The association of caregiver attitudes, information sources, and trust with HPV vaccine initiation among adolescents.

This study described caregiver attitudes and the information sources they access about HPV vaccination for adolescents and determined their influence on human papillomavirus (HPV) vaccination initiation. An online survey was administered to 1,016 adults in July 2021. Participants were eligible if they were the caregiver of a child aged 9-17 residing in Mississippi, Arkansas, Tennessee, Missouri, and select counties in Southern Illinois. Multivariate logistic regression was used to estimate the association of caregiver attitudes and information sources with HPV vaccination. Information from doctors or healthcare providers (87.4%) and internet sources other than social media (31.0%) were the most used sources for HPV vaccine information. The highest proportion of caregivers trusted their doctor or healthcare providers (92.4%) and family or friends (68.5%) as sources of information. The HPV vaccine series was more likely to be initiated in children whose caregivers agreed that the vaccine is beneficial (AOR = 4.39, 95% CI = 2.05, 9.39), but less likely with caregivers who were concerned about side effects (AOR = 0.61, 95% CI = 0.42, 0.88) and who received HPV vaccination information from family or friends (AOR = 0.57, 95% CI = 0.35, 0.93). This study found that caregivers' attitudes, information sources, and trust in those sources were associated with their adolescent's HPV vaccination status. These findings highlight the need to address attitudes and information sources and suggest that tailored interventions considering these factors could increase HPV vaccination rates.

Understanding disruptions in cancer care to reduce increased cancer burden.

Background: This study seeks to understand how and for whom COVID-19 disrupted cancer care to understand the potential for cancer health disparities across the cancer prevention and control continuum. Methods: In this cross-sectional study, participants age 30+residing in an 82-county region in Missouri and Illinois completed an online survey from June-August 2020. Descriptive statistics were calculated for all variables separately and by care disruption status. Logistic regression modeling was conducted to determine the correlates of care disruption. Results: Participants (N=680) reported 21% to 57% of cancer screening or treatment appointments were canceled/postponed from March 2020 through the end of 2020. Approximately 34% of residents stated they would need to know if their doctor's office is taking the appropriate COVID-related safety precautions to return to care. Higher education (OR = 1.26, 95% CI:1.11-1.43), identifying as female (OR = 1.60, 95% CI:1.12-2.30), experiencing more discrimination in healthcare settings (OR = 1.40, 95% CI:1.13-1.72), and having scheduled a telehealth appointment (OR = 1.51, 95% CI:1.07-2.15) were associated with higher odds of care disruption. Factors associated with care disruption were not consistent across races. Higher odds of care disruption for White residents were associated with higher education, female identity, older age, and having scheduled a telehealth appointment, while higher odds of care disruption for Black residents were associated only with higher education. Conclusions: This study provides an understanding of the factors associated with cancer care disruption and what patients need to return to care. Results may inform outreach and engagement strategies to reduce delayed cancer screenings and encourage returning to cancer care. Funding: This study was supported by the National Cancer Institute's Administrative Supplements for P30 Cancer Center Support Grants (P30CA091842-18S2 and P30CA091842-19S4). Kia L. Davis, Lisa Klesges, Sarah Humble, and Bettina Drake were supported by the National Cancer Institute's P50CA244431 and Kia L. Davis was also supported by the Breast Cancer Research Foundation. Callie Walsh-Bailey was supported by NIMHD T37 MD014218. The content does not necessarily represent the official view of these funding agencies and is solely the responsibility of the authors.

Racial Variation in the Association Between Domains of Depressive Symptomatology and Functional Recovery in Stroke Survivors.

OBJECTIVE: The purpose of the study was to investigate the relationships between various domains of depressive symptomatology and functional recovery in Black and White stroke survivors. METHODS: Black (n = 181) and White (n = 797) stroke survivors from the Stroke Recovery in Underserved Population database were included. Four domains of depressive symptomatology (depressed affect, positive affect, somatic symptoms, interpersonal difficulties) were measured by the Center for Epidemiologic Studies Depression Scale at discharge; functional recovery was measured by the Functional Independence Measure at discharge and 3-month follow-up. Multivariable linear regression analyses examined the relation between race and functional recovery, and the association between depressive symptomatology and functional recovery by race. RESULTS: Three-month functional recovery was greater among White stroke survivors than Black survivors. Affective symptoms of depression predicted poorer functional recovery of White survivors; whereas somatic symptoms predicted poorer functional recovery of Black survivors. CONCLUSIONS: Domains of depressive symptomatology were differentially associated with poorer functional recovery in Black and White stroke survivors. Psychosocial interventions aimed at alleviating depressive symptomatology have the potential to improve functional recovery in Black and White stroke survivors and should be addressed in planning rehabilitation post-stroke.

