Spirituality, Illness Unpredictability, and Math Anxiety Effects on Negative Affect and Affect-Management Coping for Individuals Diagnosed with Alpha-1 Antitrypsin Deficiency.

A growing number of genetic tests are included in diagnostic protocols associated with many common conditions. A positive diagnosis associated with the presence of some gene versions in many instances predicts a range of possible outcomes, and the uncertainty linked to such results contributes to the need to understand varied responses and plan strategic communication. Uncertainty in illness theory (UIT; Mishel, 1988, 1990) guided the investigation of efforts to feel in control and hopeful regarding genetic testing and diagnosis for alpha-1 antitrypsin deficiency (AATD). Participants included 137 individuals with AATD recruited from the Alpha-1 Research Registry who were surveyed about their subjective numeracy, anxiety about math, spirituality, perceptions of illness unpredictability, negative affect regarding genetic testing, and coping strategies about a diagnosis. Results revealed that experiencing more fear and worry contributed both directly and indirectly to affect-management coping strategies, operating through individual perceptions of illness unpredictability. The inability to predict the symptoms and course of events related to a genetic illness and anxiety regarding math heightened fear and worry. Spirituality lessened both illness unpredictability and negative affective responses to a diagnosis. Results affirm the importance of clinician and counselor efforts to incorporate attention to patient spirituality. They also illustrate the complexity associated with strategic efforts to plan communication about the different versions of a gene's effects on well-being, when some versions align with mild health effects and others with severe effects.

Living with a Rare Health Condition: The Influence of a Support Community and Public Stigma on Communication, Stress, and Available Support.

People affected by rare diseases often have limited coping resources and sometimes face stigma. They build communities with others who share their conditions, but not all members may benefit from these communities. This study investigated how adults with a rare genetic health condition (Alpha-1 antitrypsin deficiency; AATD) think about both the Alpha-1 community and public stigma about AATD, and how these cognitions were associated with their communication responses and well-being. The results showed that people with AATD encountered stigmatization from various sources, including family, employers, healthcare providers, and insurance companies. Stronger public stigma predicted more secrecy, more stress, and less available support. Stronger group identification with the Alpha-1 community predicted less secrecy; stronger group activism predicted more available support and more communication to challenge stigmatizers. Post-hoc analyses showed significant interactions between public stigma and group cognitions on communication to challenge stigmatizers. Practical implications for bolstering communities to improve the well-being of people with rare diseases were discussed.

Keeping Secrets or Educating Others: A Dyadic Analysis of Group Entitativity's Influence on Spouses' Label Management Connected to AATD.

In 1963, Goffman argued that forming a group based on shared stigma may provide benefits. However, there is no empirical research on whether perception that a separate, unique, coherent group exists (i.e., group entitativity) influences coping, such as educating others or secrecy, for the stigmatized individual or his or her spouse. Further, little is known about how spouses influence each other in terms of promoting the education of others about a stigmatizing condition, especially when it comes to the role of believing that stigma-based groups, to which they may both belong, exist. This study provides a step toward bridging this gap in the research by applying the label management model in efforts to understand coping for couples in which one spouse is diagnosed with genetic mutations leading to alpha-1 antitrypsin deficiency (AATD). This study included 50 married couples in which one spouse is diagnosed with genetic mutations leading to alpha-1 antitrypsin deficiency (AATD). We found that group entitativity related to those with AATD counterbalanced the influence of genetic stigma on spouses' intentions to keep the diagnosis secret or to educate others about it. Intrapersonal and interpersonal influences appeared among spouses. Attention is needed on the power of creating groups for stigmatized persons and their relatives. Indeed, people live within a dynamic world of group entities, and multiple social identities including spousal and familial. While attention has been paid to the diffusion of stigmas to loved ones, less has been paid to the uplift of group entities for them.

Congruence-Incongruence Patterns in Alpha-1 Antitrypsin Deficiency Couples' Genetic Determinist Beliefs and Perceived Control over Genes: Implications for Clinical and Public Health Genomic Communication.

