Using a community-engaged research process to plan, implement, and evaluate a cancer education program to improve knowledge and screening intentions among African American men.

OBJECTIVE: We assessed acceptability, feasibility, and preliminary efficacy of a culturally appropriate, cancer education program to improve cancer knowledge, attitudes, subjective norms, and screening intentions for oropharynx, colon, and prostate cancers among African American men. We detailed the community-engaged research process used for African American men to design, implement, and evaluate the program. MATERIALS AND METHODS: We recruited 84 (61 in-person, 23 online) African American men over 2-months across 4 churches in Middle Tennessee in 2021. A single group, pre-post-test design was used to evaluate the 2.5-h hybrid program. Scales used were: General self-efficacy for cancer screening; attitudes toward cancer; general cancer knowledge; and subjective norms related to cancer. One-item measured cancer screening intention. Taba robust partial correlation measured the degree of association between changes in means of each explanatory variable with changes in means of each outcome variable. IBM SPSS version 28 and R/RStudio version 3.6.0 was used for data analysis. We conducted three focus groups (n = 17) to assess program acceptability. Microsoft Excel version 26 was used to conduct thematic analysis for this data. FINDINGS: Quantitative Significant differences were found in the pre/post comparisons of knowledge (mean difference: 0.22; p-value = 0.015), self-efficacy (mean difference: 0.23; p-value < 0.001), and prostate cancer screening intention (mean difference: 0.19; p-value = 0.049) scores. This indicates the mean score for knowledge, self-efficacy, and prostate cancer screening intention was significantly higher post-intervention. Qualitative Focus group themes were: (1) Impact of Program on Participants Psychosocial Health (2) Perspectives on Life after the program. (3) Views on Programmatic Components; (4) Recommendations for Program Improvement. CONCLUSIONS: Results demonstrate our program is feasible, acceptable, and could increase cancer screening intentions and behavior. Psychosocial providers should demonstrate cultural awareness and humility when providing services to address the psychological and social needs for cancer screening among African American men.

Exploring dimensions of social capital in relation to healthy eating behaviours in the US rural south.

OBJECTIVE: This study examined relationships between dimensions of social capital (SC) (social trust, network diversity, social reciprocity and civic engagement) and fruit, vegetable, and sugar-sweetened beverage (SSB) consumption among rural adults. Potential moderators (neighbourhood rurality, food security, gender and race/ethnicity) were explored to develop a more nuanced understanding of the SC-healthy eating relationship. DESIGN: Data were from a 2019 mailed population-based survey evaluating an eleven-county initiative to address health equity. Participants self-reported health behaviours, access to health-promoting resources and demographics. Logistic regression models were used to analyse relationships between predictors, outcomes and moderators. SETTING: Five rural counties, Georgia, USA. PARTICIPANTS: 1120 participants. RESULTS: Among participants who lived in the country (as opposed to in town), greater network diversity was associated with consuming ≥ 3 servings of fruit (OR = 1·08; 95 % CI 1·01, 1·17, P = 0·029), yet among participants who lived in town, greater civic engagement was associated with consuming ≥ three servings of fruit (OR = 1·36; 95 % CI 1·11, 1·65, P = 0·003). Both food-secure and food-insecure participants with greater social reciprocity had lower odds of consuming 0 SSB (OR = 0·92; 95 % CI 0·86, 0·98, P = 0·014, OR = 0·92; 95 % CI 0·86, 0·99, P = 0·037, respectively). Men with greater social trust were more likely to consume 0 SSB (OR = 1·09; 95 % CI 1·01, 1·18, P = 0·038), and Whites with greater network diversity were more likely to meet daily vegetable recommendations (OR = 1·10; 95 % CI 1·01, 1·19, P = 0·028). CONCLUSIONS: Findings provide a basis for future qualitative research on potential mechanisms through which SC and related social factors influence healthy eating in rural communities.

A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos.

AIM: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. METHOD: Trained community health educators delivered a 30-min presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre- and post-surveys one to two weeks after the session. RESULTS: Paired-sample t-test showed significant increases in unadjusted mean scores for knowledge (p < 0.001), trust in medical researchers (p < 0.001), and willingness to participate in clinical trials (p = 0.003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained significant for the overall sample (knowledge: p < 0.001; trust in medical researchers: p < 0.001; willingness: p = 0.001) and for African Americans (knowledge: p < 0.001; trust in medical researchers: p = 0.007; willingness: p = 0.005). However, willingness to participate was no longer significant for Latinos (knowledge: p < 0.001; trust in medical researchers: p = 0.034; willingness: p = 0.084). CONCLUSIONS: The culturally-appropriate, educational program showed promising results for short-term, clinical trial outcomes. Further studies should examine efficacy to improve research participation outcomes.

Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities.

BACKGROUND: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. METHODS: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. RESULTS: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. CONCLUSIONS: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.

The Use of Religion in the Management of Depression in Sickle Cell Disease: A Systematic Review.

The incidence of depression in individuals with sickle cell disease (SCD) is significantly higher compared to the general population. This systematic literature review was conducted to: (1) describe depressive symptoms in SCD individuals and (2) explore religiosity as a coping mechanism for alleviating depressive symptoms. Emerging themes were physical depressive symptoms and psychosocial depressive implications. Despite uptake of religion and religiosity as a coping strategy in other chronic illnesses, no studies were found that used religiosity to cope with depressive symptoms in SCD. Future research should explore the use of religiosity as an alternative therapy to cope with depression symptoms.

Student perspectives on managing sickle cell disease at school.

OBJECTIVE: The study objective was to identify the perceptions of children with sickle cell disease (SCD) in the school environment. METHODS: Semistructured interviews (N = 14) were conducted with pediatric patients ages 6 to 10 who attended Metro Nashville Public Schools. These participants were recruited through the Vanderbilt Sickle Cell Disease Clinic. Participants were asked about the perceived efficacy of their teachers to (1) understand SCD; (2) communicate with students regarding SCD; (3) handle an SCD-related pain episode in school; and (4) identify methods to compensate for school absenteeism associated with an SCD diagnosis. Content analysis identified underlying themes. RESULTS: Five themes emerged that highlighted the perceptions and recommendations of children with SCD in the school environment: (1) perceptions that allow students to prevent SCD from limiting their school experience; (2) administrator actions to alleviate challenges associated with SCD; (3) communication about SCD; (4) how SCD interferes with school activities; and (5) ways students advocate for themselves. Students also provided four areas of recommendations for school personnel: (1) ways teachers can help with school activities; (2) make-up work for school absences; (3) empowering students with SCD; and (4) helping with SCD episodes at school. CONCLUSIONS: Students with SCD advocated strongly for their needs at school to attain their education. However, they perceived school personnel to lack knowledge about SCD management. This could be overcome with a handbook specific for teachers of students with SCD that could address each of the five themes.

Sickle cell carriers' unmet information needs: Beyond knowing trait status.

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18-65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.

Identifying Factors Underlying the Decision for Sickle Cell Carrier Screening Among African Americans Within Middle Reproductive Age.

Guidelines recommend that African Americans know their sickle cell trait status to inform reproductive health decisions. Few studies have applied a behavioral theory to identify factors associated with sickle cell trait screening to inform intervention targets to increase this behavior. We applied a Sickle Cell Trait Screening Framework to identify factors associated with African Americans' intention to ask for sickle cell trait screening. Participants (N = 300), ages 18 to 35, completed a cross-sectional survey. A three-step sequential ordinary least squares regression analysis identified factors influencing intention. Results indicated socio-demographic factors (age, education), knowledge and fear beliefs (screening knowledge, perceived threat), and reasoned action approach (RAA) constructs were associated with intention. RAA constructs influenced intention over knowledge and fear beliefs with an increase in R2 of .468. Perceived behavioral control was more predictive of intention (ß = .576, p < .001). Attitude and perceived norm also had significant weights (ß = .325 and ß = .192, both p < .001, respectively). Findings from this study can inform strategies (e.g., eliminating costs associated with screening, reducing fear of painful tests) to increase sickle cell trait screening among African Americans. Ultimately, more sickle cell carriers will become aware of their trait status and be able to make informed reproductive health decisions.

'It means everyone should know their status': exploring lay conceptions of sickle cell trait and sickle cell trait screening among African Americans within middle reproductive age.

OBJECTIVE: This study examined the meaning of sickle cell trait and sickle cell trait screening from the lay perspective of African Americans. DESIGN AND METHODS: African Americans (N = 300), ages 18-35 and unaware of their sickle cell trait status, completed two open-ended questions from a larger survey. One question asked for their understanding of sickle cell trait; the other asked for their understanding of sickle cell trait screening. Content analysis occurred in two phases: (1) In vivo and holistic coding; and (2) focused coding. RESULTS: Four categories emerged illustrating lay conceptions of sickle cell trait; (1) Perceived as an illness; (2) Perceived recognition of the inheritance pattern of sickle cell trait; (3) Perceived lack of knowledge of sickle cell trait; and (4) Perceived importance of sickle cell trait. Five categories emerged illustrating lay conceptions for sickle cell trait screening: (1) Perceived recognition that screening means getting tested for sickle cell trait; (2) Perceived lack of knowledge of sickle cell trait screening; (3) Perceived health benefit of sickle cell trait screening; (4) Perceived importance of sickle cell trait screening; and (5) Perceived barriers to sickle cell trait screening. CONCLUSIONS: Sickle cell trait and sickle cell trait screening are concepts that are both regarded as important among this high-risk population. However, there is still misunderstanding concerning the hereditary nature and reproductive implications of sickle cell trait. Interventions seeking to improve communication on the need for sickle cell trait screening should begin by identifying what the population at large understands, knows and/or believes to improve their ability to make informed health decisions.

