Department of Women's and Children's Health, Karolinska Institutet, 171 77 Stockholm, Sweden.
Department of Public Health and Caring Sciences, Uppsala University, 751 22 Uppsala, Sweden.
Hum Reprod. 2021 Jan 25;36(2):395-404. doi: 10.1093/humrep/deaa299.
Does the theory of planned behaviour (TPB) contribute to understanding parents' intention to share information about genetic origin with their donor-conceived child?
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.
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.
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.
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.
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计划行为理论（TPB）是否有助于理解父母与供体受孕子女分享遗传信息的意图？
父母开始披露的意愿与他们相信披露会产生期望的后果以及希望遵守社会规范的愿望有关。
尽管越来越多的人认同供体受孕子女有权了解自己的遗传信息，但许多父母，尤其是异性恋夫妇，向子女披露信息仍然是一个挑战。TPB 已成功应用于许多与健康相关的背景下，可能有助于增加对父母决定向子女披露遗传信息的理解。
研究设计、规模、持续时间：这是一项对接受身份释放卵母细胞捐赠（OD）或精子捐赠（SD）的 7-8 岁子女的异性恋夫妇进行的横断面调查研究（n=83）或精子捐赠（n=113）。
参与者/材料、地点、方法：该研究是瑞典配子捐赠前瞻性纵向研究的一部分。在七家生育诊所接受卵母细胞或精子捐赠治疗的夫妇在 2005-2008 年被招募，并要求在接下来的 10 年内完成四次邮寄调查。本研究样本包括 7-8 岁的异性恋夫妇，他们有供体受孕的孩子。使用特定于研究的 TPB 披露问卷收集数据，并通过路径分析进行分析。
超过一半的 OD 或 SD 父母已经向孩子披露了供体受孕的情况（OD 为 61%，SD 为 58%）。在尚未开始披露过程的父母中，他们相信披露会产生期望的后果（P < 0.05），并且希望按照支持披露的社会规范行事（P < 0.01），这与他们在未来一年与孩子谈论供体受孕的意图呈正相关。相比之下，父母认为与孩子谈论其遗传起源的信心被发现与开始披露过程的意图呈负相关（P < 0.05）。治疗类型（OD/SD）以及与孩子是否存在遗传联系与父母的披露意图没有直接关联。
局限性、谨慎的原因：该研究是在瑞典身份释放捐赠法规的背景下进行的，这限制了其在其他人群中的普遍性。此外，流失可能会对研究结果引入选择偏差。未来需要使用更大的样本量的 TPB 披露问卷（TPB-DQ）进行研究，以验证该测量方法。
计划行为理论的应用强调了态度和社会规范对父母与子女分享有关供体受孕信息的意图的重要性。目前的结果增加了供体受孕披露的复杂性，可能有助于促进供体受孕后的开放沟通和家庭生活。
研究资助/利益冲突：瑞典研究委员会的资助。没有利益冲突的声明。
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