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‘I have to remind myself that everyone’s search is different’: experiences and outcomes of searching and not searching for donor connections among donor conceived adults
Human Reproduction ( IF 6.0 ) Pub Date : 2024-09-17 , DOI: 10.1093/humrep/deae210 S Zadeh 1 , C Jones 2 , V Jadva 3
Human Reproduction ( IF 6.0 ) Pub Date : 2024-09-17 , DOI: 10.1093/humrep/deae210 S Zadeh 1 , C Jones 2 , V Jadva 3
Affiliation
STUDY QUESTION What are the experiences and outcomes of donor conceived adults who are actively searching for, open to contact with, or not searching for donor connections? SUMMARY ANSWER Most participants were actively searching or open to contact, and 67% had found or been found by a connection; finding or not finding experiences were complex. WHAT IS KNOWN ALREADY There is variation among donor conceived individuals in their interest in donor connections. Individual reasons for searching for connections, and which donor connections are searched for, also vary. Most research studies have focussed on individuals who are actively searching for their donor or donor siblings. Global increases in direct-to-consumer DNA testing and social media participation mean that connections may be made to individuals unaware of their (or their relatives’) involvement with donor conception. These social and technological changes have also increased the chances of donor conceived individuals being contacted without expecting or desiring contact. STUDY DESIGN, SIZE, DURATION This study included 88 donor conceived adults, in the UK, who participated in an online multi-method survey between January and August 2022. The survey was designed in consultation with staff and volunteers from the UK’s largest community networks for donor conception families (Donor Conception Network, DCN) and donor conceived people (Donor Conceived Register Registrants’ Panel, DCRRP). It was piloted by five donor conceived people before its launch. Participants were recruited with assistance from DCN and DCRRP, via social media, university mailing lists, and snowballing. PARTICIPANTS/MATERIALS, SETTING, METHODS Participants were mostly female (n = 65, 74%) and sperm donor conceived (n = 79, 90%). Of the 88 participants, 39 (44%) were actively searching for their donor connections, 44 (50%) were open to contact but not actively searching, and 5 (6%) were not searching. Questions were closed (yes/no, rating scale, or multiple choice) or open-ended, addressing experiences of donor conception, searching for connections, and finding or not finding connections. Data were analysed both quantitatively and qualitatively. MAIN RESULTS AND THE ROLE OF CHANCE Quantitative results showed no differences between the groups on any demographic variables or in when or how they found out about being donor conceived, and no differences between active searchers and those open to contact in whether they had found their donor connections. Significant differences were found between groups in their interest in their genetic history and the perceived importance of genetics to their sense of identity, with active searchers being more interested and rating this as more important than those open to contact. Methods of searching significantly differed across groups, with active searchers using genetic testing and social media more than those open to contact. 59 participants across all groups (active searchers (n = 29, 74%), open to contact (n = 27, 61%), not open to contact (n = 3, 60%)) had found or been found by a donor connection. Experiences of finding or not finding donor connections among participants actively searching or open to contact were captured by the theme complexities, with six subthemes: uncertainties in searching and relating; searching as open-ended; different donor connections, different experiences; expectations and realities; searching and finding or not finding as catalysing change; and experiences of other donor conceived people. LIMITATIONS, REASONS FOR CAUTION Most participants were members of relevant community organizations. As is common in research in this area, the sample was mostly female and conceived using donor sperm. Donor conceived people who are disinterested in donor connections may be unlikely to participate in research on this topic. WIDER IMPLICATIONS OF THE FINDINGS The nature and impact of the search process itself should be considered when developing appropriate mechanisms of support for all donor conceived people, regardless of whether they are actively searching for connections or not. Further research should seek to better understand how donor conceived people with varying levels of interest in searching for donor connections differ from one another. STUDY FUNDING/COMPETING INTEREST(S) This study was funded by the UK Economic and Social Research Council [New Investigator Award ES/S015426/1]. The authors have no competing interests to declare. TRIAL REGISTRATION NUMBER N/A.
