Study: Expanding the Digital, Donor-Assisted Conception Tool to Empower Parental Telling and Talking (TELL Tool) Intervention to the Pregnant and Early Parenthood Periods: Findings From a Qualitative Study (DOI: 10.2196/79024)
Related study: A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins (DOI: 10.1016/j.pedhc.2024.06.006)
Many families who use donor-assisted fertilization intend to tell their children about their origins, only to find that a decade later, they still haven't found the right words.
To bridge that gap, Patricia Hershberger, professor at the U-M School of Nursing, and her team created the Tool to Empower Parental Telling and Talking-the TELL Tool-a digital resource suite that helps parents discuss conception origins with children ages 1-16.
A preliminary study on the second generation of TELL Tool, which will support expectant parents, new parents and clinicians, appears in a recent issue of JMIR Formative Research. It was funded by the American Society for Reproductive Medicine Research Institute.
A culture of silence
The TELL Tool emerged from a 12-year longitudinal study in which Hershberger and other fertility experts from around the country followed families that used donor gametes from pregnancy through their children's middle childhood. Researchers learned that only about 14% of the sampled parents told their children about their origins.
"I recall one mother who was participating in our study, with tears in her eyes saying, 'Patricia, can you please help me? I want to tell my sons but I don't know where to start or what to do,'" Hersherger said.
Historically, conception origins were kept secret by parents, and this position was supported by the clinical community. However, researchers say the current position supporting transparency took on a sense of urgency with the rise of direct-to-consumer DNA kits, tools that frequently spark uncomfortable disclosures by revealing unexpected biological ties, and the need for genetic health literacy.
From anxiety to confidence
To help parents shape conversations, the TELL Tool utilized four interactive modules, including one module with 14 real-world scenarios, such as handling a child's questions about a donor or managing public vs. private information. For each situation, the module gives parents information designed to build confidence during the conversation.
In a 2025 randomized control trial reported in the Journal of Pediatric Health Care, the TELL Tool showed promising results. Over a 12-week period, parents in the study reported increased confidence and competence and decreased anxiety.
Behavior was also significantly impacted, with 77% of the parents who used the TELL Tool video modules choosing to disclose conception origins to their children. By contrast, only 54% of the control group (who used a standard e-book) and 14% of the original longitudinal sample reached that milestone.
Wrote one study participant: "The content is very important and very complete.
Integrating children and real scenarios help the audience connect."
Reaching parents earlier
To create the newest iteration of TELL Tool, the research team interviewed pregnant and new parents to reach families even sooner, and also incorporated clinicians' feedback.
Notably, researchers identified a gap between parents' needs and clinicians' capacity to support conception disclosure. While all parents in the study planned to be transparent with their children, clinicians felt constrained by limited time and training, leaving them unable to adequately address the emotional burdens parents face.
Several parents perceived that no provider had asked them about communicating their child's origins. One parent said, "…and no one, no health care professional, has talked with me about that at all." But clinicians said they felt unqualified or rushed; one said she was so pressed for time that she "hadn't thought of" bringing up disclosure.
Challenges parents associated with disclosure included emotions like fear of rejection and shame. One parent said: "Her, you know, accepting what I did. And not finding fault in it at the end of the day is my greatest fear." Several parents mentioned conflicts with partners about when to disclose.
"This will make a big difference for donor-assisted families by helping parents navigate conversations and by supporting their child's health as they grow," said Mary Richardson, project director, research specialist. "It will also support health care providers by bridging gaps in information, which is central when helping families navigate this journey."
Next steps
The team will use data collected from the JMIR study to build and test a version of the TELL Tool with pregnant and new parents, and clinicians. Hershberger said they've applied for an NIH grant to complete a larger randomized controlled trial-another step toward making the TELL Tool available for parents.
"Our evidence to date, and what donor-conceived people have said, indicates that the health of parents, their children, and the relationships between parents and children, are better when parents tell their children about how they came to be," Hershberger said. "However, what we don't know yet are 'healthy' ways to have parents tell children versus ways that cause harm. My team and I hope to uncover these components."
