling via telephone or in-person appointments and facilitating referrals to ancillary providers. Evidence-based and accessible psychosocial supports and interventions will lead to improved self-esteem and effective coping skills, and reduced stigma-related stress. Lastly, policy changes are warranted to address access to care, health insurance inequities and inadequate funding for PCOS-related research. IMPACT: Increased awareness of PCOS and its biopsychosocial aspects will aid providers with timely diagnosis and meaningful treatment plans. Women with PCOS will gain acknowledgment, acceptance, and insight towards health care and self-management.

Simulation-Based Interprofessional Education in a Rural Setting: The Development and Evaluation of a "Remote-In" Telehealth Scenario.

Simulation-based interprofessional education (IPE) is challenging to implement, especially on rural campuses. This article describes an innovative approach to IPE implementation using telehealth technology. Twenty-nine interdisciplinary students (nursing, pharmacy, and medical) participated in a simulation-based IPE scenario using a telehealth robot. Student experiences were evaluated using a mixed-methods approach. Surveys and video-recorded debriefing sessions revealed the majority of students felt the experience was superior to their previous IPE experiences, facilitated better understanding of disciplinary roles, and provided experience using telehealth tools. Programs considering this approach should have strong community partnerships, institutional support, and shared vision among key stakeholders.

Factors influencing chemotherapy knowledge in women with breast cancer.

BACKGROUND: Chemotherapy knowledge is linked to managing side effects, reducing exposure to potential infection, and adjusting lifestyle behaviors while going through treatment. However, no research exists regarding the influence of patients' personal attributes on chemotherapy knowledge. Aim The aim of this study was to describe the relationships of health literacy and demographics on chemotherapy knowledge among women with breast cancer undergoing treatment. METHOD: We used a descriptive, exploratory design with convenience sampling of women with breast cancer receiving intravenous chemotherapy who completed one mandatory education session. Participants completed a demographic questionnaire and three instruments: 1) Rapid Estimate of Adult Literacy - Short Form (REALM-SF); 2) Shortened Test of Functional Health Literacy in Adults (S-TOFHLA); and 3) Leuven Questionnaire on Patient Knowledge of Chemotherapy (L-PaKC). We used univariate linear regression and ANOVA to identify how health literacy and demographics influenced chemotherapy knowledge. RESULTS: The REALM-SF (p = .022) and S-TOFHLA (p = .023) scores were significantly associated with chemotherapy knowledge. Chemotherapy knowledge scores were affected by marital status (p = .018) and income (p < .001) where married women had significantly higher chemotherapy knowledge scores (M = 92.6, SD = 6.6) than women who were divorced (M = 83.3, SD = 16.7) with a knowledge score difference of -9.3 between the groups (p = .02). Comparisons showed significant differences of chemotherapy knowledge between women with differing income levels. CONCLUSIONS: This study highlights the relevance of considering patients' health literacy and personal attributes such as marital status and income when teaching about chemotherapy.

What makes a good health 'app'? Identifying the strengths and limitations of existing mobile application evaluation tools.

Research using mHealth apps has the potential to positively impact health care management and outcomes. However, choosing an appropriate mHealth app may be challenging for the health researcher. The author team used existing evaluation tools, checklists, and guidelines to assess selected mHealth apps to identify strengths, challenges, and potential gaps within existing evaluation tools. They identified specific evaluation tool components, questions, and items most effective in examining app content, usability, and features, including literacy demand and cultural appropriateness; technical information; practical aspects of app functionality; and evolving capabilities of mobile medical apps. Challenges included the subjective nature of the results, time required to complete the evaluation, lack of emphasis on evidence-based content, and inadequate tool flexibility. Health researchers considering the integration of mobile apps into research will benefit from evaluation tools that assess both evidence-based content and the ability of the mobile app to securely integrate with other digital technologies involved in patient care. Next steps will include the involvement of health care providers and professionals, including nurses a wide range of expertise, to develop an mHealth evaluation tool that focuses on identifying quality, evidence-based mobile apps into patient outcomes research.

Development and Evaluation of a Theory-Based Approach to Reducing Carbon Monoxide (CO) Morbidity and Mortality: The CO Blitz Model.

