Conceptualizing Inclusive Research with People with Intellectual Disability
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 fe...
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| Published in | Journal of applied research in intellectual disabilities Vol. 27; no. 1; pp. 3 - 12 |
|---|---|
| Main Authors | , , |
| Format | Journal Article |
| Language | English |
| Published |
England
Blackwell Publishing Ltd
01.01.2014
Wiley-Blackwell Wiley Subscription Services, Inc |
| Subjects | |
| Online Access | Get full text |
| ISSN | 1360-2322 1468-3148 1468-3148 |
| DOI | 10.1111/jar.12083 |
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| 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.
Accessible
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. |
|---|---|
| AbstractList | 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. 52 references 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. Accessible 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. BackgroundThe 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.MethodA 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.FindingThree 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.ConclusionsA 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.Accessible AbstractBackgroundOrganisations 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.MethodThe 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.ResultsThere 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.ConclusionsIn 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. 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.BACKGROUNDThe 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.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.METHODA 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.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.FINDINGThree 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.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.CONCLUSIONSA 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.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.BACKGROUNDOrganisations 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.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.METHODThe 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.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.RESULTSThere 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.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.CONCLUSIONSIn 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. |
| Author | Ramcharan, Paul Bigby, Christine Frawley, Patsie |
| Author_xml | – sequence: 1 givenname: Christine surname: Bigby fullname: Bigby, Christine email: c.bigby@latrobe.edu.au organization: Department of Social Work and Social Policy, La Trobe University, Melbourne, Australia – sequence: 2 givenname: Patsie surname: Frawley fullname: Frawley, Patsie organization: Department of Social Work and Social Policy, La Trobe University, Melbourne, Australia – sequence: 3 givenname: Paul surname: Ramcharan fullname: Ramcharan, Paul organization: RMIT University, Melbourne, Australia |
| BackLink | http://eric.ed.gov/ERICWebPortal/detail?accno=EJ1029018$$DView record in ERIC https://www.ncbi.nlm.nih.gov/pubmed/24390972$$D View this record in MEDLINE/PubMed |
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| Copyright | 2013 John Wiley & Sons Ltd 2013 John Wiley & Sons Ltd. Copyright © 2014 John Wiley & Sons Ltd |
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| Keywords | participatory research inclusive research research with people with intellectual disability emancipatory research |
| Language | English |
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| PublicationDate | 2014-01 January 2014 2014-01-00 2014-Jan 20140101 |
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| PublicationTitle | Journal of applied research in intellectual disabilities |
