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1.
Health Commun ; 33(4): 363-371, 2018 04.
Article in English | MEDLINE | ID: mdl-28059573

ABSTRACT

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.


Subject(s)
Adaptation, Psychological , Anxiety , Mathematics , Negativism , Spirituality , Uncertainty , alpha 1-Antitrypsin Deficiency/diagnosis , Adult , Female , Genetic Testing/statistics & numerical data , Humans , Male , Middle Aged , Models, Theoretical , Surveys and Questionnaires
2.
J Appl Commun Res ; 45(2): 179-198, 2017.
Article in English | MEDLINE | ID: mdl-29398734

ABSTRACT

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.

3.
Health Commun ; 31(2): 150-60, 2016.
Article in English | MEDLINE | ID: mdl-26086547

ABSTRACT

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.


Subject(s)
Interpersonal Relations , Social Perception , Spouses/psychology , alpha 1-Antitrypsin Deficiency/psychology , Confidentiality , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Peer Group , Registries , Regression Analysis , Self-Help Groups , South Carolina , Stereotyping
4.
J Genet Couns ; 24(3): 532-40, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25413221

ABSTRACT

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.


Subject(s)
Health Knowledge, Attitudes, Practice , Perception , alpha 1-Antitrypsin Deficiency/diagnosis , alpha 1-Antitrypsin Deficiency/genetics , Adult , Aged , Communication , Female , Genomics , Humans , Male , Middle Aged , Public Health , Spouses/psychology
5.
Health Commun ; 30(1): 90-1, 2015.
Article in English | MEDLINE | ID: mdl-25121633

ABSTRACT

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.


Subject(s)
Health Communication , Vocabulary , Dictionaries as Topic , Health Education , Humans , Interdisciplinary Communication , Language , Serial Publications
7.
J Health Commun ; 20(1): 35-42, 2015.
Article in English | MEDLINE | ID: mdl-24794077

ABSTRACT

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.


Subject(s)
Genetic Predisposition to Disease , Health Knowledge, Attitudes, Practice , Venous Thrombosis/genetics , Adolescent , Adult , Diagnostic Errors , Female , Humans , Middle Aged , Qualitative Research , Risk , Uncertainty , Venous Thrombosis/diagnosis , Venous Thrombosis/psychology , Young Adult
8.
J Health Commun ; 19(7): 838-52, 2014.
Article in English | MEDLINE | ID: mdl-24479699

ABSTRACT

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.


Subject(s)
Anxiety/psychology , Food, Genetically Modified , Health Communication/methods , Mathematics , Adolescent , Adult , Comprehension , Female , Humans , Intention , Male , Middle Aged , Self Efficacy , Statistics as Topic , Young Adult
9.
Health Commun ; 29(5): 483-93, 2014.
Article in English | MEDLINE | ID: mdl-24111749

ABSTRACT

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.


Subject(s)
Attitude to Health , Genetic Predisposition to Disease/psychology , Health Behavior , Adolescent , Adult , Female , Health Knowledge, Attitudes, Practice , Humans , Leadership , Male , Public Opinion , Risk Factors , Self Efficacy , Young Adult
10.
Health Commun ; 29(2): 137-46, 2014.
Article in English | MEDLINE | ID: mdl-23448621

ABSTRACT

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.


Subject(s)
Genes , Genetic Determinism , Metaphor , Adolescent , Adult , Attitude to Health , Female , Genes/physiology , Humans , Internal-External Control , Male , Middle Aged , Terminology as Topic , Young Adult
11.
J Cancer Educ ; 28(4): 698-708, 2013 Dec.
Article in English | MEDLINE | ID: mdl-23884547

ABSTRACT

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.


Subject(s)
Adaptation, Physiological , Biomedical Research/standards , Clinical Trials as Topic/psychology , Culture , Health Education , Minority Groups/education , Models, Theoretical , Rural Population/statistics & numerical data , Adult , Aged , Clinical Trials as Topic/standards , Female , Focus Groups , Humans , Male , Middle Aged , Patient Selection , Research Design , Workplace
12.
J Health Commun ; 17(7): 762-78, 2012 Aug.
Article in English | MEDLINE | ID: mdl-22574711

ABSTRACT

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.


