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Shock, adjust, decide: reproductive decision making in cystic fibrosis (CF) carrier couples--a qualitative study

Jessica Myring1, William Beckett, Rupinder Jassi

  • 1Genetic Medicine, Manchester Academic Health Science Centre, University of Manchester, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK. Jessica.myring@nhs.net

Journal of Genetic Counseling
|July 7, 2011
PubMed

Insights

Reproductive decisions for cystic fibrosis (CF) carrier couples are influenced by personal experience with CF and sex. Couples with an affected child may pursue further pregnancies more readily than those with healthy children.

Area of Science:

  • Medical Genetics
  • Reproductive Health
  • Psychological Counseling

Background:

  • Cystic Fibrosis (CF) is a prevalent recessive genetic disorder in the White British population.
  • Genetic counseling is crucial for couples at risk of passing on CF.
  • Understanding reproductive decision-making processes is vital for effective genetic counseling.

Purpose of the Study:

  • To explore the reproductive decision-making process among individuals in cystic fibrosis carrier couples.
  • To identify factors influencing these decisions, including sex and personal experience with CF.
  • To develop a framework for guiding genetic counseling for at-risk couples.

Main Methods:

  • Qualitative research design utilizing semi-structured interviews.
  • Grounded theory methodology for data analysis.
  • Involved 31 participants from CF carrier couples (15 men, 16 women).

Main Results:

  • Reproductive decisions are influenced by the sex of the participant and personal experience with CF.
  • Couples with a history of an affected child or pregnancy were more likely to consider future pregnancies.
  • Distinct roles were observed for men and women in the decision-making process.

Conclusions:

  • A structured framework was developed to model the reproductive decision-making process for CF carrier couples.
  • This framework can enhance genetic counseling for couples at risk of genetic conditions.
  • Findings highlight the importance of considering individual experiences and sex in reproductive counseling.

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