# A biopsychosocial approach to the deep phenotyping of communicative participation in adolescents with Down syndrome

> **NIH NIH R01** · UNIVERSITY OF ARIZONA · 2024 · $588,631

## Abstract

Over half of adolescents with Down syndrome (DS) have difficulty being understood by others which negatively
impacts their engagement in daily life activities that require communication (i.e., communicative participation).
Restrictions in communicative participation are not trivial and lead to un- and underemployment and loneliness
which, in turn, lead to poor mental and physical health outcomes. Despite the urgent need, interventions to
improve speech production in adolescents with DS are rare. Thus, speech-language pathologists use
treatments that are designed for adults, are not specific to the underlying impairment in DS, and do not
consider the unique psychosocial issues faced by adolescents. The long-term goal of this line of research is to
bring a precision medicine approach to the development of theoretically-driven, evidence-based, participation-
focused interventions for adolescents with DS. As a first step, we will construct deep phenotypes of
communicative participation for adolescents with DS. Current intervention approaches focus exclusively on the
underlying impairment while ignoring both the adolescent’s perspective and the societal structures that
contribute to their disability. A key innovation of this proposal is the shift away from treating communicative
participation solely as an impairment-level issue and toward a model of communicative participation that
encompasses a broader view of functioning. To do so, we will employ the conceptual framework detailed in
Baylor (Co-I) and Darling-White (PI; 2020) that models communicative participation as a biopsychosocial
construct comprised of the following elements: communication skills (e.g., the underlying impairment), personal
perspectives (e.g., preferences, coping), and communication environment (e.g., physical, social). Each
element contributes to restrictions in communicative participation and warrants full consideration in intervention
design and implementation. A critical barrier to the development of participation-focused interventions for
adolescents with DS is the lack of empirical information regarding these elements, leaving us with a limited
ability to identify intervention targets, measure progress, and facilitate lasting change. The first specific aim of
this proposal is to construct impairment-level speech production profiles for adolescents with DS. The second
specific aim is to investigate how personal perspectives and communication environment alter communicative
participation for adolescents with DS. The third specific aim is to develop a mechanistic model of
communicative participation for adolescents with DS. The expected outcome of this proposal is the deep
phenotyping of communicative participation for adolescents with DS. By applying a precision medicine
approach within a biopsychosocial framework, this proposal will lay the foundation for the creation of
intervention that centers the patient perspective, addresses the underlying impairment based on
comprehe...

## Key facts

- **NIH application ID:** 10879335
- **Project number:** 1R01HD112393-01A1
- **Recipient organization:** UNIVERSITY OF ARIZONA
- **Principal Investigator:** Meghan Darling White
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $588,631
- **Award type:** 1
- **Project period:** 2024-08-01 → 2029-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10879335

## Citation

> US National Institutes of Health, RePORTER application 10879335, A biopsychosocial approach to the deep phenotyping of communicative participation in adolescents with Down syndrome (1R01HD112393-01A1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10879335. Licensed CC0.

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