Facilitating Research Participation: How Researchers Support People With Communication Support Needs to Decide to Participate.

Background: Evidence is needed about the practicalities of how researchers support people with intellectual disabilities and communication support needs to facilitate their choice to participate in research. What are the elements of effective support from researchers that build on trusted relationsh...

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Publicado en:Journal of Applied Research in Intellectual Disabilities Vol. 39; no. 3; pp. 1 - 10
Autores principales: Lutz, Deborah L., Fisher, Karen R.
Formato: case study research tables/charts Journal Article
Publicado: Wiley-Blackwell May2026
Acceso en línea:Ver este registro en EBSCOhost
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      dt: May2026
      vid: 39
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        atl: Facilitating Research Participation: How Researchers Support People With Communication Support Needs to Decide to Participate.
      aug:
        au:
          Lutz, Deborah L.
          Fisher, Karen R.
        affil: Catholic University of Applied Sciences, Freiburg, Germany
      sug:
        subj:
          Research Subjects
          Patient Participation
          Research Personnel
          Support, Psychosocial
          Communication
          Health Services Needs and Demand
          Researcher-Subject Relations
          Decision Making
          Persons with Intellectual Disabilities
          Human
          Male
          Female
          Qualitative Studies
          Communication Barriers
          Intellectual Disability
          Autism Spectrum Disorder
          Down Syndrome
          Ethnographic Research
          Data Analysis Software
          Male
          Female
      ab: Background: Evidence is needed about the practicalities of how researchers support people with intellectual disabilities and communication support needs to facilitate their choice to participate in research. What are the elements of effective support from researchers that build on trusted relationships between the person and supporters for that decision? Method: The article applies an analytical framework about effective support for decision making to qualitative data about researchers' support for choices to participate in three ethnographic case studies. Results: The analysis found researchers became supporters in the person's decision making by directly supporting the person and engaging with their supporters in ways that prioritised the person's rights. Conclusion: The analysis extends the framework by finding that when researchers position themselves as supporters, they can leverage trusted relationships and demonstrate to facilitate the person's right to choose whether to participate in research, representing a methodological and ethical advance for inclusive research practice. Summary: People with intellectual disabilities and communication support needs often rely on trusted relationships to help them make decisions, including whether to take part in research.Researchers can play a key role in supporting these decisions, but little is known about how they practically do this when they engage with the person and their supporters.This study looked at three examples for decision making support to understand how researchers can involve people with communication support needs.The study found that researchers can position themselves as part of a team of supporters, working closely with others to help people with communication support needs make informed choices about participating in research and model good practice to supporters.
      pubtype: Academic Journal
      doctype:
        case study
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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