Conceptualizing Inclusive Research with People with Intellectual Disability

Abstract

BACKGROUND: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. METHOD: A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. FINDING: Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. CONCLUSIONS: A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. BACKGROUND: Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. METHOD: The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. RESULTS: There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. CONCLUSIONS: In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.

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