The Influence of Social Dynamics on Biological Aging and the Health of Historically Marginalized Populations: A Biopsychosocial Model for Health Disparities.

Historically marginalized populations are susceptible to social isolation resulting from their unique social dynamics; thus, they incur a higher risk of developing chronic diseases across the course of life. Research has suggested that the cumulative effect of aging trajectories per se, across the lifespan, determines later-in-life disease risks. Emerging evidence has shown the biopsychosocial effects of social stress and social support on one's wellbeing in terms of inflammation. Built upon previous multidisciplinary findings, here, we provide an overarching model that explains how the social dynamics of marginalized populations shape their rate of biological aging through the inflammatory process. Under the framework of social stress and social support theories, this model aims to facilitate our understanding of the biopsychosocial impacts of social dynamics on the wellbeing of historically marginalized individuals, with a special emphasis on biological aging. We leverage this model to advance our mechanistic understanding of the health disparity observed in historically marginalized populations and inform future remediation strategies.

The graduate school guide: How to prepare for the qualifying exam and assemble a thesis/graduate committee.

Qualifying exams and thesis committees are crucial components of a PhD candidate's journey. However, many candidates have trouble navigating these milestones and knowing what to expect. This article provides advice on meeting the requirements of the qualifying exam, understanding its format and components, choosing effective preparation strategies, retaking the qualifying exam, if necessary, and selecting a thesis committee, all while maintaining one's mental health. This comprehensive guide addresses components of the graduate school process that are often neglected.

Older adults using social support to improve self-care (OASIS): Adaptation, implementation and feasibility of peer support for older adults with T2D in appalachia: A feasibility study protocol.

INTRODUCTION: The prevalence of type 2 diabetes (T2D) is 17% higher in rural dwellers compared to their urban counterparts, and it increases with age, with an estimated 25% of older adults (≥ 65 years) diagnosed. Appropriate self-care is necessary for optimal clinical outcomes. Overall, T2D self-care is consistently poor among the general population but is even worse in rural-dwellers and older adults. In rural Kentucky, up to 23% of adults in Appalachian communities have been diagnosed with T2D and, of those, 26.8% are older adults. To attain optimal clinical outcomes, social environmental factors, including social support, are vital when promoting T2D self-care. Specifically, peer support has shown to be efficacious in improving T2D self-care behaviors and clinical and psychosocial outcomes related to T2D; however, literature also suggests self-selected social support can be obstructive when engaging in healthful activities. Currently available evidence-based interventions (EBIs) using peer support have not been used to prioritize older adults, especially those living in rural communities. METHOD: To address this gap, we conducted formative research with stakeholders, and collaboratively identified an acceptable and feasible peer support EBI-peer health coaching (PHC)-that has resulted in improved clinical and psychosocial T2D-related outcomes among participants who did not reside in rural communities nor were ≥65 years. The goal of the proposed study is to use a 2x2 factorial design to test the adapted PHC components and determine their preliminary effectiveness to promote self-care behaviors and improve glycemic control among older adults living in Appalachian Kentucky. Testing the PHC components of the peer support intervention will be instrumental in promoting care for older adults in Appalachia, as it will allow for a larger scale intervention, which if effective, could be disseminated to community partners in Appalachia. TRIAL REGISTRATION: This study was registered at www.clinicaltrials.gov (NCT06003634) in August 2023.

Reimagining bioRxiv and preprint servers as platforms for academic learning.

A popular preprint server, bioRxiv, is important as a tool for increased visibility for life science research. If used properly, however, bioRxiv can also be an important tool for training, as it may expose trainees (degree-seeking students undertaking research or internships directly related to their field of study) to the peer review process. Here, we offer a comprehensive guide to using bioRxiv as a training tool, as well as offer suggestions for improvements in bioRxiv, including confusion that may be caused by bioRxiv articles appearing on PubMed.

Impact of COVID-19 pandemic on social isolation and loneliness among minority populations.

