Motivators and barriers to neurodevelopmental research enrolment

<b>Purpose:</b> Participant recruitment for studies investigating neurodevelopmental conditions can be difficult, limited, and resource intensive. In this study, caregivers were surveyed to learn about the factors influencing their decision to enroll their neurodivergent child in research.<b>Method:</b> Data were collected through an online survey from caregivers of neurodivergent children who were signing up for a research recruitment database (n = 46).<b>Results:</b> Participants indicated the most important motives were to help achieve better outcomes for other children and to contribute to scientific understanding. Personal curiosities, such as the caregiver or child learning more about their condition, were identified as important for some parents. The most influential barrier to enrollment noted by participants was a heightened possibility of a significant negative side effect.<b>Conclusion:</b> These findings provide essential insight that can inform study design and associated research support that could overcome barriers and ensure families are aware of the benefits of participating in research.

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Publication Details

Journal
Developmental Neurorehabilitation
Published
2024-12-20
DOI
https://doi.org/10.1080/17518423.2024.2438969
Citations
1
Primary Topic
Autism Spectrum Disorder Research
Type
article
Field-Weighted Citation Impact
0.34
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article

Motivators and barriers to neurodevelopmental research enrolment

Kara Murias, Carly A. McMorris, Hayley G.P. Huston
1 citations
Developmental Neurorehabilitation
Autism Spectrum Disorder Research
0.34
article

Motivators and barriers to neurodevelopmental research enrolment

Kara Murias, Carly A. McMorris, Hayley G.P. Huston
article en
1 citations

Abstract

<b>Purpose:</b> Participant recruitment for studies investigating neurodevelopmental conditions can be difficult, limited, and resource intensive. In this study, caregivers were surveyed to learn about the factors influencing their decision to enroll their neurodivergent child in research.<b>Method:</b> Data were collected through an online survey from caregivers of neurodivergent children who were signing up for a research recruitment database (n = 46).<b>Results:</b> Participants indicated the most important motives were to help achieve better outcomes for other children and to contribute to scientific understanding. Personal curiosities, such as the caregiver or child learning more about their condition, were identified as important for some parents. The most influential barrier to enrollment noted by participants was a heightened possibility of a significant negative side effect.<b>Conclusion:</b> These findings provide essential insight that can inform study design and associated research support that could overcome barriers and ensure families are aware of the benefits of participating in research.

Developmental NeurorehabilitationVol. 28(1)
University of Calgary (CA), Alberta Children's Hospital (CA), Ontario Brain Institute (CA), Alberta Children's Hospital Research Institute, Hotchkiss Brain Institute (CA)
Openalex Percentile: Top 37%
Autism Spectrum Disorder Research
0.34
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