Skip to main content
Top
Published in: Journal of Genetic Counseling 3/2014

01-06-2014 | Original Research

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

Authors: Rachel A. Smith, Sara E. Wienke, Michelle K. Baker

Published in: Journal of Genetic Counseling | Issue 3/2014

Login to get access

Abstract

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.
Appendix
Available only for authorised users
Literature
go back to reference American Thoracic Society/European Respiratory Society Statement (ATS/ERS). (2003). Standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. American Journal of Respiratory and Critical Care Medicine, 168, 818–900.CrossRef American Thoracic Society/European Respiratory Society Statement (ATS/ERS). (2003). Standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. American Journal of Respiratory and Critical Care Medicine, 168, 818–900.CrossRef
go back to reference Ball, J., Cowan, P., & Pape-Cowan, C. (1995). Who’s got the power? Gender differences in partners’ perceptions of influence during marital problem-solving discussions. Family Process, 34, 303–321.PubMedCrossRef Ball, J., Cowan, P., & Pape-Cowan, C. (1995). Who’s got the power? Gender differences in partners’ perceptions of influence during marital problem-solving discussions. Family Process, 34, 303–321.PubMedCrossRef
go back to reference Bank, I., Scavenius, M., Buller, H. & Middeldorp, S. (2004). Social aspects of genetic testing for factor V leiden mutation in healthy individuals and their importance for daily practice. Thrombosis Research, 113, 7–12. Bank, I., Scavenius, M., Buller, H. & Middeldorp, S. (2004). Social aspects of genetic testing for factor V leiden mutation in healthy individuals and their importance for daily practice. Thrombosis Research, 113, 7–12.
go back to reference Bayraktar, S., Gutierrez-Barrer, A. M., Lin, H., Elsayegh, N., Tasbas, T., Litton, J. K., Ibrahim, N.K. et al. (2013). Outcome of metastatic breast cancer in selected women with or without deleterious BRCA mutations. Clinical & Experimental Metastasis. doi:10.1007/s10585-013-9567-8. Bayraktar, S., Gutierrez-Barrer, A. M., Lin, H., Elsayegh, N., Tasbas, T., Litton, J. K., Ibrahim, N.K. et al. (2013). Outcome of metastatic breast cancer in selected women with or without deleterious BRCA mutations. Clinical & Experimental Metastasis. doi:10.​1007/​s10585-013-9567-8.
go back to reference Collins, L. M., & Lanza, S. T. (2010). Latent class and latent transition analysis: With applications in the social, behavioral, and health sciences. New York: Wiley. Collins, L. M., & Lanza, S. T. (2010). Latent class and latent transition analysis: With applications in the social, behavioral, and health sciences. New York: Wiley.
go back to reference Coors, M. E., Levinson, A. H., & Huitt, G. A. (2008). Anxiety related to genetic testing for alpha-1 antitrypsin deficiency and cystic fibrosis in COPD and/or bronchiectasis patients. Community Genetics, 11, 135–140.PubMedCrossRef Coors, M. E., Levinson, A. H., & Huitt, G. A. (2008). Anxiety related to genetic testing for alpha-1 antitrypsin deficiency and cystic fibrosis in COPD and/or bronchiectasis patients. Community Genetics, 11, 135–140.PubMedCrossRef
go back to reference Dohany, L., Gustafson, S., Ducaine, W., & Zakalik, D. (2012). Psychological distress with direct-to-consumer genetic testing: a case report of an unexpected BRCA positive test result. Journal of Genetic Counseling, 21, 399–401.PubMedCrossRef Dohany, L., Gustafson, S., Ducaine, W., & Zakalik, D. (2012). Psychological distress with direct-to-consumer genetic testing: a case report of an unexpected BRCA positive test result. Journal of Genetic Counseling, 21, 399–401.PubMedCrossRef
go back to reference Fitzpatrick, M. A. (1984). A typological approach to marital interaction: Recent theory and research. In L. Berkowitz (Ed.), Advances in experimental social psychology (Vol. 18, pp. 1–47). New York: Academic. Fitzpatrick, M. A. (1984). A typological approach to marital interaction: Recent theory and research. In L. Berkowitz (Ed.), Advances in experimental social psychology (Vol. 18, pp. 1–47). New York: Academic.
