Conducting a Community "Street Survey" to Inform an Obesity Intervention: The WE Project.

Using a community-based participatory research approach, a citywide survey was conducted to explore perceptions of obesity and interventions to reduce obesity within an African American urban community. More than 1300 surveys were collected within 3 months; 92.9% of respondents agreed or strongly agreed that obesity was an important health issue in the community and the majority indicated that family-based interventions were the preferred pathway for improving physical activity (86.0%) and nutrition (85.2%). Engaging community members in survey development and implementation was an effective approach to build local research capacity and establish a shared agenda of reaching a diverse sample of community residents.

Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx).

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one's whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.

Lifestyle risk factor related disparities in oral cancer examination in the U.S: a population-based cross-sectional study.

BACKGROUND: Oral cancers account for 3% of annual U.S. cancer diagnosis, 2 in 5 of which are diagnosed late when prognosis is poor. The purpose of this study was to report the population-level prevalence of oral cancer examination among adult smokers and alcohol drinkers and assess if these modifiable lifestyle factors are associated with receiving an oral cancer examination. METHODS: Adult participants ≥30 years (n = 9374) of the 2013-2016 cycles of the National Health and Nutrition Examination Survey were included. Oral cancer examination (yes/no), smoking (never, former, current) and alcohol use (abstainers, former, current) were self-reported. Survey-logistic regression estimated odds ratios (OR) and 95% confidence intervals (CIs) of ever and past year oral cancer examination adjusted for age, gender, race/ethnicity, education, income, and time since last dental visit. RESULTS: One third (33%) reported ever been examined for oral cancer, 66% of whom reported an examination in the past year. Adjusted OR (95% CI) of past year examination comparing current and former smokers to non-smokers were 0.51 (0.29, 0.88) and 0.74 (0.53, 1.04) respectively. Similarly, current and former alcohol drinkers relative to abstainers were less likely to report a past year oral cancer examination, OR (95% CI) = 0.84 (0.53, 1.30) and 0.50 (0.30, 0.83) respectively. CONCLUSION: This study showed that smokers and alcohol users were less likely than abstainers to self-report a past year oral cancer examination. Access to affordable and targeted oral cancer examination within the dental care setting might ensure that these high-risk individuals get timely examinations and earlier diagnosis that might improve prognosis and survival.

Authorization of tissues from deceased patients for genetic research.

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

Impact of Cognitive Load on Family Decision Makers' Recall and Understanding of Donation Requests for the Genotype-Tissue Expression (GTEx) Project.

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics. We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions.

Family decision maker perspectives on the return of genetic results in biobanking research.

PURPOSE: There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants. METHODS: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55). RESULTS: Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them. CONCLUSION: FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82-88.

Upward communication about cancer screening: adolescent daughter to mother.

Substantial breast and cervical cancer disparities exist in the United States, particularly among African American women with low socioeconomic status. There is considerable potential for discussions about cancer prevention between mothers and daughters. However, upward communication, from child to parent, remains a relatively novel research area, and it remains unclear how receptive mothers would be to messages from their daughter about cancer, a topic that may be considered culturally inappropriate for daughters to initiate. In this study, the authors simulated cancer message delivery to daughters and then conducted direct observation of daughters as they recalled and shared the message with their mother or female elder. The authors found that daughters were able to successfully recall and deliver a cancer appeal to their mother and mothers were generally receptive to this message. Not only did mothers listen to their daughters' appeals, but also daughters' knowledge of cancer was considerably improved by the opportunity to educate her female elder. Moreover, daughters' nonverbal communication suggested a surprisingly relaxed demeanor. The potential of young people to have an effect on the screening behavior of their female elders is very promising in terms of reducing cancer disparities.

Community perceptions and utilization of a consumer health center.

