Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions
| Autor: | Ashli Owen-Smith, Musu M. Sesay, Hilda J Cerros, Lisa A. Croen, Frances L. Lynch, Maria L. Massolo |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Male
Genetic Research Bipolar Disorder Autism Spectrum Disorder 030226 pharmacology & pharmacy law.invention 03 medical and health sciences 0302 clinical medicine law Cultural diversity medicine Humans Child Genetics (clinical) Biological Specimen Banks 0303 health sciences Medical education Patient Selection 030305 genetics & heredity Public Health Environmental and Occupational Health Flexibility (personality) medicine.disease Biobank Mental health Content analysis Donation CLARITY Autism Female Patient Participation Psychology Research Article |
| Zdroj: | Public Health Genomics |
| ISSN: | 1662-8063 1662-4246 |
| DOI: | 10.1159/000509120 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|