Alpha‐1 Couples: Interpersonal and Intrapersonal Predictors of Spousal Communication and Stress

Parrott

Wienke

2015

Health Communication

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Goffman (1963) argued 50 years ago 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/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 counter-balanced 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.

Section: Methodsmentioning

confidence: 99%

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

Parrott

Wienke

2015

Health Communication

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“…The data were drawn from a larger study; data on a larger set of registered members of the Alpha-1 Research Registry (ARR) located at the Medical University of South Carolina (MUSC) (Smith, Wienke, & Baker, 2014a) and different variables on a smaller set of the spousal pairs (Smith, Wienke, & Coffman, 2014b) have been presented. The procedures are described in detail in those studies, and are briefly described here.…”

Section: Methodsmentioning

confidence: 99%

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

Parrott

Journal of Genetic Counseling

Hong

et al. 2014

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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.

“…Six items (Smith, Wienke, & Coffman, 2013) were used to measure the frequency of conversations spouses currently have regarding AATD-related information (e.g., I have talked with my spouse about how the AATD results make me feel ). The response options were strongly disagree, disagree, neutral, agree and strongly agree, which were later coded for analysis (1 = strongly disagree to 5 = strongly agree ).…”

Section: Methodsmentioning

confidence: 99%

“…As seen in Smith et al, 2013, eight items based on Link and colleagues (1989) were used to measure genetic stigma beliefs (e.g., Most people would feel that being diagnosed with a genetic mutation is a sign of personal failure ). The response options were strongly disagree , disagree , neutral , agree and strongly agree , which were later coded for analysis (1 = strongly disagree to 5 = strongly agree ), with higher scores indicating stronger beliefs that AATD is a stigmatized condition.…”

Section: Methodsmentioning

confidence: 99%

“…We do not know how many of the registered members are married, but the response rate (179/1,788 or 10 %) is likely an underestimate. Married participants were asked to report their marriage date and then state where they currently reside, which was used to link couples' responses (a dyadic analysis of the spousal communication of 50 couples appears in Smith et al 2013). Participants were then asked to complete measures related to genetic beliefs, stigma, genetic testing, couple communication, emotions related to the AATD diagnosis, marital quality, health insurance coverage, and current health status and behaviors.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Classifying Married Adults Diagnosed With Alpha‐1 Antitrypsin Deficiency Based on Spousal Communication Patterns Using Latent Class Analysis: Insights for Intervention

Journal of Genetic Counseling

Wienke

Baker

2013

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Married adults are increasingly exposed to test results that indicate an increased genetic risk for adult-onset conditions. For example, a SERPINA1 mutation, associated with alpha-1 antitrypsin deficiency (AATD), predisposes affected individuals to diseases such as chronic obstructive pulmonary disease (COPD) and cancer, which are often detected in adulthood. Married adults are likely to discuss genetic test results with their spouses, and interpersonal research suggests that spouses’ communication patterns differ. Latent class analysis was used to identify subgroups of spousal communication patterns about AATD results from a sample of married adults in the Alpha-1 Research Registry (N = 130). A five-class model was identified, and the subgroups were consistent with existing spousal-communication typologies. This study also showed that genetic beliefs (e.g., genetic stigma), emotions, and experiences (e.g., insurance difficulties) covaried with membership in particular subgroups. Understanding these differences can serve as the foundation for the creation of effective, targeted communications interventions to address the specific needs and conversational patterns of different kinds of couples.