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.

Family history unawareness of blood clot risk: links to misdiagnoses and illness uncertainties in personal and expert realms.

The difficulty of diagnosing blood clots makes salient the question, "What role does family history awareness have for guiding lay and expert actions?" The authors examine the in-depth life reflection interviews of 20 women who experienced a first venous blood clot between the ages of 18 and 50 years, identifying causal attributions the women made for thrombosis after the event. Twelve participants described an understanding of the cascade of events linked to thrombosis, revealing that there is seldom a single cause. The other eight identified belief in a single determining cause for their thrombosis. The authors reflect on the symptoms the women experienced during the course of the clotting event, patterns of care that they executed to self-manage their blood clot, and their misdiagnoses associated with symptoms and care. The women recalled the patterns of care received through formal health care systems and the reported misdiagnoses linked to these interactions. The recollections reveal that the subtle nature of venous blood clot symptoms contributes to lay and expert misdiagnoses. Use of antibiotics and pain killers in the wake of misdiagnosis masks symptoms, contributing to costly delays in accurate diagnoses. Four women were aware of a family history of clotting when the event occurred, 13 had such a history but lacked awareness until the clotting event, and three had no known history. Among women with awareness of their family history, blood clot diagnosis occurred sooner, promoting survival and efficiencies in health care. Implications for communicating about family history of thrombosis are considered.

An introduction to "keeping the 'health' in health communication": a column devoted to interdisciplinary vocabulary.

Health communication research and practice often involve interdisciplinary collaborations. These endeavors include vocabularies associated with the different disciplines and backgrounds of the collaborators. This feature will be devoted to providing glossaries to introduce these vocabularies.

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.

Defining genes using "blueprint" versus "instruction" metaphors: effects for genetic determinism, response efficacy, and perceived control.

Evidence supports mixed attributions aligned with personal and/or clinical control and gene expression for health in this era of genomic science and health care. We consider variance in these attributions and possible relationships to individual mind sets associated with essentialist beliefs that genes determine health versus threat beliefs that genes increase susceptibility for disease and severity linked to gene-environment interactions. Further, we contribute to theory and empirical research to evaluate the use of metaphors to define genes. Participants (N = 324) read a message that varied the introduction by providing a definition of genes that used either an "instruction" metaphor or a "blueprint" metaphor. The "instruction" metaphor compared to the "blueprint" metaphor promoted stronger threat perceptions, which aligned with both belief in the response efficacy of genetic research for health and perceived behavioral control linked to genes and health. The "blueprint" metaphor compared to the "instruction" metaphor promoted stronger essentialist beliefs, which aligned with more intense positive regard for the efficacy of genetic research and human health. Implications for health communicators include societal effects aligned with stigma and discrimination that such findings portend.

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.

Responses to a theoretically adapted clinical trial education session: faith-based sites versus rural work site dissemination.

The process for advancing biomedical knowledge depends upon recruiting an adequate and representative sample of individuals to voluntarily participate in research studies. A consistent personal barrier to cancer clinical trial participation is the lack of awareness and understanding related to trial availability, and the prevention and treatment roles participation represents. In particular, comprehensive community-based approaches to recruit and educate rural residents are needed. Moreover, consistent under representation of priority populations should be addressed with innovative outreach to collaborate in identifying culturally meaningful approaches. A theoretically adapted version of a component of the National Cancer Institute's "Clinical Trial Education Series" was assessed via educational sessions delivered through work sites and churches. From eight focus groups with 90 participants, we found that church leaders, congregants, and community members were receptive to education on cancer research, increased their short-term knowledge about it, and intent to participate in cancer studies, decreased their current anxiety about clinical trials participation, and provided specific suggestions for further adapting the educational session to be even more culturally relevant. These outcomes provide evidence to support the effectiveness of future customized recruitment strategies embedded within a community or faith-based environment that may increase knowledge, decrease anxiety and intent to actual participation in cancer studies, as well as impact study representativeness and address causes of health disparities.

Health communication, genetic determinism, and perceived control: the roles of beliefs about susceptibility and severity versus disease essentialism.

