Abstract
STUDY QUESTION: How do heterosexual parents reason about and experience information-sharing with offspring following identity-release sperm donation? SUMMARY ANSWER: Sharing information about using donor-conception with offspring is a complex process at several levels, with the parent's personal beliefs and the child's responses serving as driving or impeding forces for the information-sharing process. WHAT IS KNOWN ALREADY: The overall view of disclosure in gamete donation has shifted from secrecy to openness, but there is still uncertainty among parents concerning how and when to tell the child about his/her genetic origin. Most research on donor-conceived families has focused on donation treatment under anonymous or known circumstances, and there is a lack of studies in settings with identity-release donations. STUDY DESIGN, SIZE, DURATION: A qualitative interview study among 30 parents following identity-release sperm donation treatment. Interviews were conducted from February 2014 to March 2015. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of heterosexual parents with children aged 7-8 years following identity-release sperm donation, participated in individual semi-structured interviews. MAIN RESULTS AND THE ROLE OF CHANCE: The analysis revealed one main theme: information-sharing is a process, with three subthemes; (i) the parent as process manager, (ii) the child as force or friction and (iii) being in the process. The first two subthemes were viewed as being linked together and their content served as driving or impeding forces in the information-sharing process. LIMITATIONS, REASONS FOR CAUTION: The fact that the study was performed within the context of the Swedish legislation on identity-release donation must be taken into consideration as regards transferability to other populations, as this may affect parents' reasoning concerning their information-sharing with the child. WIDER IMPLICATIONS OF THE FINDINGS: The present findings highlight the role of the donor-conceived child in the information-sharing process and may contribute to develop counselling that increases parents' confidence in handling children's reactions to information about their genetic origin. STUDY FUNDING/COMPETING INTERESTS: Financial support from The Swedish Research Council, The Family Planning Fund in Uppsala and Ferring Pharmaceuticals. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.