The purpose of this study was to understand factors that may affect the usage of a consumer health center located in a public library. More specifically, the authors wanted to know what health resources are of interest to the community, what patrons' perceptions of their experience at the center are, and finally, how staff can increase utilization of the center. In general, perceptions of the center were positive. The findings support that participants appreciate efforts to provide health information in the public library setting and that utilization could be improved through marketing and outreach.

South African, urban youth narratives: Resilience within community.

South African youth in low-income, urbanized communities are exposed to high levels of daily stressors, which increase their risk to negative outcomes. Resiliency can provide avenues for youth to transcend adversity and may contribute to their positive development. To provide a deeper understanding of the pathways that adolescents use to overcome adversity, this paper examined future aspirations of South African youth, and how these aspirations were connected to resiliency factors framed by their lived context. A phenomenological approach was used to explore the perceptions of high school students. Fourteen focus groups with girls and boys (N=112) were conducted. Data was analyzed using a thematic approach. Discussions of the harsh conditions undermining the community's future highlighted opportunities for improvement. Community connectedness, hope and altruism were prevalent in youth's responses and could be used to facilitate community and individual resiliency. Our overall findings have important implications for positive youth development efforts.

From adolescent daughter to mother: exploring message design strategies for breast and cervical cancer prevention and screening.

Early detection of breast and cervical cancers is one preventive behavior that may provide the adolescent daughter with a unique opportunity to provide encouragement to her mother or guardian to obtain screening. This study explored the design strategies necessary for developing an effective daughter-initiated message about screening for breast and cervical cancers. Thirty-two (N = 64) African-American mother-daughter dyads were interviewed about parenting style, goodwill, and daughters' credibility and risk behaviors that might influence receptivity toward a screening appeal. Mothers indicated that a tailored, emotional appeal combined with cancer facts delivered in a private setting would be most effective. Daughters were perceived as highly credible messengers and were perceived to have high levels of goodwill toward their mothers, regardless of risk behaviors.

Health promotion and cervical cancer in South Africa: why adolescent daughters can teach their mothers about early detection.

The notion that adolescent daughters can provide their mothers with health information that could actually impact the mothers' behavior is a novel area of health promotion research. The goal of this study is to explore the reasons why adolescent daughters would give their mothers cervical cancer information, and why mothers would have the intent to listen to advice to obtain a Pap smear. We randomly selected and interviewed 157 mother and daughter dyads in Cape Town, South Africa. Almost one-fourth of mothers (22%) indicated never having had a Pap smear, while 92% of their daughters said their mother has never talked to them about cervical cancer or a Pap smear. Willingness of daughters to ask their mothers to obtain a Pap smear was high (80%). Motivations included the important health benefit and the sense of responsibility to share life saving information. Most mothers said they would definitely obtain a Pap smear when advised by their daughter (74%), while 25% said they would have to think about it and 1% said they would not listen. Mothers' main motivations included the direct health benefit and a strong sense of duty and responsibility to listen to her daughter. This study provides important information about the reasons why an upward (child to parent) health intervention may be feasible. The values of duty and responsibility, especially as it manifests within the family, hold promise for informing health promotion interventions directed at multiple generations.

Opportunities to reduce cancer barriers: community town halls and provider focus groups.

This paper presents the findings from town hall meetings held with community residents and focus groups with health care providers. A total of five town halls (N = 139) were conducted. Four were conducted in English and a fifth was conducted in Spanish to obtain the input of the local Hispanic community. Surveys were provided to town hall participants to assess their perceptions of cancer and screening as well as their cancer screening behaviors. Participants were asked questions designed to determine local gaps and needs in health and cancer care, and their attitudes regarding breast cancer resources, education, treatment, and clinical trials. Additionally, four focus groups (N = 45) were held with a wide range of providers to obtain their perspectives on barriers to breast cancer screening, local cancer prevention and care, and clinical trials. Results indicate gaps in local resources and support services, particularly in terms of education and integrated care.

Religiosity and COVID-19: Impact on Use of Remote Worship and Changes in Self-Reported Social Support.