Carbon monoxide (CO) poisoning is preventable yet remains the most common cause of U.S. non-drug poisoning. The purpose of this non-experimental study was to develop and evaluate the theory-based CO Blitz Model. Events targeted five SC communities; volunteers provided education while local firefighters installed CO alarms. At the 4-6-month follow-up evaluation, all homes still had a functioning CO alarm; most recipients could name CO sources in their homes (78%) and what to do if the alarm sounded (90%). The theory-driven process evaluation revealed the CO Blitz Model was tailorable and effective in addressing unique community resources and needs.

A Theory-Guided Qualitative Exploration of Occupational Influences on Firefighters' Dietary Behaviors.

BACKGROUND: Firefighters face many inherent occupational health hazards and increased risk for several cancers, making peak health essential. However, cardiac events and stroke continue as leading causes of on-duty deaths. Healthy diets promote prevention of cardiovascular disease and cancers. While some dietary interventions have been undertaken, sustained improvements have not been observed. Understanding firefighters' occupational influences on dietary behavior is vital for implementation of effective interventions to improve nutrition. METHODS: The Theoretical Domains Framework (TDF) guided this qualitative study. Nine focus groups of firefighters who work 24-hour shifts and one interview with a fire administrator (N = 34) were conducted in 2018 across South Carolina, United States. FINDINGS: Predominant TDF domains of influence for workplace dietary behaviors included social/professional role and identity; social influences; environmental context and resources; knowledge; beliefs about consequences; memory, attention, and decision processes; and emotion. Four emergent themes mapped to TDF domains: "We are family": Firefighters feel a strong identity in their work and with peers; "If you are a firefighter, you've got a second job": Firefighters experience many limitations in personal and workplace resources; "That kills us": Firefighters were knowledgeable about most all occupational health and safety risks except dietary risks; and "You're tired, wore out": Occupational stress influenced nutritional choice making. CONCLUSIONS: Firefighters experience many barriers to healthy eating while at work due to unique occupational influences. The findings from this study highlighted specific behavioral domains and barriers to be intervened upon that may increase the likelihood of long-term adoption of healthier dietary practices by firefighters.

Exploring the Experiential Journey of Women with PCOS Across the Lifespan: A Qualitative Inquiry.

Introduction: Peri-postmenopausal women with the chronic condition polycystic ovary syndrome (PCOS) remain at cardiometabolic risk and/or subsist with established comorbidity while continuing to manage persistent PCOS signs and symptoms, such as hirsutism. Thus, PCOS transcends the reproductive years, yet there is sparse scientific literature on the peri-postmenopausal years of women with PCOS. Purpose: To explore how peri-postmenopausal women's perceptions about PCOS have changed over the lifespan since their PCOS diagnosis. Methods: A cross-sectional survey with one qualitative question was conducted via Research Electronic Data Capture (REDCap) among women with PCOS aged ≥43 years, who were all recruited from PCOS-specific Facebook pages. Of the 107 women completing the survey, 72 substantively answered the qualitative question. The qualitative responses were analyzed using the steps of reflexive thematic analysis. Themes were interpreted and discussed through the lens of the bioecological conceptual model. Results: Respondents were 47.6 (±4.1) years of age, primarily White (87.5%), employed full time (65.3%), and married (75%) with children (68%). Four overall themes were identified: 1) dismissal 2) information desert, 3) PCOS experience over the lifespan, and 4) mindset. Conclusion: The study findings illustrated the unique healthcare needs among peri-postmenopausal women with PCOS. Further research is needed to further explore their healthcare concerns and psychosocial needs followed by studies that develop and assess interventions that promote symptom and adaptive coping strategies across their lifespan.

"We rely on each other": A qualitative exploration of rural Eastern Region Native American experiences during the COVID-19 pandemic.

