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

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Background: Many parents who use donor-assisted conception to form their families struggle with telling their children about how they came to be. To address this problem, we created the Tool to Empower Parental Telling and Talking (TELL Tool), a digital, psychoeducational, and decision-support intervention for parents with children aged 1 to 16 years. Recently, we completed a pilot randomized controlled trial of the TELL Tool that showed feasibility, acceptability, and promise. However, in its current version, the TELL Tool does not include content for pregnant, expecting, or new parents with children less than 1 year of age. Objective: The aim of this formative study was to understand the views of pregnant, expecting, and new parents who used donor-assisted conception to form their families, along with the views of practicing clinicians about disclosure to expand the TELL Tool for use during the pregnant and early parenthood periods in the United States. Methods: Using a qualitative descriptive approach, a purposive sample of 20 parents and 10 practicing clinicians was recruited using a multifaceted recruitment plan. Each participant completed an in-depth, semistructured interview over Zoom that was recorded, auto-transcribed, checked for accuracy, and subsequently analyzed for themes. The rigorous and accelerated data reduction technique was incorporated into the analytic plan. Results: Parents comprised pregnant (n=6) or new parents (n=15), as one parent was both pregnant and had a child less than 24 months of age. The 10 clinicians, consisting of an array of multidisciplinary health care professionals, were practicing in fertility/infertility (n=4), obstetrics and women's health (n=3), and reproductive or family health (n=3) settings. Four themes were identified from the analysis. In "Reasons for What Matters Most," all parents spoke in favor of disclosing to their children and shared their reasons, while clinicians reported the time limitations in clinical settings. In "Managing Emotions, Conflicts, and Needs," a myriad of emotions, including conflict, were entwined in the parents' experiences, and clinicians recognized parents' feelings and needs as well as their own. Within "Desired Content of a Digital Tool," participants provided invaluable feedback on what material and content would be helpful to both parents and clinicians. Participants voiced the design features that would resonate or be useful to them or their patients/clients in "Recommended Design and Usability Features." Conclusions: Findings illustrate the distinct needs and desires of parents-to-be, new parents, and clinicians about providing expanded content for the TELL Tool that is informed by current evidence and end users, ultimately advancing best practices in this area. Future plans include testing the TELL Tool tailored to this additional developmental period of pregnancy/early parenthood.

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