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. 2022 Sep;51(5):536-547.
doi: 10.1016/j.jogn.2022.06.039. Epub 2022 Jul 31.

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking

Patricia E Hershberger, Agatha M Gallo, Kirby Adlam, Alana D Steffen, Martha Driessnack, Harold D Grotevant, Susan C Klock, Lauri Pasch, Valerie Gruss

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking

Patricia E Hershberger et al. J Obstet Gynecol Neonatal Nurs. 2022 Sep.

Abstract

Objective: To conduct an alpha test of the prototype of a digital decision aid to help parents disclose donor conception to their children, the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool).

Design: Convergent mixed-methods design.

Setting: Virtual interviews in places convenient to the participants.

Participants: A purposeful sample (N = 16) of nine gamete-donor and embryo-recipient parents and eight clinicians, as one parent was also a clinician.

Methods: We conducted cognitive interviews to explore participants' perceptions about the TELL Tool prototype and observe patterns of use. The International Patient Decision Aid Standards (i.e., usability, comprehensibility, and acceptability) guided the development of the qualitative interview guide and directed the qualitative analysis. We also collected data about participants' perceptions and ratings of the helpfulness of each of the prototype's webpages regarding parents' decision making about disclosure. Descriptive statistics were used to analyze the helpfulness ratings before we merged the two data sets to optimize understanding.

Results: Participants reported that the TELL Tool was a helpful digital decision aid to help parents tell their children how they were conceived. Most (93.7%) webpage rating scores indicated that the content was very helpful or helpful. The participants identified content and technical areas that needed refinement and provided specific recommendations such as adding concise instructions (usability), tailoring adolescent language (comprehensibility), and softening verbiage (acceptability).

Conclusion: Alpha testing guided by the International Patient Decision Aid standards was an essential step in refining and improving the TELL Tool prototype before beta testing.

Keywords: decision support techniques; disclosure; gamete donation; parent–child relationship; patient decision aids; third-party reproduction.

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Conflict of interest statement

Conflict of Interest The authors report no conflicts of interest or relevant financial relationships. The Board of Trustees of the University of Illinois holds copyright for the TELL Tool, University of Illinois Chicago Invention Identification Number UIC-2020-151. None of the authors receives monetary compensation for use of the tool.

Figures

Figure 1.
Figure 1.
Rating Form for the TELL Tool program: instructions and module 1 example.
See this image and copyright information in PMC

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