Growing up in a family with a recessive genetic condition can trigger questions about progeny effect. This study explored perceptions of family hardiness and information sharing by 18- to 21-year-olds about genetic risk. Semistructured interviews, the Family Hardiness Index (FHI), and a Family Information Sharing Analog Scale (FISAS) were used. Participants included 11 youths who had relatives with hemophilia and 4 with sickle cell anemia. Findings revealed seven themes: assimilating premature knowledge; caring for others, denying self; cautioning during development; experiencing continual sickness; feeling less than; magnifying transition experiences; and sustaining by faith. There was no significant correlation between total FHI and FISAS. However, there was a statistically significant difference in FISAS between genetic condition variance. Specifically, higher hardiness was found and information sharing correlated among college youths in families with hemophilia. Additional research can lead to nursing interventions to provide genetic information to youths in families for illness variance.
American Academy of Pediatrics. (2001). Ethical issues with genetic testing in pediatrics. Pediatrics, 107(6), 1451-1455.
2.
American Society of Human Genetics Board of Directors and American College of Medical Genetics Board of Directors. (1995). Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233-1241.
3.
Anderson, J. (2001). After the sequencing of the human genome: New opportunities for nurses abound. Nursing Ethics, 8(5), 473-474.
4.
Beery, T. A., Sommers, M. S., & Hall, J. (2002). Focused life stories of women with cardiac pacemakers. Western Journal of Nursing Research, 24(1), 7-27.
5.
Collins, F. S., Green, E. D., Guttmacher, A. E., & Guyer, M. S. (2003). A vision for the future of genomics research: A blueprint for the genomic era. Nature, 422(6934), 835-847.
6.
Friedman, M. M., Bowden, V. R., & Jones, E. G. (2003). Family nursing: Research, theory and practice. Upper Saddle River, NJ: Pearson Education.
7.
Guttmacher, A. E., Jenkins, J., & Uhlmann, W. R. (2001). Genomic medicine: Who will practice it?American Journal of Medical Genetics, 106, 216-222.
8.
Hall, J. M., & Stevens, P. E. (1991). Rigor in feminist research. Advances in Nursing Science, 13(3), 16-29.
9.
Hern, M. (2004). Family information sharing analog scale. Unpublished scale. Cincinnati, OH.
10.
Hill, R. (1958). Generic features of families under stress. Social Casework, 49, 139-150.
11.
International Society of Nurses in Genetics. (2005). Position statement: Privacy and confidentiality of genetic information: The role of the nurse. Retrieved September 18, 2005, from http://www.isong.org/about/position_statements/privacy.htm
12.
Jarvinen, O., Lehesjoki, A.-E., Lindlof, M., Uutela, A., & Kaariainen, H. (2000). Carrier testing of children for two X-linked diseases: A retrospective study of comprehension of the test results and social and psychological significance of the testing. Pediatrics, 106(6), 1460-1465.
13.
Jorde, L. B., Carey, J. C., & Bamshad, M. J. (2003). Medical genetics (3rd ed.). St. Louis, MO: C. V. Mosby.
14.
Juengst, E. T. (1999). Genetic testing and the moral dynamics of family life. Public Understanding Science, 8, 193-205.
15.
Kobasa, S. C. (1979). Stressful life events, personality and health: An inquiry into hardiness. Journal of Personality and Social Psychology, 37, 1-11.
16.
Kobasa, S. C., Maddi, S. R., & Courington, S. (1981). Personality and constitution as mediators in the stress-illness relationship. Journal of Health and Social Behavior, 22(12), 368-378.
17.
Kosciulek, J. F., McCubbin, M. A., & McCubbin, H. I. (1993). A theoretical framework for family adaptation to head injury. Journal of Rehabilitation, 3, 40-45.
18.
Lashley, F. R. (1998). Clinical genetics in nursing practice (2nd ed.). New York: Springer.
19.
McCubbin, M., Balling, K., Possin, P., Frierdich, S., & Bryne, B. (2002). Family resiliency in childhood cancer. Family Relations, 51(2), 103-111.
20.
McCubbin, M. A., McCubbin, H. I., & Thompson, A. I. (1996). Family Hardiness Index (FHI). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (Eds.), Family assessment: Resiliency, coping and adaptation. Inventories for research and practice (pp. 239-305). Madison: University of Wisconsin Publishers.
21.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage.
22.
Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of Marriage and Family, 64, 349-360.
23.
Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). Upper Saddle River, NJ: Prentice Hall Health.
24.
Richards, M., & Ponder, M. (1996). Lay understanding of genetics: A test of a hypothesis. Journal of Medical Genetics, 33, 1032-1035.
25.
Ross, L. F. (2002). Predictive genetic testing for conditions that present in childhood. Kennedy Institute of Ethics Journal, 12(3), 225-244.
26.
Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27-37.
27.
Sofaer, S. (2002). Qualitative research methods. International Journal for Quality in Health Care, 14(4), 329-336.
28.
Svavarsdottir, E. K., McCubbin, M. A., & Kane, J. H. (2000). Well-being of parents of young children with asthma. Research in Nursing and Health, 23, 346-358.
29.
Tak, Y. R., & McCubbin, M. (2002). Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. Journal of Advanced Nursing, 39(2), 190-198.
30.
Tusaie, K., & Dyer, J. (2004). Resilience: A historical review of the construct. Holistic Nursing Practice, 18(1), 3-10.
31.
Williams, J. (2000). Impact of genome research on children and their families. Journal of Pediatric Nursing, 15(4), 207-211.
