PCORI Science of Engagement: Developing a Multi-Dimensional Measure of Adolescent Engagement in Research


Study Dates

2024 - Present

Last Modified

Thumbnail Image

Tags


Publisher

PEDSnet

Abstract

Study to develop a measure of engagement that is relevant, trustworthy and useful for all adolescents.

Affiliation(s)

Seattle Children's Hospital

Funder(s)

This research was made possible through the generous support of Patient-Centered Outcomes Research Institute. The statements presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of PCORI, its Board of Governors, or its Methodology Committee.

Provenance

Description

Adolescent engagement in research is foundational to the patient-centered care of adolescents. However, there is limited information about the processes through which high-quality engagement occurs, and no valid and reliable way of measuring engagement quality in this important and developmentally unique patient population.

Measuring engagement quality from the perspective of adolescents is important for quantifying the patient-reported impact of engagement strategies. However, at present, there are no valid and reliable measures of this concept. Developing a measure of engagement that is relevant, trustworthy and useful for all adolescents requires both a developmental framework, and intentionality and reflexivity about whose perspectives are centered in the development process.

This study addresses this gap in the engagement literature, working in partnership with the PEDSnet Youth Advisory Council (YAC). The PEDSnet YAC is a racially, ethnically and socioeconomically diverse group of 20 adolescents who are current or former patients at a pediatric academic medical center that is a member of PEDSnet, a pediatrics-focused clinical research network of PCORnet®.

Study Aims

  1. Refine a conceptual model of adolescent engagement in research using concept-mapping methods that elevate and synthesize adolescent perspectives.
  2. Develop a measure of adolescent engagement that reflects the conceptual model from aim 1.
  3. Test the reliability and validity of the newly developed measure.

Concept mapping and survey data is collected from a diverse sample of adolescents who are currently engaged in research at a PEDSnet academic medical center site. Completing the aims will produce a measure that is acceptable to a diverse group of adolescents, that has acceptable psychometric properties, and that has robust evidence about its reliability and validity. This measure will be well positioned to assess engagement quality of adolescents engaged in research in healthcare settings.

Development Code

Vocabulary

Clinical Subjects Headings

Related Code

Data Source

Related Person

Parent Partner

Related Study

Creative Commons license

a CC-BY 4.0 Attribution license.
Except where otherwised noted, this item's license is described as a CC-BY 4.0 Attribution license.

Cite this Study

Christakis, D. PCORI Science of Engagement: Developing a Multi-Dimensional Measure of Adolescent Engagement in Research. [Study]. PEDSpace Knowledge Bank. https://hdl.handle.net/20.500.14642/843

Settings

Search Results