Advantages, Disadvantages, and Lessons Learned in Conducting Telephone Focus Groups to Discuss Biospecimen Research Concerns of Individuals Genetically at Risk for Cancer

Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive opportunities for conducting focus group research. This article reports our experiences using such technology to engage individuals genetically at risk for cancer about biospecimen research. Telephone-based focus groups were conducted with a total of 40 individuals, and participants were asked about their experiences and perceived benefits and limitations of participating in a telephone focus group about biospecimen research. The lessons learned can effectively be applied to other areas of health research. In particular, this method may be most useful to engage individuals who are less apt to speak in public, and/or when there are concerns over privacy if face-to-face discussions methods are used

Barbers Against Prostate Cancer: A Feasibility Study for Prostate Cancer Education in an Urban African American Community

The goal of this pilot study was to assess the feasibility of training barbers to deliver a brief culturally and literacy appropriate prostate cancer educational intervention to urban African American men. Eight barbers received training to deliver a 2-month educational intervention in the barbershop and completed pre- and posttest training assessments. The training workshops led to a significant increase in mean prostate cancer knowledge scores among the barbers (60% before vs. 79% after; P \u3c 0.05). The barbers also reported positively on the intervention in terms of satisfaction and relative ease of engaging clients. Training barbers to deliver a prostate cancer educational intervention is a feasible strategy for raising prostate cancer awareness of the disease among a priority population

Youth Ambassadors Reaching Out (YARO): Lessons learned from the implementation of a youth-based cancer education program

We know that many factors contribute to the exacerbation of cancer health disparities. These inequities observed in adulthood may have originated from behaviors occurring in early adolescence. We believe that increasing awareness of cancer prevention in youth may help reduce future disparities. Our community partners identified a need for youth-oriented cancer prevention and helped design the pilot Youth Ambassadors Reaching Out (YARO) program. YARO provided cancer prevention and health disparities education and exposure to health careers to 73 middle school students between 2012-2016. YARO included didactic sessions (health disparities, smoking prevention, physical activity, nutrition), a cancer center tour, and Photovoice project. Students were encouraged to serve as ambassadors by sharing lessons learned with others. Participants demonstrated increases in cancer prevention knowledge during the program. Evaluation data revealed that students served as ambassadors by sharing information with others about healthy behaviors, improving their own health habits, and volunteering in their communities

Increasing Cervical Cancer Screening in a Hispanic Migrant Farmworker Community through Faith-Based Clinical Outreach

Objective: Partnerships between academic medical centers and faith-based community organizations have been associated with increased screening rates in low-income minority women. We describe clinical outcomes of an outreach partnership between a cancer center and a faith-based outreach clinic offering gynecologic screening services in central Florida to increase cervical cancer screening adherence in a priority population of primarily Hispanic farmworker women. Methods: Data sources included a retrospective chart review. This descriptive study examined patterns of cervical cancer screening behavior among the patient population of the faith-based outreach clinic. Results: Findings suggest that among this group of patients, the demographic factors that predict adherence with cervical cancer screening recommendations are number of years having lived in the United States and marital status. Women residing in the United States for more than 5 years were significantly more adherent with cervical cancer screening recommendations compared with women who have resided in the United States for 5 years or less (p = .05), and married women were more likely to be adherent than unmarried women (p = .02). Conclusions: The partnership was successful in increasing cervical cancer screening adherence in this medically underserved population. When enabling barriers to screening adherence are removed through faith-based clinical outreach and engaged continuously for a number of years, uninsured, low-income Hispanic women are more likely to receive recommended preventive services

The Early Impact of the Affordable Care Act upon Colorectal Cancer Screening Utilization in Florida