go back to reference Fitzpatrick, M. A. (1987). Marriage and verbal intimacy. In V. J. Derlaga & J. H. Berg (Eds.), Self-disclosure: Theory, research, and therapy (pp. 131–152). New York: Plenum Press.CrossRef Fitzpatrick, M. A. (1987). Marriage and verbal intimacy. In V. J. Derlaga & J. H. Berg (Eds.), Self-disclosure: Theory, research, and therapy (pp. 131–152). New York: Plenum Press.CrossRef
go back to reference Fitzpatrick, M. A. (1988). Between husbands and wives: Communication in marriage. Newbury Park: Sage. Fitzpatrick, M. A. (1988). Between husbands and wives: Communication in marriage. Newbury Park: Sage.
go back to reference Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice Hall. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice Hall.
go back to reference Kenen, R., & Schmidt, R. (1978). Stigmatization of carrier status: social implications of heterozygote genetic screening program. AJPH, 68, 1116–1120. Kenen, R., & Schmidt, R. (1978). Stigmatization of carrier status: social implications of heterozygote genetic screening program. AJPH, 68, 1116–1120.
go back to reference Klitzman, R. (2009). The impact of social contexts in testing for alpha-1 antitrypsin deficiency: the roles of physicians and others. Genetic Testing and Molecular Biomarkers, 13, 269–276.PubMedCentralPubMedCrossRef Klitzman, R. (2009). The impact of social contexts in testing for alpha-1 antitrypsin deficiency: the roles of physicians and others. Genetic Testing and Molecular Biomarkers, 13, 269–276.PubMedCentralPubMedCrossRef
go back to reference Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K. G., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Caner Epidemiology, Biomarkers & Prevention, 12, 304–313. Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K. G., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Caner Epidemiology, Biomarkers & Prevention, 12, 304–313.
go back to reference Koehly, L. M., Peters, J. A., Kenen, R., Hoskins, L. M., Ersigm, A. L., Kuhn, N. R., et al. (2009). Characteristics of health information gatherers, disseminators, and blockers with families at risk of hereditary cancer: implications for family health communication interventions. American Journal of Public Health, 99, 2203–2209.PubMedCentralPubMedCrossRef Koehly, L. M., Peters, J. A., Kenen, R., Hoskins, L. M., Ersigm, A. L., Kuhn, N. R., et al. (2009). Characteristics of health information gatherers, disseminators, and blockers with families at risk of hereditary cancer: implications for family health communication interventions. American Journal of Public Health, 99, 2203–2209.PubMedCentralPubMedCrossRef
go back to reference Koerner, A. F., & Fitzpatrick, M. A. (2002). Toward a theory of family communication. Communication Theory, 12, 70–91.CrossRef Koerner, A. F., & Fitzpatrick, M. A. (2002). Toward a theory of family communication. Communication Theory, 12, 70–91.CrossRef
go back to reference Koerner, A. F., LeRoy, B., & Veach, P. (2010). Family communication patterns. In C. Gaff & C. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 184–198). Oxford: Oxford University Press. Koerner, A. F., LeRoy, B., & Veach, P. (2010). Family communication patterns. In C. Gaff & C. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 184–198). Oxford: Oxford University Press.
go back to reference Lanza, S. T., Collins, L. M., Lemmon, D. R., & Schafer, J. L. (2007). PROC LCA: a SAS procedure for latent class analysis. Structural Equation Modeling, 14, 671–694.PubMedCentralPubMedCrossRef Lanza, S. T., Collins, L. M., Lemmon, D. R., & Schafer, J. L. (2007). PROC LCA: a SAS procedure for latent class analysis. Structural Equation Modeling, 14, 671–694.PubMedCentralPubMedCrossRef
go back to reference Laurell, C. B., & Eriksson, S. (1963). The electrophoretic alpha-1 globulin pattern of serum in alpha-1 antitrypsin deficiency. Scandinavian Journal of Clinical Laboratory Investigation, 15, 132–140.CrossRef Laurell, C. B., & Eriksson, S. (1963). The electrophoretic alpha-1 globulin pattern of serum in alpha-1 antitrypsin deficiency. Scandinavian Journal of Clinical Laboratory Investigation, 15, 132–140.CrossRef
