Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners.

Mays, Darren; DeMarco, Tiffani A.; Luta, George; Peshkin, Beth N.; Patenaude, Andrea Farkas; Schneider, Katherine A.; Garber, Judy E.; Tercyak, Kenneth P.

doi:10.1037/a0033418

Cited by 12 publications

(23 citation statements)

References 39 publications

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“…This pattern of partner involvement and decision-making has also been observed among couples contemplating the complexities resulting from prenatal microarray testing (Werner-Lin et al, 2016), indicating parallels with the decision-making of partners that emerge at the very early stages of the fetal genetic risk assessment process. Partners are also integral to decision-making and provide a major source of social support to women undergoing testing for hereditary cancer, including ovarian and breast cancer (Dekeuwer & Bateman, 2013; Mays et al, 2014; Werner-Lin et al, 2012).…”

Section: Discussionmentioning

confidence: 99%

Balancing Needs and Autonomy: The Involvement of Pregnant Women’s Partners in Decisions About cfDNA

et al. 2018

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Cell-free fetal DNA (cfDNA) screening is used to identify the presence of fetal genetic variants early in pregnancy. Patients' informed decision-making is central to the success of this new screen in clinical practice. Although research has focused on pregnant women's decision-making, little is known about partners' role and preferences as a member of the decision-making dyad. Using a grounded theory approach, this study analyzed 23 in-depth interviews to examine partners' perspectives about cfDNA screening and preferences with respect to their role in the decision-making process. Participants wished to be actively involved in testing decisions. They articulated a distinct set of needs and preferences in the decision-making process. Such involvement was hindered by several biological and logistical barriers. This study demonstrates the need to develop mechanisms that foster informed decision-making for cfDNA screening and related new reproductive genetic technologies that focus on not just the pregnant woman but also the decision-making dyad that includes her partner as well.

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Section: Discussionmentioning

confidence: 99%

Balancing Needs and Autonomy: The Involvement of Pregnant Women’s Partners in Decisions About cfDNA

et al. 2018

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“…The correlations showed intrapersonal and interpersonal associations among variables, which also appears in relations between communication about genetic tests and distress in parenting dyads (Mays et al, 2013). The mixed-level model showed interesting complexities for both secrecy and education.…”

Section: Discussionmentioning

confidence: 86%

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

Smith

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.

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“…A modest incentive of a $5 gift card was provided upon completion of each study assessment. Descriptions of the parent study sample of mothers and co-parents completing baseline and follow-up interviews, including comparisons of sample characteristics across study data collection points, are available elsewhere [28, 39]. …”

Section: Methodsmentioning

confidence: 99%

Modeling the dyadic effects of parenting, stress, and coping on parent–child communication in families tested for hereditary breast-ovarian cancer risk

et al. 2016

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Genetic testing for BRCA genes, associated with hereditary breast-ovarian cancer risk, is an accepted cancer control strategy. BRCA genetic testing has both medical and psychosocial implications for individuals seeking testing and their family members. However, promoting open and adaptive communication about cancer risk in the family is challenging for parents of minor children. Using prospective data collected from mothers undergoing BRCA genetic testing and their untested co-parents (N = 102 parenting dyads), we examined how maternal and co-parent characteristics independently and conjointly influenced the overall quality of parent–child communication with minor children. Statistical associations were tested in accordance with the Actor–Partner Interdependence Model. Significant Actor effects were observed among mothers, such that open parent–child communication prior to genetic testing was positively associated with open communication 6 months following receipt of genetic test results; and among co-parents, more open parent–child communication at baseline and greater perceived quality of the parenting relationship were associated with more open parent–child communication at follow-up. Partner effects were also observed: co-parents’ baseline communication and confidence in their ability to communicate with their minor children about genetic testing was positively associated with open maternal parent– child communication at follow-up. These results demonstrate that for families facing the prospect of cancer genetic testing, perceptions and behaviors of both members of child-rearing couples have important implications for the overall quality of communication with their minor children, including communication about cancer risk.

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Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners.

Cited by 12 publications

References 39 publications

Balancing Needs and Autonomy: The Involvement of Pregnant Women’s Partners in Decisions About cfDNA

Balancing Needs and Autonomy: The Involvement of Pregnant Women’s Partners in Decisions About cfDNA

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

Modeling the dyadic effects of parenting, stress, and coping on parent–child communication in families tested for hereditary breast-ovarian cancer risk

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