Assessing Communication Practice during Clinical Trial Recruitment and Consent: The Clinical Trial Communication Inventory (CTCI)

The development and evaluation of training programs with the potential to improve informed consent and accrual to clinical trials depend heavily on the ability to measure outcomes of these trainings. In this chapter, we present the development of an instrument, the clinical trial communication inventory (CTCI). Data were collected from 87 clinical research professionals at three academic medical centers, which were analyzed using factor analytic methods and reliability testing procedures. This testing resulted in eight subscales representing verbal, nonverbal, and privacy protection behaviors. While the final CTCI instrument would benefit from further validity testing, it represents a resource that can be used to evaluate future trainings of research professionals

Communication, Culture and Cervical Self-Sampling: A Theory-Based Message Design Study for Cervical Cancer Prevention

Continued low rates of cervical screening in certain populations suggest the need to develop interventions that not only increase women’s confidence and motivation, but also address women’s documented fears and concerns about interacting with formal healthcare systems. Through the introduction of an HPV self-sampler tool, this study aimed to determine the appropriate messaging within one particular context - Jamaica - that would lead to improved levels of knowledge, beliefs and attitudes about HPV and cervical cancer and higher uptake of screening practices. The mixed methods study design included 8 focus groups, 10 interviews and a quasi-experiment in which 156 out of 163 (95.7%) study participants screened for cervical cancer using a self-sampler kit. Results from both qualitative and quantitative inquiries demonstrated high acceptability of the self-sampler among Jamaican women. Additionally, the findings suggest that messages that focus on increasing perceived susceptibility to cervical cancer could improve rates of screening. Further, interventions that utilize interpersonal and community-based social networks, including community health workers, church-based groups and other group based-education sessions may be more effective than traditional mass media. The results provide an important first step toward advancing theoretical understanding of how threat and efficacy messages are processed in a particular cultural context to increase cancer screening. These findings also make a practical contribution by demonstrating the incredible potential of cervical self-sampler tools, coupled with culturally appropriate communication, to increase uptake in an underscreened, high risk population in the English-speaking Caribbean

Evaluating Culturally-targeted Fear Appeal Messages for HPV Self-Sampling among Jamaican Women: A Qualitative Formative Research Study

Despite the disproportionate burden of cervical cancer among Caribbean women, evaluations of targeted communication interventions to increase screening behaviors are sparsely represented in extant literature. Informed by data on the cognitive, affective and sociocultural factors associated with low cervical screening in the English-speaking island of Jamaica, the current study aimed to explore how theory-based message design, coupled with innovative solutions, might increase screening. In this formative research study, we first described the process used to develop culturally-targeted fear appeal messages embedded within an HPV self-sampling kit developed by the researchers. Then, we shared the results of an evaluation of the kit, which was reviewed by 36 Jamaican women in 8 focus groups, to understand the potential impact of the messages and the utility of HPV self-sampling to increase screening behaviors in this population. The results provide data on effective messages for cervical cancer prevention among Jamaican women, which may be further applicable to underscreened women in the English-speaking Caribbean. Additionally, results from this research suggest support for HPV self-sampling to address salient cultural and structural barriers to screening, which provides an impetus for experimental research in message design to inform policy and practice

Exaggerated and Questioning Clickbait Headlines and Their Influence on Media Learning

Headlines that are incongruous with article content can negatively impact media learning outcomes. Clickbait headlines intentionally misrepresent news content, often in sensational ways to increase click-throughs and ad revenue. To evaluate the impact of clickbait headlines on media learning and article-related beliefs, we conducted two online experiments, each testing a 3 (headline-type: accurate, clickbait-question, clickbait-exaggerated) × 2 (exposure: headline-only, full article) factorial. In Study 1, an online sample of US adults ( N = 629) was randomly assigned to one of six news message conditions. Study 2 ( N = 1,674) was a replication study across three news contexts and testing a mediator to explain how exposure to a clickbait headline can influence learning. Key results suggest that reading the full article with an accurate headline resulted in the highest recognition and comprehension, and reading correcting information within an article is likely not enough to overcome the deleterious impact of a clickbait headline. Theoretical and practical recommendations are discussed

Acceptability of a multicomponent, community-based, HPV self-test intervention among Jamaican women