Genomics makes possible the isolation of multiple genes as co-factors that increase, but do not determine, risk for many adult-onset medical conditions, including alpha-1 antitrypsin deficiency (AATD). Those diagnosed with an adult-onset medical condition, such as AATD, are often married and make decisions about testing and care as a couple. We examined genetic essentialist and threat beliefs, focusing on beliefs about the genetic contribution to disease susceptibility and severity, as well as perceptions of control related to genes and health for married couples (N =59), in which one spouse has been tested for genetic mutations associated with AATD. The intraclass correlation for spouses' beliefs about genetic essentialism was strong and statistically significant, but the associations for their other beliefs were not. Incongruence between AATD participants and their spouses regarding genes' influence on disease severity directly related to incongruent perceptions of control and genetic contribution to disease susceptibility. Results revealed an inverse relationship to AATD participants' perceptions of behavioral control and a direct relationship to their beliefs about genes' influence on disease severity. This suggests a pattern of incongruence in which AATD participants have low levels of perceived control over genes' influence on health and high levels of perceived genetic influence on disease severity compared to spouses. With public health communication efforts lagging behind the science of genomics, insights regarding the congruence or incongruence associated with married couples' beliefs about genes' influence on disease afford pathways to guide clinical and public health communication about genomics.

Math anxiety and exposure to statistics in messages about genetically modified foods: effects of numeracy, math self-efficacy, and form of presentation.

Health risks are often communicated to the lay public in statistical formats even though low math skills, or innumeracy, have been found to be prevalent among lay individuals. Although numeracy has been a topic of much research investigation, the role of math self-efficacy and math anxiety on health and risk communication processing has received scant attention from health communication researchers. To advance theoretical and applied understanding regarding health message processing, the authors consider the role of math anxiety, including the effects of math self-efficacy, numeracy, and form of presenting statistics on math anxiety, and the potential effects for comprehension, yielding, and behavioral intentions. The authors also examine math anxiety in a health risk context through an evaluation of the effects of exposure to a message about genetically modified foods on levels of math anxiety. Participants (N = 323) were randomly assigned to read a message that varied the presentation of statistical evidence about potential risks associated with genetically modified foods. Findings reveal that exposure increased levels of math anxiety, with increases in math anxiety limiting yielding. Moreover, math anxiety impaired comprehension but was mediated by perceivers' math confidence and skills. Last, math anxiety facilitated behavioral intentions. Participants who received a text-based message with percentages were more likely to yield than participants who received either a bar graph with percentages or a combined form. Implications are discussed as they relate to math competence and its role in processing health and risk messages.

Segmenting by risk perceptions: predicting young adults' genetic-belief profiles with health and opinion-leader covariates.

With a growing interest in using genetic information to motivate young adults' health behaviors, audience segmentation is needed for effective campaign design. Using latent class analysis, this study identifies segments based on young adults' (N = 327) beliefs about genetic threats to their health and personal efficacy over genetic influences on their health. A four-class model was identified. The model indicators fit the risk perception attitude framework (Rimal & Real, 2003), but the covariates (e.g., current health behaviors) did not. In addition, opinion leader qualities covaried with one profile: Those in this profile engaged in fewer preventative behaviors and more dangerous treatment options, and also liked to persuade others, making them a particularly salient group for campaign efforts. The implications for adult-onset disorders, like alpha-1 antitrypsin deficiency, are discussed.

Mental representations of HPV in Appalachia: gender, semantic network analysis, and knowledge gaps.

Media coverage has emphasized human papillomavirus (HPV) as a vaccine-preventable, sexually transmitted virus causing cervical cancer. Appalachian undergraduate students (N = 309, 50% female) were surveyed on their knowledge of HPV; analyses of mental representations were similar to content analyses of media coverage of HPV, suggesting media cultivation. Semantic network analysis revealed linkages between vaccine, disease causation and prevention, women's centrality in the representations, and structural differences that varied between vaccinated women, unvaccinated women, and men. The findings provided insights into gaps in the public's understanding of HPV, potential stigmatization of those testing HPV+, and future challenges in vaccinating men.

Metaphor use and health literacy: a pilot study of strategies to explain randomization in cancer clinical trials.