go back to reference Lazarin, G. A., Haque, I. S., Nazareth, S., Lori, K., Patterson, A. S., Jacobson, J. L., et al. (2013). An empirical estimate of carrier frequencies for 400+ causal Mendelian variants: results from an ethnically diverse clinical sample of 23,453 individuals. Genetics in Medicine, 15, 178–186. doi:10.1038/gim.2012.114.PubMedCentralPubMedCrossRef Lazarin, G. A., Haque, I. S., Nazareth, S., Lori, K., Patterson, A. S., Jacobson, J. L., et al. (2013). An empirical estimate of carrier frequencies for 400+ causal Mendelian variants: results from an ethnically diverse clinical sample of 23,453 individuals. Genetics in Medicine, 15, 178–186. doi:10.​1038/​gim.​2012.​114.PubMedCentralPubMedCrossRef
go back to reference Lerman, C., Croyle, R. T., Tercyak, K. P., & Hamann, H. (2002). Genetic testing: psychological aspects and limitations. Journal of Consulting and Clinical Psychology, 70, 784–797.PubMedCrossRef Lerman, C., Croyle, R. T., Tercyak, K. P., & Hamann, H. (2002). Genetic testing: psychological aspects and limitations. Journal of Consulting and Clinical Psychology, 70, 784–797.PubMedCrossRef
go back to reference Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling theory approach to mental disorders: an empirical assessment. American Sociological Review, 54, 400–423.CrossRef Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling theory approach to mental disorders: an empirical assessment. American Sociological Review, 54, 400–423.CrossRef
go back to reference Noller, P. (1993). Gender and emotional communication in marriage: difference cultures or differential social power? Journal of Language and Social Psychology, 12, 132–152.CrossRef Noller, P. (1993). Gender and emotional communication in marriage: difference cultures or differential social power? Journal of Language and Social Psychology, 12, 132–152.CrossRef
go back to reference Rahaghi, F., Sandhaus, R., Strange, C., Hogarth, D., Eden, E., Stocks, J., Krowka, M., & Stoller, J. (2012). The prevalence of alpha-1 antitrypsin deficiency among patients found to have airflow obstruction. COPD, 9, 352–358. Rahaghi, F., Sandhaus, R., Strange, C., Hogarth, D., Eden, E., Stocks, J., Krowka, M., & Stoller, J. (2012). The prevalence of alpha-1 antitrypsin deficiency among patients found to have airflow obstruction. COPD, 9, 352–358.
go back to reference Rahman, B., Meiser, B., Sachdev, P., Barlow-Steward, K., Otlowski, M., Zilliacus, E. & Schofield, P. (2012). To know or not to know: An update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk. Genetic Testing and Molecular Biomarkers,16, 935–942. Rahman, B., Meiser, B., Sachdev, P., Barlow-Steward, K., Otlowski, M., Zilliacus, E. & Schofield, P. (2012). To know or not to know: An update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk. Genetic Testing and Molecular Biomarkers,16, 935–942.
go back to reference Rolland, J. S., & Williams, J. (2005). Toward a biospychosocial model for 21st century genetics. Family Processes, 44, 3–24.CrossRef Rolland, J. S., & Williams, J. (2005). Toward a biospychosocial model for 21st century genetics. Family Processes, 44, 3–24.CrossRef
go back to reference Sandhaus, R. A. (2010). Alpha-1 antitrypsin deficiency: whom to test, whom to treat? Seminars in Respiratory and Critical Care Medicine, 31, 343–347.PubMedCrossRef Sandhaus, R. A. (2010). Alpha-1 antitrypsin deficiency: whom to test, whom to treat? Seminars in Respiratory and Critical Care Medicine, 31, 343–347.PubMedCrossRef
go back to reference Sharp, H., Bridges, R., Krivit, W., & Freier, E. (1969). Cirrhosis associated with alpha-1 Antitrypsin deficiency: a previously unrecognized inherited disorder. Journal of Laboratory and Clinical Medicine, 73, 934–939.PubMed Sharp, H., Bridges, R., Krivit, W., & Freier, E. (1969). Cirrhosis associated with alpha-1 Antitrypsin deficiency: a previously unrecognized inherited disorder. Journal of Laboratory and Clinical Medicine, 73, 934–939.PubMed
go back to reference Slater, M. (1996). Theory and method in health audience segmentation. Journal of Health Communication, 1, 267–283.PubMedCrossRef Slater, M. (1996). Theory and method in health audience segmentation. Journal of Health Communication, 1, 267–283.PubMedCrossRef
