Introduction: Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. Objective: We sought to better understand facilitators and barriers to participation in biospecimen research among a diverse group of parents of youth with ASD and BPD. Methods: The current study involved 3 Mental Health Research Network sites. At each site, parents participated in an interview that explored attitudes and beliefs about genetic research. Interviews were audio-recorded, and audio files were transcribed and coded using content analysis. Results: A total of 58 interviews were conducted. Four challenges emerged: (1) contacting and engaging potential research participants, (2) motivating potential participants to read recruitment and consent materials, (3) motivating participation in research, in general, and (4) motivating participation in research involving biospecimen donation, specifically. Conclusions: Participants were eager to participate as long as the research process involved trust, clarity, and flexibility. Future research involving youth with mental health conditions would benefit from implementing multimodal strategies for recruitment and data collection and sharing knowledge gained by the research with study participants.

中文翻译：

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有心理健康问题的青少年家长参与生物样本研究的影响因素

简介：生物样本是一种工具，有可能改善自闭症谱系障碍 (ASD) 和双相情感障碍 (BPD) 的早期识别和治疗。不幸的是，大多数生物库缺乏种族/民族多样性。纳入多样化的青年样本的一项挑战是招募和吸引家庭。目标：我们试图更好地了解 ASD 和 BPD 青年家长的多元化群体参与生物样本研究的促进因素和障碍。方法：目前的研究涉及 3 个心理健康研究网络站点。在每个站点，父母都参加了一次采访，探讨了对基因研究的态度和信念。采访进行了录音，音频文件使用内容分析进行转录和编码。结果：共进行了 58 次访谈。出现了四个挑战：(1) 联系和吸引潜在的研究参与者，(2) 激励潜在参与者阅读招募和同意材料，(3) 总体上激励参与研究，以及 (4) 激励参与涉及生物样本捐赠的研究，具体而言。结论：只要研究过程涉及信任、清晰和灵活性，参与者就会渴望参与。未来涉及有心理健康状况的青年的研究将受益于实施多模式招募和数据收集策略，以及与研究参与者分享研究中获得的知识。(4) 鼓励参与涉及生物样本捐赠的研究，特别是。结论：只要研究过程涉及信任、清晰和灵活性，参与者就会渴望参与。未来涉及有心理健康状况的青年的研究将受益于实施多模式招募和数据收集策略，以及与研究参与者分享研究中获得的知识。(4) 鼓励参与涉及生物样本捐赠的研究，特别是。结论：只要研究过程涉及信任、清晰和灵活性，参与者就会渴望参与。未来涉及有心理健康状况的青年的研究将受益于实施多模式招募和数据收集策略，以及与研究参与者分享研究中获得的知识。