Construct validation of the Research Engagement Survey Tool (REST).

BACKGROUND: The Research Engagement Survey Tool (REST) was developed to examine the level of partner (e.g., patients, caregivers, advocates, clinicians, community members) engagement in research studies. The REST is aligned with eight engagement principles based on the literature and consensus reached through a five round Delphi process. Each of the engagement principles has three-five corresponding items that are assessed on two Likert type scales quantity (how often: never, rarely, sometimes, often, always, not applicable) and quality (how well: poor, fair, good, very good, excellent, not applicable). We conducted a comprehensive validation of the REST. Despite the importance of partner engagement in research, currently no gold standard measure exists. METHODS: Multiple strategies were employed to validate the REST. Here, we examine the internal consistency of items for each of the eight engagement principles. In addition, we examine the convergent validity of the comprehensive (32-item) REST with other measures (e.g., medical mistrust, Community Engagement in Research Index, Partnership Self-Assessment Tool, Wilder collaboration inventory, Partnership Assessment In community-based Research). We propose two scoring approaches for the REST; one aligned with the engagement principles and the other aligned with levels of community engagement: (1) outreach and education, (2) consultation, (3) cooperation, (4) collaboration, and (5) partnership. RESULTS: The REST has strong internal consistency (Cronbach's alpha > 0.75) for each of the eight engagement principals measured on both scales (quality and quantity). The REST had negligible (e.g., medical mistrust, community engagement in research index), low (e.g., Partnership Assessment In community-based Research, Partnership Self-Assessment Tool- benefits scale), and moderate (e.g., Wilder collaboration inventory, Partnership Self-Assessment Tool- synergy scale) statistically significant correlations with other measures based on the Spearman rank correlation coefficient. These results suggest the REST is measuring something similar and correlated to the existing measures, but it captures a different construct (perceived research engagement). CONCLUSIONS: The REST is a valid and reliable tool to assess research engagement of community health stakeholders in the research process. Valid tools to assess research engagement are necessary to examine the impact of engagement on the scientific process and scientific discovery and move the field of stakeholder engagement from best practices and lessons learned to evidence-based approaches based on empirical data.

Researchers often conduct studies with partners (e.g., patients, caregivers, advocates, clinicians, community members) who also have an interest in the research topic. Depending on the research study the level of partner engagement in the research process may be high or low. Partners may be involved from the beginning including determining what topic to study and what questions the study should examine. They may suggest who should be included in the study, the geographic area of focus, and the outcome measures to be examined. In addition, they may help recruit study participants, interpret study results, and plan for how to share the results with those that need to know. No standard way exists to find out how involved a partner has been in a study from the partner's perspective. Here we develop and validate survey questions to measure the level of partner engagement in research studies. We looked at existing survey questions used to measure similar topics to make sure that a person who takes the survey gets consistent scores. We tested the survey with community health stakeholders (e.g., patients, caregivers, advocates, clinicians, community members) who are research partners for studies at universities across the United States. Over 2 years, the partners took different versions of the survey online four times. We used the data we collected from each survey to revise the questions and make sure that it measures partner involvement accurately and reliably. The Research Engagement Survey Tool (REST) has 32 questions to examine eight engagement principles on two scales: quantity (how much) and quality (how well). The REST is a valid and reliable tool to examine partner engagement in research.

Strategies of community engagement in research: definitions and classifications.

Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health- and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient- and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.

The science of stakeholder engagement in research: classification, implementation, and evaluation.

