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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

Information

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

References

Afifi, T. D. (2015). Communal coping. The international encyclopedia of interpersonal communication (1-5). John Wiley & Sons. doi: Fdoi 10.1002/9781118540190.wbeic049CrossRefGoogle Scholar
Afifi, W. A., Felix, E. D., & Afifi, T. D. (2012). The impact of uncertainty and communal coping on mental health following natural disasters. Anxiety, Stress & Coping, 25(3), 329–347. doi: 10.1080/10615806.2011.603048CrossRefGoogle ScholarPubMed
Afifi, T. D., Hutchinson, S., & Krouse, S. (2006). Toward a theoretical model of communal coping in postdivorce families and other naturally occurring groups. Communication Theory, 16(3), 378–409.CrossRefGoogle Scholar
Aktan-Collan, K. I., Kääriäinen, H. A., Kolttola, E. M., Pylvänäinen, K., Järvinen, H. J., Haukkala, A. H., & Mecklin, J. P. (2011). Sharing genetic risk with next generation: Mutation-positive parents’ communication with their offspring in Lynch syndrome. Fam Cancer, 10(1), 43–50. doi: 10.1007/s10689-010-9386-xCrossRefGoogle ScholarPubMed
Aktan-Collan, K., Mecklin, J. P., Jarvinen, H., Nystrom-Lahti, M., Peltomaki, P., Soderling, I., Kaariainen, H. (2000). Predictive genetic testing for hereditary non-polyposis colorectal cancer: Uptake and long-term satisfaction. Int J Cancer, 89(1), 44–50.3.0.CO;2-3>CrossRefGoogle ScholarPubMed
Antonucci, T. C., & Jackson, J. S. (1990). The role of reciprocity in social support. In Sarason, B. R., Sarason, I. G., & Pierce, G. R. (Eds.), Wiley series on personality processes. Social support: An interactional view (pp. 173–198). Oxford, England: John Wiley.Google Scholar
Ashida, S., Hadley, D. W., Goergen, A. F., Skapinsky, K. F., Devlin, H., & Koehly, L. M. (2011). The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer syndrome. The Gerontologist, 51(6), 833–842. doi: 10.1093/geront/gnr049CrossRefGoogle ScholarPubMed
Bartuma, K., Nilbert, M., & Carlsson, C. (2012). Family perspectives in Lynch syndrome becoming a family at risk, patterns of communication and influence on relations. Hereditary Cancer in Clinical Practice, 10(1). doi: 10.1186/1897-4287-10-6CrossRefGoogle ScholarPubMed
Berg, C. A., Meegan, S. P., & Deviney, F. P. (1998). A social-contextual model of coping with everyday problems across the lifespan. International Journal of Behavioral Development, 22(2), 239–261.CrossRefGoogle Scholar
Boland, C. R., & Lynch, H. T. (2013). The history of Lynch syndrome. Familial Cancer, 12(2), 145–157. doi: 10.1007/s10689-013-9637-8CrossRefGoogle ScholarPubMed
Burton, A. M., Hovick, S. R., & Peterson, S. K. (2012). Health behaviors in patients and families with hereditary colorectal cancer. Clinics in Colon and Rectal Surgery, 25(2), 111–117. doi: 10.1055/s-0032-1313782Google ScholarPubMed
Cohen, M. A., & Lazarus, R. S. (1973). Active coping processes, coping dispositions, and recovery from surgery. Psychosomatic Medicine, 35(5), 375–389.CrossRefGoogle ScholarPubMed
Douglas, H. A., Hamilton, R. J., & Grubs, R. E. (2009). The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews. Journal of Genetic Counseling, 18(5), 418–435. doi: 10.1007/s10897-009-9232-1CrossRefGoogle ScholarPubMed
Eliezer, D., Hadley, D. W., & Koehly, L. M. (2014). Exploring psychological responses to genetic testing for Lynch syndrome within the family context. Psycho-Oncology, 23(11), 1292–1299. doi: 10.1002/pon.3551CrossRefGoogle ScholarPubMed
Ersig, A. L., Williams, J. K., Hadley, D. W., & Koehly, L. M. (2009). Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: A pilot study. Genetics in Medicine, 11(10), 728–734. doi: 10.1097/GIM.0b013e3181b3f42dCrossRefGoogle ScholarPubMed
Ersig, A. L., Hadley, D. W., & Koehly, L. M. (2011). Understanding patterns of health communication in families at risk for hereditary nonpolyposis colorectal cancer: Examining the effect of conclusive versus indeterminate genetic test results. Health Communication, 26(7), 587–594.CrossRefGoogle ScholarPubMed