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| References | Stevenson M. (2010) Flexible and responsive research: developing rights-based emancipatory disability research methodology in collaboration with young adults with Down syndrome. Australian Social Work 63, 35-50. Chapman R. & McNulty N. (2004) Building bridges? The role of research support in self-advocacy. British Journal of Learning Disabilities 32, 77-85. Atkinson D. (2004) Research and empowerment: involving people with learning difficulties in oral and life history research. Disability & Society 19, 691-702. Chappell A.L. (2000) Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities 28, 38-43. Sample P. (1996) Beginnings: participatory action research and adults with developmental disabilities. Disability & Society 11, 317-332. Atkinson D., McCarthy M. & Walmsley J. (2000) Good Times Bad Times: Women With Learning Disabilities Telling Their Stories. BILD, Kidderminister. Flynn M. (2003) Review of journey to independence: what self advocates tell us about direct payments. A joint research project from Swindon People First and the Norah Fry Research Centre. Journal of Learning Disabilities 7, 375-376. Kiernan C. (1999) Participation in research by people with learning disability: origins and issues. British Journal of Learning Disabilities 27, 43-47. Bigby C., Frawley P. & Ramcharan P. (2014) A collaborative group a method of inclusive research: 'That's how you get things done by working together. Journal of Applied Research in Intellectual Disabilities. 27, 54-64. Frawley P. & Bigby C. (2011) Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia. Journal of Intellectual & Developmental Disability 36, 27-38. Nind M. (2009) Conducting Qualitative Research with People with Learning, Communication and other Disabilities: Methodological Challenges. National Centre for Research Methods, pp. 24. (ESRC National Centre for Research Methods Review Paper, (NCRM/012)). Nind M. (2011) Participatory data analysis: a step too far. Qualitative Research 11, 349-363. Schoeters L., Schelfhout P., Roets G., Van Hove G., Townson L., Chapman R. & Buchanan I. (2005) Partnership working between university researchers and self-advocacy organizations: 'A way forward for inclusion?' In England and 'Fine feathers make a fine bird' in Flanders. Journal of Intellectual Disabilities 9, 345-357. Goodley D. (1998) Supporting people with learning difficulties in self-advocacy groups and models of disability. Health & Social Care in the Community 6, 438-446. Ward L. & Simons K. (1998). Practising partnership: involving people with learning difficulties in research. British Journal of Learning Disabilities 26, 128-131. Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities Past, Present and Futures. Jessica Kingsley, London. Bjornsdottir K. & Svensdottir A. (2008) Gambling for capital: learning disability, inclusive research and collaborative life histories. British Journal of Learning Disabilities 36, 263-270. Brooks M. & Davies S. (2008) Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities 36, 128-133. Walmsley J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society 16, 187-205. Williams V. (1999) Researching together. British Journal of Learning Disabilities 27, 48-51. Bigby C. & Frawley P. (2010) Reflections on doing inclusive research in the "Making life good in the community" study. Journal of Intellectual & Developmental Disability 35, 53-61. Walmsley J. (2004) Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry 11, 54-64. Whittaker A. (1997) Looking at Our Services: Service Evaluation by People with Learning Difficulties. Kings Fund, London. McClimens A. (2008) This is my truth, tell me yours: exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities 36, 271-276. Johnson K., Frawley P., Hillier L. & Harrison L. (2002) Living safer sexual lives: research and action. Tizard Learning Disability Review 7, 4-9. Kellett M. & Nind M. (2001) Ethics in quasi-experimental research on people with severe learning disabilities; dilemmas and compromises. British Journal of Learning Disabilities 29, 51-55. Rodgers J. (1999) Trying to get it right: undertaking research involving people with learning disabilities. Disability & Society 14, 421-433. Williams V. & Simons K., Swindon People First Research Team. (2005) More researching together: the role of nondisabled researchers in working with People First members. British Journal of Learning Disabilities 33, 6-14. Knox M., Mok M. & Parmenter T. (2000) Working with the experts: collaborative research with people with an intellectual disability. Disability & Society 15, 49-62. Redmond M. (2005) Co-researching with adults with learning disabilities: roles, responsibilities and boundaries. Qualitative Social Work: Research and Practice 4, 75-86. Emerson