Interviews of College Students with Siblings Who Have Genetic Diseases

Conclusion

College-students did not want to use their siblings genetic disease as an excuse, but would appreciate some flexibility in due dates of assignments when family crises arose. They did agree, however, that speaking with advisors to potentially make deadline extensions would decrease schoolworkassociated anxiety. Participants suggested a “sibs” weekend that would enable visits by their siblings with genetic diseases. Something that was noteworthy was that, by the engaging interactions of the participants it was shown that a support group would be therapeutic as they shared a common bond. They also expressed conflict regarding getting tested for the genetically linked disease of their sibling. In addition, at the close of the interviews participants agreed they felt more confident to discuss their family circumstances with faculty advisors.

Participants felt that holistic family-based care should include siblings in the delivery of nursing interventions. The two main opinions expressed by the participants were the nurses needed to increase communication and acknowledge the siblings’ presence (Box 1). Nurses also need to remember that there are multiple resources to utilize, such as child life, pastoral care, social work, or psychology.

Early hospital experiences by siblings of patients who have a genetic disease appear to remain fixed in their memories and as college-students their role has evolved to be an active member of that siblings’ caregiver team. These family demands surface to affect their college experience and may impact the stages of development that need to be achieved by this age group to reach healthy adulthood. It is hoped that the results of this pilot study will increase nursing awareness of the needs of siblings, as well as help the University learn how to support these students who have similar life experiences by developing new supportive programs. Through dissemination, these programming endeavors can then be shared with other university campuses. Future research could include conducting similar focus groups with larger, more diverse samples along with improved recruitment strategies.

Acknowledgements

The writers thank the editors of the Discussions magazine for the opportunity to revise the manuscript and to resubmit. It has been shortened for better flow and momentum of the research story that is being told, but none of the research has been lost. Also, possible replication of information was removed to avoid redundancy. The authors of this project feel that it is very important to share, especially with those in the college community.

References

Anderson, M., Elliott, E., & Zurynski, Y. (2013). Australian families living with rare disease:experiences of diagnosis, health services use and needs for psychosocial support.Orphanet Journal of Rare Diseases, 8(22)

Baumann, S., Dyches, T. T., & Braddick, M. (2005). Being a sibling. Nursing Science Quarterly, 18, 51-58.

Burns, N. & Grove, S. K. (2010). Understanding nursing research (6th ed.). Saint Louis:Saunders Elsevier.

Centers for Disease Control, Birth Defects are Common, Retrieved from http://www.cdc.gov/features/birthdefectscommon/, January 21, 2014. Updated January14, 2014.

Erikson, E. (1993). Childhood and Society. New York: Norton & Company, Inc.

Evans, B. F. (1996). Harry Stack Sullivan: Interpersonal Theory and Psychotherapy. London: Routledge.

Graff, J. C., Hankins, J. S., Hardy, B. T. Hall, H. R., Roberts, R. J., & Neely-Barnes, S. L. (2010). Exploring parent-sibling communication in families of children with sickle cell disease. Issues in Comprehensive Pediatric Nursing, 33, 101-123.

Graff, J. C., Mandleco, B., Dyches, T. T., Coverston, C. R., Roper, S.O., Freeborn, D. (2012). Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems. Journal of Family Nursing, 18, 175- 199.

Gau, S. S., Chiu, Y. N., Soong, W. T., Lee, M. B.(2008). Parental characteristics, parenting style, and behavioral problems among Chinese children with Down syndrome, their siblings and controls in Taiwan. Journal of Formos Medical Association, 107, 693-703.

Gold, J. I,. Mahrer, , N. E., Treadwell,., Weissman, L., Vichinsky, E. (2008). Psychosocial and behavioral outcomes in children with sickle cell disease and their healthy siblings. Journal of Behavioral Medicine, 31, 506-516.

Gold, J. I., Treadweld, M., Weissman, L., & Vichinsky, E. (2011). The mediating effects of family functioning on psychosocial outcomes in healthy siblings of children with sickle cell disease. Pediatric Blood Cancer, 57, 1055-1061.

Havermans, T., De Croock, I., Vercruysse, T., Goethals, E., Van Diest, I. Belgian siblings of children with a chronic illness: Is their quality of life different from their peers? Journal of Child Health Care. 2013 Oct 23. [Epub ahead of print]

Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of child psychology and psychiatry, and allied disciplines, 43, 225- 232.

Krueger, R. A. (1998). Analyzing & Reporting Focus Group Results. The Focus Group Kit 6. Thousand Oaks, CA.: Sage.

Lobato, D. J., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27, 711–716.

Macks, R. J., & Reeve, R. E. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37(6), 1060-1067

Morgan, D. (1998). The Focus Group Guidebook. The Focus Group Kit 1. Thousand Oaks, CA.: Sage.

Orsmond, G., & Seltzer, M. M. (2009). Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis- stress model of sibling well- being. Journal Autism Developmental Disorder, 39(7), 1053-1065.

Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with an autism spectrum disorder across the life course. Mental Retardation and Developmental Disabilities Research Reviews,13, 313-320.

Rampton, T. B., Rosemann, J. L., Latta, A. L., Mandleco, B. L., Olsen, S. R., Dyches, T. T. (2007). Images of life: siblings of children with Down syndrome. Journal of Family Nursing,13, 420-442.

Read, J., Kinali, M., Muntoni, F., Weaver, T., & Garralda, M. E. (2011). Siblings of young peoplewith Duchenne muscular dystrophy- a qualitative study of impact and coping. Official Journal of the European Pediatric Neurology Society, 15, 21-28.

Read, J., Kinali, M., Muntoni, F., Garralda, M. E. (2008). Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy. European Journal of Paediatric Neurology, 14, 340-348.

Skotko, B. G., Levine, S. P., Goldstein, R. (2011). Having a brother or sister with Down Syndrome: perspectives from siblings ,American Journal of Medical Genetics, Part A, 155A, 2348-2359.

Sin, J., Henderson, C., Pinfold, V., & Norman, I. (2013). The E sibling project- exploratory randomised controlled trial of an online multicomponent psychoeducational intervention for siblings of individuals with first episode psychosis. BMC Psychiatry, 13, 147-244.

Stern, M.E., & Marchesani, R. B. (Eds.). (2004). Hendrika Vande Kemp, Harry Stack Sullivan (1892-1949): Hero, Ghost, and Muse. In Saints and Rogues: Conflicts and Convergence In Psychotherapy (pp. 10-14). New York: Haworth Press.

Stoppler, M. (2014, January 14). Genetic diseases overview. Retrieved from http://www.medicinenet.com/genetic_disease/article.htm

Williams, P. D., Williams, , A. R., Graff, J.C., Hanson, S., Stanton, A., Hafeman, C., Sanders, S. (2002). Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine, 25, 411–424.

Wennström, I.L., Isberg, P.E., Wirtberg, I., Rydén, O. (2011). From children to young adults: cystic fibrosis and siblingship: a longitudinal study. Acta Paediatrica, 100, 1048-53.