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

Abstract

ObjectiveTo 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). DesignConvergent mixed-methods design. SettingVirtual interviews in places convenient to the participants. ParticipantsA purposeful sample (N = 16) of nine gamete-donor and embryo-recipient parents and eight clinicians, as one parent was also a clinician. MethodsWe 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. ResultsParticipants 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). ConclusionAlpha testing guided by the International Patient Decision Aid standards was an essential step in refining and improving the TELL Tool prototype before beta testing.