BACKGROUND: The impact of social isolation and loneliness (SIL) was heightened during the COVID-19 pandemic. Although the pandemic disproportionately affected racial/ ethnic minorities, no studies have investigated the ramifications of the pandemic on SIL among these populations. This study aimed to determine the prevalence and pervasiveness of SIL during the COVID-19 pandemic on minority communities. MATERIALS AND METHODS: This was a single center, cross sectional study conducted by scientists from the University of Rochester Medical Center (URMC) working in collaboration with members of the Rochester community. Adult patients presenting to the emergency department at URMC who identified themselves as belonging to minority communities were asked to complete a survey that comprised questions from the Lubben Social Network Scale-6 and questions from the Campaign to End Loneliness Measurement Tool. We analyzed the percentage of SIL and conducted linear regression models to study the association between these outcomes and race/ ethnicity, age, gender, chronic disease status and the frequency of hospitalizations. RESULTS: A total of 1,029 subjects completed the survey. Social isolation was reported by 375 (37%) persons. Those of Latinx ethnicity had higher prevalence of social isolation (41%) compared to those of Black/African American race (36%) and also had higher degrees of isolation (14.8%) (15.42; p = 0.07). Loneliness was documented by 215 (21%) for the cohort with no differences based on race or ethnicity. CONCLUSIONS: Social isolation was common among minority communities during the pandemic but loneliness was less pervasive. The study highlights the need to address the specific needs of these populations.

Disparities in Lupus and the Role of Social Determinants of Health: Current State of Knowledge and Directions for Future Research.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease. The complex relationships between race and ethnicity and social determinants of health (SDOH) in influencing SLE and its course are increasingly appreciated. Multiple SDOH have been strongly associated with lupus incidence and outcomes and contribute to health disparities in lupus. Measures of socioeconomic status, including economic instability, poverty, unemployment, and food insecurity, as well as features of the neighborhood and built environment, including lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the US and are risk factors for poor outcomes in lupus. In this scientific statement, we aimed to summarize current evidence on the role of SDOH in relation to racial and ethnic disparities in SLE and SLE outcomes, primarily as experienced in the U.S. Lupus Foundation of America's Health Disparities Advisory Panel, comprising 10 health disparity experts, including academic researchers and patients, who met 12 times over the course of 18 months in assembling and reviewing the data for this study. Sources included articles published from 2011 to 2023 in PubMed, Centers for Disease Control and Prevention data, and bibliographies and recommendations. Search terms included lupus, race, ethnicity, and SDOH domains. Data were extracted and synthesized into this scientific statement. Poorer neighborhoods correlate with increased damage, reduced care, and stress-induced lupus flares. Large disparities in health care affordability, accessibility, and acceptability exist in the US, varying by region, insurance status, and racial and minority groups. Preliminary interventions targeted social support, depression, and shared-decision-making, but more research and intervention implementation and evaluation are needed. Disparities in lupus across racial and ethnic groups in the US are driven by SDOH, some of which are more easily remediable than others. A multidimensional and multidisciplinary approach involving various stakeholder groups is needed to address these complex challenges, address these diminish disparities, and improve outcomes.

Assessing the availability of trusted health information in a rural Appalachia community using social network analysis.

The purpose of this study was to investigate how trusted health information is transmitted within a rural Appalachian community. Egocentric social network methods were used to identify and characterize influential community members ("alters") that participants ("egos") go to for trusted health advice. Friends and "other health professionals" were named most frequently as health advice alters, and health advice was described as frequent and helpful. Participants could count on their health advice network for multiple forms of social support. Understanding trusted sources of health advice will allow us to identify community members to serve as change agents for rural T2DM interventions.

Formative research to promote lupus awareness and early screening at Historically Black College and University (HBCU) communities in South Carolina.

