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

Abstract

Objective.

To conduct an alpha test of the prototype of a digital decision aid 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 donor-gamete 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 (IPDA) 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 IPDA standards was an essential step in refining and improving the Tell Tool prototype before beta testing.

Precis

A mixed methods approach was used to complete alpha testing, which resulted in refinement of the Donor Conception Tool to Empower Parental Telling and Talking prototype.

Infertile and same-sex couples, single individuals, and those at high risk for transmitting genetic conditions to their children have increasingly turned to donated sperm, egg, or embryo treatment to establish their families. The United States has the highest number of egg donation cycles, which accounts for an estimated 25% of all egg donation cycles worldwide (Adamson et al., 2018). Embryo donation cycles that led to transfers increased more than 4-fold from 332 cycles in 2000 to 1374 cycles in 2013 (Kawwass et al., 2016). Because egg donation and embryo donation require in vitro fertilization (IVF), the Centers for Disease Control and Prevention (2021) indicated that in 2019 more than 10,520 neonates were born following egg donation and more than 1104 neonates were born following embryo donation. Intrauterine insemination cycles with donated sperm are not tracked by any national registry in the United States and thus are difficult to estimate. However, in a recent analysis of donor sperm use during IVF cycles, Gerkowicz et al. (2018) reported an upward trend and that 6% of cycles use donated sperm. In the last national report on this issue, the United States Congress and Office of Technology Assessment (1988) indicated that 30,000 children were born following sperm donation from 1986 to 1987.

For parents who successfully undergo third-party reproduction and achieve parenthood, telling their children about how they were conceived can be difficult. In the United States, donor recipients who become parents typically receive education and counseling about disclosure to their children during fertility treatment, but the type and content of this education is inconsistent, and few researchers have systematically examined the quality of early parent-clinician encounters and/or retention of information over time. What is known is that approximately 42% to 72% of sperm recipients (Lampic et al., 2021; Readings et al., 2011), 39% to 83% of egg recipients (Applegarth et al., 2016; Hershberger, Driessnack, et al., 2021; Lampic et al., 2021; Readings et al., 2011), and 82% of embryo recipients (MacCallum & Keeley, 2012) did not tell their children how they were conceived by the time they were 5 to 19 years old. Parents’ reluctance or inability to tell occurs despite evidence that demonstrates more positive family relationships and higher levels of adolescent psychological well-being when parents disclose before children reach 7 years of age (Ilioi et al., 2017). Important to nurses and other clinicians involved in women’s health care is the growing body of research that has consistently shown that mothers of donor-conceived children typically are the parents who inform their children about how they were conceived (Blake et al., 2010; Hershberger, Driessnack, et al., 2021; Jadva et al., 2009).

In a systematic review of 43 studies, Indekeu et al. (2013) reported that parents’ decisions about disclosure to children about how they were conceived were influenced by intrapersonal, interpersonal, social, and family life cycle factors. One of the first reports of artificial insemination using donated sperm (Barton et al., 1945) surfaced when the procedure was performed in secrecy. This milieu of secrecy continued into the 1980s, when intended parents were rarely if ever given information about the donor, and donors were typically never informed about whether their donations resulted in child(ren) (Frith, 2001). Justification for secrecy was largely related to the belief that male sexual potency was linked to reproductive potential, a reluctance among clinicians and donor recipient parents to confront highly sensitive and complex psychological issues, and the perception that secrecy would protect the parents and their donor-conceived children from stigma and legal ramifications, including illegitimacy (Brewaeys, 1996; Frith, 2001). Despite the historical tendency toward nondisclosure, a movement toward increased transparency has begun as parents have and continue to request guidance and information about how to disclose (Applegarth et al., 2016; Hershberger, Driessnack, et al., 2021; Isaksson et al., 2012; Visser et al., 2012).