Examining the Association Between Health Literacy and Medication Adherence Among Older Adults.

Health literacy plays a vital role in patients' understanding of their prescribed medication instructions. To inform strategies to assist providers in communicating in a manner that is easily understood by patients, it would be beneficial to determine the relationship between health literacy and the day-to-day aspects of medication adherence. This study identified: 1) differences of health literacy levels in medication adherence; 2) the association between health literacy and medication adherence; and 3) and factors associated with medication adherence score. A convenience sample of older predominantly African-American patients (N = 389), over the age of 60, completed a cross-sectional survey. Chi-square analysis assessed health literacy differences in five aspects of medication adherence. Ordinary linear regression analysis determined factors associated with medication adherence score. Patients with limited health literacy were more likely to forget to take their medications and more likely to take less medication than instructed than patients with adequate health literacy (χ2(5) = 15.91, p = .007, χ2(5) = 10.31, p = .036, respectively). REALM score was also significantly associated with medication adherence score (ß= .016, p < .001, ß = .009, p = .033), respectively). Findings suggest that providers seeking to improve medication adherence in older adults, particularly African-American patients, should focus communication on assessing health literacy levels prior to discussing medication instructions.

Correlation Between Personal Health History and Depression Self-Care Practices and Depression Screening Among African Americans With Chronic Conditions.

Little is known about the influence of personal health history and depression self-care practices on screening for depression by health care providers among African Americans with chronic conditions. African Americans (N = 203) aged 18 years or older and living with at least one chronic health condition in a metropolitan city completed a 45-item community perceptions survey. The number of depression symptoms experienced per month was positively associated with screening for depression by a health care provider; perceived ability to identify depression symptoms was inversely associated with screening by a health care provider. Understanding patients' health history and self-care practices can initiate provision of information or support services to improve patient-provider communication about depression.

Adolescent Participation in HPV Vaccine Clinical Trials: Are Parents Willing?

Approximately one-quarter of human papillomavirus (HPV) infections are acquired by adolescents, with a higher burden among racial/ethnic minorities. However, racial/ethnic minorities have been underrepresented in previous HPV vaccine trials. Ongoing and future HPV vaccine optimization trials would benefit from racially- and ethnically-diverse sample of adolescent trial participants. This study examined factors influencing parental willingness to consent to their adolescents' participation in HPV vaccine clinical trials and tested for possible racial differences. A convenience sample of parents of adolescents (N = 256) completed a cross-sectional survey. Chi square analyses were used to assess racial differences in parental HPV vaccine awareness and intentions and willingness to consent to their child participating in an HPV vaccine clinical trial. Ordinal logistic regression was used to identify factors associated with willingness. Approximately 47% of parents were willing to allow their adolescent to participate in HPV vaccine clinical trials (30.7% African American and 48.3% Caucasian, p = .081). African Americans had lower HPV vaccine awareness (p = .006) but not lower intentions to vaccinate (p = .086). Parental willingness was positively associated with the following variables: Child's age (p < .039), Perceived Advantages of HPV Vaccination for Adolescents (p = .002), Parental Trust in Medical Researchers (p < .001), and Level of Ease in Understanding Clinical Trial Information (p = .010). Educating parents about the advantages of HPV vaccines for younger adolescents using low-literacy educational materials and building trust between parents and researchers may increase parental willingness to consent to adolescent participation in HPV vaccine clinical trials.

Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective.

Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.

Exploring Proxy Measures of Mutuality for Strategic Partnership Development: A Case Study.

Partnerships between academic and clinical-based health organizations are becoming increasingly important in improving health outcomes. Mutuality is recognized as a vital component of these partnerships. If partnerships are to achieve mutuality, there is a need to define what it means to partnering organizations. Few studies have described the elements contributing to mutuality, particularly in new relationships between academic and clinical partners. This study seeks to identify how mutuality is expressed and to explore potential proxy measures of mutuality for an alliance consisting of a hospital system and a School of Public Health. Key informant interviews were conducted with faculty and hospital representatives serving on the partnership steering committee. Key informants were asked about perceived events that led to the development of the Alliance; perceived goals, expectations, and outcomes; and current/future roles with the Alliance. Four proxy measures of mutuality for an academic-clinical partnership were identified: policy directives, community beneficence, procurement of human capital, and partnership longevity. Findings can inform the development of tools for assisting in strengthening relationships and ensuring stakeholders' interests align with the mission and goal of the partnership by operationalizing elements necessary to evaluate the progress of the partnership.