In this commentary, we discuss the science of stakeholder engagement in research. We propose a classification system with definitions to determine where projects lie on the stakeholder engagement continuum. We discuss the key elements of implementation and evaluation of stakeholder engagement in research posing key questions to consider when doing this work. We commend and critique the work of Hamilton et al. in their multilevel stakeholder engagement in a VA implementation trial of evidence-based quality improvement in women's health primary care. We also discuss the need for more work in this area to enhance the science of stakeholder engagement in research.

Increasing Community Research Capacity to Address Health Disparities.

The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants' knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health-related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.

EVALUATING COMMUNITY ENGAGEMENT IN RESEARCH: QUANTITATIVE MEASURE DEVELOPMENT.

Although the importance of community engagement in research has been previously established, there are few evidence-based approaches for measuring the level of community engagement in research projects. A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature. The measure has 96 Likert response items; 3-5 quality items and 3-5 quantity items measure each EP. Cronbach's alpha is used to examine the internal consistency of items that measure a single EP. Every EP item group had a Cronbach's alpha > .85, which indicates strong internal consistency for all question groups across both scales (quality and quantity). This information determines the level of community engagement, which can be correlated with other research outcomes.

Examining Interpretations of Graphic Cigarette Warning Labels Among U.S. Youth and Adults.

Few studies have examined how diverse populations interpret warning labels. This study examined interpretations of 9 graphic cigarette warning labels (image plus text) proposed by the U.S. Food and Drug Administration among a convenience sample of youth (ages 13-17) and adults (18+) across the United States. Participants (N = 1,571) completed a cross-sectional survey. Participants were asked to select 1 of 3 plausible interpretations (1 preferred vs. 2 alternative) created by the research team about the particular consequence of smoking addressed in each warning label. Participants also rated each label for novelty, counterarguing, perceived effectiveness, and harm. Smokers reported their thoughts of quitting, self-efficacy, and motivation to quit. Although at least 70% of the sample chose the preferred interpretation for 7 of 9 labels, only 13% of participants chose all 9 preferred interpretations. The odds of selecting the preferred interpretation were lower among African Americans, among those with less education, and for labels perceived as being more novel. Smokers reported greater counterarguing and less perceived effectiveness and harms than nonsmokers, but results were not consistent across all labels and interpretations. The alternative interpretations of cigarette warning labels were associated with lower perceived effectiveness and lower perceived harms of smoking, both of which are important for motivating quit attempts.

Perceptions of the US National Tobacco Quitline Among Adolescents and Adults: A Qualitative Study, 2012-2013.

INTRODUCTION: Tobacco quitlines are critical components of comprehensive tobacco control programs. However, use of the US National Tobacco Quitline (1-800-QUIT-NOW) is low. Promoting quitlines on cigarette warning labels may increase call volume and smoking cessation rates but only if smokers are aware of, and receptive to, quitline services. METHODS: We conducted qualitative interviews with a diverse subset (n = 159) of adolescent (14-17 y) and adult (≥18 y) participants of a larger quantitative survey about graphic cigarette warning labels (N = 1,590). A convenience sample was recruited from schools and community organizations in 6 states. Interviews lasted 30 to 45 minutes and included questions to assess basic knowledge and perceptions of the quitline number printed on the warning labels. Data were analyzed using content analysis. RESULTS: Four themes were identified: available services, caller characteristics, quitline service provider characteristics, and logistics. Participants were generally knowledgeable about quitline services, including the provision of telephone-based counseling. However, some adolescents believed that quitlines provide referrals to "rehab." Quitline callers are perceived as highly motivated - even desperate - to quit. Few smokers were interested in calling the quitline, but some indicated that they might call if they were unable to quit independently. It was generally recognized that quitline services are or should be free, confidential, and operated by governmental or nonprofit agencies, possibly using tobacco settlement funds. CONCLUSION: Future marketing efforts should raise awareness of the nature and benefits of quitline services to increase use of these services and, consequently, reduce tobacco use, improve public health, and reduce tobacco-related health disparities.

A Tale of Two Community Networks Program Centers: Operationalizing and Assessing CBPR Principles and Evaluating Partnership Outcomes.

