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Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.

Publication ,  Journal Article
McConkie-Rosell, A; Del Giorno, J; Heise, EM
Published in: J Genet Couns
February 2011

Parental approaches to communicating information about genetic disorders to their children may be an important determinant in how the children manage stress as well as their adjustment and adaptation to that information. We explored communication patterns through structured interviews with 46 parents of daughters who learned about their genetic risk status as minors. Three different levels of knowledge about fragile X syndrome were explored: 1) informing that it has been diagnosed in the family and is an inherited disorder, 2) informing about the possibility of a daughter being a carrier, and 3) if testing had been done, informing the daughter of her actual carrier status. Additionally, parental perceptions of their daughter's understanding of the information were explored along with frequency of discussions. We found that communication about genetic risk was initiated by the parents. Five disclosure patterns were identified with variations in style, content, and frequency of communication related to the information that was being disclosed. Aspects of resilient communication were present for all levels of disclosure; however, as the information became more personally relevant for the daughter such as disclosure about the possibility of "being a carrier" for fragile X syndrome and there was uncertainty regarding potential outcomes, the conversations included fewer resilient characteristics. Uncertainty about what and how to present information may negatively affect a parent's ability to include elements of resilient communication when disclosing genetic risk information.

Duke Scholars

Published In

J Genet Couns

DOI

EISSN

1573-3599

Publication Date

February 2011

Volume

20

Issue

1

Start / End Page

58 / 69

Location

United States

Related Subject Headings

  • Parent-Child Relations
  • Male
  • Humans
  • Genetics & Heredity
  • Genetic Predisposition to Disease
  • Genetic Carrier Screening
  • Fragile X Syndrome
  • Female
  • Cross-Sectional Studies
  • 3202 Clinical sciences
 

Citation

APA
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ICMJE
MLA
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McConkie-Rosell, A., Del Giorno, J., & Heise, E. M. (2011). Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective. J Genet Couns, 20(1), 58–69. https://doi.org/10.1007/s10897-010-9326-9
McConkie-Rosell, Allyn, Jacqueline Del Giorno, and Elizabeth Melvin Heise. “Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.J Genet Couns 20, no. 1 (February 2011): 58–69. https://doi.org/10.1007/s10897-010-9326-9.
McConkie-Rosell A, Del Giorno J, Heise EM. Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective. J Genet Couns. 2011 Feb;20(1):58–69.
McConkie-Rosell, Allyn, et al. “Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.J Genet Couns, vol. 20, no. 1, Feb. 2011, pp. 58–69. Pubmed, doi:10.1007/s10897-010-9326-9.
McConkie-Rosell A, Del Giorno J, Heise EM. Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective. J Genet Couns. 2011 Feb;20(1):58–69.
Journal cover image

Published In

J Genet Couns

DOI

EISSN

1573-3599

Publication Date

February 2011

Volume

20

Issue

1

Start / End Page

58 / 69

Location

United States

Related Subject Headings

  • Parent-Child Relations
  • Male
  • Humans
  • Genetics & Heredity
  • Genetic Predisposition to Disease
  • Genetic Carrier Screening
  • Fragile X Syndrome
  • Female
  • Cross-Sectional Studies
  • 3202 Clinical sciences