There is a clear need to help parents tell their children that they were conceived via donor conception. This need is partially driven by a paradigm shift in which easily accessible direct-to-consumer genetic testing and a high consumer interest in genealogy (Bowen et al., 2018) have removed the control of information (Harper et al., 2016; Pasch, 2018; Phillips, 2016). Widespread reports exist of donor-conceived adults who were not told of their birth origins and who found out from direct-to-consumer genetic tests (e.g., Family Tree DNA, 23andMe) unexpectedly or with an intention to do so (Crawshaw, 2018; Klotz, 2016). The American Society for Reproductive Medicine (ASRM), the professional society that issues practice guidelines for reproductive medicine in the United States, has encouraged disclosure since 2004 (Ethics Committee of the ASRM, 2004, 2018). Recently, the ASRM moved away from using the term “anonymous” to identify gamete (i.e., egg, sperm) donors who are unknown to parents at the time of treatment. Instead, the recommended term is “non-identified” because of the acknowledgement that anonymity is vanishing with the prevalence of and access to direct-to-consumer genetic tests (Practice Committee of the ASRM & the Practice Committee for the Society for Assisted Reproductive Technology, 2021).

Although an understudied area, mounting evidence has shown that parents’ inability to tell or their decision to abide with secrecy leads to negative outcomes for children and families. For example, donor-conceived people who learn the details of their conception later in life reported several potential negative outcomes, including perceptions of familial deceit and mistrust (Crawshaw, 2018; Turner & Coyle, 2000) and feelings of anger toward parents about “being lied to” (Jadva et al., 2009, p. 1909). Parents who are unable to disclose also experience negative outcomes. In one of the few in-depth studies on non-disclosing donor recipient parents, researchers reported that parents felt “betrayal” and “unhealthy” and as if they “lived a virtual lie” by not disclosing (Daniels et al., 2011, p. 2785).

Tool to Empower Parental Telling and Talking (TELL Tool)

To address these concerns and 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 TeLlling and TaLking (the TELL Tool). The TELL Tool was designed as a decision support for parents who used donated gametes or embryos to tell their children, aged 1 to 16 years, about how they were conceived. The tool consists of four web-based, interactive, multimedia (e.g., audios, videos) modules that parents can tailor to their children’s ages and can view on their phones, computers, or other internet devices. The Experiential Learning Theory guided the delivery of the interactive and multimedia content (Kolb et al., 2011), and the Decision-Making Process Model (Hershberger, Driessnack, et al., 2021) guided the development of the content. Using the Decision-Making Process Model as a guide, the content is based on evidence-based information; findings from our long-standing research with parents, children, and donors (e.g., Driessnack & Gallo, 2013; Grotevant et al., 2017; Hershberger, Driessnack, et al., 2021; Hershberger et al., 2007; Klock, 2014; Pasch, 2018); and the collective clinical expertise of the investigative team. Jean Piaget’s Theory of Cognitive Development (Scott & Cogburn, 2022) informed the categorization of the children’s ages into three groups (i.e., 1 to 7 years, 8 to 12 years, 13 to 16 years).

Early versions of the TELL Tool underwent iterative rounds of development with the investigative team, a Parents Advisory Board, a technology team, and other stakeholders (e.g., donor conceived people). We used findings from our prior research (Hershberger, Gallo, et al., 2021) to develop the storyboards (e.g., patient experiences, stories, testimonies) that are an integral component of decision aids (Elwyn et al., 2011). The TELL Tool is delivered through a password-protected, digital platform and consists of 181 viewable webpages across all four modules that are tailored to the three children’s age categories. Parents’ individual responses to multiple decision points are embedded within the program. Because of tailoring and embedded decision points, parents do not view all 181 webpages but rather a subset that corresponds to their children’s ages and their decision point selections. Documentation of the systematic development process of the TELL Tool is critical, as is the involvement of multiple professionals, stakeholders, and end users to ensure its validity, reliability, and usability (Coulter et al., 2013; Elwyn et al., 2011). Additional details about the TELL Tool and its development and content are reported elsewhere (Hershberger, Gallo, et al., 2022). Therefore, the purpose of this study was to conduct an alpha test of the TELL Tool prototype. In keeping with IPDA quality standards, the alpha test is completed with parents who previously faced the decision and clinicians who interact with parents and are not members of the research team (Coulter et al., 2013; Elwyn et al., 2011). The alpha testing is then followed by beta testing in which the aid is used in a real-world setting with parents facing the decision to tell and their clinicians (Witteman et al., 2021).

