A consensus statement on how to conduct inclusive health research

T K Frankena; J Naaldenberg; M Cardol; E Garcia Iriarte; T Buchner; K Brooker; P Embregts; E Joosa; F Crowther; A Fudge Schormans; A Schippers; J Walmsley; P O'Brien; C Linehan; R Northway; H van Schrojenstein Lantman-de Valk; G Leusink

doi:10.1111/jir.12486

A consensus statement on how to conduct inclusive health research

J Intellect Disabil Res. 2019 Jan;63(1):1-11. doi: 10.1111/jir.12486. Epub 2018 Apr 11.

Authors

T K Frankena¹, J Naaldenberg¹, M Cardol², E Garcia Iriarte³, T Buchner⁴, K Brooker⁵, P Embregts⁶, E Joosa⁷, F Crowther⁸, A Fudge Schormans⁹, A Schippers¹⁰, J Walmsley¹¹, P O'Brien¹², C Linehan^{13

14}, R Northway¹⁵, H van Schrojenstein Lantman-de Valk¹, G Leusink¹

Affiliations

¹ Radboud University Medical Center, Department of Primary and Community Care, Nijmegen, Gelderland, The Netherlands.
² Hogeschool Rotterdam, Chair Disability Studies: Diversity in Participation, Rotterdam, The Netherlands.
³ Trinity College Dublin, School of Social Work and Social Policy, Ireland.
⁴ queraum.kultur- und sozialforschung, Vienna, Austria.
⁵ University of Queensland, Queensland Centre for Intellectual and Developmental Disability, Brisbane, Queensland, Australia.
⁶ Tilburg University, Department Tranzo, Tilburg, Noord-Brabant, The Netherlands.
⁷ Inclusive Creative Education and Independent Research Consultancy, Arts of the Earth Learning Hub, Singapore.
⁸ Flinders University, Disability and Community Inclusion Unit, Adelaide, Australia.
⁹ McMaster University, School of Social Work, Hamilton, Canada.
¹⁰ VU University Medical Centre Amsterdam, Disability Studies in Nederland, Amsterdam, The Netherlands.
¹¹ Jan Walmsley Associates, UK.
¹² University of Sydney, Centre for Disability Studies, Sydney, Australia.
¹³ University College Dublin, Centre for Disability Studies, Dublin, Ireland.
¹⁴ University of Kent, Tizard Centre, Canterbury, UK.
¹⁵ University of South Wales, School of Care Sciences, UK.

PMID: 29642277
DOI: 10.1111/jir.12486

Abstract

Background: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research.

Method: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round.

Results: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research.

Conclusions: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Keywords: health research; inclusive research; intellectual disabilities; participation; user involvement.

MeSH terms

Biomedical Research*
Community-Based Participatory Research*
Consensus Development Conferences as Topic*
Consensus*
Guidelines as Topic*
Humans
Intellectual Disability*
Patient Participation*