Let’s talk about (prenatal) sex (chromosomes): Understanding opportunities for gender inclusive health care provision and parent education

The purpose of this project is to understand the current landscape of disclosure of Non-Invasive Pregnancy Testing (NIPT) results from the provider, patient, and stakeholder perspective and to generate ideas for an intervention tool kit to be tested in a proceeding project. This project has 3 objectives: 1) to determine the provider knowledge, attitudes, and current practice around disclosing sex-chromosome results in the clinical setting; 2) to identify parent and stakeholder desires for counseling and shared decision making; and 3) generate an actionable list of “good practices” and content for future development of a tool kit that can be hypothesis tested. These objectives center the interests and needs of the partners and reflect collective brainstorming and values-based discussions. We will conduct a provider survey, as well as stakeholder and parent focus groups and individual interviews (some of which will be enhanced by simulation - e.g. we will simulate a virtual visit and analyze provider-patient education and language). We will collaborate with community partners (Encircle) to identify stakeholders and patients, and recruit providers and patients from the UHealth clinics, as well as providers from federally qualified health centers in the region. The data collected from this pilot grant will be used as preliminary data to expand this project into a competitive proposal of an implementation science R01 through the NIH (e.g. NINR or AHRQ) to test a provider tool kit.

Current Status

2024-01-23
At the midpoint of this project we have collaborated with stakeholders to create a provider survey to understand provider knowledge, attitudes, and current practice around disclosing sex-chromosome results in the clinical setting. Our convenience sample of 640 respondents includes doctors, nurses, midwives, and genetic counselors. We are currently analyzing the survey results and plan to publish on the findings. Next steps include in-depth qualitative work with providers to deepen our understanding, and outreach to connect with community stakeholders.