Method

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 and analysis (Coulter et al., 2013). Institutional Review Board approval was obtained from the University of Illinois Chicago before participant recruitment and accrual.

Sample and Setting

We obtained a purposeful sample of 16 donor-gamete and embryo-recipient parents and clinicians after announcements were placed in online informational, professional, and support groups that involved these populations. We also made announcements about the study at lectures, meetings, and conferences attended by the principal investigator and first author (PEH), who encouraged wide dissemination about the study to attendees to further promote recruitment. We employed group characteristics sampling (Patton, 2015), a form of purposeful sampling, to ensure that a range of parents by donation type (e.g., sperm, egg, embryo), family type (e.g., heterosexual couples, same-sex couples, single parents), and clinicians by practice type (e.g., nurses, psychologists) were represented in the sample. As participants were enrolled, we modified recruitment materials to reflect the type of participant characteristics needed (e.g., sperm donation receipt parents, psychologists, single parents). Based on our prior research (Gallo et al., 2010; Gallo et al., 2014) and IPDA standards (Coulter et al., 2013; Sepucha et al., 2018; Witteman et al., 2021), we determined that the sample size was sufficient for the alpha testing. Interviews were conducted in quiet, private locations in the United States, such as the participants’ homes, where virtual video conferencing was available. The study took placed during the COVID-19 pandemic and so we conducted virtual interviews.

Data Collection and Measures

Data collection occurred from January 2021 to February 2021. Each participant completed a virtual interview that incorporated techniques recommended for alpha testing, including cognitive interviewing techniques, think-aloud, and verbal probing (Elwyn et al., 2011). Cognitive interviewing can be used to collect data about how participants understand, mentally process, and react to materials presented to them (Willis, 2005, 2015). The interview guide was developed by the authors using IPDA standards (Coulter et al. 2013), prior experience with cognitive interviews for intervention development (Gallo et al., 2010; Gallo et al., 2014), smartphone application development (Gruss & Hasnain, 2020), and findings from alpha testing research (Savelberg et al., 2017). Each interview began with the following broad question, “Think aloud about any thoughts that went through your mind as you navigated or as we navigate this computerized TELL Tool.” Verbal probes were used to elicit information about the usability, comprehensibility, and acceptability of the TELL Tool. When appropriate, we asked participants to demonstrate any technical challenges or show contextual concerns that they experienced with the TELL Tool during the interviews to allow for direct observations. See Table 1 for details about the interview guide.

Table 1.

Interview Guide

Beginning Interview
Begin with broad opening question	Think aloud about any thoughts that went through your mind as you navigated or as we navigate this computerized TELL Tool.
Then, allow the parent(s) or the clinician(s) time to respond to the question in their own words at their own pace. Use the following probes if the participant(s) have not addressed the topic, issue, or concern.
International Patient Decision Aid Component & Definition	Probes (Examples)
Usability Capable of being used Convenient Able to provide good service/usefulness	• Do you find any features difficult to use? If so, can you show me which ones and why?  • Would you say the TELL Tool is “user-friendly”? Why or why not?  • Are there features that need to be added or deleted to help you navigate the tool? If so, what features should we add or delete?  • I noticed you had a comment on the rating scale about the technology of [XX] webpage/module. Can you tell me more about why you rated it in this way?
Comprehensibility Readily comprehended or understood Intelligible	• Do you find the graphics helpful or confusing?  • Are there any parts of the TELL Tool that are unclear to you?  • Are the terms we use about donor conception understandable to you?  • (Clinicians only) Do these terms seem appropriate for your patients?
Acceptability Adequate or appropriate Satisfactory in meeting a need or requirement	• Explain if the content within the TELL Tool is or is not helpful to parents who have not told or need help with telling.  • What concerns do you think other parents would have about their telling conversations that are not discussed in the TELL Tool?  • Is anything missing from the TELL Tool that you/your patients would find helpful? If yes, please explain what is missing.
Closing Interview
Assess for Variation	Is there any part of your experience (or clinical practice) with telling your child(ren)/counseling your patients that was not discussed that you feel is important regarding the TELL Tool that you would like to share at this time?
Affirm Gratitude	Thank you for taking the time to share your experience with me.

