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

Journal of Applied Communication Research

Parrott

2017

Self Cite

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.

Section: Genetic Essentialismmentioning

confidence: 99%

Living with a rare health condition: the influence of a support community and public stigma on communication, stress, and available support

Zhu

Journal of Applied Communication Research

Parrott

2017

Self Cite

“…Spouses may have differed in their perceptions of how well a genetic-based health condition could be prevented, which actions to enact and how quickly, and who is responsible for taking action. Married adults differ in the extent to which they believe that lifestyle choices can shape whether genes determine future health (Parrott, Smith, Hong, & Worthington, 2015). Moreover, one protective action for AATD is to avoid environmental toxins, such as quitting smoking and avoiding air pollution (Klitzman, 2009), which can require major lifestyle changes that evoke conflict.…”

Section: Discussionmentioning

confidence: 99%

Investigating married adults’ communal coping with genetic health risk and perceived discrimination

Communication Monographs

Sillars

Chesnut

et al. 2017

Self Cite

Increased genetic testing in personalized medicine presents unique challenges for couples, including managing disease risk and potential discrimination as a couple. This study investigated couples' conflicts and support gaps as they coped with perceived genetic discrimination. We also explored the degree to which communal coping was beneficial in reducing support gaps, and ultimately stress. Dyadic analysis of married adults (N = 266, 133 couples), in which one person had the genetic risk for serious illness, showed that perceived discrimination predicted more frequent conflicts about AATD-related treatment, privacy boundaries, and finances, which, in turn, predicted wider gaps in emotion and esteem support, and greater stress for both spouses. Communal coping predicted lower support gaps for both partners and marginally lower stress.

“…Importantly, married individuals do not always share the same beliefs regarding genetics. For example, Parrott, Smith, Hong, and Worthington (2015) found that individuals diagnosed with AATD perceived lower control over genes’ influence on health and higher genetic influence on disease severity when compared to their spouses. Spousal differences in perceptions of unpredictability regarding a genetic diagnosis may thus differ, with the potential for these differences to then impact the outcomes of patients’ perceptions of unpredictability in terms of negative affect and affect-management coping.…”

Section: Discussionmentioning

confidence: 99%

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

Worthington

Parrott

2017

Health Communication

Self Cite

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 different versions of a gene’s effects on well-being, when some versions align with mild health effects and others with severe effects.