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Patient-centred medicine
Research
Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study
  1. T K Frankena1,
  2. J Naaldenberg1,
  3. M Cardol2,
  4. J V Meijering3,
  5. G Leusink1,
  6. H M J van Schrojenstein Lantman-de Valk1
  1. 1Department of Primary and Community Care, Research group Intellectual Disabilities and Health, Radboud university medical center, Nijmegen, The Netherlands
  2. 2University of Applied Sciences, Research Centre Innovations in Care, Chair Disability Studies: Diversity in Participation, Rotterdam, The Netherlands
  3. 3Research Methodology Group, Wageningen University and Research Centre, Wageningen, The Netherlands
  1. Correspondence to Dr TK Frankena; tessa.frankena{at}radboudumc.nl

Abstract

Background The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution.

Objective This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes.

Design A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10).

Results Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research.

Discussion and conclusions This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool will be partially applicable to participatory research in general and thereby upscale the patient revolution.

  • intellectual disabilities
  • patient participation
  • inclusive research
  • Delphi method
  • patient revolution
  • health research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2016-011861

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