BACKGROUND: Community Networks Program (CNP) centers are required to use a community-based participatory research (CBPR) approach within their specific priority communities. Not all communities are the same and unique contextual factors and collaborators' priorities shape each CBPR partnership. There are also established CBPR and community engagement (CE) principles shown to lead to quality CBPR in any community. However, operationalizing and assessing CBPR principles and partnership outcomes to understand the conditions and processes in CBPR that lead to achieving program and project level goals is relatively new in the science of CBPR. OBJECTIVES: We sought to describe the development of surveys on adherence to and implementation of CBPR/CE principles at two CNP centers and examine commonalities and differences in program-versus project-level CBPR evaluation. METHODS: A case study about the development and application of CBPR/CE principles for the Missouri CNP, Program for the Elimination of Cancer Disparities, and Minnesota CNP, Padres Informados/Jovenes Preparados, surveys was conducted to compare project versus program operationalization of principles. Survey participant demographics were provided by CNP. Specific domains found in CBPR/CE principles were identified and organized under an existing framework to establish a common ground. Operational definitions and the number of survey items were provided for each domain by CNP. CONCLUSION: There are distinct differences in operational definitions of CBPR/CE principles at the program and project levels of evaluation. However, commonalities support further research to develop standards for CBPR evaluation across partnerships and at the program and project levels.

Use of culturally focused theoretical frameworks for adapting diabetes prevention programs: a qualitative review.

INTRODUCTION: Diabetes disproportionately affects underserved racial/ethnic groups in the United States. Diabetes prevention interventions positively influence health; however, further evaluation is necessary to determine what role culture plays in effective programming. We report on the status of research that examines cultural adaptations of diabetes prevention programs. METHODS: We conducted database searches in March and April 2014. We included studies that were conducted in the United States and that focused on diabetes prevention among African Americans, American Indians/Alaska Natives, Asian Americans/Pacific Islanders, and Latinos. RESULTS: A total of 58 studies were identified for review; 29 were excluded from evaluation. Few adaptations referenced or followed recommendations for cultural adaptation nor did they justify the content modifications by providing a rationale or evidence. Cultural elements unique to racial/ethnic populations were not assessed. CONCLUSION: Future cultural adaptations should use recommended processes to ensure that culture's role in diabetes prevention-related behavioral changes contributes to research.

Factors affecting African American men's use of online colorectal cancer education.

Colorectal cancer (CRC) incidence rates have decreased due to the increased use of CRC screenings that permit the detection and removal of polyps. However, CRC is still the second most common cause of cancer death among men ages 40 to 79 years; incidence and mortality rates for CRC are higher among African American (AA) men than among white men and AA women. CRC screening rates for AA men are comparable to their counterparts of other racial groups, but adherence to the screening guidelines is less, contributing to disparities in CRC mortality. Internet use is widespread and could be a channel to reach and disseminate health information to AA men; however, there are disparities in Internet use, and limited literature exists on how to best address this divide. This pilot project sought to understand African American male attitudes on colorectal cancer screening (CRCS), receipt of CRCS information, and the best strategy to provide African American men online CRCS education. Three focus groups and a feasibility trial were completed with African American men, ages of 45 to 75. Data suggest that disseminating information online is not a very effective way to reach older African American men with limited education. Although we do not recommend using websites among this population, email was more effective in getting participants to the website even though participants expressed a preference for phone messages. Recommendations for future research are provided.

Refining the use of cancer-related cultural constructs with African Americans.

An important step in using culture to increase colorectal cancer screening is the development and use of a reliable and valid measure. Measurement items that work well are defined as those that use clear and simple language, do not result in significant missing data, do not yield unexpected frequencies or patterns of association, and capture an important component of the underlying construct. The authors' work to develop such a measure includes cognitive response testing. This article describes 41 African American participants' reactions to and processing of items that have been used in the public health literature to assess cultural attitudes believed to be relevant to colorectal cancer screening. Participants were asked to verbalize thoughts, feelings, interpretations, and ideas that came to mind while examining or responding to 10 to 11 survey items. The results of cognitive response testing suggest negative reactions to items addressing the fatalism construct, concerns about appearing racist when responding to discrimination and mistrust items, and resistance to phrasing or terminology that conveys negative attitudes or frames of reference. When items were framed in a positive way, participants reported less frustration, confusion, and concern for how they would be perceived by others. The responses of older African Americans in this sample were consistent with research previously completed by Pasick et al.; participants questioned the relevance of items related to cultural constructs to health and cancer preventive behaviors. Recommendations for the assessment and use of cultural constructs and items assessing constructs are provided.

