Understanding parents emotions surrounding disclosure to their donor-conceived children during participation in the tell tool intervention.

We sought to understand the emotional challenges of donor gamete and embryo recipient parents surrounding the disclosure of genetic origins to their children who were between 1 and 16 years. Parents who conceived their children through donated eggs, sperm, eggs and sperm, or embryo donation were recruited online to participate in a pilot, randomized-controlled trial to evaluate the feasibility of a novel and digital Tool to Empower ParenTal TELling and TaLking (TELL Tool) intervention. Within the TELL Tool intervention, parents who had not yet disclosed were asked to think about disclosing to their children and select the most challenging emotion(s) from among 11 emotions known to be associated with disclosure. In this analysis, we examined parents’ selection of emotions and their relationships to parental demographics, disclosure intent, child(ren)’s ages, and baseline anxiety measures. Of the 31 parent participants, most were married (n=21), or solo (n=7) and 3 were divorced or widowed. Parents used eggs (n=12), sperm (n=11), eggs and sperm (n=1), and embryo (n=7) donation; children ranged from 1-16 years (mean=4.5, SD=3.4, mode=1). Most parents (68%) chose up to 3 emotions (range 1-11, mode=1) they found most challenging. Overall, parents selected the emotion “worry” (61%), “anxiety” (45%) and “fear” (32%) most frequently. Most (71%) married or partnered participants chose “worry”, whereas only 43% of single parents chose “worry”. Additionally, 95% of participants who chose worry intended to tell their child about their donor origin, and 74% had children under 5 years old. Parents with children over 5 years chose “anxiety” most frequently (60%), while those with younger children (< 5) chose “worry” most frequently (70%). Many participants (52%) reported mild or greater baseline anxiety on PROMIS Bank V1.0 Anxiety (t-score >= 55), and those who selected “worry” had the highest baseline anxiety (56%) among all other emotions (range 6%-38%). Parents report “worry”, “anxiety”, and “fear” as top emotions when contemplating disclosure. Increased rates of worry and anxiety among partnered parents who intend to tell their children may be clinically significant. These findings can help guide future counseling sessions and highlight the need for attention to the emotional impact of disclosure on recipient parents. These findings are also of value to future modifications of the TELL Tool intervention.