Participants could complete the interview individually or in a small group, and parents with partners could opt to complete the interview jointly. One couple opted for a joint interview session, and two other parents opted for a small group session. The remaining interviews were completed individually. All the interviews were conducted virtually through Zoom (Zoom Video Communications, 2021), at a place and time that was mutually agreeable to the participant(s), and the first author (PEH) who conducted the interviews. The interviews ranged from 22 to 72 minutes (M = 47 minutes) and were recorded and transcribed using Zoom technology. Each transcription was checked for accuracy, and all identifying information was removed to mitigate privacy risks. The first author (PEH) took field notes during each interview session.

The TELL Tool prototype consisted of four modules and 181 viewable webpages. We developed a quantitative rating form that aligned with each webpage (Figure 1). Participants were asked to view the TELL Tool and complete the rating form for each webpage they viewed before their interview session. On a Likert scale from 1 (not at all helpful) to 5 (very helpful), participants rated the webpages on how helpful they were in providing decision support for parents to disclose to their children how they were conceived. The rating form also included instructions for participants to make notes or comments about each webpage and their overall reaction to each module and the prototype. Not all 181 webpages needed to be viewed because the content was tailored by children’s ages and by participants’ individual responses to various decision points. Participants’ responses to the rating form were incorporated into the interviews as appropriate to allow for more depth and focus during the interview session.

Figure 1.

Rating Form for the TELL Tool program: instructions and module 1 example.

Data Analysis

In keeping with a convergent mixed methods approach, we first analyzed the two data sets separately using quantitative and qualitative analytic procedures, and then the two data sets were merged (Creswell & Plano Clark, 2018). For the quantitative data, we used descriptive statistics to analyze the helpfulness scores obtained from the TELL Tool rating forms. Directed content analysis (Hsieh & Shannon, 2005) using the preset alpha testing components of usability, comprehensibility, and acceptability guided the qualitative data analysis.

Two members of the research team (PEH & AMG) developed initial computer-generated data matrices with shortened phrases and sentences of participants’ responses to the interviews and the opened-ended questions on the rating form to organize the data into the three preset IPDA alpha testing components (Miles et al., 2020). Through a series of matrices that enabled comparisons across the data, we coded participants’ positive comments, neutral comments, and recommendations in each of the preset components. The two research team members consulted weekly during data analysis to debrief and to compare and evaluate analytic processes, ensure incorporation of the field notes, and discuss and resolve any differences through consensus.

After the separate analyses, we merged qualitative data (i.e., interviews, opened-ended responses) and quantitative data (i.e., helpfulness ratings scores). We then compared data within and across parents and clinicians and compared the positive, neutral, and recommendation comments. Two peer debriefing meetings were held with all members of the research team to collectively obtain additional insight into the analysis. All investigators, technology team members, and our Parents Advisory Board then provided insight and direction for refinements to the TELL Tool as it underwent iterative revisions.

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 non-identified (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 not to respond to the race and ethnicity questions. Most parents (n = 6) were married to the same partner since the time of their donation treatment, two were divorced, and one was single and never married. Of the six married couples, one couple opted to have both partners participate. The parents identified as heterosexual/straight (n = 8) or lesbian (n = 1).

The eight clinicians, which included the parent who was also a clinician, were all female and were psychologists or family therapists who counseled donor-gamete and embryo-recipient parents and/or families (n = 4), nurse practitioners who practiced extensively in fertility clinics (n = 2), or pediatric mental-health nurse practitioners with extensive experience in treating children and families (n = 2). The clinicians’ years in clinical practice ranged from 10 to 25 or more years, and they were between 51 to 74 years of age (M = 59.75 years). Most (n = 7) were White non-Hispanic. One clinician opted not to respond to the race and ethnicity questions. The clinicians identified as heterosexual/straight (n = 7) or bisexual (n = 1). None of the clinicians were members of the research team.