Objective: This study examines associations between changes in the use of remote worship services and changes in the types of social support among religious adults during the COVID-19 pandemic. Materials and Methods: Cross-sectional, web survey data (n = 461; 15 May to 6 July 2020) were collected during the COVID-19 pandemic. Multinomial logistic regression models calculated unadjusted odds of increases and decreases of three types of perceived social support from before to during COVID-19 based on remote worship use. Results: Adults who initiated use of remote worship had lower odds of gaining social support for personal problems (OR: 0.38; 95% CI: 0.19, 0.79) and greater odds of reporting less ease of getting practical help from neighbors (OR: 1.77; 95% CI: 1.04, 3.02) compared to adults who never used or stopped using remote worship. Adults who continued using remote worship services were more likely to report less ease of getting practical help from their neighbors (OR: 2.23; 95% CI: 1.17, 4.25) and decreased interest and concern felt from other people (OR: 2.62; 95% CI: 1.24, 5.51) than adults who never used or stopped using remote worship. Conclusions: Adults who initiated and continued using remote worship during the COVID-19 pandemic had poorer perceived social support outcomes relative to adults who never used or stopped using remote services. Despite continued engagement with their religious communities, adults participating in worship remotely may have had residual personal, emotional, and instrumental social support needs that remote worship did not mitigate.

Needs of low-income african american cancer survivors: multifaceted and practical.

This study aimed to identify the needs of low-income, African American cancer survivors in an urban setting. Data were collected from semi-structured interviews conducted with cancer survivors (n = 12), caregivers (n = 10), professionals (n = 10), and surveys from town hall meetings (n = 80). The major needs identified, across all groups, included a diverse array of practical needs including transportation, financial and job assistance, childcare, self-care assistance, more education and lifestyle information when diagnosed as well as after diagnosis, better post treatment plan, and more need for social support. They identified the ideal resource center as being located within the survivor's neighborhood and would provide a range of medically specific support as well as recreational services. Being of limited economic means has a host of implications for those diagnosed with cancer and for their family members. Participants suggested that needs for cancer survivors have to take into account a complexity of factors including culture, family, and especially economic implications.

Getting personal: ethics and identity in global health research.

'Researcher identity' affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen's (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns.

Translating evidence-based behavioral weight loss into a multi-level, community intervention within a community-based participatory research framework: the Wellness Engagement (WE) Project.

Black Americans and individuals from economically disadvantaged backgrounds are at disproportionate risk for obesity, yet are underrepresented in behavioral weight loss (BWL) trials and experience less benefit from traditional programs. The Wellness Engagement (WE) Project sought to translate evidence-based BWL within a CBPR framework to promote change across multiple domains of influence in an under-resourced, predominantly Black community. The purpose of this paper is to describe the efforts we undertook to translate data from our extensive formative phase into programming well suited to meet the needs of the Petersburg community. In addition, we present data from our pilot work on feasibility and acceptability. Formative data were collected using a variety of methods including a community-wide survey, asset mapping, house chats, focus groups, and key informant interviews. In collaboration with key stakeholders and community members, evidence-based approaches to weight loss were adapted to meet the needs of the community with respect to both content and delivery modality. Materials were adapted to focus on small, realistic changes appropriate for the specific context. Behavioral groups, experiential nutrition and exercise sessions, and walking groups leveraged existing assets and were open to all community members. Feasibility and acceptability ratings were promising. Furthermore, the WE Project appeared to contribute to a culture of wellness. CBPR might be a viable approach for engaging under-resourced Black communities in behavioral weight management; larger scale implementation and evaluation efforts are needed.

SARS-CoV-2 Vaccine Hesitancy in a Sample of US Adults: Role of Perceived Satisfaction With Health, Access to Healthcare, and Attention to COVID-19 News.