BACKGROUND: Systemic lupus erythematosus or lupus is a severe chronic autoimmune disorder that disproportionately impacts young African Americans. Increasing lupus awareness in this high-risk group may be an effective approach to ultimately improving lupus outcomes. To begin to address this disparity, this report describes qualitative data to be utilized in the development of a campaign to enhance awareness of lupus on Historically Black Colleges and University (HBCU) campuses. METHODS: Two focus groups (N = 14) were held with African American students in the network of HBCU's in South Carolina to examine perspectives of focus group participants on knowledge, awareness, and experiences with lupus. RESULTS: Five key emergent themes included: (1) Lupus Knowledge and Awareness, (2) Barriers for Not Seeking Healthcare, (3) Fatalism for Disease Burden, (4) Lifestyle Debilitation, and (5) Elevation of Education and Advocacy for Lupus. Additionally, five key recommendations emerged to improve lupus awareness and support, including: (1) remaining positive, (2) developing a supportive network, (3) the importance of increasing advocacy efficacy, and (4) messaging strategies around lupus, and (5) providing education to foster knowledge around the clinical impacts of lupus. CONCLUSION: Participants in our study stressed the necessity of lupus education and awareness among African American youth and expressed the desire for resources that would enable them to advocate for themselves and their families. Given the early age of onset for lupus, it is therefore vital to include African American youth in increasing education and awareness about lupus.

Social Factors, Epigenomics and Lupus in African American Women (SELA) Study: protocol for an observational mechanistic study examining the interplay of multiple individual and social factors on lupus outcomes in a health disparity population.

INTRODUCTION: Despite the disproportional impact of SLE on historically marginalised communities, the individual and sociocultural factors underlying these health disparities remain elusive. We report the design and methods for a study aimed at identifying epigenetic biomarkers associated with racism and resiliency that affect gene function and thereby influence SLE in a health disparity population. METHODS AND ANALYSIS: The Social Factors, Epigenomics and Lupus in African American Women (SELA) Study is a cross-sectional, case-control study. A total of 600 self-reported African American women will be invited to participate. All participants will respond to questionnaires that capture detailed sociodemographic and medical history, validated measures of racial discrimination, social support, as well as disease activity and damage for cases. Participants who wish will receive their genetic ancestry estimates and be involved in research. Blood samples are required to provide peripheral blood mononuclear cell counts, DNA and RNA. The primary goals of SELA are to identify variation in DNA methylation (DNAm) associated with self-reported exposure to racial discrimination and social support, to evaluate whether social DNAm sites affect gene expression, to identify the synergistic effects of social factors on DNAm changes on SLE and to develop a social factors-DNAm predictive model for disease outcomes. This study is conducted in cooperation with the Sea Island Families Project Citizen Advisory Committee. DISCUSSION AND DISSEMINATION: SELA will respond to the pressing need to clarify the interplay and regulatory mechanism by which various positive and negative social exposures influence SLE. Results will be published and shared with patients and the community. Knowledge of the biological impact of social exposures on SLE, as informed by the results of this study, can be leveraged by advocacy efforts to develop psychosocial interventions that prevent or mitigate risk exposures, and services or interventions that promote positive exposures. Implementation of such interventions is paramount to the closure of the health disparities gap.

Predicting HPV vaccination among Tdap vaccinated adolescents in Georgia at the county level☆.

PURPOSE: Vaccinations are reported at the state level, but services are delivered at the county level through health departments (HD). This research contributes statistical models to predict county level HPV vaccination. METHODS: Using a cross sectional study design, secondary data were analyzed for the years 2016-2018 for all counties of GA. Study population was male and female adolescents aged 13-17 who received the tetanus, diphtheria and pertussis (Tdap) vaccine. The number of administered HPV vaccine doses and HPV vaccination coverage rate were modeled using indicators of HD clinic access, age, sex, race/ethnicity, socioeconomic status, education, median household income, health insurance, and urban/rural residence. RESULTS: By county the number of administered HPV vaccine doses showed a statistically significant positive association with indicators of HD clinic access: public transit and the number of HD private clinics. HPV vaccination coverage showed a statistically significant negative association with White race and rural residency. CONCLUSION: Examining Tdap vaccinated adolescents conservatively predicted HPV vaccination and controlled for multiple confounders such as vaccination ineligibility, vaccine exemption, and vaccine opposition. Within this population, public health professionals and clinicians could use these statistical models to target HPV vaccination efforts among non-Hispanic whites and rural communities at the county level.

Spatial patterns of HPV and Tdap vaccine dose administration and the association of health department clinic access in Georgia counties.

