Amber Worthington

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.

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

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.

Organizational Credibility: The Role of Issue Involvement, Value-Relevant Involvement, Elaboration, Author Credibility, Message Quality, and Message Effectiveness in Persuasive Messages from Public Health Advocacy Organizations

The relationship between receiver characteristics (including issue involvement, value-relevant involvement, and elaboration) and message features (including language intensity, author credibility, message quality, and message effectiveness) on perceptions of organizational credibility were examined in this investigation within the context of public health advocacy messages about the U.S. Farm Bill and various food and food production topics. Undergraduate students (N = 218) completed an online survey that employed a 3 × 2 experimental message design. Results indicated that receiver variables and message features (excluding language intensity) were positively correlated with organizational credibility; message quality, message effectiveness, and author credibility accounted for 30.9% of the variability in perceptions of organizational credibility. The utility of examining organizational credibility in persuasive messages, particularly in the context of public health advocacy messages, is discussed, as well as the implications for including organizational credibility in future theoretical frameworks.

Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD

ABSTRACT Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease – Alpha-1 Antitrypsin Deficiency (AATD) – evaluated the NIHs website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIHs website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIHs website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.