中文翻译:
“我必须提醒自己,每个人的寻找都是不同的”:在捐赠者受孕的成年人中寻找和不寻找捐赠者联系的经历和结果
研究问题 积极寻找、愿意接触或不寻找捐赠者联系的捐赠者受孕成年人的经历和结果是什么?摘要答案 大多数参与者都在积极搜索或愿意联系,67% 的人已经找到或被联系人找到;找到或找不到经验是很复杂的。已知的情况 捐献者受孕的个体对捐献者关系的兴趣存在差异。搜索连接的个人原因以及搜索哪些供体连接也各不相同。大多数研究都集中在积极寻找捐赠者或捐赠者兄弟姐妹的个人。全球直接面向消费者的 DNA 检测和社交媒体参与的增加意味着,可能会与不知道自己(或其亲属)参与捐赠者受孕的个人建立联系。这些社会和技术变革也增加了捐赠者受孕个体在没有预期或不希望接触的情况下被联系的机会。研究设计、规模、持续时间 本研究纳入了 88 名在英国受孕的捐赠者,他们在 2022 年 1 月至 8 月期间参加了一项在线多方法调查。该调查是在与英国最大社区网络的工作人员和志愿者协商后设计的,目的是为了捐赠者受孕家庭(捐赠者受孕网络,DCN)和捐赠者受孕者(捐赠者受孕登记注册小组,DCRRP)。在推出之前,它由五名捐赠者受孕的人进行了试点。参与者是在 DCN 和 DCRRP 的帮助下通过社交媒体、大学邮件列表和滚雪球方式招募的。参与者/材料、背景、方法 参与者大多为女性(n = 65, 74%)和受孕的精子捐赠者(n = 79, 90%)。 在 88 名参与者中,39 名 (44%) 正在积极寻找他们的捐赠者联系,44 名 (50%) 愿意联系但不积极寻找,5 名 (6%) 没有寻找。问题是封闭式的(是/否、评分量表或多选)或开放式的,涉及捐赠者受孕的经历、寻找联系以及寻找或不寻找联系。对数据进行定量和定性分析。主要结果和机会的作用 定量结果显示,各组之间在任何人口统计变量或何时或如何发现捐赠者受孕方面没有差异,积极的搜索者和那些愿意联系的人在是否找到捐赠者方面没有差异连接。不同群体之间对遗传史的兴趣以及对遗传学对其身份认同感的重要性的认知存在显着差异,主动搜索者比那些愿意接触的人更感兴趣,并认为这一点更重要。不同群体的搜索方法存在显着差异,主动搜索者使用基因检测和社交媒体的次数多于开放接触的人。所有组中的 59 名参与者(主动搜索者 (n = 29, 74%)、愿意联系 (n = 27, 61%)、不愿意联系 (n = 3, 60%))已找到捐赠者或已被捐赠者找到联系。主题复杂性捕捉了积极寻找或开放联系的参与者中寻找或未找到捐助者联系的经历,有六个子主题:寻找和关联的不确定性;搜索是开放式的;不同的捐助者关系,不同的经历;期望和现实;搜索和发现或未发现都可以促进变革;以及其他捐赠者受孕者的经历。 限制和注意原因 大多数参与者都是相关社区组织的成员。正如该领域研究中常见的那样,样本大部分是女性,并使用捐赠者的精子受孕。对捐赠者关系不感兴趣的捐赠者受孕的人可能不太可能参与该主题的研究。研究结果的更广泛影响 在为所有捐赠受孕者制定适当的支持机制时,应考虑搜索过程本身的性质和影响,无论他们是否正在积极寻找联系。进一步的研究应该寻求更好地了解捐赠者孕育的人们在寻找捐赠者关系方面的兴趣程度不同,彼此之间有何不同。研究经费/竞争利益 本研究由英国经济和社会研究理事会 [新研究者奖 ES/S015426/1] 资助。作者没有需要声明的竞争利益。试用注册号 不适用。