Folkman, S., & Lazarus, R. S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 219–239.CrossRefGoogle Scholar
Gaff, C. L., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: Probands’ perceptions. J Genet Couns, 14(2), 133–140. doi: 10.1007/s10897-005-0412-3CrossRefGoogle ScholarPubMed
Giardiello, F. M., Allen, J. I., Axilbund, J. E., Boland, C. R., Burke, C. A., Burt, R. W., Levin, T. R. (2014). Guidelines on genetic evaluation and management of Lynch syndrome: A consensus statement by the US Multi-Society Task Force on Colorectal Cancer. Gastroenterology, 147(2), 502–526.CrossRefGoogle ScholarPubMed
Glantz, M. D., & Sloboda, Z. (2002). Analysis and reconceptualization of resilience. In Resilience and development. Springer: Boston, MA. pp. 109–126.CrossRefGoogle Scholar
Gondal, N., & McLean, P. D. (2013). What makes a network go round? Exploring the structure of a strong component with exponential random graph models. Social Networks, 35(4), 499–513.CrossRefGoogle Scholar
Granovetter, M. S. (1973). The strength of weak ties. American Journal of Sociology, 78(6), 1360–1380.CrossRefGoogle Scholar
Granovetter, M. (1979). The theory-gap in social network analysis. In Holland, P. W., & Leinhardt, S. (Eds.), Perspectives on social network research. Academic Press: New York. pp. 501–518.Google Scholar
Gritz, E. R., Peterson, S. K., Vernon, S. W., Marani, S. K., Baile, W. F., Watts, B. G., Lynch, P. M. (2005). Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. Journal of Clinical Oncology, 23(9), 1902–1910. doi: 10.1200/jco.2005.07.102CrossRefGoogle ScholarPubMed
Gritz, E. R., Vernon, S. W., Peterson, S. K., Baile, W. F., Marani, S. K., Amos, C. I., Lynch, P. M. (1999). Distress in the cancer patient and its association with genetic testing and counseling for hereditary non-polyposis colon cancer. Cancer Research Therapy and Control, 8(1–2), 35–49.Google Scholar
Hadley, D. W., Jenkins, J., Dimond, E., Nakahara, K., Grogan, L., Liewehr, D. J., Kirsch, I. (2003). Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Archives of Internal Medicine, 163(5), 573–582. doi: 10.1001/archinte.163.5.573CrossRefGoogle ScholarPubMed
Hampel, H. (2016). Genetic counseling and cascade genetic testing in Lynch syndrome. Familial Cancer, 15(3), 423–427.CrossRefGoogle ScholarPubMed
Handcock, M. S., Hunter, D. R., Butts, C. T., Goodreau, S. M., Krivitsky, P. N., Morris, M., Krivitsky, M. P. N. (2017). Package ‘ergm’ for R. Technical manual. Retrieved on 01/04/2017 from: http://mirror.its.sfu.ca/mirror/CRAN/web/packages/ergm/ergm.pdfGoogle Scholar
Hannum, J. W., Giese-Davis, J., Harding, K., & Hatfield, A. K. (1991). Effects of individual and marital variables on coping with cancer. Journal of Psychosocial Oncology, 9(2), 1–20. doi: 10.1300/J077v09n02_01CrossRefGoogle Scholar
Hirlekar, P., Mathur, S., Rastogi, A., et al. (2016). Yield and costs of routine testing of all newly diagnosed colon cancers for genetic syndromes. [The American Journal of Gastroenterology Abstract, 148]. The American Journal of Gastroenterology, 112(Suppl 1), S71.CrossRefGoogle Scholar
House, J. S., Umberson, D., & Landis, K. R. (1988). Structures and processes of social support. Annual Review of Sociology, 14(1), 293–318.CrossRefGoogle Scholar
Ishii, N., Arai, M., Koyama, Y., Ueno, M., Yamaguchi, T., Kazuma, K., Muto, T. (2011). Factors affecting encouragement of relatives among families with Lynch syndrome to seek medical assessment. Familial Cancer, 10(4), 649–654. doi: 10.1007/s10689-011-9462-xCrossRefGoogle ScholarPubMed
Jasperson, K. W., Tuohy, T. M., Neklason, D. W., & Burt, R. W. (2010). Hereditary and familial colon cancer. Gastroenterology, 138(6), 2044–2058.CrossRefGoogle ScholarPubMed
Johnson, D. W. and Johnson, R. T. (2005) New developments in social interdependence theory. Genetic, Social, and General Psychology Monographs, 131(4), 285–358.CrossRefGoogle ScholarPubMed