Determinants of Child Stunting, Wasting, and Underweight: Evidence from 2017 to 2018 Pakistan Demographic and Health Survey.

Child malnutrition persists in low-resource countries such as Pakistan, indicating an urgent need for interventions and policies aimed to address this critical population health issue. The World Health Organization Global Target 2025 includes the reduction of malnourishment in the form of stunting, wasting, and low weight. This study aims to examine the prevalence of factors associated with three measures of child malnutrition, i.e., stunting, wasting, and low weight in Pakistan. This study uses a secondary data analysis design based on data from Pakistan Demographic and Health Survey (2017-18) that used a two-stage cluster sampling approach. National level data covering urban and rural areas were used for this study consisting of 4,226 children less than 5 years of age. Univariate and multivariable analyses using logistic regression models were conducted. Over 23% of the children were underweight, 8.0% suffered wasting, and 37.7% were stunted. Children with small size at birth (<45.7 cm), those who were average in size (45.7 to 60 cm) at birth were less likely to be stunted (AOR, 0.4890) and underweight (AOR, 0.538). Children with large size at birth (>60 cm) were also less likely to be stunted (AOR, 0.288) and underweight (AOR, 0.538). Children who consumed fresh milk were less likely to be classified as wasted (AOR, 0.524) than those children who did not consume fresh milk. The children in high- and middle-economic status families were less likely to be stunted, underweight, or wasted. Children of mothers who had secondary and higher education were less likely to be stunted (AOR, 0.584) and were less likely to be underweight (AOR, 0.668) than illiterate mothers' children. Children of working mothers were less likely to be wasted compared to children of nonworking mothers (AOR, 0.287). Maternal BMI is also inversely associated with being underweight because overweight and obese mothers were less likely to have underweight children (AOR, 0.585). Our findings reflect a need to design targeted public health policies and community-based education that emphasize the mother's education on nutrition health and provide socioeconomic resources that enable mothers to provide dietary needs that prevent malnutrition.

Parental Knowledge and Perceptions on Prevention of Sudden Unexpected Infant Death and Infant Care.

(1) Background: The study's purpose was to explore the knowledge, perceptions, and confidence of mothers about infant care to reduce the risk of sudden unexpected infant death. (2) Methods: A purposeful sampling method was used to recruit 15 first-time mothers from Georgia with infants under 1 year of age. The researchers utilized the Socio-ecological model to report the results. Participants also provided recommendations on how to improve infant care and reduce the risk of SUID. (3) Results: The confidence level of infant care among most participants was low but increased over time. Mothers' knowledge level about the prevention of SUID was high, but poor emotional health could hurt their parental abilities. Most participants recognized medical providers as the main source of reliable information. However, a lack of emotional and physical support was reported by mothers. (4) Conclusions: Results suggested that a more holistic approach to infant care is needed. The healthcare system and communities should provide more physical, social, and mental support to first-time mothers, a consolidated approach to care before and after birth, and easy access to services at all stages of the process to reduce the risk of SUID.

A multiperspective on the broad dissemination of research findings to past research participants and the community-at-large.

Dissemination of research findings to past research participants and the community-at-large is a critical element to improving health outcomes, yet it is often overlooked by researchers. Few studies have explored how to provide study findings to the community, and no studies have investigated how community members can be involved in this process. This study explored views on the broad dissemination of research findings to community members and the role of the community in the dissemination process. We conducted a comparative analysis from the perspective of researchers, community members, and program officers (POs) from national health research funding agencies. Semistructured interviews were conducted with community members (African American, N = 10; Latino, N = 10), academic researchers (N = 10), and POs (N = 5). Thematic analysis was utilized in which codes and themes were created. One cross-cutting theme was identified, Views on Disseminating Research Findings to Communities. There were three additional themes identified among community members, five among researchers, and four among POs. All groups perceived the value of dissemination to communities as meaningful and ethical. Groups differed in their perceptions of prioritization of dissemination audiences. This study highlighted consensus on the value of broad dissemination to the community-at-large and identified areas of insufficiency in the translational research continuum that could be expanded or improved to ensure targeted groups receive the intended benefits of positive research findings. The long-term benefit of disseminating findings to the community-at-large is increased acceptability of interventions and reduced mistrust in research and researchers.

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study.

BACKGROUND: Individuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. OBJECTIVE: This study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. METHODS: Five community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. RESULTS: Seven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. CONCLUSIONS: This study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities.

Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model.

Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research.