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A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co‐researchers involved and what are their experiences? How are co-researchers involved and what are their experiences?

  • Olivia Hewitt*
  • , Peter E. Langdon
  • , Katherine Tapp
  • , Michael Larkin
  • *Corresponding author for this work
  • Learning Disability Services Berkshire Healthcare NHS Foundation Trust 3 Floor, Fitzwilliam House, Skimped Hill Lane Bracknell RG12 1BQ UK
  • Coventry and Warwickshire Partnership NHS Trust, Rainbow Unit Brooklands Hospital Marston Green Birmingham B37 5RY UK
  • Centre for Educational Development, Appraisal and Research (CEDAR) University of Warwick Coventry CV4 7AL UK

Research output: Contribution to journalReview articlepeer-review

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Abstract

Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed‐methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.
Original languageEnglish
Pages (from-to)681-701
Number of pages21
JournalJournal of Applied Research in Intellectual Disabilities
Volume36
Issue number4
Early online date1 Apr 2023
DOIs
Publication statusPublished - Jul 2023

Bibliographical note

Copyright © 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Funding Information:
Olivia Hewitt is supported by an NIHR Clinical Doctoral Fellowship (NIHR300501). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

Keywords

  • research
  • inclusive
  • health and social care research
  • co‐production
  • intellectual disability
  • systematic review

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