Available online 31 July 2022

AbstractObjective

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.

Section snippetsTool to Empower Parental Telling and Talking

To address these concerns, guided by a systematic process for developing patient decision aids as described by Coulter et al. (2013) and in conjunction with the International Patient Decision Aid (IPDA) Standards Collaboration for evaluating decision aids (Hoffman et al., 2018; Sepucha et al., 2018; Witteman et al., 2021), we created a digital decision aid prototype called the Tool to Empower Parental Telling and Talking (TELL Tool). The TELL Tool was designed as a decision support for parents

Design

We conducted the alpha test using a convergent mixed-methods design (Creswell & Plano Clark, 2018). Alpha testing typically involves qualitative interviews and direct observations of participants’ patterns of use (Elwyn et al., 2011). We incorporated a quantitative rating form to obtain a more complete understanding of participants’ perceptions about the prototype and to minimize participant burden. IPDA standards (i.e., usability, comprehensibility, acceptability) guided the data collection

Results

We obtained a sample of 16 participants: nine were parents and eight were clinicians, as one parent was also a clinician. Parents reported they used known (n = 6) or nonidentified (n = 3) donors and informed their children about their gamete (n = 3 sperm, n = 4 egg) or embryo (n = 2) donation origins. Eight of the parents identified as female, and one was male. The parents ranged in age from 45 to 63 years (M = 54.22 years), and most (n = 7) identified as White non-Hispanic. Two parents opted

Discussion

Participants overwhelmingly found the TELL Tool to be helpful and recommended elements that needed refinement. In keeping with the IPDA recommendations (Hoffman et al., 2018; Sepucha et al., 2018; Witteman et al., 2021), we completed the alpha test with parents and clinicians who practice with parents and children to obtain valuable insights and feedback about the prototype’s usability, comprehensibility, and acceptability.

Nurses who provide parents with decision support and education about

Conclusion

In summary, we conducted an alpha test using IPDA standards and a convergent mixed-methods approach to refine the TELL Tool prototype. Based on the findings, the prototype underwent refinement to enhance its content and improve technical issues before beta testing.

Uncited Reference

Ottawa Hospital Research Institute, 2021.

Acknowledgment

The authors thank Kevin Grandfield, Department of Biobehavioral Nursing Science, for editorial review.

Conflict of Interest

The authors report no conflicts of interest or relevant financial relationships.

Funding

Supported by the Association of Women’s Health, Obstetric and Neonatal Nurses “Every Woman, Every Baby” research grant award and the National Institutes of Health, National Institute of Nursing Research award No. R34NR0192781. The content is solely the responsibility of the authors and does not necessarily represent

Patricia E. Hershberger, PhD, APRN, FNP-BC, FAAN, is an associate professor, Department of Population Health Nursing Science and an affiliate professor, Department of Obstetrics and Gynecology, University of Illinois Chicago, Chicago, IL.

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Patricia E. Hershberger, PhD, APRN, FNP-BC, FAAN, is an associate professor, Department of Population Health Nursing Science and an affiliate professor, Department of Obstetrics and Gynecology, University of Illinois Chicago, Chicago, IL.

Agatha M. Gallo, PhD, RN, FAAN, is a professor emerita, Department of Human Development Nursing Science, University of Illinois Chicago, Chicago, IL.

Kirby Adlam, PhD, APRN-FPA, CNM, is a practicing midwife and visiting professor, Department of Human Development Nursing Science, University of Illinois Chicago, Chicago, IL.

Alana D. Steffen, PhD, is a research assistant professor and senior biostatistician, Department of Population Health Nursing Science, University of Illinois Chicago, Chicago, IL.

Martha Driessnack, PhD, PNP, RN, is an associate professor, School of Nursing, Oregon Health & Science University, Portland, OR.

Harold D. Grotevant, PhD, is a professor in the Department of Psychological and Brain Sciences and the Rudd Family Foundation Chair, University of Massachusetts Amherst, Amherst, MA.

Susan C. Klock, PhD, is a psychologist and professor in the Departments of Obstetrics and Gynecology and Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL.

Lauri Pasch, PhD, is a psychologist and clinical professor, Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, CA.

Valerie Gruss, PhD, APRN, CNP-BC, FAAN, is a clinical professor in the Department of Biobehavioral Nursing Science, the Director of ENGAGE-IL, and the Director of Interprofessional Education, College of Nursing, University of Illinois Chicago, Chicago, IL.

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© 2022 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.