Jamaican women do not participate in routine Pap test screening as recommended, despite the availability of free Pap test services at community clinics. This low uptake has been associated with cultural and structural barriers such as limited knowledge and awareness, fear of pain associated with Pap tests, fear of diagnosis, modesty or self-consciousness, medical mistrust, and discontent with healthcare services. This study suggests that a multicomponent, community-based intervention that includes education and self-testing for the virus that causes cervical cancer (i.e., Human Papillomavirus, HPV) might increase screening rates. Community outreach workers were hired and recruited 163 women from two low socioeconomic status communities in Kingston, aged 30 to 65 years, and who had not had a Pap test in at least 3 years, to use an HPV self-test kit. Almost all the women (95.6%) used and returned the kit and reported in structured interviews that it was easy to use and preferable to visiting a doctor. Paired samples t-tests revealed that participants perceived higher threat of cervical cancer, greater susceptibility to cancer, greater sense of self-efficacy, and more positive screening social norms at post-test than at pretest. Among returners, 22% had an oncogenic HPV type detected in their sample. Findings demonstrate high acceptability of the HPV self-test among Jamaican women and, therefore, the potential of HPV self-test tools to increase screening uptake. Community-based approaches to disseminate this tool, such as outreach workers and educational small group sessions, appear to be culturally appropriate and effective in this context

Lessons learned from the “Goodie Box”: A message design study developed and evaluated in community settings for cervical cancer prevention

Despite the availability of free pap testing services, Jamaican women have low human papillomavirus (HPV) screening rates; 16% of women in the Kingston Metropolitan Area have been screened within the prior 3 years. This paper discusses the testing of theory-based messages to increase HPV screening uptake in a low-resource setting, using HPV self-test kits designed for this intervention. A total of 163 Jamaican women, aged 30–65 years, who had not had a pap test in at least 3 years, from two low socioeconomic status communities in Kingston, were enrolled and assigned to one of two versions of an HPV self-test kit, either with or without culturally targeted fear appeal messages. The uptake of screening was high across conditions; 95.6% of participants used the HPV self-test and returned their kits. However, surprising variations were observed in self-test acceptability, explained by differing attitudes toward the message conditions. Based on the results, we recommend four key components to increase HPV screening in low-resource settings: 1) focus on perceived threat in message design, 2) avoid written materials due to literacy concerns, 3) use culturally appropriate interpersonal or community-based channels, and 4) consider alternative solutions (such as a self-test) available at no or low cost to address structural barriers

When race and agency collide: examining pregnant black women's experiences in healthcare

Black women are disproportionately affected by racial disparities in maternal healthcare. Using critical race theory and the agency-identity model, this study examined how pregnant Black women communicated agency and perceived the impact of race in interactions with medical practitioners. Thirty Black women were interviewed about how they communicated with U.S. medical practitioners during pregnancy. Their responses revealed they used preemptive stereotype shields, self-agency, and information seeking on digital platforms to enhance interactions with practitioners. Also, some women argued for race-centered care and offered insights to Black mothers and to medical practitioners. Conversely, some women were uncertain about the effect of race on their care, while others wanted complete racial neutrality in their treatment. Nevertheless, this study indicates that race impacts maternal healthcare and expands understanding of stereotype threat, the sociocultural agency identity, and racial neutrality. Finally, the study may be used to support future health communication interventions regarding maternal care

Cultural factors influencing teenage pregnancy in Jamaica

A literature review was undertaken to identify key factors associated with teenage pregnancy in Jamaica. Using the PEN-3 cultural model, we first categorised these factors to develop a theoretical taxonomy that can be used to help health intervention planners to understand and address the phenomenon. Next, we examined the validity of this initial taxonomy by comparing it with cultural factors identified in semi-structured focus group discussions with Jamaican teenage mothers. Cultural factors identified in the initial literature review - such as parental interaction and control, the intergenerational transmission of teenage pregnancy and experiences of sexual abuse - were largely confirmed and built upon. Results highlight promising opportunities for health communication among young women in Jamaica with a focus on self-efficacy, resilience and positive cultural factors

Applying the PEN-3 Cultural Model to Address HIV/AIDS Prevention in Rural Guatemala

Guatemala has an accelerating HIV rate, where prevalence is three times higher among indigenous than nonindigenous, comprising 21% of all cases. Vulnerability is exacerbated by high poverty, low literacy, and poor access to testing and treatment options. This study develops a community-engaged HIV prevention campaign plan for the Mayan town of Santiago Atitlán. The PEN-3 model of cultural sensitivity frames this formative research project. Assessment domains of the PEN-3 model (Cultural empowerment and Relationships & expectations) identify culturally relevant factors affecting HIV prevention behaviours. The Cultural identity domain is utilized to identify entry points enhancing cultural acceptance and efficacy

An Evaluation of Clinical Trial Multimedia to Support Hispanic Cancer Patients' Informational and Decision-Making Needs

The inclusion of diverse populations in clinical trial research is a social justice imperative. Creating the communicative tools that can support cancer patients across varied cultural backgrounds in processing complex clinical trial information, to achieve informed consent, has been a challenge. This study sought to evaluate specific clinical trial multimedia-a website, four animations, and a decision aid-to meet the decision-making and informational needs of Hispanic patients. The multimedia content was positively evaluated by Hispanic cancer patients. However, the discussions also yielded important steps for culturally adapting these tools to account for particular informational needs and cultural values that would be important to incorporate into these, and future, clinical trial multimedia interventions that target Hispanic populations