OBJECTIVE: To characterize counties in GA by quantifying administered doses of the HPV and Tdap vaccines collected by the state health department immunization registry and indicators of Health Department (HD) clinic access. METHODS: Using a cross sectional study design, secondary data were collected from public health data sources for the years 2016 to 2018 for 159 counties of Georgia. The study population was male and female adolescents aged 13-17. The number of administered HPV and Tdap vaccine doses were modeled in relation to number of private and public HD clinics, number of HD clinics registered in the VFC program and the availability of public transportation using Poisson regression, negative binomial regression, and Bayesian spatial analysis. RESULTS: Choropleth maps showed similar clustering patterns between administered doses of the HPV vaccine and Tdap vaccine and increased counts of administered vaccine doses in counties with both public and private clinics. Administered doses of HPV and Tdap vaccines were found to exhibit spatial dependence across counties. Accounting for spatial dependence, the availability of public transit had a significant positive effect on administered HPV vaccine doses, while the number of private HD clinics had a significant positive effect on administered Tdap vaccine doses. CONCLUSIONS: Maps at the county level show vaccination variability, clustering patterns and provide additional insights on the access to health care. Bayesian spatial models are needed to accurately identify and estimate factors associated with administering doses of the HPV and Tdap vaccines. Future work is needed to further examine the utilization of HPV vaccination services among urban groupings.

The Effect of Travel Burden on Depression and Anxiety in African American Women Living with Systemic Lupus.

The United States has a deficit of rheumatology specialists. This leads to an increased burden in accessing care for patients requiring specialized care. Given that most rheumatologists are located in urban centers at large hospitals, many lupus patients must travel long distances for routine appointments. The present work aims to determine whether travel burden is associated with increased levels of depression and anxiety among these patients. Data for this study were collected from baseline visits of patients participating in a lupus study at MUSC. A travel/economic burden survey was assessed as well as the 8-item Patient Health Questionnaire (PHQ-8) and the 7-item Generalized Anxiety Disorder (GAD-7) survey as measures of depression and anxiety, respectively. Linear regression models were used to assess the relationship between travel burden and depression and anxiety. Frequency of healthcare visits was significantly associated with increased depression (ß = 1.3, p = 0.02). Significant relationships were identified between anxiety and requiring time off from work for healthcare appointments (ß = 4, p = 0.02), and anxiety and perceived difficulty in traveling to primary care providers (ß = 3.1, p = 0.04). Results from this study provide evidence that travel burden can have an effect on lupus patients' anxiety and depression levels.

Support Methodologies for African American Women With Lupus - Comparing Three Methods' Effects on Patient Activation and Coping.

Introduction: Systemic lupus erythematosus (SLE) is a chronic inflammatory disease in which the immune system attacks healthy tissues. While pharmaceutical therapies are an important part of disease management, behavioral interventions have been implemented to increase patients' disease self-management skills, provide social support, and encourage patients to take a more active role in their care. Methods: Three interventions are considered in this study; peer-to-peer methodology, patient support group, and a patient navigator program that were implemented among largely African American women with SLE at the Medical University of South Carolina (MUSC). Outcomes of interest were patient activation and lupus self-efficacy. We used a Least Squares Means model to analyze change in total patient activation and lupus self-efficacy independently in each cohort. We adjusted for demographic variables of age, education, income, employment, and insurance. Results: In both unadjusted and adjusted models for patient activation, there were no statistically significant differences among the three intervention methodologies when comparing changes from baseline to post intervention. Differences in total coping score from baseline to post intervention in the patient navigator group (-101.23, p-value 0.04) and differences in scores comparing the patient navigator with the support group were statistically significant (116.96, p-value 0.038). However, only the difference in total coping from baseline to post intervention for the patient navigator program remained statistically significant (-98.78, p-value 0.04) in the adjusted model. Conclusion: Tailored interventions are a critical pathway toward improving disease self-management among SLE patients. Interventions should consider including patient navigation because this method was shown to be superior in improving self-efficacy (coping scores).

Feasibility and preliminary data for a State-wide South Carolina Lupus Registry.

