Addressing information infrastructure inequality during the COVID-19 Pandemic with the Latinx community

This poster presents preliminary findings of a two-phase project in which we use Participatory Research to develop with members of the Latinx community an information infrastructure to address structural information inequalities. We unveil findings from the first phase showing active invisibilization and purposeful overlooking as institutional barriers. We also show civil society engaging in seamful work to address community needs. We identify infrastructure characteristics for an Alternative Sociotechnical Infrastructure and propose the following steps to engage community members in its design. This project brings a new perspective to the study of sociotechnical infrastructure and crisis by adopting the Latinx community's perspective and highlights the usefulness of a PAR approach to addressing determinants underlying infrastructure inequities

Acculturation Strategies and Pap Screening Uptake among Sub-Saharan African Immigrants (SAIs)

Although regular cervical cancer screening can prevent cervical cancer, screening utilization remains low among immigrant population including sub-Saharan African immigrants (SAIs). Acculturation is a complex process, which can lead to adoption of positive or negative health behaviors from the dominant culture. Acculturation strategies are the varying ways in which individuals seek to go about their acculturation by either maintaining or rejecting their own cultural values ip or accepting or rejecting the host culture\u27s cultural values. Cervical cancer screening behaviors among SAI women may be influenced by their acculturation strategies. We conducted a secondary analysis of data to examine the relationship between acculturation strategies and Pap screening among 99 SAI women recruited from community settings. Data were collected on Pap screening behavior and acculturation strategy. Traditionalists and Integrationists were the dominant acculturation strategies; 32.3% women were Traditionalists and 67.7% Integrationists. From the logistic regression models, Integrationists had seven times the odds of having ever been screened compared to Traditionalists (OR = 7.08, 95% CI = 1.54-28.91). Cervical cancer screening interventions should prioritize Traditionalists for cancer screening. Acculturation strategies may be used to tailor cancer prevention and control for SAIs. More research among a larger SAI women sample is warranted to further our understanding of Pap screening patterns and acculturation strategies

Community Leadership Institute of Kentucky

The Community Leadership Institute of Kentucky(CLIK) aims to improve community research capacity to address health disparities in communities, particularly Appalachia. Established in 2014, through a partnership of the UK Center of Excellence in Rural Health, the UK Center for Clinical and Translational Science Community Engagement Program, and the Kentucky Office of Rural Health, the intensive four-week training provides: Training in research and leadership Funding for community research projects Technical support for up to one year as participants implement community research projects Up to 12 slots are available annually, with priority given to leaders from Appalachian Kentucky and to projects related to key areas of research interest, including: Cancer prevention (e.g., nutrition, physical activity, smoking cessation) Reducing obesity and sedentary lifestyle Prevention and management of chronic diseases (e.g., diabetes and cardiovascular disease) Prevention and treatment of substance abus

\u27It Could be Worse ... Lot\u27s Worse!\u27 Why Health-Related Quality of Life is Better in Older Compared with Younger Individuals with Heart Failure

Background: health-related quality of life (HRQOL) is markedly impaired in patients with heart failure (HF). Despite worse prognosis and physical status, older patients have better HRQOL than younger patients. Objective: to determine reasons for differences in HRQOL in older compared with younger HF patients. Methods: a mixed methods approach was used. HRQOL was assessed using the Minnesota Living with HF Questionnaire and compared among HF patients (n = 603) in four age groups (≤53, 54–62, 63–70 and ≥71 years). Socio-demographic/clinical and psychological factors related to HRQOL were determined in four groups using multiple regressions. Patients (n = 20) described their views of HRQOL during semi-structured interviews. Results: HRQOL was worse in the youngest group, and best in the two oldest groups. The youngest group reported higher levels of depression and anxiety than the oldest group. Anxiety, depression and functional capacity predicted HRQOL in all age groups. Qualitatively, patients in all age groups acknowledged the negative impact of HF on HRQOL; nonetheless older patients reported that their HRQOL exceeded their expectations for their age. Younger patients bemoaned the loss of activities and roles, and reported their HRQOL as poor. Conclusions: better HRQOL among older HF patients is the result, in part, of better psychosocial status. The major factor driving better HRQOL among older patients is a change with advancing age in expectations about what constitutes good HRQOL

