Identifying potential factors influencing family-building perspectives in adults with SCD.

PURPOSE: The study aimed to identify factors influencing family-building perspectives among adults with sickle cell disease (SCD) overall and by sex, and to examine attitudes toward discussing SCD genetic transmission with partners and doctors by sex and relationship status.

METHODS

We conducted a secondary analysis of survey data from 91 adults with SCD (aged 21-39) receiving care at The Ohio State University Wexner Medical Center. Participants completed a survey assessing their sociodemographic information, factors influencing family-building perspectives, and attitudes regarding SCD genetic transmission. Inductive content analysis identified themes in open-ended survey responses. Descriptive statistics summarized quantitative data, and chi-square tests analyzed differences by sex and relationship status.

RESULTS

Five themes emerged: 1) concerns about personal health and pregnancy, reported primarily by females; 2) lack of resources (i.e., finances and familial support); 3) concerns about genetic transmission; 4) desire for a large family; and 5) indifference or low desire for children. Most participants reported being comfortable discussing SCD with partners (86%) and doctors (89%), with no differences by sex or relationship status. Among dating/partnered individuals, 65% reported their partner did not know their sickle cell trait status. Forty-five percent of participants received SCD genetic counseling, and 12% of those reported it influenced their family-building perspectives.

CONCLUSIONS

Family-building perspectives in adults with SCD may be influenced by multiple factors such as personal health, lack of resources, and concerns for genetic transmission. Further research to understand how to optimize counseling practices is crucial to allow individuals with SCD to achieve their family-building goals.