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

Limited Association Between Perceived Control and Health-Related Quality of Life in Patients with Heart Failure

Background: Perceived control has been suggested as a modifiable factor associated with health-related quality of life (HRQOL). However, the relationship between perceived control and HRQOL has not been evaluated in patients with heart failure (HF). The purpose of this study was to determine whether perceived control independently predicts HRQOL in HF patients. Methods: A total of 423 HF patients were included. Hierarchical linear regression was performed to determine the independent association of perceived control to HRQOL after controlling for covariates. Results: Higher levels of perceived control were associated with better HRQOL in univariate analysis. However, this relationship was strongly attenuated after controlling for relevant demographic, clinical, and psychological factors; the variance in HRQOL explained by the addition of perceived control to this model was small (1.4%). Conclusions: We found only a weak relationship between perceived control and HRQOL when considered in the presence of demographic, clinical, and psychological factors

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

Use of cognitive interviewing in the development of a Spanish language genetic knowledge instrument

Study purpose. Genetic advances are significantly impacting healthcare, yet recent studies of ethnic group participation in genetic services demonstrate low utilization rates by Latinos. Limited genetic knowledge is a major barrier. The purpose of this study was to field test items in a Spanish-language instrument that will be used to measure genetic knowledge relevant to type 2 diabetes among members of the ethnically heterogeneous U.S. Latino community. Accurate genetic knowledge measurement can provide the foundation for interventions to enhance genetic service utilization. Design. Three waves of cognitive interviews were conducted in Spanish to field test 44 instrument items Thirty-six Latinos, with 12 persons representative of Mexican, Central and South American, and Cuban heritage participated, including 7 males and 29 females between 22 and 60 years of age; 17 participants had 12 years or less of education. Methods. Text narratives from transcriptions of audiotaped interviews were qualitatively analyzed using a coding strategy to indicate potential sources of response error. Through an iterative process of instrument refinement, codes that emerged from the data were used to guide item revisions at the conclusion of each phase; revised items were examined in subsequent interview waves. Results. Inter-cultural and cross-cultural themes associated with difficulties in interpretation and grammatical structuring of items were identified; difficulties associated with comprehension reflected variations in educational level. Of the original 44 items, 32 were retained, 89% of which were revised. Six additional items reflective of cultural knowledge were constructed, resulting in a 38-item instrument. Conclusions. Use of cognitive interviewing provided a valuable tool for detecting both potential sources of response error and cultural variations in these sources. Analysis of interview data guided successive instrument revisions leading to improved item interpretability and comprehension. Although testing in a larger sample will be essential to test validity and reliability, the outcome of field testing suggests initial content validity of a Spanish-language instrument to measure genetic knowledge relative to type 2 diabetes. Keywords. Latinos, genetic knowledge, instrument development, cognitive interviewin

Community Readiness to Prevent Intimate Partner Violence in Bexar County, Texas

The purpose of this article is to describe the Community Readiness Model implemented by the San Antonio Safe Family Coalition in Bexar County, Texas, a coordinated community response to prevent intimate partner violence. The project used a participatory action process to (a) determine the city\u27s and county\u27s stage of readiness to prevent intimate partner violence; (b) identify differences in the city and county by dividing the area into sectors for the assessment; (c) engage the community in determining the accuracy and usefulness of the results of the assessment; (d) develop targeted strategies to move the city and county to a higher stage of readiness for prevention of intimate partner violence; and (e) evaluate the results of the project