Reproductive decision-making of people living with cystic fibrosis and their partners: A systematic review of psychosocial and ethical considerations

Patient Educ Couns. 2025 Jan:130:108449. doi: 10.1016/j.pec.2024.108449. Epub 2024 Sep 19.

Abstract

Objectives: As life expectancy for individuals living with cystic fibrosis (CF) has increased, many now reach adulthood and face important reproductive decisions with their partners. The aim of this systematic review was to assess the psychosocial and ethical considerations that influence the reproductive decision-making process of individuals living with CF and their partners.

Methods: Four databases (Web of science, Pubmed, CINAHL, Cochrane) were searched. Studies meeting inclusion criteria were analyzed using a thematic synthesis approach.

Results: Seven psychosocial and ethical themes related to reproductive decision-making were identified: 1) desire for a sense of 'normalcy', 2) (dis)approval of healthcare professionals, 3) possible impact on the 'future' child, 4) idea of good parenting, 5) possibility of transmitting the condition, 6) impact on health and personal well-being, and 7) role of non-CF partner and family/friends.

Conclusions: The decision to have a child often originates from a typical desire to become a parent and is further guided by a sense of moral responsibility and the need for a solid partnership/collaborative network.

Practice implications: Routine dialogue about reproductive health between individuals living with CF and their care teams is important, as these individuals depend on reliable, evidence-based information for informed reproductive decision-making. Our findings can guide healthcare professionals to effectively initiate these conversations.

Keywords: Chronic disease; Counselling; Cystic fibrosis; Ethics; Reproductive decision making.

Publication types

  • Systematic Review
  • Review

MeSH terms

  • Cystic Fibrosis* / psychology
  • Decision Making*
  • Female
  • Humans
  • Male
  • Parents / psychology
  • Reproductive Health
  • Sexual Partners / psychology