Abstract
Background: The history surrounding the use of donated gametes and/or embryos is shrouded in secrecy due to long standing concerns about protecting future parents and their donor-conceived children from stigma and even unlawful birth [1]. Estimates indicate about 23% of parents worldwide disclose the genetic origins to their children [2], approximating the 14% disclosure rate we found in our 12-year longitudinal study among U.S. parents [3]. We created an innovative digital tool called the Tool to Empower Parental TeLling and TaLking or the TELL Tool to support parents’ decision processes about informing their 1–16 year old children about their genetic origins [4] to promote health and wellbeing. We then completed an early-stage evaluation (i.e., alpha testing) [5] followed by pilot testing [6] of the TELL Tool.
Purpose: Describe how the Decision-Making Process (DMP) Model shaped the TELL Tool development, subsequent research, lessons learned, and nursing practice implications.
Methods: In this descriptive overview, we detail: 1) how our DMP Model guided the creation of the TELL Tool through an inclusive, systematic, and iterative process; 2) a series of studies that used mixed methods to complete alpha testing; 3) a pilot, randomized controlled trial (RCT) to assess feasibility, acceptability, and preliminary effects; and 4) insights gained.
Results: The DMP Model was used as the underlying framework for creating the TELL Tool’s content. Recommendations from the International Patient Decision Aid Standards Collaboration and clinicians’ insights guided the development process. In the alpha test, parents and clinicians reported that most of the TELL Tool content was helpful in supporting parents’ decision-making processes surrounding telling their children. The pilot RCT showed that parents’ quantitative ratings were highly favorable (4.50 out of 5) to the TELL Tool content, substantiated by qualitative responses in the acceptability survey. Regarding feasibility and preliminary effects, 60 parents reported their disclosure status 1-month post-intervention and 77% of the TELL Tool group (n=23) disclosed genetic origins to their child(ren) compared to 54% (n=16) from the eBook control group. Lessons learned include insights into recruiting donor-conceived families, navigating technology issues, and identifying gaps and next steps in our research.
Notes
References:
1. ESHRE Working Group on Reproductive Donation, et al., Good practice recommendations for information provision for those involved in reproductive donation. Hum Reprod Open, 2022. 1:hoac001.
2. Tallandini, M.A., et al., Parental disclosure of assisted reproductive technology (ART) conception to their children: A systematic and meta-analytic review. Hum Reprod, 2016. 31(6):275-87 [seminal work].
3. Hershberger, P.E., et al., Oocyte donation disclosure decisions: A longitudinal follow-up at middle childhood. Hum Fertil (Camb), 2021. 24(1):31-45.
4. Hershberger, P.E., et al., Development of the Tool to Empower Parental Telling and Talking (TELL Tool): A digital decision aid intervention about children's origins from donated gametes or embryos. Digit Health, 2023. 9.
5. Hershberger, P.E., et al., Alpha test of the donor conception Tool to Empower Parental Telling and Talking. J Obstet Gynecol Neonatal Nurs, 2022. 51(5):536-547.
6. Hershberger, P.E., et al., A Randomized pilot trial of the donor conception Tool to Empower Parental Telling and Talking (TELL Tool) with their children about their genetic origins. J Pediatr Health Care, 2025. 39(2):175-188.
Sigma Membership
Rho
Lead Author Affiliation
University of Michigan, Ann Arbor, Michigan, USA
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Other
Research Approach
Other
Keywords:
Instrument and Tool Development, Primary Care, Interprofessional Initiatives, Gamete Donation, Oocyte Donation
Recommended Citation
Hershberger, Patricia Ensweiler; Miller, Alison L.; Richardson, Mary B.; Smith, Yolanda; Walsh, Alison; Gallo, Agatha M.; Adlam, Kirby; Klock, Susan C.; and Pasch, Lauri A., "Lessons Learned Using a Decision-Making Model to Develop the TELL Tool for Gamete Donation Families" (2026). International Nursing Research Congress (INRC). 78.
https://www.sigmarepository.org/inrc/2026/presentations_2026/78
Conference Name
37th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Toronto, Ontario, Canada
Conference Year
2026
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2026-07-28
Lessons Learned Using a Decision-Making Model to Develop the TELL Tool for Gamete Donation Families
Toronto, Ontario, Canada
Background: The history surrounding the use of donated gametes and/or embryos is shrouded in secrecy due to long standing concerns about protecting future parents and their donor-conceived children from stigma and even unlawful birth [1]. Estimates indicate about 23% of parents worldwide disclose the genetic origins to their children [2], approximating the 14% disclosure rate we found in our 12-year longitudinal study among U.S. parents [3]. We created an innovative digital tool called the Tool to Empower Parental TeLling and TaLking or the TELL Tool to support parents’ decision processes about informing their 1–16 year old children about their genetic origins [4] to promote health and wellbeing. We then completed an early-stage evaluation (i.e., alpha testing) [5] followed by pilot testing [6] of the TELL Tool.
Purpose: Describe how the Decision-Making Process (DMP) Model shaped the TELL Tool development, subsequent research, lessons learned, and nursing practice implications.
Methods: In this descriptive overview, we detail: 1) how our DMP Model guided the creation of the TELL Tool through an inclusive, systematic, and iterative process; 2) a series of studies that used mixed methods to complete alpha testing; 3) a pilot, randomized controlled trial (RCT) to assess feasibility, acceptability, and preliminary effects; and 4) insights gained.
Results: The DMP Model was used as the underlying framework for creating the TELL Tool’s content. Recommendations from the International Patient Decision Aid Standards Collaboration and clinicians’ insights guided the development process. In the alpha test, parents and clinicians reported that most of the TELL Tool content was helpful in supporting parents’ decision-making processes surrounding telling their children. The pilot RCT showed that parents’ quantitative ratings were highly favorable (4.50 out of 5) to the TELL Tool content, substantiated by qualitative responses in the acceptability survey. Regarding feasibility and preliminary effects, 60 parents reported their disclosure status 1-month post-intervention and 77% of the TELL Tool group (n=23) disclosed genetic origins to their child(ren) compared to 54% (n=16) from the eBook control group. Lessons learned include insights into recruiting donor-conceived families, navigating technology issues, and identifying gaps and next steps in our research.
Description
Our digital TELL Tool offers an accessible, research-based tool that aligns with our Decision-Making Process Model to support parents’ disclosure. User friendly, with multimedia and interactive components, the TELL Tool provides greater reach to geographically disparate and hidden populations. Future research and integration into global nursing practice is informed by lessons learned and identified gaps.