Background: Colorectal cancer is the second leading cause of cancer-related deaths in the United States. Although preventable and curable through screening, early detection and treatment, a lack of health insurance is a major obstacle to receiving colorectal cancer screening (CRCS). Despite the Affordable Care Act (ACA) increasing access to health insurance by mandating coverage of CRCS, disparities in utilization rates continue. Therefore, researchers sought to better understand ACA related facilitators and impediments that affect the utilization of CRCS and collect specific recommendations from healthcare professionals to increase screening utilization rates in Florida. Methods: Researchers conducted in-depth interviews with 22 healthcare professionals. Data were coded and analyzed using an applied thematic analysis approach and interpreted according to levels of the Social Ecological Model. Results: Eight physicians and nurses, 7 healthcare workers/care coordinators, 5 administrators and insurers, and 2 health advocates completed interviews. In their view, the early days of the ACA facilitated CRCS uptake through use of frontline staff, patient provider communication, and increased access to healthcare. Barriers that remained, included out of pocket patient costs, limited Medicaid expansion, acceptance of ACA plans by only certain providers and removal of patient incentives. Recommendations for increasing CRCS included more promotion and awareness, removing costs and ensuring patient navigation. Conclusions: The ACA offered increased access to healthcare coverage, utilization of CRCS and encouraged better communication between healthcare providers and patients. However, persistent barriers remain and include varied CRCS-related patient costs and restricted provider networks included in ACA sponsored plans. Continued healthcare policy reform is needed to make CRCS affordable for all Americans

Health Literacy among Medically Underserved: The Role of Demographic Factors, Social Influence, and Religious Beliefs

The current study examined the sociodemographic and psychosocial variables that predicted being at risk for low health literacy among a population of racially and ethnically diverse patients accessing primary care services at community-based clinics. Participants (N = 416) were aged 50-75 years, currently not up-to-date with colorectal cancer (CRC) screening, at average CRC risk, and enrolled in a randomized controlled trial (RCT) aimed at promoting CRC screening. Participants completed a baseline interview that assessed health literacy as measured by Rapid Estimate of Adult Literacy in Medicine-Revised, sociodemographic factors, and psychosocial variables (e.g., health beliefs) prior to randomization and receipt of an intervention. Thirty-six percent of the participants were found to be at risk for low health literacy. Sociodemographic and psychosocial variables were assessed as predictors of being at risk for low health literacy using logistic regression. In the final model, predictors were male gender, being from a racial/ethnic minority group, being unable to work, having higher social influence scores, and having higher religious belief scores. These findings suggest several patient characteristics that may be associated with low health literacy, and highlight the importance of supporting all patients through simplified and clear communications and information to improve understanding of CRC screening information

Formative Research on Perceptions of Biobanking: What Community Members Think

Preparing healthy community members with timely communications prior to engaging them in a request to donate biospecimens promises to improve the experience of biobanking participation. To this end, a qualitative study was conducted to assess community member knowledge, attitudes, beliefs, and informational needs about cancer-related biospecimen collection in a large metropolitan area in southwest Florida. The study utilized purposive sampling techniques to recruit a total of 95 participants to participate in 12 focus groups, segmented by race/ethnicity and language preference (mixed race, African American only, and Spanish speaking) and age (18–29, 30–54, and 55 and older). Focus group interviews were analyzed using content analysis to identify emergent themes. Overall, participants in the 30 years and older groups were favorable toward participating in biobanking if their concerns were addressed, such as confidentiality and consent issues, in contrast to participants aged 18–29 who were more skeptical. For all participants, the desire to participate in research that seeks new cancer treatments outweighed mistrust. Moreover, many cited the potential scientific benefit for future generations as a primary motivator. Finally, in some groups a therapeutic misconception was expressed, where participants expressed a willingness to forego confidentiality of their health status in exchange for therapeutic benefit. This study contributes to the literature on community perceptions of the benefits and barriers of biobanking and adds to the development of meaningful education communication priming tools to advance understandings about biobanking

How a Diverse Research Ecosystem Has Generated New Rehabilitation Technologies: Review of NIDILRR’s Rehabilitation Engineering Research Centers

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a “total approach to rehabilitation”, combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970’s, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program

Schematic pedagogy: supporting one child’s learning at home and in a group

In this paper we identify ways in which the learning of very young children can be supported by practitioners developing a schematic pedagogy which focuses on structures of children’s thinking. First we provide a critical overview of relevant literature on schemas and schematic approaches to pedagogy. We then outline an original study undertaken to identify and support the learning of seven young children. Taking one child, whom we call Annie, we illustrate how her attention to the fine detail of elements of her home and group environments as she played, offered strong clues to her pedagogues about her persistent interests (schemas). We show how careful observation by practitioners can be used to understand and support future learning encounters through a schematic pedagogy, and we consider implications of such an approach for practice in toddlers’ early learning