Background: Native American communities suffered disproportionately negative effects during the COVID-19 pandemic, yet no research has explored the experiences of rural Eastern Region Native Americans. Methods: Informed by the Native Reliance Model and Indigenous Standpoint Theory, we conducted a qualitative descriptive project in the Spring and Summer of 2022; data included semi-structured interviews and focus groups with 24 individuals representing five South Carolina tribal groups. Findings: Thematic analysis yielded four emergent themes: 1) "Let's just finish the Indians off": Pandemic distrust rooted in historical and contemporary Native American experiences; 2) "We have been misled": Making sense of conflicting public health information; 3) "I'm not giving it to some innocent person": COVID-19 mitigation behaviors as Native American cultural practice; and 4) "We put the plan in place": Self-advocacy and action as a source of Native American pride and responsibility. Interpretation: These participants demonstrated resiliency grounded in family and tribal ties, even in the face of personal losses, economic struggles, and healthcare barriers. To strike a balance between cultural traditions and public health recommendations, public health practitioners should 1) build partnerships with community leaders, elders, and tribal health authorities to facilitate the development of culturally respectful interventions that address specific health concerns in the context of historical traumas; and 2) implement alternative methods of communication and engagement to ensure equitable access to healthcare services in rural locations, such as collaborating with community organizations, deploying mobile health units, and utilizing traditional channels of communication within these communities.

Barriers and Facilitators of Diet, Physical Activity Levels, and Sleep Among Nursing Undergraduates and Early-Career Nurses: A Qualitative Descriptive Study.

PURPOSE: Mechanisms leading to burnout, associated with high turnover in nursing, may start as early as in nursing school. Given health habits (e.g., diet, physical activity, and sleep) can exacerbate or lessen the impact of burnout, this study examined current barriers and facilitators to healthy diet, physical activity levels, and sleep among nursing undergraduates (UGs) and early-career nurses (ECNs). RESEARCH DESIGN: Qualitative descriptive study. SAMPLE: 25 nursing UGs and 25 ECNs (within 3 years of graduation) from a Southeastern college of nursing. DATA COLLECTION AND ANALYSIS: After development of theory-informed interview guides, participants conducted interviews either in-person or by phone, which were audio-recorded and transcribed. Braun and Clarke's six-step thematic analysis was used to analyze the transcripts. RESULTS: All but one (aged 54) UG was in their early 20s and ECNs were in their early to mid-20s. Most participants were white, females. Time and stress were the strongest barriers among UGs and ECNs for adherence to healthy diet, physical activity, although stress did act as a facilitator for physical activity in a subset of both UGs and ECNs. Shiftwork was a common barrier to healthy behaviors among ECNs. CONCLUSION: The fact that the more common and stronger barriers to healthier behaviors among UGs and ECNs were the same give credence to the idea that processes associated with burnout begin during or before nursing education and are persistent.

Perceptions of COVID-19 and the Use of Health Information Technology Among People Who Are Uninsured: Multimethod Survey Study.

BACKGROUND: As of May 2023, the novel SARS-CoV-2 has claimed nearly 7 million lives globally and >1.1 million lives in the United States. Low-income populations are often disproportionately affected by risk factors such as lifestyle, employment, and limited health literacy. These populations may lack the knowledge of appropriate infection precautions or have reduced access to care during illness, particularly in countries without universal health care. OBJECTIVE: We aimed to explore the perceptions and experiences of COVID-19, including symptoms and risk factors among uninsured individuals seeking care at a free medical clinic, and to obtain respondents' perceptions of and suggestions for adapting a mobile health (mHealth) app to an uninsured population known to have low health literacy. METHODS: We conducted a prospective multimethod survey study with a convenience sample of uninsured adults seeking care at 3 free clinics in the United States. Respondents were questioned about their risk for and awareness of COVID-19 symptoms, COVID-19 testing, current technology use, and the use of technology to facilitate their health regarding COVID-19. Data were analyzed using descriptive statistics (eg, frequencies and mean differences). In addition, a small subset of respondents from one of the clinics (n=10) participated in interviews to provide feedback about the design of a COVID-19 web-based smartphone (mHealth) app. RESULTS: The survey respondents (N=240) were 53.8% (n=129) female, were primarily White (n=113, 47.1%), and had a mean age of 50.0 (SD 11.67; range 19-72) years. Most respondents (162/222, 73%) did not think that they were at risk for COVID-19. Although respondents reported only moderate confidence in their knowledge of the short- and long-term symptoms of COVID-19, their knowledge of the symptoms aligned well with reports published by the Centers for Disease Control and Prevention of the most common acute (590/610, 96.7%) and long-term (217/271, 80.1%) symptoms. Most respondents (159/224, 71%) reported an interest in using the mHealth app to gain additional information regarding COVID-19 and available community resources. Respondents who were interviewed provided suggestions to improve the mHealth app but had overall positive perceptions about the potential usefulness and usability of the app. CONCLUSIONS: It was encouraging that the knowledge of COVID-19 symptoms aligned well with the reports published by the Centers for Disease Control and Prevention and that respondents were enthusiastic about using an mHealth app to monitor symptoms. However, it was concerning that most respondents did not think they were at a risk of contracting COVID-19.

