A consensus statement on how to conduct inclusive health research

Tessa Frankena; J. Naaldenberg; M. Cardol; E. Garcia Iriarte; T Buchner; K. Brooker; P. Embregts; E. Joosa; Felicity Crowther; A. Fudge Schormans; A. Schippers; Jan Walmsley; Patricia O'Brien; Christine Linehan; Ruth Northway; Henny van Schrojenstein Lantman-de Valk; G. Leusink

doi:10.1111/jir.12486

A consensus statement on how to conduct inclusive health research

Tessa Frankena, J. Naaldenberg, M. Cardol, E. Garcia Iriarte, T Buchner, K. Brooker, P. Embregts, E. Joosa, Felicity Crowther, A. Fudge Schormans, A. Schippers, Jan Walmsley, Patricia O'Brien, Christine Linehan, Ruth Northway, Henny van Schrojenstein Lantman-de Valk, G. Leusink

Cyfadran y Gwyddorau Bywyd ac Addysg

Allbwn ymchwil: Cyfraniad at gyfnodolyn › Erthygl › adolygiad gan gymheiriaid

70 Wedi eu Llwytho i Lawr (Pure)

Crynodeb

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 round table discussion at the 2016 IASSIDD 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.

Iaith wreiddiol	Saesneg
Rhif yr erthygl	12486
Nifer y tudalennau	11
Cyfnodolyn	Journal of Intellectual Disability Research
Dyddiad ar-lein cynnar	11 Ebrill 2018
Dynodwyr Gwrthrych Digidol (DOIs)	https://doi.org/10.1111/jir.12486
Statws	E-gyhoeddi cyn argraffu - 11 Ebrill 2018

NDC y CU

Mae’r allbwn hwn yn cyfrannu at y Nod(au) Datblygu Cynaliadwy canlynol

Mynediad at Ddogfen

10.1111/jir.12486Trwydded: Amhenodol

Consensus statement on inclusive health researchLlawysgrif a gyflwynwyd, 53.2 KB
Box 1 - Key elements of reporting and publishingLlawysgrif a gyflwynwyd, 15.3 KB
Box 2 - Future research directionsLlawysgrif a gyflwynwyd, 15.1 KB
Headline statementsLlawysgrif a gyflwynwyd, 11.3 KB
Appendix I - Easy read statementLlawysgrif a gyflwynwyd, 4.44 MB

Dyfynnu hyn

Frankena, T., Naaldenberg, J., Cardol, M., Garcia Iriarte, E., Buchner, T., Brooker, K., Embregts, P., Joosa, E., Crowther, F., Fudge Schormans, A., Schippers, A., Walmsley, J., O'Brien, P., Linehan, C., Northway, R., van Schrojenstein Lantman-de Valk, H., & Leusink, G. (2018). A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research, [12486]. https://doi.org/10.1111/jir.12486

@article{f69297d54ff84f63a2af0b51b159c558,

title = "A consensus statement on how to conduct inclusive health research",

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 round table discussion at the 2016 IASSIDD 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 = "inclusive research, intellectual disabilities, health research, user involvment",

author = "Tessa Frankena and J. Naaldenberg and M. Cardol and {Garcia Iriarte}, E. and T Buchner and K. Brooker and P. Embregts and E. Joosa and Felicity Crowther and {Fudge Schormans}, A. and A. Schippers and Jan Walmsley and Patricia O'Brien and Christine Linehan and Ruth Northway and {van Schrojenstein Lantman-de Valk}, Henny and G. Leusink",

year = "2018",

month = apr,

day = "11",

doi = "10.1111/jir.12486",

language = "English",

journal = "Journal of Intellectual Disability Research",

issn = "0964-2633",

publisher = "Blackwell Publishing Ltd",

}

Frankena, T, Naaldenberg, J, Cardol, M, Garcia Iriarte, E, Buchner, T, Brooker, K, Embregts, P, Joosa, E, Crowther, F, Fudge Schormans, A, Schippers, A, Walmsley, J, O'Brien, P, Linehan, C, Northway, R, van Schrojenstein Lantman-de Valk, H & Leusink, G 2018, 'A consensus statement on how to conduct inclusive health research', Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12486

TY - JOUR

T1 - A consensus statement on how to conduct inclusive health research

AU - Frankena, Tessa

AU - Naaldenberg, J.

AU - Cardol, M.

AU - Garcia Iriarte, E.

AU - Buchner, T

AU - Brooker, K.

AU - Embregts, P.

AU - Joosa, E.

AU - Crowther, Felicity

AU - Fudge Schormans, A.

AU - Schippers, A.

AU - Walmsley, Jan

AU - O'Brien, Patricia

AU - Linehan, Christine

AU - Northway, Ruth

AU - van Schrojenstein Lantman-de Valk, Henny

AU - Leusink, G.

PY - 2018/4/11

Y1 - 2018/4/11

N2 - 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 round table discussion at the 2016 IASSIDD 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.

AB - 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 round table discussion at the 2016 IASSIDD 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.

KW - inclusive research

KW - intellectual disabilities

KW - health research

KW - user involvment

U2 - 10.1111/jir.12486

DO - 10.1111/jir.12486

M3 - Article

C2 - 29642277

JO - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

SN - 0964-2633

M1 - 12486

ER -

A consensus statement on how to conduct inclusive health research

Crynodeb

NDC y CU

Mynediad at Ddogfen

Ôl bys

Dyfynnu hyn