E., Malam S., Davies I. & Spencer K. (2005) Adults with Learning Disabilities in England, 2003/04. Health and Social Care Information Centre, London. Atkinson D. (2005) Research as social work: participatory research in learning disability. British Journal of Social Work 35, 425-434. Blunt C., Blyth C., Chapman R., Frost L., Hayward R., Hughes R., Perry B. & Townson L. (eds) (2012) The research and work of learning disabled people with their allies and supporters (Special Issue). British Journal of Learning Disabilities 40, 83-84. Conder J., Milner P. & Mirfin-Veitch B. (2011) Reflections on a participatory project: the rewards and challenges for the lead researchers. Journal of Intellectual & Developmental Disability 36, 39-48. Grant G. & Ramcharan P. (2007) Valuing People and Research: the Learning Disability Research Initiative. Department of Health, London. McCarthy M. & Millard L. (2003) Discussing menopause with women with learning disabilities. British Journal of Learning Disabilities 31, 9-18. Bigby C., Ramcharan P. & Frawley P. (2010) Researching self advocacy: the first 3 years of an inclusive study by self advocates and academics. Journal of Applied Research in Intellectual Disabilities 23, 453. Keonig O. (2012) Any added value? Co-constructing life stories of and with people with intellectual disabilities. British Journal of Learning Disabilities 40, 213-221. McLaughlin H. (2010) Keeping service user involvement in research honest. British Journal of Social Work 40, 1591-1608. Ramcharan P. (2003) Book Review Townsley, R., Howarth, J., Graham, M. & LeGrys, P. (2002). Committed to change: promoting the involvement of people with learning disabilities in staff recruitment. Bristol: the Policy Press and the Joseph Rowntree Foundation. Journal of Learning Disabilities 7, 378-379. Gilbert T. (2004) Involving people with learning disabilities in research: issues and possibilities. Health & Social Care in the Community 12, 298-308. Richardson M. (1997) Learning disabilities. Participatory research methods: people with learning disabilities. British Journal of Nursing 6, 1114-1121. Valade R. (2008) Participatory Action Research with Adults with Intellectual Disabilities: "Oh my God! Look out World!". VDM Verlag Dr. Müller, Saarbrücken. Turk V., Leer G., BurchellS., Khattram S., Corney R. & Rowlands G. (2012) Adults with intellectual disabilities and their carers as researchers and participants in a RCT. Journal of Applied Research in Intellectual Disabilities 25, 1-10. Townson L., Macauley S., Harkness E., Chapman R., Docherty A., Dias J., Eardley M. & McNulty N. (2004) We are all in the same boat: doing 'people-led research'. British Journal of Learning Disabilities 32, 72-76. Stalker K. (1998) Some ethical and methodological issues in research with people with learning disabilities. Disability & Society 13, 5-20. 1998; 26 2010; 35 2000; 28 2011 1999; 27 2002; 7 2014; 27 2008; 36 2009 1998 2008 1997 2007 2011; 11 2005 2004 2003 2011; 36 2001; 29 1997; 6 2003; 31 2010; 63 2010; 40 1996; 11 2010; 23 2004; 32 2004; 11 2004; 19 2000 2000; 15 2005; 9 2003; 7 2004; 12 1999; 14 2005; 4 2001; 16 2012; 25 1998; 6 2005; 33 2005; 35 2012; 40 1998; 13 Nind M. (e_1_2_3_30_1) 2009 Valade R. (e_1_2_3_45_1) 2008 e_1_2_3_2_1 e_1_2_3_39_1 e_1_2_3_18_1 e_1_2_3_12_1 e_1_2_3_35_1 e_1_2_3_8_1 e_1_2_3_14_1 e_1_2_3_37_1 e_1_2_3_31_1 e_1_2_3_52_1 e_1_2_3_10_1 e_1_2_3_33_1 Ramcharan P. (e_1_2_3_32_1) 2003; 7 Emerson E. (e_1_2_3_16_1) 2005 Atkinson D. (e_1_2_3_4_1) 2000 Grant G. (e_1_2_3_21_1) 2007 e_1_2_3_28_1 e_1_2_3_49_1 e_1_2_3_24_1 e_1_2_3_26_1 e_1_2_3_47_1 e_1_2_3_20_1 e_1_2_3_41_1 e_1_2_3_22_1 e_1_2_3_43_1 e_1_2_3_51_1 Walmsley J. (e_1_2_3_48_1) 2003 e_1_2_3_5_1 e_1_2_3_38_1 e_1_2_3_3_1 e_1_2_3_19_1 e_1_2_3_9_1 e_1_2_3_13_1 e_1_2_3_34_1 e_1_2_3_7_1 e_1_2_3_15_1 e_1_2_3_11_1 e_1_2_3_40_1 Bigby C. (e_1_2_3_6_1) 2010; 23 Whittaker A. (e_1_2_3_50_1) 1997 e_1_2_3_27_1 e_1_2_3_29_1 e_1_2_3_23_1 e_1_2_3_46_1 e_1_2_3_25_1 Flynn M. (e_1_2_3_17_1) 2003; 7 Riddell S. (e_1_2_3_36_1) 1998 e_1_2_3_42_1 e_1_2_3_44_1 |