"I don't think I have a chance to get it": International university student HPV knowledge and preventive behaviors.

Objective: Half of new human papilloma virus ( (HPV)) infections occur between the ages of 15 and 24. As preventive measures are underutilized globally; international university students are at particular risk for HPV infection and sequelae. The study aim was to explore HPV knowledge and preventive behaviors in this population. Participants: Eighty-one undergraduate and graduate international university students (49 females, 32 males) at a southeastern university. Methods: Exploratory sequential mixed methods guided by the Health Belief Model. Results: Integrated qualitative/quantitative data revealed four themes mapped to relevant HBM constructs: Perceived susceptibility to HPV; Perceived benefits/Perceived barriers to HPV prevention; Cues to Action; and Likelihood of Engaging in Health-Promoting Behavior. Over half believed they were not at risk for HPV/sequelae. Only a quarter had received HPV vaccination. Conclusions: International university students represent an important catch-up population for HPV screening/vaccination. Results can be used to design and tailor interventions for this vulnerable population.

Foods and Beverages Available to Nurses in Hospital Cafeterias, Vending Machines, and Gift Shops.

PURPOSE: Hospitals are important workplaces for nurses with many perceived barriers to healthy eating, but objective assessments are lacking. This study evaluated the healthfulness of hospital consumer food environments. DESIGN: Cross-sectional observational; Setting: South Carolina; Subjects: Cafeterias, vending machines (VM), and gift shops (GS) in hospitals of varying size, urbanization, and region. MEASURES: Using the Hospital Nutrition Environment Scan (HNES), primary outcomes of interest included availability, access, prices, and location of healthy foods in relation to nursing units. ANALYSIS: Descriptive and inferential statistics by independent samples t-test, ANOVA, Mann-Whitney U, χ2, or Fisher's exact test as appropriate. RESULTS: Thirty-one hospitals were observed from December 2019 to February 2020. Average composite HNES score (n = 28) was 46.3 ± 14.9 (-45 to 173 range), indicating sub-optimal food environments. Cafeterias (n = 31) scored an average of 30.9 ± 10.5 (-33 to 86 range). Average VM (n = 31) and GS (n = 28) scores were 11.6 ± 6.0 (-6 to 55 range) and 2.9 ± 4.0 (-6 to 32 range), respectively. Small hospitals (≤100 beds) had lower average cafeteria score (22.4 ± 10.3) than extra-large hospitals (≥500 beds; 42 ± 5.2, P < .01). Small hospitals also had lower composite HNES scores (34.4 ± 17.1) compared to extra-large hospitals (61.0 ± 14.4, P = .02). Data regarding availability, access, prices, and location were also reported. CONCLUSION: Due to abundant availability of unhealthy foods and beverages, hospital consumer food environments scored low on observations using the HNES, highlighting the opportunity to improve the healthfulness of facility offerings.

A systematic approach to developing NP-led student health services clinic on a regional university campus.

BACKGROUND: Universities are communities with specific health care needs, and rural campuses often do not have access to student health services (SHS). PROBLEM: Lack of basic services can increase health risks for students and the greater community. METHODS: A theory-informed quality improvement project utilizing an organizational assessment, study survey, and proof-of-concept intervention designed to demonstrate feasibility and acceptability of a SHS clinic. INTERVENTION: An NP-directed influenza immunization clinic was conducted on a small rural college campus in southeastern United States. RESULTS: Seventy-eight students received influenza vaccinations, demonstrating to local stakeholders the feasibility and acceptability of SHS for primary preventative services. Ninety-seven percent of these students expressed a high likelihood that they would obtain the vaccine again. CONCLUSIONS: Results of this study can be used as an exemplar to guide health care initiatives focused on college students in rural communities.

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.