Parents’ experiences telling children conceived by gamete and embryo donation about their genetic origins

Abstract

Objective To gain an in-depth understanding of parents’ experiences telling children conceived by gamete and embryo donation about their genetic origins. Design Qualitative, descriptive. Setting Families’ homes. Patient(s) Gamete or embryo donation recipient parents living in the United States and who told their children, from birth to 16 years, about their genetic origins. Intervention(s) Individual semistructured (n = 12) or dyadic (n = 2) parent interviews. Main Outcome Measure(s) Directed qualitative content analysis. Result(s) Fourteen families that comprised 16 gamete or embryo donation recipient parents and represented 24 donor-conceived children between the ages of 4 months and 16 years participated in the study. Single parents (n = 3) and both parents in most two-parent families (n = 9) led the initial telling conversations. Parents recounted personal short stories using language that was both developmentally and medically appropriate. Multiple strategies, including children’s books, were used by parents to aid them in their telling. The oldest donor-conceived children in each family were first informed of their genetic origins at birth (n = 10 families) or at 6 months (n = 1 family; “practice runs”) or from 3.5 to 12 years (n = 3 families). The telling conversations took place during routine family activities that naturally brought parents and children in close proximity, usually in the home. Conclusion(s) Awareness of the nuances of parents’ telling conversations with their children through the age of 16 years can help guide clinical counseling and the development of tools to aid parents in their telling conversations.

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

“…Other examples of evidence-based content within the TELL Tool are that parents who have told children aged 7 and younger often give a brief, storylike description of how they needed help to have a baby 60 , 61 and that many parents use children's books to begin or supplement their telling process. 62 , 63 …”

“…To provide content with details and insights from parents’ telling experiences, we completed research among US parents who used donated sperm, eggs, or embryos to conceive their children and who had talked with their children, ages 4 months to 16 years, about their genetic origins. 63 These findings were then incorporated into the TELL Tool content, primarily linked with the cognitive appraisal dimension because the findings provided insights, verbiage, nuances, and data about the decisions parents need to make regarding the who, what, when, and where within the telling process among US parents. 63 …”

“… 63 These findings were then incorporated into the TELL Tool content, primarily linked with the cognitive appraisal dimension because the findings provided insights, verbiage, nuances, and data about the decisions parents need to make regarding the who, what, when, and where within the telling process among US parents. 63 …”

“…This would obviate many logistical barriers to more traditional face-to-face delivery formats such as navigating work schedules and obtaining childcare. 5 , 63 Meanwhile, clinicians on our team reported a need for high-quality, evidence-based decision support tools for parents to augment the education and counseling groundwork that takes place in the clinical setting. Our team's prior successes with the CHOICES web-based intervention among young adults 45 – 47 and the ENGAGE-IL web-based platform of educational video modules, 48 , 90 as well as emerging data from other digitally delivered parent interventions that show good promise for intervention efficacy and expanding the reach of parent support into the digital space, 93 were also considered.…”

Zero or 18

“…13 The earlier children are informed, the better the outcome in terms of their emotional and identity development. 14 In the UK, clinics and regulatory bodies encourage parents to begin telling their children about their method of conception around the age of four or five. However, it is unclear at what age children should have access to the donor's identifying information or when parents should inform children about their right to do so.…”