Kloor, M., Voigt, A. Y., Schackert, H. K., Schirmacher, P., von Knebel, D. M., & Bläker, H. (2011). Analysis of EPCAM protein expression in diagnostics of Lynch syndrome. Journal of Clinical Oncology, 29, 223–227. doi: 10.1200/JCO.2010.32.0820CrossRefGoogle ScholarPubMed
Koehly, L. M. (2017). It’s interpersonal: Family relationships, genetic risk, and caregiving. Gerontologist, 57(1), 32–39. doi: 10.1093/geront/gnw103CrossRefGoogle ScholarPubMed
Koehly, L. M., & Marcum, C. S. (2018). Multi-Relational Measurement for Latent Construct Networks. Psychological Methods, 23(1), 42–57. doi: 10.1037/met0000110CrossRefGoogle ScholarPubMed
Koehly, L. M., Peters, J. A., Kuhn, N., Hoskins, L., Letocha, A., Kenen, R., Greene, M. H. (2008). Sisters in hereditary breast and ovarian cancer families: Communal coping, social integration, and psychological well-being. Psycho-Oncology, 17, 812–821. doi: 10.1002/pon.1373CrossRefGoogle ScholarPubMed
Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiology, Biomarkers & Prevention, 12(4), 304–313.Google ScholarPubMed
Kuijer, R., Ybema, J., Buunk, B. P., de Jong, G. M., Thijs-Boer, F., & Sanderman, R. (2000). Active engagement, protective buffering, and overprotection: Three ways of giving support by intimate partners of patients with cancer. Journal of Social and Clinical Psychology, 19(2), 256–275. doi: 10.1521/jscp.2000.19.2.256CrossRefGoogle Scholar
Lawrence, A. R., & Schigelone, A. R. S. (2002). Reciprocity beyond dyadic relationships: Aging-related communal coping. Research on Aging, 24(6), 684–704.CrossRefGoogle Scholar
Leenan, C. H., Heijer, M., van der Meer, C., Kuipers, E. J., van Leerdam, M. E., & Wagner, A. (2016). Genetic testing for Lynch syndrome: Family communication and motivation. Familial Cancer, 15(1), 63–73. doi: 10.1007/s10689-015-9842-8CrossRefGoogle Scholar
Lewis, M. A., McBride, C. M., Pollak, K. I., Puleo, E., Butterfield, R. M., & Emmons, K. M. (2006). Understanding health behavior change among couples: An interdependence and communal coping approach. Social Science & Medicine, 62, 1369–1380. https://doi.org/10.1016/j.socscimed.2005.08.006CrossRefGoogle ScholarPubMed
Loader, S., Shields, C., Levenkron, J. C., Fishel, R., & Rowley, P. T. (2002). Patient vs. physician as the target of educational outreach about screening for an inherited susceptibility to colorectal cancer. Genetic Testing, 6(4), 281–290. doi: 10.1089/10906570260471813CrossRefGoogle ScholarPubMed
Lynch, H. T., Lynch, P. M., Lanspa, S. J., Snyder, C. L., Lynch, J. F., & Boland, C. R. (2009). Review of the Lynch syndrome: History, molecular genetics, screening, differential diagnosis, and medicolegal ramifications. Clinical Genetics, 76(1), 1–18. doi: 10.1111/j.1399-0004.2009.01230.xCrossRefGoogle ScholarPubMed
Lyons, R. F., Mickelson, K. D., Sullivan, M. J., Coyne, J. C. (1998). Coping as a communal process. Journal of Social and Personal Relationships, 15(5), 579–605.CrossRefGoogle Scholar
McPherson, M., Smith-Lovin, L., & Cook, J. M. (2001). Birds of a feather: Homophily in social networks. Annual review of sociology, 27(1), 415–444.CrossRefGoogle Scholar
Mollenhorst, G., Völker, B., & Flap, H. (2011). Shared contexts and triadic closure in core discussion networks. Social Networks, 33(4), 292–302.CrossRefGoogle Scholar
Mesters, I., Ausems, M., Eichhorn, S., & Vasen, H. (2005). Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): A retrospective exploratory study. Familial Cancer, 4(2), 163–167. doi: 10.1007/s10689-004-7992-1CrossRefGoogle ScholarPubMed
Palmquist, A. E. L., Koehly, L. M., Peterson, S. K., Shegog, M., Vernon, S. W., & Gritz, E. R. (2010). ‘The cancer bond’: Understanding the formation of cancer risk perception in families with Lynch syndrome. Journal of Genetic Counseling, 19(5), 473–486. doi: 10.1007/s10897-010-9299-8CrossRefGoogle Scholar