Patients often have difficulty understanding what randomization is and why it is needed in Phase III clinical trials. Physicians commonly report using metaphorical language to convey the role of chance in being assignment to treatment; however, the effectiveness of this strategy as an educational tool has not been explored. Guided by W. McGuire's (1972) information-processing model, the purpose of this pilot study was to explore effects of metaphors to explain randomization on message acceptance and behavioral intention to participate in a Phase III clinical trial among a sample of low-income, rural women (N = 64). Participants were randomly assigned to watch a video that explained randomization using 1 of 3 message strategies: a low-literacy definition, standard metaphor (i.e., flip of a coin), or a culturally derived metaphor (i.e., sex of a baby). The influence of attention on behavioral intentions to participate in clinical trials was partially moderated by message strategy. Under conditions of low attention, participants in the culturally derived metaphor condition experienced significantly higher intentions to participate in clinical trials compared with participants in the standard metaphor condition. However, as attention increased, differences in intentions among the conditions diminished. Having a positive affective response to the randomization message was a strong, positive predictor of behavioral intentions to participate in clinical trials. The authors discuss the theoretical and practical implications of these findings.

Assessment of training needs and preferences for geographic information systems (GIS) mapping in state comprehensive cancer-control programs.

Geographic information systems (GIS) mapping technologies have potential to advance public health promotion by mapping regional differences in attributes (e.g., disease burden, environmental exposures, access to health care services) to suggest priorities for public health interventions. Training in GIS for comprehensive cancer control (CCC) has been overlooked. State CCC programs' GIS training needs were assessed by interviewing 49 state CCC directors. A majority perceived a need for GIS training, slightly more than half of state CCC programs had access to geocoded data, and the majority of programs did not require continuing education credits of their staff. CCC directors perceived judging maps and realizing their limitations as important skills and identified epidemiologists, CCC staff, public health officials, policy makers, and cancer coalition members as training audiences. They preferred in-class training sessions that last a few hours to a day. Lessons learned are shared to develop training programs with translatable GIS skills for CCC.

Preconceptional health: risks of adverse pregnancy outcomes by reproductive life stage in the Central Pennsylvania Women's Health Study (CePAWHS).

This study used population-based data to examine how health status and risks vary by reproductive life stage, with particular focus on the proximal risks for preterm birth and low birthweight (LBW) infants in preconceptional and interconceptional women. Data are from the Central Pennsylvania Women's Health Study (CePAWHS), which included a telephone survey of a representative sample of 2,002 women ages 18-45 years residing in largely rural central Pennsylvania. Women were classified according to reproductive stage--preconceptional, interconceptional, and postconceptional--on the basis of pregnancy history and reproductive capacity. Multiple indicators of health status and health risks were examined by reproductive stage, stratified by age group (ages 18-34 and ages 35-45). Results show that many risk factors varied significantly by reproductive stage and by age group within reproductive stage. Preconceptional and interconceptional women exhibited several unhealthy behaviors (e.g., binge drinking, nutritional deficits, physical inactivity). Younger pre- and interconceptional women (ages 18-34) had more gynecologic infections, some less favorable health behaviors, and more psychosocial stress than older women (ages 35-45) in the same reproductive stages. Older preconceptional women were more likely to have chronic conditions (hypertension, high cholesterol) than younger preconceptional women. Results suggest how interventions could be tailored to women's reproductive stages.

All or nothing... or just a hat? Farmers' sun protection behaviors.

Farmers have an increased risk for developing skin cancers and thus comprise an important audience for messages that address sun protection practices. This project examines sun protection behaviors of farmers from southeastern Georgia and uses those measured behaviors to conduct a cluster analysis. Farmers (N = 480) were clustered into three groups using six variables that measured their frequency of sun protective and purchasing behaviors. The three groups were characterized as either engaging heavily in sun protective behaviors, engaging in none of the recommended sun protective behaviors, or only wearing hats as a sun protective behavior. Practitioners seeking to develop health message interventions that target farming populations should consider the current behaviors of subgroups of farmers when developing audience segments to tailor messages aimed at increasing sun protective behaviors. Practical recommendations for message content targeted toward the subgroups of farmers are provided.

Gene cuisine or Frankenfood? The theory of reasoned action as an audience segmentation strategy for messages about genetically modified foods.

Genetically modified (GM) foods are currently a controversial topic about which the lay public in the United States knows little. Formative research has demonstrated that the lay public is uncertain and concerned about GM foods. This study (N = 858) extends focus group research by using the Theory of Reasoned Action (TRA) to examine attitudes and subjective norms related to GM foods as a theoretical strategy for audience segmentation. A hierarchical cluster analysis revealed four unique audiences based on their attitude and subjective norm toward GM foods (ambivalent-biotech, antibiotech, biotech-normer, and biotech individual). Results are discussed in terms of the theoretical and practical significance for audience segmentation.

