Language
English (en)
Date of Award
5-15-2025
Degree Type
Dissertation
Degree Name
Doctor of Philosophy (PhD)
Chair and Committee
Ginny Schulz
Committee Members
Fanghong Dong, Sarah Farabi, Amy McQueen, Caroline Mohrmann
Abstract
Sickle cell trait (SCT), the heterozygous form of sickle cell disease, has significant implications for health and reproductive decision-making. Timely disclosure of SCT status to children by their caregivers is critical for promoting genetic awareness and supporting informed reproductive choices. However, many caregivers delay or avoid this conversation. This study examined the psychosocial and behavioral factors influencing caregivers’ intentions to disclose SCT status to their children, guided by the Theory of Planned Behavior and the Theory of Regret Regulation. A descriptive, cross-sectional study was conducted with 78 caregivers of Children with SCT, who completed an online survey. The study addressed three primary aims: (1) to identify factors influencing disclosure intentions; (2) to explore differences based on recruitment sites; and (3) to evaluate the validity and reliability of the newly developed Sickle Cell Trait Disclosure Intention Questionnaire (SCT-DIQ). Most participants (79.5%) were female, 33.3% were married, and 69.2% identified as Black or African American. The median age was 36 years. A majority held a college degree or higher (47.4%) and were biological parents (78.2%), while less than half (47.4%) were employed. Results showed that 45% of participants had low SCT knowledge. Only 39.5% knew their SCT status, and just 29.5% knew their partner’s status. Of the theoretical constructs examined, anticipated regret was the only statistically significant influencer of intention to disclose SCT status (β = 0.010, SE = 0.0037, Wald χ² = 7.184, p = 0.007). Patterns in influencing factors varied by recruitment site: caregivers from the newborn screening lab reported greater social influence and perceived behavioral control; those from the hematology clinic demonstrated higher anticipated regret; and participants from the sickle cell association showed more positive attitudes toward disclosure. While these trends were not statistically significant, they offer clinically meaningful insights. The novel SCT-DIQ scale demonstrated strong reliability in measuring determinants of disclosure intentions. These findings underscore a persistent gap in SCT knowledge and highlight the pivotal role of anticipated regret in disclosure decisions. The study contributes to developing culturally relevant, theory-based interventions that promote family-centered genetic communication and informed reproductive health decision-making in nursing and public health practice.
DOI
https://doi.org/10.48765/tct2-wk22
Recommended Citation
Chaba, Christine A., "A Theory-Based Examination of Factors Influencing Caregivers’ Intentions to Disclose Sickle Cell Trait Status to Their Children" (2025). WUSM Theses and Dissertations – All Programs. 50.
https://digitalcommons.wustl.edu/all_etd/50