This research examined the lay public's beliefs about genes and health that might be labeled deterministic. The goals of this research were to sort through the divergent and contested meanings of genetic determinism in an effort to suggest directions for public health genomic communication. A survey conducted in community-based settings of 717 participants included 267 who self-reported race as African American and 450 who self-reported race as Caucasian American. The survey results revealed that the structure of genetic determinism included 2 belief sets. One set aligned with perceived threat, encompassing susceptibility and severity beliefs linked to genes and health. The other set represents beliefs about biological essentialism linked to the role of genes for health. These concepts were found to be modestly positively related. Threat beliefs predicted perceived control over genes. Public health efforts to communicate about genes and health should consider effects of these messages for (a) perceived threat relating to susceptibility and severity and (b) perceptions of disease essentialism. Perceived threat may enhance motivation to act in health protective ways, whereas disease essentialist beliefs may contribute to a loss of motivation associated with control over health.

Uncertainty management and communication preferences related to genetic relativism among families affected by down syndrome, Marfan syndrome, and neurofibromatosis.

Genes hold opportunities for us to look backward and forward in family health and disease incidence. Our beliefs about genes' roles in health form around frameworks relating to personal control, and the influence of social networks and/or religious faith on genetic expression in health. These genetic relativistic frameworks were found to predict levels of illness uncertainty among 541 diagnosed adults and family members affected by neurofibromatosis, Down syndrome, and Marfan syndrome. Participants were recruited and surveyed about their expectations and preferences for communicating about their respective disorder, with illness uncertainty found to predict the desire to communicate about the condition and to manage related uncertainty. The desire to manage uncertainty in ways that foster control and hope partially mediated the relationship between illness uncertainty and communication preferences. Negative feelings about the condition, which were stronger for affected participants than for family members, related to illness uncertainty, the desire to manage uncertainty, and communication preferences, mediating the relationship between illness uncertainty and uncertainty management. Findings contribute to research in illness uncertainty management and have pragmatic implications for the design of counseling and educational materials associated with the genetic conditions considered in this research.

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.

Using geographic information systems to promote community involvement in comprehensive cancer control.

Geographic information systems (GIS) for cancer control present an innovative approach to health communication for comprehensive cancer control (CCC) planning. The ability to spatially depict multivariate views of cancer incidence, treatment site locations, transportation routes, and even environmental exposures within a map represents opportunities to involve communities in novel ways with cancer control. Communities may be involved strategically and/or as a goal in planning efforts. The experiences and perceptions of a near census of U.S. CCC program managers (N = 49) were examined to gain their insights about the compatibility of GIS mapping for CCC, the target audiences to be reached with maps as a CCC message, and relative advantages of this technology in its diffusion. Analysis includes a quantitative assessment of interviews and qualitative statements to illustrate these issues. Results suggest that GIS use for cancer control has the potential to build community capacity and social capital for communities as a way to reduce the cancer burden.

A national survey of state comprehensive cancer control managers: implications of geographic information systems.

The growth of geographic information systems (GIS) for comprehensive cancer control (CCC) planning activities has been documented. We examined concerns about use and derived principles for practice. A national survey of US CCC program managers (n = 49) was conducted. Results include statements and frequency of barriers to use GIS mapping for CCC. Uses of GIS for CCC activities have benefits, but must be considered within organizational frameworks designed to safeguard confidentiality of health information and community relationships. Education to guide understanding of and input into the decisions linked to GIS mapping can limit possible harms while advancing CCC aims.

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.

Women's perceived control of their birth outcomes in the Central Pennsylvania Women's Health Study: implications for the use of preconception care.