Identification of Symptom Clusters among Patients with Heart Failure: An International Observational Study

BACKGROUND: Virtually all patients with heart failure experience multiple symptoms simultaneously, yet clinicians and researchers usually consider symptoms in isolation. Recognizing and responding early to escalating symptoms is essential to preventing hospitalizations in heart failure, yet patients have considerable difficulty recognizing symptoms. Identification of symptom clusters could improve symptom recognition, but cultural differences may be present that must be considered. OBJECTIVES: To identify and compare symptom clusters in heart failure patients from the United States, Europe and Asia. DESIGN: Cross-sectional, observational study. SETTINGS: In- and out-patient settings in three regions of the world: Asia (i.e., China and Taiwan); Europe (i.e., the Netherlands and Sweden); and the United States. PARTICIPANTS: A total of 720 patients with confirmed heart failure. Propensity scoring using New York Heart Association Classification was used to match participants from each of the three regions. METHODS: Symptoms were identified using the Minnesota Living with Heart Failure Questionnaire. To identify symptom clusters we used cluster analysis with the hierarchical cluster agglomerative approach. We used the Euclidean distance to measure the similarity of variables. Proximity between groups of variables was measured using Ward\u27s method. The resulting clusters were displayed with dendrograms, which show the proximity of variables to each other on the basis of semi-partial R-squared scores. RESULTS: There was a core group of symptoms that formed two comparable clusters across the countries. Dyspnea, difficulty in walking or climbing, fatigue/increased need to rest, and fatigue/low energy were grouped into a cluster, which was labeled as a physical capacity symptom cluster. Worrying, feeling depressed, and cognitive problems were grouped into a cluster, which was labeled as an emotional/cognitive symptom cluster. The symptoms of edema and trouble sleeping were variable among the countries and fell into different clusters. CONCLUSION: Despite the diversity in cultures studied, we found that symptoms clustered similarly among the cultural groups. Identification of similar symptoms clusters among patients with heart failure may improve symptom recognition in both patients and healthcare providers

Identification of symptom clusters among patients with heart failure: An international observational study

Virtually all patients with heart failure experience multiple symptoms simultaneously, yet clinicians and researchers usually consider symptoms in isolation. Recognizing and responding early to escalating symptoms is essential to preventing hospitalizations in heart failure, yet patients have considerable difficulty recognizing symptoms. Identification of symptom clusters could improve symptom recognition, but cultural differences may be present that must be considered

Community engagement during COVID: A field report from seven CTSAs

Prior to the COVID pandemic, many CTSAs employed face-to-face interactions to conduct most of their community engagement (CE) activities. During the COVID pandemic, such engagement had to be curtailed and alternatives needed to be formulated. In addition, Community Engaged Research (CEnR) teams refocused their efforts to address this public health crisis. To obtain a general understanding of how CTSAs have conducted CE and CEnR during the COVID pandemic, we invited seven CTSA CE leaders to provide brief field reports of their activities during the pandemic. This included how their approaches to CE and CEnR were modified during the COVID-19 pandemic and key lessons learned. We found that despite numerous challenges, all seven CTSAs CE cores were able to successfully carry out CE and CEnR. We also found that the fundamental principles of meaningful and authentic stakeholder engagement were of paramount importance during the pandemic. Through virtual approaches, all sites had considerable success in maintaining CE in during the COVID pandemic. They also leveraged existing bi-directional community partnerships to carry out meaningful and impactful research. This included both new COVID CEnR and also innovative approaches to sustain prior non-COVID research. These findings suggest that academic-community partnerships must be fostered and sustained over the many years so that when such crises emerge, all partners can build on existing trust and mutual respect. The lessons learned and the new tools and approaches developed would be key in addressing any such future public health emergencies

Identification of symptom clusters among patients with heart failure : An international observational study

Objectives: To identify and compare symptom clusters in heart failure patients from the United States, Europe and Asia

It could be worse ... lot's worse!' Why health-related quality of life is better in older compared with younger individuals with heart failure

Health-related quality of life ( HRQOL ) is markedly impaired in patients with heart failure ( HF ). Despite worse prognosis and physical status, older patients have better HRQOL than younger patients