Pentz, R. D., Peterson, S. K., Watts, B., Vernon, S. W., Lynch, P. M., Koehly, L. M., & Gritz, E. R. (2005). HNPCC family members’ perceptions about the duty to inform and health professionals’ role in the dissemination of genetic information. Genetic Testing, 9(3), 261–268. doi: 10.1089/gte.2005.9.261CrossRefGoogle ScholarPubMed
Peterson, S. K. (2005). The role of the family in genetic testing: Theoretical perspectives, current knowledge, and future directions. Health Education and Behavior, 32(5), 627–639. doi: 10.1177/1090198105278751CrossRefGoogle ScholarPubMed
Power, E. A. (2017). Social support networks and religiosity in rural South India. Nature Human Behaviour, 1, 0057. doi: 10.1038/s41562-017-0057CrossRefGoogle Scholar
Robins, G., Pattison, P., Kalish, Y., & Lusher, D. (2007). An introduction to exponential random graph (p) models for social networks. Social Networks, 29(2), 173–191. doi: 10.1016/j.socnet.2006.08.002CrossRefGoogle Scholar
Rusbult, C., and Lange, P. V. (1996). Interdependence processes. In: Kruglanski, A. W., & Higgins, E. T. (Eds.), Social psychology: Handbook of basic principles (pp. 564–596). New York: Guilford.Google Scholar
Schwarz, S. (2014). The social dimension of coping: Communal negotiations of social benefits and burdens. In Cultural psychology of coping with disasters (pp. 203–223). New York: Springer.Google Scholar
Sharaf, R. N., Myer, P., Stave, C. D., Diamond, L. C., & Ladabaum, U. (2013). Uptake of genetic testing by relatives of Lynch syndrome probands: A systematic review. Clinical Gastroenterology and Hepatology, 11(9), 1093–1100. doi: 10.1016/j.cgh.2013.04.044CrossRefGoogle ScholarPubMed
Slaughter, A. J., & Koehly, L. M. (2016). Multilevel models for social networks: Hierarchical Bayesian approaches to exponential random graph modeling. Social Networks, 44, 334–345.CrossRefGoogle Scholar
Stiller, J., & Dunbar, R. I. (2007). Perspective-taking and memory capacity predict social network size. Social Networks, 29(1), 93–104. doi: 10.1016/j.socnet.2006.04.001CrossRefGoogle Scholar
Stoller, E. P. (1985). Exchange patterns in the informal support networks of the elderly: The impact of reciprocity on morale. Journal of Marriage and the Family, 47(2), 335–342.CrossRefGoogle Scholar
Syngal, S., Brand, R. E., Church, J. M., Giardiello, F. M., Hampel, H. L., & Burt, R. W. (2015). ACG Clinical Guideline: Genetic testing and management of hereditary gastrointestinal cancer syndromes. The American Journal of Gastroenterology, 110, 223–262. doi: 10.1038/ajg.2014.435CrossRefGoogle ScholarPubMed
Umar, A., Boland, C. R., Terdimanm, J. P., Syngal, S., Chapelle, de la, A.,Rüschoff, J., Srivastava, S. (2004). Revised Bethesda Guidelines for hereditary nonpolyposis colorectal cancer (Lynch syndrome) and microsatellite instability. Journal of the National Cancer Institute, 96(4), 261–268.CrossRefGoogle ScholarPubMed
Voorwinden, J. S., & Jaspers, J. P. C. (2016). Prognostic factors for distress after genetic testing for hereditary cancer. Journal of Genetic Counseling, 25(3), 495–503. doi: 10.1007/s10897-015-9894-9CrossRefGoogle ScholarPubMed
Watson, P., Vasen, H. F. A., Mecklin, J. P., Bernstein, I., Aarnio, M., Jarvinen, H. J., Lynch, H. T. (2008). The risk of extra-colonic, extra-endometrial cancer in the Lynch syndrome. International Journal of Cancer, 123(2), 444–449. doi: 10.1002/ijc.23508CrossRefGoogle ScholarPubMed
Weissman, S. M., Burt, R., Church, J., Erdman, S., Hampel, H., Holter, S., Senter, L. (2012). Identification of individuals at risk for Lynch syndrome using targeted evaluations and genetic testing: National Society of Genetic counselors and the collaborative group of the Americas on inherited colorectal cancer joint practice guideline. Journal of Genetic Counseling, 21(4), 484–493. doi: 10.1007/s10897-011-9465-7CrossRefGoogle Scholar
Zajdel, M., Helgeson, V. S., Seltman, H. J., Korytkowski, M. T., & Hausmann, L. R. (2018). Daily communal coping in couples with type 2 diabetes: Links to mood and self-care. Annals of Behavioral Medicine. doi: 10.1093/abm/kax047CrossRefGoogle ScholarPubMed
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