Caregivers' perception of adults with Down syndrome willingness to participate in research

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.

Thriving with Support: The Continued Journey of Persons with Down Syndrome.

“…One opportunity is actively involving persons with DS in health research, also known as inclusive health research 34 . However, historically persons with DS have been excluded from (clinical) research and family members and/or caregivers have served as a proxy 35 . This has proven helpful given that family members and caregivers often have more experience and expertise about their offspring, since they are in the lead of care content and organization.…”