Understanding which communities are most likely to be vaccine hesitant is necessary to increase vaccination rates to control the spread of SARS-CoV-2. This cross-sectional survey of adults (n = 501) from three cities in the United States (Miami, FL, New York City, NY, San Francisco, CA) assessed the role of satisfaction with health and healthcare access and consumption of COVID-19 news, previously un-studied variables related to vaccine hesitancy. Multilevel logistic regression tested the relationship between vaccine hesitancy and study variables. Thirteen percent indicated they would not get vaccinated. Black race (OR 2.6; 95% CI: 1.38-5.3), income (OR = 0.64; 95% CI: 0.50-0.83), inattention to COVID-19 news (OR = 1.6; 95% CI: 1.1-2.5), satisfaction with health (OR 0.72; 95% CI: 0.52-0.99), and healthcare access (OR = 1.7; 95% CI: 1.2-2.7) were associated with vaccine hesitancy. Public health officials should consider these variables when designing public health communication about the vaccine to ensure better uptake.

A descriptive pilot study of the immediate impacts of COVID-19 on dental and dental hygiene students' readiness and wellness.

BACKGROUND: The ongoing novel coronavirus disease 2019 (COVID-19) pandemic has impacted dental students training across the U.S. academic dental institutions by moving classroom instruction to an online modality, limiting patient care, canceling external rotations, and rescheduling of licensure examinations. OBJECTIVE: The aim of this study was to assess the immediate impacts of COVID-19 on students' readiness to enter clinical practice or residency and its association with well-being (anxiety, perceived stress, coping and social support, and resilience). METHODS: An online REDCap survey was distributed to 407 D1-D4 year dental students and 29 DH3-DH4 year dental hygiene students enrolled at a U.S. dental school. The survey consisted of readiness and wellness measures as well as socio-demographic variables. RESULTS: Overall response rate was 58% (N = 252) ranging from 40% among D4 students to 72% among D1 students. About half (55%) of the respondents were White, a third (34%) Asians and 5% were African Americans. Ninety-two percent were non-Hispanics while 62% were female. Overall mean (SD) anxiety score was 6.5 (5.3) and 26% of respondents reported moderate or severe levels of anxiety. Anxiety score differed significantly by gender with females reporting higher anxiety levels, mean (SD) = 7.3 (5.5) versus 5.2 (4.7) for males; P = 0.002). Furthermore, mean anxiety score differed significantly among the dental school classes, ranging from 5.5 (5.3) among D2 students to 11.8 (6.2) in DH4 students (P = 0.02). CONCLUSION: Academic dental institutions need to be responsive to the heightened anxiety and uncertainly levels of students and provide responsive training and support to mitigate its effects.

Community members as recruiters of human subjects: ethical considerations.

Few studies have considered in detail the ethical issues surrounding research in which investigators ask community members to engage in research subject recruitment within their own communities. Peer-driven recruitment (PDR) and its variants are useful for accessing and including certain populations in research, but also have the potential to undermine the ethical and scientific integrity of community-based research. This paper examines the ethical implications of utilizing community members as recruiters of human subjects in the context of PDR, as well as the authors' experience with a variant of PDR in a research project in South Africa. The importance of situating PDR in a comprehensive community engagement process that is responsive to the constraints of science and local needs and interests is emphasized. The paper will have relevance to bioethicists, health researchers, and research regulators concerned about the appropriate use of peer-driven recruitment strategies in health research.

Photovoice: a needs assessment of African American cancer survivors.

The goal of this research was to understand the barriers and challenges that African American cancer survivors experience after being diagnosed with cancer. The authors provided 20 cancer survivors and caregivers with cameras to take pictures of their needs right after they were diagnosed with cancer. Most importantly, a major theme that arose from the participants' responses was the lack of culturally-specific support services located within their neighborhoods. Other needs included lack of social support, a lack of resources related to appearance, a lack of resources for continued care, and especially a lack of support services for children of survivors.