Development and validation of tools to assess genetic discrimination and genetically based racism.

It is possible that communication from mass media, public health or consumer advertising sources about human genetics and health may reify stereotypes of racialized social groups, perhaps cueing or exacerbating discriminatory and racist attitudes. This research used a multifaceted approach to assess lay perceptions of genetic discrimination and genetically based racism (N = 644). Two tools for use in strategic planning efforts associated with communicating about human genetics and health, the genetic discrimination instrument (GDI) and the genetically based racism instrument (GBRI), were derived. The GDI emerged as having five dimensions associated with lay perceptions of genetic discrimination. The GBRI was found to be unidimensional. Scale validation activities supported the tools' concurrent and discriminant validity characteristics. Significant differences between blacks and whites on the criminal control rights, social reproductive rights and employer rights factors as well as the GBRI were found. We recommend application of these screening tools prior to national dissemination of messages associated with genes and disease susceptibility, including school and university-based curricula.

The role of "genetics" in popular understandings of race in the United States.

The increase in public representation of the science-based concept "genetics" in the mass media might be expected to have a major impact on public understanding of the concept of "race." A model of lay understandings of the role of genetics in the contemporary United States is offered based on focus group research, random digit dial surveys, and community based surveys. That model indicates that lay people identify are primarily by physical features, but these identifications are categorized into a variety of groupings that may be regional, national, or linguistic. Although they believe that physical appearance is caused largely by genetics, and therefore that race has a genetic basis, they do not uniformly conclude, however, that all perceived racial characteristics are genetically based. Instead, they vary in the extent to which they attribute differences to cultural, personal, and genetic factors.

Online health communication about human genetics: perceptions and preferences of internet users.

Unprecedented advancements in human genetics research necessitate keeping the public abreast of new information, applications, and implications and the Internet represents an important method of communicating with the public. Our research used cross-sectional self-report survey data collected from a diverse convenience sample of 780 Internet users in two states. Multivariate regression analysis explored the relationships between experiences, perceptions, and preferences for online health and genetics communication. Online health information seeking was associated with previous genetic information seeking, comfort with online genetic communication, perceived risk for genetic abnormality, being female, and having more education. Comfort with online genetics communication was associated with a preference for online genetic information, previous online health and off-line genetics information seeking, having a healthy lifestyle, believing in the positive impact of human genetics research, and being female. Perceiving online health information to be accurate was associated with preferring the Internet for genetics communication, being older, less educated, and perceiving Internet use as anonymous. Preferring online genetics communication to other communication channels was associated with perceiving online health information as accurate, being comfortable receiving online genetics information, having lower intrinsic religiosity, and being male. The implications of findings for Web-based health message design are discussed.

Diversity in lay perceptions of the sources of human traits: genes, environments, and personal behaviors.

Individual beliefs about the origins of illness and disease contribute to personal behavior to gain or maintain health and well-being. Both perceptions of the efficacy of recommended actions and the confidence individuals have in their ability to carry out prevention and detection practices may be associated with beliefs about illness causation. This study explored the perceptions of African American and European American men and women ages 18-45 years regarding the respective roles of inherited genes, social factors, personal behavior, and ecological environment on disease as compared to other human attributes, including height, weight, mental abilities, and talents. Results from focus group (N=16) data indicated that participants' (N=77) assignment of influence to various causative factors varied non-systematically by gender, race, education, economic class, and type of characteristic.

Perceived barriers to Internet-based health communication on human genetics.

The Internet has emerged as potential vehicle for distributing health communication to millions of individuals because it is interactive, user controlled, and offers breadth and depth of information. However, its widespread use by the public may be limited due to three overarching concerns: privacy and confidentiality, information accuracy and perceptions of credibility, including limited credibility of some government-sponsored web sites. To explore the potential of using the Internet, especially for delivering information on human genetics communication, 15 focus groups and one interview were conducted with African American and European American adult males and females in a southeastern town. We found that the participants recognized great potential in the Internet for health communication on human genetics, but they also voiced concerns about the credibility and accuracy of online information, lack of trust in many web sites, and fear of safeguarding privacy. Their concerns are summarized here, along with potential remedies health communicators could implement and should research further. The Internet cannot achieve its full potential for human genetics communication until the public's concerns are addressed and resolved.