Date of Award

Spring 2020

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Crystal Hill-Chapman

Abstract

Cystic fibrosis (CF) is a heritable monogenic condition with allelic heterogeneity. A variety of sequence alterations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene results clinically in multisystem disease including a reduced reproductive capacity in affected males. Knowledge of reproductive capacity is often disclosed to parents by medical providers and to affected male children by medical providers and their parents. Despite advanced technology and therapeutics yielding the benefits of increased life expectancy and quality of life, males affected with CF largely remain uninformed in broader areas of sexual health and particularly in how their concept of masculine identity can be negotiated within the context of this inherited syndrome. Using a descriptive retrospective quantitative approach, this preliminary study examines and reflects on sexual education provided to males with CF by their fathers during their adolescence. The purpose of the study was to establish themes from interviewing affected adult males and/or fathers with an affected male child to begin the development of standards promoting more effective genetic counseling communication practices for an often-ignored population. The purpose was also to lay a foundation for generating resources for males with CF regarding their reproductive and sexual health (RSH).

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