Skip to main content
SpringerLink
Log in

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

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Couples often discuss genetic test results, and then manage their implications together. This interdependence can lead to common, shared experiences, similar intrapersonal processes to manage shared stressors, or interpersonal influences between spouses, leading to different outcomes. This study sought to reveal the intracouple, intrapersonal, and interpersonal influences of genetic stigma and negative feelings on spousal communication and perceived stress with 50 couples in which one spouse is a member of a genetic disease registry. The results were analyzed with dyadic analysis, including multilevel modeling. The findings showed that registered members and their spouses were not statistically different in their mean levels of perceived genetic stigma, negative feelings about alpha-1 antitrypsin deficiency (AATD), conversations with each other about the AATD test results, and their perceived stress. The findings also showed that their intracouple consistencies were not high, and their intrapersonal and interpersonal influences on communication and stress differed. The social implications of genetic research at the interpersonal level are discussed.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • American Thoracic Society/European Respiratory Society Statement: Standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency (2003). American Journal of Respiratory & Critical Care Medicine, 168, 818–900.

  • Campos, M. A., Wanner, A., Zhang, G., & Sandhaus, R. A. (2005). Trends in the diagnosis of symptomatic patients with α1-Antitrypsin Deficiency between 1968 and 2003. Chest, 128, 1179–1186.

    Article  CAS  PubMed  Google Scholar 

  • Cohen, S. (2004). Social relationships and health. American Psychologist, 59, 676–684.

    Google Scholar 

  • Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 386–396.

    Google Scholar 

  • Cohen, S., Kessler, R. C., & Gordon, L. U. (1995). Strategies for measuring stress in psychiatric and physical disorders. In S. Cohen, R. C. Kessler, & L. U. Gordon (Eds.), Measuring stress (pp. 3–28). New York: Oxford University Press.

  • Cohen, S., Frank, E., Doyle, W. J., Skoner, D. P., Rabin, B. S., & Gwaltney, J. M., Jr. (1998). Types of stressors that increase susceptibility to the common cold in adults. Health Psychology, 17, 214–223.

    Google Scholar 

  • Decruyenaere, M., Evers-Kiebooms, G., Cloostermans, T., Boogaerts, A., Demyttenaere, K., Dom, R., & Fryns, J. P. (2004). Predictive testing for Huntington’s disease: relationship with partners after testing. Clinical Genetics, 65, 24–31.

    Article  CAS  PubMed  Google Scholar 

  • 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. doi:10.1007/s10897-011-9475-5. Advance online publication.

    PubMed  Google Scholar 

  • 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.

    Chapter  Google Scholar 

  • Fitzpatrick, M. A. (1988). Between husbands and wives: Communication in marriage. Newbury Park: Sage.

    Google Scholar 

  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice Hall.

    Google Scholar 

  • Jones, N. L., & Sarata, A. K. (2008). Report for congress. Genetic information: Legal issues relating to discrimination and privacy. Retrieved from http://biotech.law.lsu.edu/crs/RL30006_20080310.pdf on January 22, 2013.

  • Keenan, K. F., Simpson, S. A., Miedzybrodska, Z., Alexander, D. A., Semper, J. (2013, online). How do partners find out about the risk of Huntington’s Disease in couple relationships? Journal of Genetic Counseling. doi:10.1007/s10897-012-9562-2.

  • Kenny, D. A., Kashy, D. A., & Cook, W. L. (2006). Dyadic data analysis. New York: The Guilford Press.

    Google Scholar 

  • Klitzman, R. (2010). Views of discrimination among individuals confronting genetic disease. Journal of Genetic Counseling, 19, 68–83.

    Article  PubMed Central  PubMed  Google Scholar 

  • 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.

    CAS  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Lippi, G., Favaloro, E. J., & Plebani, M. (2011). Direct-to-consumer testing: more risks than opportunities. International Journal of Clinical Practice, 65, 1221–1229. doi:10.1111/j.1742-1241.2011.02774.x.

    Article  CAS  PubMed  Google Scholar 

  • Metcalfe, K. A., Liede, A., Trinkaus, M., Hanna, D., & Narod, S. A. (2002). Evaluation of the needs of spouses of female carriers of mutation in BRCA1 and BRCA2. Clinical Genetics, 62, 464–469.