The qualitative comments and recommendations of the parents and clinicians are provided below using the three IPDA standards for alpha testing of usability, comprehensibility, and acceptability. To enhance trustworthiness of the convergence of the qualitative and quantitative data, verbatim quotes are used that correspond to the numeric codes; parents are depicted with the prefix “P” and clinicians with the prefix “C.” The individual partners within the married couple are further denoted by an “a” and “b” suffix.

Overall Findings

Parents and clinicians (n = 14) rated 1156 TELL Tool webpages (range 13 – 181, M = 82.57; Table 2). Of the webpages viewed and rated, participants rated 93.7% as 5 (very helpful) or 4 (helpful). They rated the remaining webpages as less helpful. Only 0.6% of the webpages that were rated scored 1 (not at all helpful). These quantitative findings were corroborated by participants’ statements about the TELL Tool overall: “I really appreciate how detailed and thorough this [TELL Tool] is. I would have loved to have it when my children were younger. I like that you provide genuine practical tools, not just theory” (P108). “Wow – great program in my opinion! I look forward to when I’m able to refer my clients to this program” (C115).

Table 2.

Findings from the Parent and Clinician Quantitative Rating Form

Participant Code	Quantitative Rating Options					Total Number of Webpages Rated (N = 181)
	5 (very helpful)	4	3 (somewhat helpful)	2	1 (not at all helpful)
P102	N/A	N/A	N/A	N/A	N/A	N/A
P103a	79 (86.8%)	7 (7.7%)	1 (1.1%)	2 (2.2%)	2 (2.2%)	91
P103b	2 (15.4%)	9 (69.2%)	1 (7.7%)	1 (7.7%)	0	13
P104	3 (17.6%)	8 (47.1%)	5 (29.4%)	1 (5.9%)	0	17
P105	N/A	N/A	N/A	N/A	N/A	N/A
P106	82 (97.6%)	2 (2.4%)	0	0	0	84
P107	71 (85.5%)	10 (12%)	0	2 (2.4%)	0	83
P108	105 (98.1%)	2 (1.9%)	0	0	0	107
C113	181 (100%)	0	0	0	0	181
C114	18 (58.1%)	10 (32.3%)	3 (9.7)	0	0	31
C115	103 (99%)	1 (1.0%)	0	0	0	104
C116	36 (66.7%)	13 (24.1%)	3 (5.6%)	1 (1.9%)	1 (1.9%)	54
C117	105 (99.1%)	0	1 (0.9%)	0	0	106
C118	51 (38.3%)	61 (45.9%)	17 (12.8%)	4 (3%)	0	133
C119	70 (74.5%)	19 (20.2)	5 (5.3)	0	0	94
P&C120	6 (10.3%)	29 (50%)	13 (22.4%)	6 (10.3%)	4 (6.9%)	58
Totals	912 (78.9%)	171 (14.8%)	49 (4.2%)	17 (1.5%)	7 (0.6%)	1156

Note. Percentages shown in parenthesis are rounded to nearest 10^th when appropriate. P = parent, C = clinician, N/A = not applicable/did not respond, a and b = individual partner within a couple.

When participants were probed about their reason(s) for their ratings during the interviews, they provided positive comments and recommendations to improve the usability, comprehensibility, and acceptability of the TELL Tool.

Usability

Fourteen participants (seven parents, seven clinicians) were positive about the usability of the TELL Tool and provided specific suggestions for its refinement. Their comments addressed the overall ease of using and navigating through the modules and webpages; the use of photos, images, and videos to minimize memory load and engage users; the volume levels on some webpages; and the length of the TELL Tool. A major suggestion to improve navigation was to add concise instructions that are upfront, visible, and retrievable. Participants recommended that the instructions could be a short “guidance” (P103) video that gives estimated times for the overall TELL Tool, each of the four modules, and each webpage. While participants indicated that the ability to stop at any point in the TELL Tool was helpful, they reported minor but important navigation problems, such as the use of a “button forward” instead of an arrow between webpages (P108). However, these problems did not impede their ability to progress through the TELL Tool or result in anyone missing important information.