go back to reference Smith, R. A. (2007). Language of the lost: an explication of stigma communication. Communication Theory, 17, 462–485.CrossRef Smith, R. A. (2007). Language of the lost: an explication of stigma communication. Communication Theory, 17, 462–485.CrossRef
go back to reference Smith, R. A. (2011). Stigma communication and health. In T. L. Thompson, R. Parrott, & J. Nussbaum (Eds.), Handbook of health communication (2nd ed., pp. 455–468). London: Taylor & Francis. Smith, R. A. (2011). Stigma communication and health. In T. L. Thompson, R. Parrott, & J. Nussbaum (Eds.), Handbook of health communication (2nd ed., pp. 455–468). London: Taylor & Francis.
go back to reference Smith, R. A., Wienke, S., & Coffman, D. L. (2013). Alpha-1 couples: interpersonal and intrapersonal predictors of spousal communication and stress. Journal of Genetic Counseling. doi:10.1007/s10897-013-9639-6. Smith, R. A., Wienke, S., & Coffman, D. L. (2013). Alpha-1 couples: interpersonal and intrapersonal predictors of spousal communication and stress. Journal of Genetic Counseling. doi:10.​1007/​s10897-013-9639-6.
go back to reference Stoller, J. K., & Aboussouan, L. S. (2009). Myths and misconceptions about alpha-1 antitrypsin deficiency. Archives of Internal Medicine, 169, 546–550.PubMedCrossRef Stoller, J. K., & Aboussouan, L. S. (2009). Myths and misconceptions about alpha-1 antitrypsin deficiency. Archives of Internal Medicine, 169, 546–550.PubMedCrossRef
go back to reference Stoller, J. K., & Aboussouan, L. S. (2012). A review of α1-Antitrypsin deficiency. American Journal of Respiratory and Critical Care Medicine, 185, 246–259.PubMedCrossRef Stoller, J. K., & Aboussouan, L. S. (2012). A review of α1-Antitrypsin deficiency. American Journal of Respiratory and Critical Care Medicine, 185, 246–259.PubMedCrossRef
go back to reference Stoller, J. K., Sandhaus, R. A., Turino, G., Dickson, R., Rodgers, K., & Strange, C. (2005). Delay in diagnosis of alpha-1 antitrypsin deficiency: a continuing problem. Chest, 128, 1989–1994.PubMedCrossRef Stoller, J. K., Sandhaus, R. A., Turino, G., Dickson, R., Rodgers, K., & Strange, C. (2005). Delay in diagnosis of alpha-1 antitrypsin deficiency: a continuing problem. Chest, 128, 1989–1994.PubMedCrossRef
go back to reference Tanash, H. A., Nilsson, P. M., Nilsson, J. A., & Piitulainen, E. (2010). Survival in severe alpha-1 antitrypsin deficiency (PiZZ). Respiratory Research, 11, 44.PubMedCentralPubMedCrossRef Tanash, H. A., Nilsson, P. M., Nilsson, J. A., & Piitulainen, E. (2010). Survival in severe alpha-1 antitrypsin deficiency (PiZZ). Respiratory Research, 11, 44.PubMedCentralPubMedCrossRef
go back to reference Wienke, S. (2012). Alpha-1 genetics. Portsmouth: Session presented at the Alpha-1 Association Education Day. Wienke, S. (2012). Alpha-1 genetics. Portsmouth: Session presented at the Alpha-1 Association Education Day.
go back to reference White, B. B. (1989). Gender differences in marital communication patterns. Family Process, 28, 89–106.PubMedCrossRef White, B. B. (1989). Gender differences in marital communication patterns. Family Process, 28, 89–106.PubMedCrossRef
go back to reference Yaniv, I., Benador, D., & Sagi, M. (2004). On not wanting to know and not wanting to inform others: choices regarding predictive genetic testing. Risk, Decision & Policy, 9, 317–336.CrossRef Yaniv, I., Benador, D., & Sagi, M. (2004). On not wanting to know and not wanting to inform others: choices regarding predictive genetic testing. Risk, Decision & Policy, 9, 317–336.CrossRef
Metadata
Title
Classifying Married Adults Diagnosed With Alpha-1 Antitrypsin Deficiency Based on Spousal Communication Patterns Using Latent Class Analysis: Insights for Intervention
Authors
Rachel A. Smith
Sara E. Wienke
Michelle K. Baker
Publication date
01-06-2014
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 3/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-013-9661-8

Other articles of this Issue 3/2014

Journal of Genetic Counseling 3/2014 Go to the issue