    Article  CAS  PubMed  Google Scholar 

  • Mireskandari, S., Meiser, B., Sherman, K., Warner, B. J., Andrews, L., & Tucker, K. M. (2006). Evaluation of the needs and concerns of partners of women at high risk of developing breast/ovarian cancer. Psycho-Oncology, 15, 96–108.

    Article  PubMed  Google Scholar 

  • Petronio, S. (2002). Boundaries of privacy: Dialectics of disclosure. New York: State University of New York Press.

    Google Scholar 

  • Preacher, K. J., & Coffman, D. L. (2006, May). Computing power and minimum sample size for RMSEA [Computer software]. Available from http://quantpsy.org/.

  • Revenson, T. A., & DeLongis, A. (2011). Couples coping with chronic illness. In S. Folkman (Ed.), Oxford handbook of stress, health, and coping (pp. 101–123). NY: Oxford University Press.

    Google Scholar 

  • Richards, F., & Williams, K. (2004). Impact on couple relationships of predictive testing for Huntington Disease: a longitudinal study. American Journal of Medical Genetics, 126a, 161–169.

    Article  PubMed  Google Scholar 

  • Rolland, J. S., & Williams, J. (2005). Toward a biospychosocial model for 21st century genetics. Family Processes, 44, 3–24.

    Google Scholar 

  • 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.

    CAS  PubMed  Google Scholar 

  • Smith, R. A. (2007a). Language of the lost: an explication of stigma communication. Communication Theory, 17, 462–485.

    Article  Google Scholar 

  • Smith, R. A. (2007b). Picking a frame for communicating about genetics: stigmas or challenges. Journal of Genetic Counseling, 16, 289–298.

    Article  PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • Tanash, H. A., Nilsson, P. M., Nilsson, J. A., & Piitulainen, E. (2010). Survival in severe alpha-1 antitrypsin deficiency (PiZZ). Respiratory Research, 11, 44.

    Article  PubMed Central  PubMed  Google Scholar 

  • Wiseman, M., Dancyger, C., & Michie, S. (2010). Communicating genetic risk information within families: a review. Familial Cancer, 9, 691–703.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This project was supported by an ELSI grant with the Alpha-1 Foundation and Award Number P50-DA010075-15 from the National Institute on Drug Abuse. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Alpha-1 Foundation, the National Institute on Drug Abuse or the National Institutes of Health. We want to thank Roxanne Parrott, Michelle Baker, and Mary Poss for their feedback on earlier drafts of the paper. Most importantly, we are grateful to the members of the Alpha-1 Research Registry and their spouses for sharing their thoughts with us.

Conflict of Interest

Smith received grant funding from the Alpha-1 Foundation. Sara Wienke’s position is supported by the Alpha-1 Association.

Author information

Authors and Affiliations

  1. Department of Communication Arts & Sciences and Center for Infectious Disease Dynamics, The Pennsylvania State University, University Park, PA, 16803, USA

    Rachel A. Smith

  2. Department of Human Development & Family Studies and the Methodology Center, The Pennsylvania State University, University Park, PA, USA

    Rachel A. Smith & Donna L. Coffman

  3. Division of Pulmonary & Critical Care, Medical University of South Carolina, Charleston, SC, USA

    Sara Wienke

Authors
  1. Rachel A. Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sara Wienke
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Donna L. Coffman
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Rachel A. Smith.

Appendix

Appendix

Scale for Experienced Spousal Communication

Response options were not at all, rarely, sometimes, often, and frequently.

  1. 1.

    I have talked with my spouse about what Alpha-1 is.

  2. 2.

    I have talked with my spouse about how to treat conditions related to Alpha-1.

  3. 3.

    I have talked with my spouse about how the Alpha-1 results make me feel.

  4. 4.

    I have talked with my spouse about whether to share genetic results with insurance companies.

  5. 5.

    I have talked with my spouse about changing behavior (such as drinking, eating, exercise, or smoking) in order to avoid health conditions related to Alpha-1.

  6. 6.

    I have talked with my spouse about who else we will tell about the Alpha-1 diagnosis.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Smith, R.A., Wienke, S. & Coffman, D.L. Alpha-1 Couples: Interpersonal and Intrapersonal Predictors of Spousal Communication and Stress. J Genet Counsel 23, 212–220 (2014). https://doi.org/10.1007/s10897-013-9639-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-013-9639-6

Keywords

Search

Navigation