Noelia Dulo
Pronouns: she/her
Research Mentor(s): David Sandberg
Co-Presenter:
Research Mentor School/College/Department: Pediatrics / Medicine
Presentation Date: April 20
Presentation Type: Poster
Session: Session 1 – 10am – 10:50am
Room: League Ballroom
Authors: Noelia Dulo, Melissa Gardner, Kristina Suorsa-Johnson, Alexandra Britt, Tara Schafer-Kalkhoff, Meilan Rutter, David Sandberg, David Sandberg
Presenter: 50
Abstract
Aims: Differences of sex development (DSD) is an umbrella term encompassing a category of rare congenital conditions in which the development of chromosomal, gonadal, or anatomic sex is atypical. In DSD, genital and reproductive structure development can follow pathways associated with differences in appearance and function. Individuals DSD and their families are subject to social and cultural factors impacting perspectives and decision-making around their condition and clinical care. The 2006 Consensus Statement on DSD recognized that religious factors can influence the choice of treatment options. However, these factors are inconsistently integrated during DSD care delivery. We aimed to explore the intersection of religion, faith, and spirituality with the delivery of DSD care. Methods: Individuals with DSD (n=24; ages 15-39 years), parents (n=19), DSD healthcare providers (n=37), and other professionals (n=30) participated in audio-recorded, semi-structured interviews. Participants were asked what constituted successful outcomes for those with DSD and how to achieve it. NVivo software was used to identify transcript passages with keywords relating to religion, faith, and spirituality. Excerpted passages were reviewed to identify overarching themes and significant topic areas therein. Results: Religion was identified as an important factor in decision-making and optimal care delivery. Discussion of religion during interviews varied based on role, from 0% (urologists/surgeons) to 100% (gynecologists, and parents involved in patient/peer support organizations). Participants with minimal/no religious affiliation reported having more freedom in decision-making processes. For those with religious affiliations and faith, some found comfort and purpose (creational intent) through religion; others expressed guilt or rejection if their choices led to “sin.†A major theme encompassed foundational beliefs underpinning gender, including social order, sexuality, and reproductive potential. These, in turn, influenced clinical decision-making regarding gender of rearing, genital surgery, and fertility options. While religious communities may offer support and acceptance, some participants reported ignorance and rejection by religious leaders and schools. Conclusions: Integrating religious considerations is important in optimizing clinical care for many patients and families with DSD. Hospital chaplaincy inclusion may provide a bridge to promote spiritual health and resilience and complement team care.
Biomedical Sciences