Making decisions in a complex information environment: evidential preference and information we trust.

BACKGROUND: Informed decision making requires that those individuals making health and health-care decisions understand the advantages and disadvantages associated with particular health options. Research and theory suggest factors that contribute to the decision-making process: data on the likelihood of risks and benefits, level of certainty about outcomes, familiarity with the health issue, characteristics of information sources and presentation, and patient values and beliefs. As the health information environment increases in complexity, it becomes important to understand how interactions among information sources, family, and friends may affect the processing of health information and choices and their alignment with available evidence. ANALYSIS: This paper discusses the potential interactions among social networks, information sources and evidential preferences for health information as they influence health decisions. The role of family and friends who increasingly search for health information for others and the potential for information filtering influenced by second- or third-party attitudes and preferences is explored. Evidential preferences suggestive of the potential value of social math (creatively presented statistics) strategies for presenting data, the information-processing factors that may make personal experiences, anecdotes and testimonials that are often shared within social networks and may exert powerful influences on health decisions are examined in this article. CONCLUSIONS: The paper concludes with recommendations for revised health-communication practices, health professional training to improve patient understanding in the clinical encounter, and directions for future research. Simple, direct, and socially relevant communications that avoid conflicts with the values and beliefs of the individual, as well as those of the family and social network, are recommended.

African American parents' HPV vaccination intent and concerns.

This study describes attitudes and social and environmental factors that affect African American parents' intent to vaccinate their daughters against human papillomavirus (HPV). Thirty African American parents of daughters aged nine to 17 years and no history of HPV infection completed semi-structured interviews. Interviews addressed factors that influenced intent to vaccinate, perception of community norms related to vaccination, vaccination scenarios involving place of vaccination, and vaccination prior to or after the child's initiation of sexual activity. A recurring theme was the influence of physician recommendation on African American parents' intent to obtain HPV vaccination for their daughters. Most parents reported that they could overcome barriers to vaccination, except vaccine costs and lack of insurance. While religious beliefs were important to parents, they reported that they would not interfere with vaccination decisions; fears of early sexuality due to vaccination were limited. The implications of these findings are discussed.

The use of sociocultural constructs in cancer screening research among African Americans.

BACKGROUND: Studies are increasingly examining the role of sociocultural values, beliefs, and attitudes in cancer prevention. However, these studies vary widely in how sociocultural constructs are defined and measured, how they are conceived as affecting cancer beliefs, behaviors, and screening, and how they are applied in interventions. METHODS: To characterize the current state of this research literature, we conducted a critical review of studies published between 1990 and 2006 to describe the current use of sociocultural constructs in cancer screening research among African Americans. We included quantitative and qualitative studies with cancer as a primary focus that included African American participants, assessed screening behaviors, reported race-specific analyses, and considered one or more sociocultural factors. Studies were evaluated for type of cancer and screening analyzed, study population, methodology, sociocultural constructs considered, definitions of constructs, provision of psychometric data for measures, and journal characteristics. RESULTS: Of 94 studies identified for review, 35 met the inclusion criteria and were evaluated. Most focused on breast cancer screening, and thus African American women. Sociocultural constructs were seldom clearly defined, and the sources and psychometric properties of sociocultural measures were rarely reported. CONCLUSIONS: A multidisciplinary approach to developing a common language and a standardized set of measures for sociocultural constructs will advance research in this area. Specific recommendations are made for future research.

African American men's perceptions of factors influencing health-information seeking.

The lack of health information is one of several factors implicated in the poor health status of African American men. Although a growing body of research delineates the obstacles to African Americans' engagement in preventive health behaviors, relatively little is known about the barriers that adversely affect men's involvement in health-information seeking. This article presents qualitative data on African American men's information seeking through an analysis of focus group data. Three research questions are addressed: (a) What health-information concerns and needs do African American men have? (b) How do African American men describe their efforts to obtain health information? and (c) What factors facilitate or inhibit health-information seeking by African American men? The implications of the data and suggestions for future research are provided.