| References_xml | – reference: Keonig O. (2012) Any added value? Co-constructing life stories of and with people with intellectual disabilities. British Journal of Learning Disabilities 40, 213-221. – reference: Turk V., Leer G., BurchellS., Khattram S., Corney R. & Rowlands G. (2012) Adults with intellectual disabilities and their carers as researchers and participants in a RCT. Journal of Applied Research in Intellectual Disabilities 25, 1-10. – reference: Kiernan C. (1999) Participation in research by people with learning disability: origins and issues. British Journal of Learning Disabilities 27, 43-47. – reference: Nind M. (2011) Participatory data analysis: a step too far. Qualitative Research 11, 349-363. – reference: Blunt C., Blyth C., Chapman R., Frost L., Hayward R., Hughes R., Perry B. & Townson L. (eds) (2012) The research and work of learning disabled people with their allies and supporters (Special Issue). British Journal of Learning Disabilities 40, 83-84. – reference: McClimens A. (2008) This is my truth, tell me yours: exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities 36, 271-276. – reference: Walmsley J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society 16, 187-205. – reference: Grant G. & Ramcharan P. (2007) Valuing People and Research: the Learning Disability Research Initiative. Department of Health, London. – reference: Schoeters L., Schelfhout P., Roets G., Van Hove G., Townson L., Chapman R. & Buchanan I. (2005) Partnership working between university researchers and self-advocacy organizations: 'A way forward for inclusion?' In England and 'Fine feathers make a fine bird' in Flanders. Journal of Intellectual Disabilities 9, 345-357. – reference: Townson L., Macauley S., Harkness E., Chapman R., Docherty A., Dias J., Eardley M. & McNulty N. (2004) We are all in the same boat: doing 'people-led research'. British Journal of Learning Disabilities 32, 72-76. – reference: Valade R. (2008) Participatory Action Research with Adults with Intellectual Disabilities: "Oh my God! Look out World!". VDM Verlag Dr. Müller, Saarbrücken. – reference: Frawley P. & Bigby C. (2011) Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia. Journal of Intellectual & Developmental Disability 36, 27-38. – reference: Atkinson D. (2004) Research and empowerment: involving people with learning difficulties in oral and life history research. Disability & Society 19, 691-702. – reference: Conder J., Milner P. & Mirfin-Veitch B. (2011) Reflections on a participatory project: the rewards and challenges for the lead researchers. Journal of Intellectual & Developmental Disability 36, 39-48. – reference: Brooks M. & Davies S. (2008) Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities 36, 128-133. – reference: Stalker K. (1998) Some ethical and methodological issues in research with people with learning disabilities. Disability & Society 13, 5-20. – reference: Bigby C., Frawley P. & Ramcharan P. (2014) A collaborative group a method of inclusive research: 'That's how you get things done by working together. Journal of Applied Research in Intellectual Disabilities. 27, 54-64. – reference: Walmsley J. (2004) Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry 11, 54-64. – reference: Flynn M. (2003) Review of journey to independence: what self advocates tell us about direct payments. A joint research project from Swindon People First and the Norah Fry Research Centre. Journal of Learning Disabilities 7, 375-376. – reference: Atkinson D., McCarthy M. & Walmsley J. (2000) Good Times Bad Times: Women With Learning Disabilities Telling Their Stories. BILD, Kidderminister. – reference: Bjornsdottir K. & Svensdottir A. (2008) Gambling for capital: learning disability, inclusive research and collaborative life histories. British Journal of Learning Disabilities 36, 263-270. – reference: Williams V. & Simons K., Swindon People First Research Team. (2005) More researching together: the role of nondisabled researchers in working with People First members. British Journal of Learning Disabilities 33, 6-14. – reference: Williams V. (1999) Researching together. British Journal of Learning Disabilities 27, 48-51. – reference: Bigby C., Ramcharan P. & Frawley P. (2010) Researching self advocacy: the first 3 years of an inclusive study by self advocates and academics. Journal of Applied Research in Intellectual Disabilities 23, 453. – reference: Emerson E., Malam S., Davies I. & Spencer K. (2005) Adults with Learning Disabilities in England, 2003/04. Health and Social Care Information Centre, London. – reference: McLaughlin H. (2010) Keeping service user involvement in research honest. British Journal of