Eight participants remarked that they found the photos, images, audios, and videos helpful but noted that a few of the photos and images were blurred. Five participants suggested that examples of parents telling their children at different ages would allow for more visual interaction and better engage users as opposed to an audio format. Three participants suggested using a photos stock site to select professional and appealing individual and family photos; employing adult and child actors for the videos; or using a website builder that is easy, cost-effective, and has many video features.

Participants (n = 3) reported several areas where the audio or video volume levels varied and were distracting between webpages. Because of the focus on parents developing a plan to tell their children, one parent encouraged the development of a “cheat sheet” (P102) so that parents could better remember their ideas and choices to minimize memory load.

Participants commented on the length of the TELL Tool modules and the amount of text and information on some webpages. Clinicians (n = 1) and parents (n = 2) suggested that the TELL Tool could be shortened to “be more concise and to the point” (C116). Two clinicians thought the TELL Tool could be useful to health care providers and counselors and could be used to apply for professional continuing education units: “I learned a lot; it’s almost as though I should have gotten CEUs for completing the TELL Tool” (C117), and another said, “This could easily be for providers and counselors and I could easily see clinicians using the tool or a version of it” (C114).

Comprehensibility

Most participants (n = 13) found the information in the entire Tell Tool and in specific modules and webpages straightforward, clearly described, and easy to understand. One parent reinforced the comprehensibility of the TELL Tool for parents’ emotional health: “The tool lets [parents] know you are not alone. This is one of its most significant attributes” (P108). Because we probed, all participants (N = 16) recommended specific refinements to increase the clarity of information so that parents could easily understand the concepts presented. Most recommendations focused on changing, adding, or deleting specific words or phrases (n = 15) and/or videos or photos (n = 4). For example, participants recommended the use of familiar and correct medical terms and modification of a mother-baby video.

Even though the TELL Tool presented images and narrations about different types of families (e.g., straight, gay, single-parent, two-parent), three parents remarked that this information should be put “up-front” (P105) in the opening module so that parents know that the TELL Tool was created for all types of parents and families. All participants recommended changes in information on child and parent emotions such as adding content on shame and guilt, resemblance talk and self-talk, and the encouragement that parents “can do it” (P103a).

Most (n = 15) recommendations addressed the why, how, what, and when to tell the child. These included clearly stating that parents can start telling children at any age, reporting that parents are “glad” they tell and feel “relieved” after telling their children (C116), adding and clarifying content about what parents in two-parent families can do if both parents do not agree on telling, using correct medical terms, and modifying a mother-baby video. Ten participants provided comments about the importance of parents communicating with older children and adolescents. Two clinicians recommended that the information tailored for adolescents be refined in a teen-friendly way, such as opening the adolescent section with a welcome using a teen voice and emphasizing that parents should be prepared for questions that teens will ask, such as information about the donor.

Acceptability

Individual comments by 15 participants were highly favorable and affirming of the TELL Tool’s appropriateness and applicability for parents who want to tell their children about their origins. Their affirming comments addressed various topics that included the focus on parent and child emotions and coping and parent experiences with telling through examples that portrayed various families and family stories. Other affirming comments were related to the representation and inclusion of multiple races and ethnicities throughout the TELL Tool; the appropriate tone, pace, and normalizing conversation of the narrator and expert voices; and the nature of the information provided (e.g., strategies in the journals, guides, maps). Specifically, participants affirmed and validated Module 3 in which information about creating the telling plan is provided: “Your donor language was spot on and how different people use different phrases…all of that was very good” P107. Participants described information about the use of supplemental strategies such as books or songs to enhance telling as important and beneficial.

