Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling

Authors

  • Shawn E. Lipinski,

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    • University of Virginia Department of Pediatrics—Genetics Division, P.O. Box 800386, Charlottesville, VA 22908.
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    • Shawn E. Lipinski received her masters degree from the JHU/NHGRI Genetic Counseling Program. She is a genetic counselor and clinical lecturer at the University of Virginia Health System. Ms. Lipinski is the treatment coordinator for the Lysosomal Storage Disease Treatment program at the UVAHS.

  • Michael J. Lipinski,

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    • Dr. Michael J. Lipinski received his M.D. from the Medical College of Virginia. He is a medical resident at the University of Virginia Health System and a prior Stanley J. Sarnoff Fellow in cardiovascular research.

  • Leslie G. Biesecker,

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    • Dr. Leslie Biesecker received his M.D. from the University of Illinois. He received pediatrics training at the University of Wisconsin and Medical and Molecular Genetics training at the University of Michigan. He is the Chief of the Genetic Disease Research Branch and Director of the Physician Scientist Development Program at the National Human Genome Research Institute, at the NIH in Bethesda, MD, USA. He directs a clinical and laboratory research program in the molecular genetics of human disease.

  • Barbara B. Biesecker

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    • Barbara B. Biesecker is a genetic counselor and Head of the Genetics Services Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health. She is also Director of the JHU/NHGRI Genetic Counseling Program. Ms. Biesecker's unit studies the effectiveness of genetic counseling interventions and the quality of life for individuals living with genetic conditions.


  • How to cite this article: Lipinski SE, Lipinski MJ, Biesecker LG, Biesecker BB. 2006. Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling. Am J Med Genet Part C Semin Med Genet 142C:232–240.

Abstract

Little is known about the impact of genetic counseling on parental uncertainty or perceived control regarding the prognosis of a child with a chromosomal disorder. By exploring the parents' concerns and needs surrounding the child's diagnosis, a genetic provider can help to facilitate effective coping. This study tested the association of measures of parental uncertainty and perceived control with the perceived helpfulness of the genetic counselor. A survey was distributed to 875 members of the Chromosome Deletion Outreach (CDO) support group. We hypothesized that parents' perceptions about the helpfulness of the genetic counselor would modify the relationship between perceived uncertainty, perceived control, and coping. Among the 363 respondents, there was a significant negative correlation of the perceived helpfulness of seeing a genetic counselor with the levels of uncertainty (rs = −0.20, P-value < 0.001). Lower perceived helpfulness of the genetic counselor, along with less perceived personal control, less benefit of a diagnosis, and lower parental age were significant predictors of the highest perceptions of uncertainty. The Transactional Model of Stress and Coping was used as a framework for interpreting the relationships between parental uncertainty, perceived control, and outcome variables. There was a significant positive correlation between parents' perceived personal control and their reports of helpfulness of the genetic counselor (rs = 0.20, P-value <0.0006). Genetic counseling can be enhanced for parents faced with rare disorders by using interventions focused on reducing feelings of uncertainty and enhancing feelings of control. © 2006 Wiley-Liss, Inc.

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