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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC

Mark Jayes¹, Liz Moulam¹, Stuart Meredith¹

¹Manchester Metropolitan University, Manchester, United Kingdom.

Qualitative Health Research

|March 1, 2021

Summary

This study explored how to involve individuals with complex speech and motor disorders as co-researchers. Findings highlight key facilitators for successful public involvement (PI) in research.

Keywords:

United Kingdom communication disability disabled persons equality, focus groups inequality marginalized or vulnerable groups power, empowerment qualitative research evaluation

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Area of Science:

Health Services Research
Disability Studies
Qualitative Research Methods

Background:

Meaningful participation of individuals with disabilities in research is crucial for relevance and impact.
Previous research often lacks detailed insights into the practicalities of co-researcher involvement for those with complex communication needs.

Purpose of the Study:

To identify processes enabling individuals with complex speech and motor disorders and their parents to act as co-researchers.
To explore experiences and perceptions of public involvement (PI) in a U.K. research project.

Main Methods:

Semi-structured interviews (individual and focus groups) with 16 participants.
Framework Analysis of qualitative data.
Inclusion of diverse stakeholder groups: project team, academics, support staff, and advisory groups.

Main Results:

Five key themes emerged: defining the co-researcher role, power dynamics in PI, enabling resources, perceived benefits, and facilitators of success.
Challenges in role definition and power relations were identified.
Specific resources and facilitators were crucial for effective PI.

Conclusions:

Inclusive research teams can effectively support individuals with complex speech and motor disorders in co-produced research.
Understanding and addressing challenges related to role definition and power are essential for successful PI.
This study offers practical evidence for enhancing the meaningful contribution of co-researchers with complex needs.