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The structure of emotional support networks in families affected by Lynch syndrome

Published online by Cambridge University Press:  24 April 2020

Christopher Steven Marcum Open the ORCID record for Christopher Steven Marcum [Opens in a new window] ,
Dawn Lea ,
Dina Eliezer ,
Donald W. Hadley  and
Laura M. Koehly Open the ORCID record for Laura M. Koehly [Opens in a new window]
Christopher Steven Marcum
Affiliation:
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA (e-mails: chris.marcum@nih.gov, dawn.lea@nih.gov, dina.eliezer@gmail.com)
Dawn Lea
Affiliation:
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA (e-mails: chris.marcum@nih.gov, dawn.lea@nih.gov, dina.eliezer@gmail.com)
Dina Eliezer
Affiliation:
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA (e-mails: chris.marcum@nih.gov, dawn.lea@nih.gov, dina.eliezer@gmail.com)
Donald W. Hadley
Affiliation:
Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA (e-mail: donald.hadley@nih.gov)
Laura M. Koehly*
Affiliation:
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA (e-mails: chris.marcum@nih.gov, dawn.lea@nih.gov, dina.eliezer@gmail.com)
*
*Corresponding author. Email: koehlyl@mail.nih.gov
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Abstract

Genetic risk is particularly salient for families and testing for genetic conditions is necessarily a family-level process. Thus, risk for genetic disease represents a collective stressor shared by family members. According to communal coping theory, families may adapt to such risk vis-a-vis interpersonal exchange of support resources. We propose that communal coping is operationalized through the pattern of supportive relationships observed between family members. In this study, we take a social network perspective to map communal coping mechanisms to their underlying social interactions and include those who declined testing or were not at risk for Lynch Syndrome. Specifically, we examine the exchange of emotional support resources in families at risk of Lynch Syndrome, a dominantly inherited cancer susceptibility syndrome. Our results show that emotional support resources depend on the testing-status of individual family members and are not limited to the bounds of the family. Network members from within and outside the family system are an important coping resource in this patient population. This work illustrates how social network approaches can be used to test structural hypotheses related to communal coping within a broader system and identifies structural features that characterize coping processes in families affected by Lynch Syndrome.

Keywords

communal copinggenetic testingLynch syndromesocial networksemotional support
Type
Research Article
Information
Network Science , Volume 8 , Issue 4 , December 2020 , pp. 492 - 507
Copyright
© Cambridge University Press 2020

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Footnotes

Action Editor: Thomas Valente

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