BACKGROUND: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. METHODS: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. RESULTS: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. CONCLUSION: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

The Care-coordination Approach to Learning Lupus Self-Management: a patient navigator intervention for systemic lupus inpatients.

OBJECTIVE: The Care-coordination Approach to Learning Lupus Self-Management (CALLS) study was designed to improve SLE disease self-management. This study aims to assess the benefits of the intervention compared with existing lupus care. METHODS: Participants were randomly assigned to participate in 12-weekly phone sessions with the patient navigator that included structured educational content, care coordination and patient-centred support services, or a usual care control condition. Validated measures of health literacy, self-efficacy, patient activation and disease activity were collected. We used least squares means and linear mixed-effects regression models for each outcome variable to assess the changes in outcome, from baseline to postintervention and to estimate the difference in these changes between the intervention and control group. RESULTS: Thirty participants were enrolled and 14 were randomised to the treatment group. For perceived lupus self-efficacy, there was a significant increase in mean score for the intervention group, but not for the control group. With regard to disease activity, the experimental group experienced a slight decrease in mean flare score in the previous 3 months, whereas the control group experienced a slight increase, but this finding did not reach statistical significance. Trends were similar in self-reported global disease activity, but none of the findings were significant. Health literacy and patient activation measure scores remained largely unchanged throughout the study for the two groups. CONCLUSION: These findings suggest that the CALLS intervention may work to improve aspects of SLE disease self-management. Future research will be needed to validate these findings long-term. TRIAL REGISTRATION NUMBER: NCT04400240.

Examining Racial Differences in Access to Primary Care for People Living with Lupus: Use of Ambulatory Care Sensitive Conditions to Measure Access.

Background: People living with lupus may experience poor access to primary care and delayed specialty care. Purpose: To identify characteristics that lead to increased odds of poor access to primary care for minorities hospitalized with lupus. Methods: Cross-sectional design with 2011-2012 hospitalization data from South Carolina, North Carolina, and Florida. We used ICD-9 codes to identify lupus hospitalizations. Ambulatory care sensitive conditions were used to identify preventable lupus hospitalizations and measure access to primary care. Logistic regression was used to estimate the odds ratio for the association between predictors and having poor access to primary care. Sensitivity analysis excluded patients aged >65 years. Results: There were 23,154 total lupus hospitalizations, and 2,094 (9.04%) were preventable. An adjusted model showed minorities aged ≥65 years (OR 2.501, CI 1.501, 4.169), minorities aged 40-64 years (OR 2.248, CI: 1.394, 3.627), minorities with Medicare insurance (OR 1.669, CI:1.353,2.059) and minorities with Medicaid (OR 1.662,CI:1.321, 2.092) had the highest odds for a preventable lupus hospitalization. Minorities with Medicare had significantly higher odds for ≥3 hospital days (OR 1.275, CI: 1.149, 1.415). Whites with Medicare (OR 1.291, CI: 1.164, 1.432) had the highest odds for ≥3 days. Conclusions: Our data show that middle-aged minorities living with lupus and on public health insurance have a higher likelihood of poor access to primary care. Health care workers and policymakers should develop plans to identify patients, explore issues affecting access, and place patients with a community health worker or social worker to promote better access to primary care.

Treating Systemic Lupus Erythematosus (SLE): The Impact of Historical Environmental Context on Healthcare Perceptions and Decision-Making in Charleston, South Carolina.

INTRODUCTION: Over 400,000 slaves were taken from Africa and brought to Charleston, South Carolina, as part of the transatlantic slave trade during the 18th and 19th centuries. Due to these negative historical events, the healthcare of African Americans in Charleston may be compromised in regard to chronic illnesses and other conditions affecting minorities, such as lupus. MATERIALS AND METHODS: The current study used an ethnographic approach to obtain the perspectives of lupus patients with the goal of identifying gaps within current research. In addition to patient perspectives, the geographical location of Charleston, South Carolina was considered through inquiries around culture, community, advocacy, and client/patient interaction to establish a narrative for the themes that emerged. RESULTS: The eleven major themes identified were connectedness, knowledge, experience with lupus, compliance, clinical trial participation, career and planning for the future, visits, access to resources, lifestyle, transition from child to adult care, and an overarching theme of self-management. CONCLUSION: Understanding healthcare perceptions and decision-making among culturally diverse populations, particularly those who have been defined by centuries of substandard care, marginalization, exploitation, and distrust, is critical to the development of culturally tailored interventions designed to improve patient outcomes and reduce health disparities.