PURPOSE: This study examines nonpregnant women's beliefs about whether or not they can influence their future birth outcomes with respect to the baby's health and factors associated with internal locus of control for birth outcomes. Perceived internal control of birth outcomes could be a predisposing factor for use of preconception care, which is recommended for all women of childbearing age by the Centers for Disease Control and Prevention. The overall hypothesis is that internal control of birth outcomes is a function of prior pregnancy experiences, current health status and stress levels, access to health care, and sociodemographics. METHODS: Data are from the Central Pennsylvania Women's Health Study random digit dial telephone survey of 2,002 women ages 18-45; the analytic sample is 614 nonpregnant women with current reproductive capacity who reported that they are considering a future pregnancy. Internal control of birth outcomes is measured using 1) a 4-item Internal Control of Birth Outcomes Scale, 2) a single-item measure of Preconceptional Control, and 3) a score reflecting high internal control on both of these measures. FINDINGS: In multiple logistic regression analyses, internal control of birth outcomes is positively associated with older age (35-45 vs. 18-34 years), higher education (some college or more), marital status (currently married or living with a partner), and higher self-rated physical health status on the SF-12v2 (but not mental health status or psychosocial stress). Previous adverse pregnancy outcomes and current access to health care have no association with internal control for birth outcomes. CONCLUSION: Variables associated with internal control of birth outcomes among women contemplating a future pregnancy are primarily sociodemographic and physical health related. Educational and social marketing efforts to increase women's use of preconception care may be particularly important for women who are likely to have lower internal control, including younger, less educated, unmarried, and less healthy women.

Improving women's preconceptional health: findings from a randomized trial of the Strong Healthy Women intervention in the Central Pennsylvania women's health study.

PURPOSE: Improving the health of women before pregnancy is an important strategy for reducing adverse pregnancy outcomes for mother and child. This paper reports the first pretest-posttest results from a randomized trial of a unique, multidimensional, small group format intervention, Strong Healthy Women, designed to improve the health behaviors and health status of preconceptional and interconceptional women. METHODS: Nonpregnant pre- and interconceptional women ages 18-35 were recruited in 15 low-income rural communities in Central Pennsylvania (n = 692). Women were randomized in a ratio of 2-to-1 to intervention and control groups; participants received a baseline and follow-up health risk assessment at 14 weeks and completed questionnaires to assess behavioral variables. The analytic sample for this report consists of 362 women who completed both risk assessments. Outcomes include measures of attitudinal and health-related behavior change. MAIN FINDINGS: Women in the intervention group were significantly more likely than controls to report higher self-efficacy for eating healthy food and to perceive higher preconceptional control of birth outcomes; greater intent to eat healthy foods and be more physically active; and greater frequency of reading food labels, physical activity consistent with recommended levels, and daily use of a multivitamin with folic acid. Significant dose effects were found: Each additional intervention session attended was associated with higher perceived internal preconceptional control of birth outcomes, reading food labels, engaging in relaxation exercise or meditation for stress management, and daily use of a multivitamin with folic acid. CONCLUSIONS: The attitudinal and behavior changes attributable to the intervention were related primarily to nutrition and physical activity. These results show that these topics can be successfully addressed with pre- and interconceptional women outside the clinical setting in community-based interventions.

Cancer registry policies in the United States and geographic information systems applications in comprehensive cancer control.

OBJECTIVES: Through a long history of cancer policies, public health has a foundation for cancer research and data to use in applying technological advancements for U.S. cancer control efforts. Geographic information systems (GIS) are one technology enabling the visualization of cancer risk patterns associated with incidence, mortality, and accessibility to care. METHODS: U.S. Comprehensive Cancer Control (CCC) program directors were interviewed from 49 of 50 states to assess use and function of GIS tools for mapping data related to cancer control policies and practices. Interviews were coded to obtain frequencies of response associated with content domains mapped using GIS tools and the perceived relative advantages. RESULTS: Significant relationships were found between the mapping of behavioral risk factors, health care services, transportation access, and policy advantages identified by program managers. The mapping of cancer incidence, mortality, and staging, transportation access, and multiple layers of content were found to have significant associations with perceived research advantages. CONCLUSIONS: U.S. CCC program managers recognize several important advantages relating to health policy and research for use of GIS tools in cancer control efforts. The application of GIS in U.S. cancer control efforts is employed unevenly, suggesting the need for innovative policies to support accessibility.

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.