Involving people with ID in the research process – overcoming challenges By Nathalie Jones


by Nathalie Jones

Public involvement in research has been defined as “research being carried out with or by members of the public rather than to, about or for them.” (INVOLVE, 2012).   It involves people in the research process, not solely as participants but as co-researchers and advisors at each stage.

This brings with it challenges, especially in the area of intellectual disability research.

So why should we do it?

  • Improves the quality of research in terms of its credibility, relevance and impact.
  • Ensures that the methodology and resources used are accessible to the population group.
  • Helps gain a different perspective on research priorities.
  • Provides insight into the lives of seldom heard and isolated groups.
  • Can help bridge the gap between science and impact at ground level.
  • Is often asked for from funding bodies and ethics committees.

In what ways can people be involved?

INVOLVE describe 3 ways of involving the public in research:

  • Consultation:

Asking members of the public for their views on any part of the research process, for example what is important to them and identifying a research topic.

  • Collaboration:

An ongoing partnership where decisions about the research are shared.

  • User controlled research:

Where service users and organisations control, direct and manage the research.

Challenges with involving the ID community in research

  • The wide range of ID and the need to represent all levels.
  • Limitations in communication, understanding, attention span and requirement for varying levels of support.
  • Increased health problems and appointments making scheduling difficult.
  • The involvement of the persons supporting network (care staff, families, activity timetable and centre hours) and their time commitments.

10 Tips for involvement

  1. Build relationships with communities so that trust develops.
  2. Tailor the involvement strategy to each study.
  3. Involve people as early as possible and identify points at each stage of the research where involvement can add value (research question, grant application, project design, carrying out the study, dissemination and implementation of results and evaluating impact)
  4. Document the involvement process in research papers so that experiences can be shared.
  5. Have a budget for involvement and build in time to the project for training, support, extra meetings
  6. Advertise posts where they would be seen and decide on the role description
  7. Consider payments / ways of paying people so not to affect benefits
  8. Anticipate absences sue to sickness / carer sickness
  9. Be flexible with timings and length of meetings
  10. Make sure the location is accessible and provide transport if necessary

Further reading:

Frankena TK, Naaldenberg J, Cardol M et al (2015), Active involvement of people with intellectual disabilities in health research – a structured literature review, Research in Developmental Disabilities, 45-46: 271-283

Involve, National Institute for Health Research: Briefing notes for researchers:  public involvement in NHS, public health and social care research, February 2012

National Institute for Health Research (2014),  Good practice guidance for involving people with experience of mental health problems in research.

Pellicano E, Dinsmore A, Charman T (2014), Views on researcher-community engagement in autism research in the United Kingdom:  A mixed-methods study, PLOS ONE, 9 (10)

Pollard K, Donskoy AL, Moule P et al (2014), Developing and evaluating guidelines for patient and public involvement (PPI) in research, International Journal of Health Care Quality Assurance, 28 (2): 141-155

Turk V, Leer G, Burchell S et al (2012),  Adults with intellectual disabilities and their carers as researchers and participants in a RCT, JARID, 25: 1-20

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