更新日期:2024-09-17
中文翻译:
“我必须提醒自己,每个人的寻找都是不同的”:在捐赠者受孕的成年人中寻找和不寻找捐赠者联系的经历和结果
研究问题 积极寻找、愿意接触或不寻找捐赠者联系的捐赠者受孕成年人的经历和结果是什么?摘要答案 大多数参与者都在积极搜索或愿意联系,67% 的人已经找到或被联系人找到;找到或找不到经验是很复杂的。已知的情况 捐献者受孕的个体对捐献者关系的兴趣存在差异。搜索连接的个人原因以及搜索哪些供体连接也各不相同。大多数研究都集中在积极寻找捐赠者或捐赠者兄弟姐妹的个人。全球直接面向消费者的 DNA 检测和社交媒体参与的增加意味着,可能会与不知道自己(或其亲属)参与捐赠者受孕的个人建立联系。这些社会和技术变革也增加了捐赠者受孕个体在没有预期或不希望接触的情况下被联系的机会。研究设计、规模、持续时间 本研究纳入了 88 名在英国受孕的捐赠者,他们在 2022 年 1 月至 8 月期间参加了一项在线多方法调查。该调查是在与英国最大社区网络的工作人员和志愿者协商后设计的,目的是为了捐赠者受孕家庭(捐赠者受孕网络,DCN)和捐赠者受孕者(捐赠者受孕登记注册小组,DCRRP)。在推出之前,它由五名捐赠者受孕的人进行了试点。参与者是在 DCN 和 DCRRP 的帮助下通过社交媒体、大学邮件列表和滚雪球方式招募的。参与者/材料、背景、方法 参与者大多为女性(n = 65, 74%)和受孕的精子捐赠者(n = 79, 90%)。 在 88 名参与者中,39 名 (44%) 正在积极寻找他们的捐赠者联系,44 名 (50%) 愿意联系但不积极寻找,5 名 (6%) 没有寻找。问题是封闭式的(是/否、评分量表或多选)或开放式的,涉及捐赠者受孕的经历、寻找联系以及寻找或不寻找联系。对数据进行定量和定性分析。主要结果和机会的作用 定量结果显示,各组之间在任何人口统计变量或何时或如何发现捐赠者受孕方面没有差异,积极的搜索者和那些愿意联系的人在是否找到捐赠者方面没有差异连接。不同群体之间对遗传史的兴趣以及对遗传学对其身份认同感的重要性的认知存在显着差异,主动搜索者比那些愿意接触的人更感兴趣,并认为这一点更重要。不同群体的搜索方法存在显着差异,主动搜索者使用基因检测和社交媒体的次数多于开放接触的人。所有组中的 59 名参与者(主动搜索者 (n = 29, 74%)、愿意联系 (n = 27, 61%)、不愿意联系 (n = 3, 60%))已找到捐赠者或已被捐赠者找到联系。主题复杂性捕捉了积极寻找或开放联系的参与者中寻找或未找到捐助者联系的经历,有六个子主题:寻找和关联的不确定性;搜索是开放式的;不同的捐助者关系,不同的经历;期望和现实;搜索和发现或未发现都可以促进变革;以及其他捐赠者受孕者的经历。 限制和注意原因 大多数参与者都是相关社区组织的成员。正如该领域研究中常见的那样,样本大部分是女性,并使用捐赠者的精子受孕。对捐赠者关系不感兴趣的捐赠者受孕的人可能不太可能参与该主题的研究。研究结果的更广泛影响 在为所有捐赠受孕者制定适当的支持机制时,应考虑搜索过程本身的性质和影响,无论他们是否正在积极寻找联系。进一步的研究应该寻求更好地了解捐赠者孕育的人们在寻找捐赠者关系方面的兴趣程度不同,彼此之间有何不同。研究经费/竞争利益 本研究由英国经济和社会研究理事会 [新研究者奖 ES/S015426/1] 资助。作者没有需要声明的竞争利益。试用注册号 不适用。