Impact of the Affordable Care Act Medicaid Expansion on Access to Care and Hospitalization Charges for Lupus Patients.

OBJECTIVE: To examine the impact of the Affordable Care Act on preventable hospitalizations and associated charges for patients living with systemic lupus erythematosus, before and after Medicaid expansion. METHODS: A retrospective, quasi-experimental study, using an interrupted time series research design, was conducted to analyze data for 8 states from the Healthcare Cost and Utilization Project state inpatient databases. Lupus hospitalizations with a principal diagnosis of predetermined ambulatory-care sensitive (ACS) conditions were the unit of primary analysis. The primary outcome variable was access to care measured by preventable hospitalizations caused by an ACS condition. RESULTS: There were 204,150 lupus hospitalizations in the final analysis, with the majority (53.5%) of lupus hospitalizations in states that did not expand Medicaid. In unadjusted analysis, Medicaid expansion states had significantly lower odds of having preventable lupus hospitalizations (odds ratio [OR] 0.958); however, after adjusting for several covariates, Medicaid expansion states had increased odds of having preventable lupus hospitalizations (OR 1.302). Adjusted analysis showed that those individuals with increased age, public insurance (Medicare or Medicaid), no health insurance, rural residence, or low income had significantly higher odds of having a preventable lupus hospitalization. States that expanded Medicaid had $523 significantly more charges than states that did not expand Medicaid. Older age and rural residence were associated with significantly higher charges. CONCLUSION: Our findings suggest that while Medicaid expansion increased health insurance coverage, it did not address other issues related to access to care that could reduce the number of preventable hospitalizations.

Peer approaches to self-management (PALS): comparing a peer mentoring approach for disease self-management in African American women with lupus with a social support control: study protocol for a randomized controlled trial.

BACKGROUND: Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. METHODS: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, "mentored" or "support group" controlled design, we will assess the efficacy and mechanism(s) of this intervention in self-management, disease activity, and HRQOL. DISCUSSION: This is the first study to test peer mentorship as an alternative strategy to improve outcomes in African American women with SLE. This could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness. The peer mentoring approach is uniquely fitted to African Americans, and this intervention has the potential to lead to health improvements for African American women with SLE that have not been attainable with other interventions. This would significantly reduce disparities and have considerable public health impact. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.

My life with lupus: contextual responses of African-American women with systemic lupus participating in a peer mentoring intervention to improve disease self-management.

OBJECTIVE: The current article seeks to examine the ways in which African-American women with systemic lupus erythematosus (SLE) describe their disease experience and how they cope with their disease. This qualitative study provides deeper insight into whether experiences of African-American women with SLE differ from previous qualitative study findings. METHODS: Qualitative data were gathered using interviews and a focus group, from participants in the Peer Approaches to Lupus Self-management (PALS) programme. Data were analysed for themes related to disease experience and how participants cope with their disease. Twenty-seven African-American women with SLE were recruited into the peer mentoring programme, of which 7 served as mentors and 20 served as mentees. A 12-week peer mentoring intervention delivered by phone and based on the Chronic Disease Self-Management and Arthritis Self-Management Programs. RESULTS: Three categories encompassing a total of 10 subcategories emerged from analyses: (A) interpersonal, familialandromantic relationships; (B) individual experiences of living with SLE; and (C) physician-patient relationships. CONCLUSION: We gained insight on several issues related to patient perspectives of African-American women with SLE, and the context surrounding their thoughts and feelings related to lupus, including their providers, families and other social support networks. Additional research efforts could explore and address the thematic domains and respective subthemes identified here. Although limited due to the preliminary nature of the study, this information can be used to create future evidence-based interventions to decrease the impact of SLE on African-American patients.