Disability Inclusive Research Principles

 

The Disability Inclusive Research Principles were produced as a Quality Statement by the Disability Inclusive Research Collaboration 2012.

 

Quality Statement

The Steering Committee of the DIRCC is committed to providing an experience which demonstrates the practice of inclusive research. The quality of the conference will be measured by our adherence to the principles for which we advocate, and we implement at the event. All speakers, presenters and participants are asked to acknowledge and affirm the principles below, and to, as far as possible, ensure their contribution to the conference meets with these statements of quality:

 

Research that is informed by and/or led by people with disability

The need for research, and its design must be identified and led by people with disability.

 

Ownership

The research process, its design, management, implementation and findings must be owned by people with disability and their representative organisations.

 

Inclusive and participatory

The research process, and its methodologies, must ensure that people with disability, about whom and for whom the research is designed, play a central role as researchers and as research participants; and the voice of people with disability is validated as data.

 

Co-presenting

People with disability must be provided with opportunities to present research findings.

 

Materials that are accessible

Information about the research process, research tools, and research reports, must be provided in ways and in formats that are accessible.

 

A range of types of activities

Adjustment must be made to the design of research to render research appropriate to the participants and accommodate a variety of approaches (research design reflects the diversity of potential research participants). Good research design must emphasise the need for a variety of approaches to ensure that a diversity of views are researched.

 

Research that transfers through to real life

Research by and with people with disability must provide tangible benefits to individuals and the constituency of people with disability, and work toward greater inclusion of people with disability in the community.

 

Re-defining what research is

Inclusive disability research is part of the universal research endeavour, and as such must contribute to ongoing discussions about the role and form of research in general.

 

"The right people asking the right questions and getting the right answers"

Inclusive disability research must be careful to ensure that research questions are relevant and important to people with disability (determined/informed by them), and that answers are sought from the correct sources using the best inclusive methods (identify "right people").

 

Consent

Researchers must apply processes of ethics approval that ensure that people with disability are included in the research as willing and supportive participants.

 

The Inclusive Research Principles were showcased in Natasha Layton's Sylvia Docker lecture at the Occupational Therapy Australia Conference in Adelaide 24 - 26 Jul 2013.

 

Further information regarding this presentation can be found at www.natashalayton.com.au. The lecture is pending publication in the Australia Occupational Therapy Journal.

 

A copy of her abstract is below and the presentation can be found at

http://prezi.com/n5n4dyxpewwz/natasha-laytons-sylvia-docker-lecture/

 

Sylvia Docker Lecture 2013

The Research, Policy and Practice Nexus in Contemporary Occupational Therapy

 

Introduction

In this era of evidence based practice, Australian occupational therapists largely accept scientific perspectives of the quality of evidence and 'what makes a strong study'. Yet unequal power relationships are usual between funders who set the research agenda, researchers, and people who are the subjects of research. Emerging policy mandates partnerships with consumers in any health and research projects about them. Are we person-centered in our research practices? What difference would increased consumer direction make to our methods, scope and outcomes?

 

Objectives

This lecture will describe some of the benefits and challenges of collaborative research partnerships with consumers and outline where this may take occupational therapy in future.

 

Approach

The disability community's calls for inclusive research will be contrasted with mainstream research approaches and with occupational therapys commitment to person-centeredness. An example of inclusive research undertaken by the author and colleagues with disabilities which posed the question: What difference does assistive technology (AT) make to life for people living with impairment? will be presented.

 

Practice Implications

Collaborative research is best conceptualised as a mutually productive journey, with many factors influencing how fully inclusive research principles can be realised. This paper will outline for our profession the possibilities and complexities of conducting research which has inclusive credentials.

 

Conclusion

Inclusive research principles provide a means to enact person-centeredness in research as well as practice. To do so challenges occupational therapy practitioners and researchers to address nexus issues: that is, intersections between and beyond research, policy and practice.

 

Natasha Layton This email address is being protected from spambots. You need JavaScript enabled to view it. This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Images and the program from the Disability Inclusive Research Colloboration (DIRC) Conference 2012 can be found at http://www.cds.med.usyd.edu.au/disability-inclusive-research-principles/111-projects/130-disability-inclusive-research-colloboration-dirc-conference-2012