Understanding parents' intention to disclose the donor conception to their child by application of the theory of planned behaviour

STUDY QUESTION: Does the theory of planned behaviour (TPB) contribute to understanding parents' intention to share information about genetic origin with their donor-conceived child? SUMMARY ANSWER: Parents' intention to start disclosure was associated with beliefs that disclosure would have desired consequences and a desire to act in accordance to societal norms. WHAT IS KNOWN ALREADY: Despite a growing consensus on donor-conceived offspring's right to information about their genetic origin, disclosure to the child remains a challenge for many parents, particularly heterosexual couples. TPB has successfully been applied to many health-related contexts and may contribute to increase understanding of parents' decision-making about disclosing the genetic origin to their children. STUDY DESIGN, SIZE, DURATION: A cross-sectional survey study of heterosexual couples with children aged 7-8 years following identity-release oocyte donation (OD, n = 83) or sperm donation (SD, n = 113). PARTICIPANTS/MATERIALS, SETTING, METHODS: The study is part of the prospective longitudinal Swedish Study on Gamete Donation. Couples accepted for oocyte or sperm donation treatment at seven fertility clinics were recruited in 2005-2008 and requested to complete four postal surveys in the following 10 years. The present study sample includes heterosexual couples with donor-conceived children aged 7-8 years. Data were collected with the study-specific TPB Disclosure Questionnaire and analysed with path analysis. MAIN RESULTS AND THE ROLE OF CHANCE: More than half of parents following OD or SD had already disclosed the donor conception to their child (OD 61%, SD 58%). Among parents who had not yet started the disclosure process, the belief that disclosure would have desired consequences (P < 0.05) and a desire to act in accordance to social norms favouring disclosure (P < 0.01) were positively associated with their intention to talk with their child about the donor conception during the upcoming year. In contrast, perceived confidence to talk with the child about his/her genetic origin was found to be negatively associated with the intention to start the disclosure process (P < 0.05). Type of treatment (OD/SD) and the existence or absence of a genetic link to the child were not directly associated with parents' disclosure intentions. LIMITATIONS, REASONS FOR CAUTION: The study was performed with heterosexual couples within the context of the Swedish legislation on identity-release donation, which limits the generalizability to other populations. Also, attrition may have introduced selection bias to the study findings. Future studies using the TPB Disclosure Questionnaire (TPB-DQ) with larger samples are needed to validate this measure. WIDER IMPLICATIONS OF THE FINDINGS: Application of the theory of planned behaviour highlighted the importance of attitudes and social norms for parents' intention to share information about the donor conception with their child. The present results add to the complexity of disclosure of donor conception, and may contribute to promote open communication and support family life following donor conception. STUDY FUNDING/COMPETING INTEREST(S): Financial support from the Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A