Caregivers' perception of adults with Down syndrome willingness to participate in research.
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| Title: | Caregivers' perception of adults with Down syndrome willingness to participate in research. |
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| Authors: | Kyprianou, N., Hendrix, J., Hillerstrom, H., Grimm, R., Kirova, A.‐M., Rubenstein, E. |
| Source: | Journal of Intellectual Disability Research. Apr2023, Vol. 67 Issue 4, p352-361. 10p. 3 Charts, 1 Graph. |
| Subjects: | Caregiver attitudes, Human research subjects, Patient participation, Down syndrome, Magnetic resonance imaging, Surveys, Research funding |
| Abstract: | Background: Historically, individuals with Down syndrome have been excluded from clinical research. Our objective was to assess the degree of interest adults with Down syndrome have in participating in research from the perspective of the caregivers who care for them. Methods: We conducted an online survey of N = 390 caregivers of adults with Down syndrome and asked about interest in research participation and demographics. Results: Caregivers were mostly family members, older than 55 years, and White. Caregivers reported that the adult with Down syndrome that they cared for would be more comfortable participating in research that was physiological, such as research involving fit bits (70.2% would participate), exercise (63.3%) or diet apps (53.9%), whereas they would be less likely to participate in clinical trials involving more invasive procedures such as injections (10.9%) and laboratory exams like MRIs (32.0%). We found little difference by age or gender of the adult with Down syndrome or by caregiver education level. Conclusions: Our survey identified high interest for less invasive studies, illustrating acceptability of observational and lifestyle studies. More effort may be needed to understand fear and barriers to participation and to create tools and methods to increase interest in more invasive studies. [ABSTRACT FROM AUTHOR] |
| Copyright of Journal of Intellectual Disability Research is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
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| Abstract: | Background: Historically, individuals with Down syndrome have been excluded from clinical research. Our objective was to assess the degree of interest adults with Down syndrome have in participating in research from the perspective of the caregivers who care for them. Methods: We conducted an online survey of N = 390 caregivers of adults with Down syndrome and asked about interest in research participation and demographics. Results: Caregivers were mostly family members, older than 55 years, and White. Caregivers reported that the adult with Down syndrome that they cared for would be more comfortable participating in research that was physiological, such as research involving fit bits (70.2% would participate), exercise (63.3%) or diet apps (53.9%), whereas they would be less likely to participate in clinical trials involving more invasive procedures such as injections (10.9%) and laboratory exams like MRIs (32.0%). We found little difference by age or gender of the adult with Down syndrome or by caregiver education level. Conclusions: Our survey identified high interest for less invasive studies, illustrating acceptability of observational and lifestyle studies. More effort may be needed to understand fear and barriers to participation and to create tools and methods to increase interest in more invasive studies. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 09642633 |
| DOI: | 10.1111/jir.12999 |