Even though participants were satisfied with the Tell Tool information and agreed that the information was appropriate and helpful to parents, they provided recommendations to refine or add information for balance and completeness. For example, to provide balance and completeness to the existing content, one clinician recommended the TELL Tool begin with an explanation of why people are afraid to tell their children, include more emphasis on cultural barriers, and to “soften” the wording so as not to “scare’” parents (C116) about when it may be necessary to tell in the event the child has a health challenge, such as cancer. Others suggested inserting additional non-traditional family pictures that include people of color and LGBTQ+ people in the videos and photos to balance the visuals across races, ethnicities, and family types.

Regarding the applicability of information, participants recommended refining and adding specific content about what books, videos, and other resources parents can use at different ages and when to read books or talk with children; adding a parents’ blog to increase social interaction among parents; changing wording on some webpages (e.g., “donor conception story” versus “disclosure”); deleting specific wording or phrases (e.g., “special.” “stifling”); and adding words (e.g., “resemblance talk”).

Prototype Refinements

Based on our findings, we refined the TELL Tool to incorporate almost all participant recommendations before the beta testing stage. For example, to enhance usability, we clarified instructions about how to navigate the digital technology. We removed redundant content and developed videos to replace some of the audio content. We revised, modified, moved, or added specific content (e.g., disagreement between partners about telling, parent’s emotional responses after telling, a teen’s voice) to improve comprehensibility. To make the TELL Tool more acceptable, we added more photos of families of color and resources about managing parental grief related to infertility.

Discussion

Participants overwhelmingly found the TELL Tool to be helpful and recommended elements that needed refinement. In keeping with 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.

We incorporated methodological enhancements into the alpha test. First, we defined the IPDA components of usability, comprehensibility, and accountability to enhance transparency and direct the interview probing, which added clarity to the IPDA recommendations (Coulter et al., 2013). Second, although most alpha tests are conducted using qualitative interviews, we incorporated a quantitative helpfulness rating for each of the TELL Tool’s webpages. The rating form also provided data about which of the 181 webpages each participant viewed and when appropriate helped to shape the questioning during the qualitative interviews. Incorporating the rating form into the alpha test allowed for more precise and insightful data to be obtained and provided multiple sources of data, which increased the validity of the findings by allowing a more complete understanding of participants’ perceptions (Creswell & Plano Clark, 2018). We found that most participants (88%) agreed to complete the rating form and participate in the qualitative interviews. Lastly, these findings add to the evidence on alpha testing for decision aids that focus on health promotion; most decision aids are disease focused (Stacey et al., 2017).

Implications

We noted several research and practice implications. Nurses and other clinicians practicing in women’s health (e.g., obstetrics, gynecology, family planning) are well positioned to assess whether women who successfully used donated sperm, eggs, or embryos have told their children about how they were conceived. Providing decision support and education about telling strategies and psychosocial issues related to the telling process are vital to improve the health and health care of these women and their families. Mothers who have not told or who want education about the telling process can be directed to the TELL Tool research laboratory for updates about the TELL Tool (Hershberger, 2022). Although the beta test is underway and is the next research step for the TELL Tool, future research to survey nurses about their education and counseling practices regarding telling processes would be beneficial. Research about the interface between parents, nurses, and the TELL Tool itself will provide insight about implementation of the Tool into clinical practice, which is also needed.

Limitations

There are limitations to our study. Racial and ethnic diversity was limited. Future TELL Tool beta testing will need to include parents and clinicians from diverse racial and ethnic groups. Another limitation is that not all participants completed the rating form. Despite this limitation, 88% of participants used the rating form, which facilitated the qualitative interviews and provided additional data that resulted in a deeper and more precise understanding of participants’ recommendations.

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.

Callouts.

1. Parents often report they are unaware of how or when to tell their children about donor conception, and they request strategies and tools for disclosing.

2. Most participants found the TELL Tool prototype helpful and identified areas where refinement was needed.

3. Nurses who provide parents with decision support and education about telling strategies can improve the health of parents and their families.