Ashli A Owen-Smith1,2, Musu M Sesay3, Frances L Lynch4, Maria Massolo5, Hilda Cerros5, Lisa A Croen5. 1. Georgia State University, School of Public Health, Atlanta, Georgia, USA, aowensmith@gsu.edu. 2. Kaiser Permanente Georgia, Center for Research and Evaluation, Atlanta, Georgia, USA, aowensmith@gsu.edu. 3. Kaiser Permanente Georgia, Center for Research and Evaluation, Atlanta, Georgia, USA. 4. Kaiser Permanente Northwest, Center for Health Research, Portland, Oregon, USA. 5. Kaiser Permanente Northern California, Division of Research, Oakland, California, USA.
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.
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.
Authors: Karen J Coleman; Marta A Lutsky; Vincent Yau; Yinge Qian; Magdalena E Pomichowski; Phillip M Crawford; Frances L Lynch; Jeanne M Madden; Ashli Owen-Smith; John A Pearson; Kathryn A Pearson; Donna Rusinak; Virginia P Quinn; Lisa A Croen Journal: J Autism Dev Disord Date: 2015-07
Authors: Kayla E Wagner; Jennifer B McCormick; Sarah Barns; Molly Carney; Frank A Middleton; Steven D Hicks Journal: J Autism Dev Disord Date: 2019-03-22
Authors: Sara E Watson; Paul Smith; Jessica Snowden; Vida Vaughn; Lesley Cottrell; Christi A Madden; Alberta S Kong; Russell McCulloh; Crystal Stack Lim; Megan Bledsoe; Karen Kowal; Mary McNally; Lisa Knight; Kelly Cowan; Elizabeth Yakes Jimenez Journal: Clin Transl Sci Date: 2022-01-21 Impact factor: 4.438
Authors: Anne M Neilan; Anisha Tyagi; Yao Tong; Eva J Farkas; Madeleine D Burns; Allison Fialkowski; Grace Park; Margot Hardcastle; Elizabeth Gootkind; Ingrid V Bassett; Fatma M Shebl; Lael M Yonker Journal: BMC Pediatr Date: 2022-03-12 Impact factor: 2.125