Subject(s)
Black or African American/psychology , Genetic Determinism , Health Communication , Health Knowledge, Attitudes, Practice/ethnology , Internal-External Control , White People/psychology , Adolescent , Adult , Black or African American/statistics & numerical data , Aged , Female , Focus Groups , Genetic Predisposition to Disease/ethnology , Humans , Male , Middle Aged , Qualitative Research , Severity of Illness Index , White People/statistics & numerical data , Young Adult
13.
Am J Health Behav ; 36(2): 153-67, 2012 Mar.
Article in English | MEDLINE | ID: mdl-22370254

ABSTRACT

OBJECTIVES: To describe knowledge of and barriers to colorectal cancer (CRC) screening by sex and geography among Latino adults in Pennsylvania. METHODS: Eighty-two Latinos >50 years old engaged in one of 8 focus groups. Focus groups consisted of 4 components. Focus group data were audiotaped, transcribed, and grouped into thematic units using content analysis. RESULTS: We found significant differences in the reported barriers to CRC screenings by sex and geography. Identified barriers were placed into 5 domains: (1) physical environment, (2) structural, (3) sociocultural, (4) individual level, and (5) physician related. CONCLUSIONS: A targeted approach for CRC screening among Latinos may be better than the nontargeted approach.


Subject(s)
Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/ethnology , Health Services Accessibility , Hispanic or Latino/psychology , Mass Screening/statistics & numerical data , Patient Acceptance of Health Care , Adult , Aged , Female , Focus Groups , Humans , Male , Mass Screening/psychology , Middle Aged , Pennsylvania , Surveys and Questionnaires
14.
Health Commun ; 27(7): 663-71, 2012.
Article in English | MEDLINE | ID: mdl-22168461

ABSTRACT

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.


Subject(s)
Communication , Down Syndrome/genetics , Marfan Syndrome/genetics , Neurofibromatoses/genetics , Uncertainty , Adolescent , Adult , Aged , Down Syndrome/diagnosis , Family , Female , Humans , Male , Marfan Syndrome/diagnosis , Middle Aged , Neurofibromatoses/diagnosis , Young Adult
15.
J Health Psychol ; 17(6): 917-28, 2012 Sep.
Article in English | MEDLINE | ID: mdl-22169895

ABSTRACT

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.


Subject(s)
Health Knowledge, Attitudes, Practice , Papillomavirus Infections/psychology , Appalachian Region/epidemiology , Female , Humans , Male , Mass Media , Papillomavirus Infections/prevention & control , Papillomavirus Infections/transmission , Papillomavirus Vaccines/therapeutic use , Semantics , Uterine Cervical Neoplasms/prevention & control , Uterine Cervical Neoplasms/psychology , Young Adult
16.
J Health Commun ; 16(1): 3-16, 2011 Jan.
Article in English | MEDLINE | ID: mdl-21128152

ABSTRACT

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.


Subject(s)
Clinical Trials, Phase III as Topic , Health Literacy , Metaphor , Patient Education as Topic/methods , Poverty , Rural Population , Aged , Aged, 80 and over , Attention , Cultural Characteristics , Female , Humans , Middle Aged , Neoplasms/therapy , Patient Participation/statistics & numerical data , Physician-Patient Relations , Pilot Projects , Randomized Controlled Trials as Topic , Rural Population/statistics & numerical data , Videotape Recording
17.
Health Commun ; 25(6-7): 523-4, 2010 Sep.
Article in English | MEDLINE | ID: mdl-20845131
19.
Health Commun ; 25(3): 276-85, 2010 Apr.
Article in English | MEDLINE | ID: mdl-20461613

ABSTRACT

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.


Subject(s)
Community Networks/organization & administration , Geographic Information Systems , Health Planning/organization & administration , Neoplasms/epidemiology , Sentinel Surveillance , Awareness , Censuses , Health Education , Health Knowledge, Attitudes, Practice , Humans , Neoplasms/prevention & control , United States
20.
J Cancer Educ ; 25(1): 55-60, 2010 Mar.
Article in English | MEDLINE | ID: mdl-20087800

ABSTRACT

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.


Subject(s)
Geographic Information Systems , Neoplasms/epidemiology , Neoplasms/prevention & control , Sentinel Surveillance , Humans , United States
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