Caregivers' perception of adults with Down syndrome willingness to participate in research.
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...
| Publicado en: | Journal of Intellectual Disability Research Vol. 67; no. 4; pp. 352 - 362 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Apr2023
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=162242224&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 162242224 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09642633 EUL jtl: Journal of Intellectual Disability Research issn: 09642633 maglogo: Y pubinfo: dt: Apr2023 vid: 67 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 162242224 160898760 162242224 162242224 10.1111/jir.12999 162242224 ppf: 352 ppct: 10 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Caregivers' perception of adults with Down syndrome willingness to participate in research. aug: au: Kyprianou, N. Hendrix, J. Hillerstrom, H. Grimm, R. Kirova, A.‐M. Rubenstein, E. affil: Department of Epidemiology, Boston University School of Public Health, Boston MA,, USA sug: subj: Down Syndrome In Adulthood Research Subjects Psychosocial Factors Consumer Participation Caregiver Attitudes Human Male Female Adolescence Adult Middle Age Aged Aged, 80 and Over Funding Source Surveys Magnetic Resonance Imaging Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Aged, 80 & over Male Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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