Family experience in a regional participant contact registry for research on intellectual disability
Title
Family experience in a regional participant contact registry for research on intellectual disability
Creator
Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Identifier
Publisher
Intellectual and Developmental Disabilities
Date
2014
Description
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
Citation
Conners FA; Phillips BA; Rhodes JD; Hamilton JC, “Family experience in a regional participant contact registry for research on intellectual disability,” Pediatric Palliative Care Library, accessed October 11, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18590.