Author ORCID Identifier
0009-0002-1538-4839
Date of Graduation
5-2024
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Advisor/Committee Chair
Kate Richardson
Committee Member
Syed Hashmi
Committee Member
Hope Northrup
Committee Member
Laura Farach
Committee Member
Deborah Pearson
Committee Member
Jenny Do
Abstract
Tuberous sclerosis complex (TSC) is a highly variable genetic condition characterized by multi-organ tumor predisposition. Due to the heritability, variability, and severity of this condition, individuals with TSC may face unique psychosocial challenges in dating and romantic relationships, specifically related to disclosing their diagnosis to romantic partners. Despite disclosure within romantic relationships being explored in the context of other genetic conditions, this area has not yet been explored in the TSC community who face unique challenges related to physical and mental health, educational performance, and overall quality of life. This study surveyed 117 independent adults with TSC regarding the following components: demographics, disclosure and non-disclosure factors, relationship and disclosure experiences, TSC features, and Brief Illness Perception Questionnaire (Brief IPQ) scores. The goal of the survey was to identify patterns of diagnosis disclosure to romantic partners and assess the factors considered in deciding when or whether to disclose their diagnosis. As the number of relationships that individuals had increased, both the probability that they would disclose to all partners (p < 0.001) and the amount of time to disclose decreased (p = 0.007). Ethical obligation was the most heavily agreed upon disclosure factor (81%), while fear of rejection was the most heavily agreed upon non-disclosure factor (69%). Overall, 81% of participants considered disclosing their diagnosis to romantic partners to be challenging, 64% considered TSC to affect their desire to date, while 70% considered TSC to be a barrier to dating. These individuals also had more threatening views of TSC as measured by the Brief IPQ. These findings highlight a need for facilitated discussion and psychosocial support for the TSC community in the realm of disclosure within romantic relationships. Specifically, individuals who are in the age range of mid-20s to mid-30s, desire to have biological children, have skin lesions, a history of seizures, ADHD, or depression, could benefit most from disclosure resources or referrals to clinicians who are equipped to address these complex psychosocial issues. These disclosure specific discussions and resources may increase support within romantic relationships, positively impact disease management, and improve overall quality of life for the TSC community.
Keywords
Tuberous Sclerosis Complex, TSC, TAND, Genetic Counseling, Disclosure, Non-Disclosure, Dating, Romantic Relationships, Romantic Partners