Abstract:
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.
journal_name
Public Health Genomicsjournal_title
Public health genomicsauthors
Owen-Smith AA,Sesay MM,Lynch FL,Massolo M,Cerros H,Croen LAdoi
10.1159/000509120subject
Has Abstractpub_date
2020-01-01 00:00:00pages
122-132issue
3-4eissn
1662-4246issn
1662-8063pii
000509120journal_volume
23pub_type
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pub_type: 多中心研究,新闻
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