Social Work 40, 1591-1608. – reference: Redmond M. (2005) Co-researching with adults with learning disabilities: roles, responsibilities and boundaries. Qualitative Social Work: Research and Practice 4, 75-86. – reference: Bigby C. & Frawley P. (2010) Reflections on doing inclusive research in the "Making life good in the community" study. Journal of Intellectual & Developmental Disability 35, 53-61. – reference: Johnson K., Frawley P., Hillier L. & Harrison L. (2002) Living safer sexual lives: research and action. Tizard Learning Disability Review 7, 4-9. – reference: Stevenson M. (2010) Flexible and responsive research: developing rights-based emancipatory disability research methodology in collaboration with young adults with Down syndrome. Australian Social Work 63, 35-50. – reference: McCarthy M. & Millard L. (2003) Discussing menopause with women with learning disabilities. British Journal of Learning Disabilities 31, 9-18. – reference: Chapman R. & McNulty N. (2004) Building bridges? The role of research support in self-advocacy. British Journal of Learning Disabilities 32, 77-85. – reference: Sample P. (1996) Beginnings: participatory action research and adults with developmental disabilities. Disability & Society 11, 317-332. – reference: Nind M. (2009) Conducting Qualitative Research with People with Learning, Communication and other Disabilities: Methodological Challenges. National Centre for Research Methods, pp. 24. (ESRC National Centre for Research Methods Review Paper, (NCRM/012)). – reference: Goodley D. (1998) Supporting people with learning difficulties in self-advocacy groups and models of disability. Health & Social Care in the Community 6, 438-446. – reference: Knox M., Mok M. & Parmenter T. (2000) Working with the experts: collaborative research with people with an intellectual disability. Disability & Society 15, 49-62. – reference: Richardson M. (1997) Learning disabilities. Participatory research methods: people with learning disabilities. British Journal of Nursing 6, 1114-1121. – reference: Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities Past, Present and Futures. Jessica Kingsley, London. – reference: Gilbert T. (2004) Involving people with learning disabilities in research: issues and possibilities. Health & Social Care in the Community 12, 298-308. – reference: Rodgers J. (1999) Trying to get it right: undertaking research involving people with learning disabilities. Disability & Society 14, 421-433. – reference: Chappell A.L. (2000) Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities 28, 38-43. – reference: Ramcharan P. (2003) Book Review Townsley, R., Howarth, J., Graham, M. & LeGrys, P. (2002). Committed to change: promoting the involvement of people with learning disabilities in staff recruitment. Bristol: the Policy Press and the Joseph Rowntree Foundation. Journal of Learning Disabilities 7, 378-379. – reference: Atkinson D. (2005) Research as social work: participatory research in learning disability. British Journal of Social Work 35, 425-434. – reference: Kellett M. & Nind M. (2001) Ethics in quasi-experimental research on people with severe learning disabilities; dilemmas and compromises. British Journal of Learning Disabilities 29, 51-55. – reference: Ward L. & Simons K. (1998). Practising partnership: involving people with learning difficulties in research. British Journal of Learning Disabilities 26, 128-131. – reference: Whittaker A. (1997) Looking at Our Services: Service Evaluation by People with Learning Difficulties. Kings Fund, London. – year: 2011 – volume: 11 start-page: 349 year: 2011 end-page: 363 article-title: Participatory data analysis: a step too far publication-title: Qualitative Research – year: 2009 – volume: 31 start-page: 9 year: 2003 end-page: 18 article-title: Discussing menopause with women with learning disabilities publication-title: British Journal of Learning Disabilities – volume: 7 start-page: 4 year: 2002 end-page: 9 article-title: Living safer sexual lives: research and action publication-title: Tizard Learning Disability Review – year: 2005 – volume: 40 start-page: 213 year: 2012 end-page: 221 article-title: Any added value? Co‐constructing life stories of and with people with intellectual disabilities publication-title: British Journal of Learning Disabilities – volume: 27 start-page: 48 year: 1999 end-page: 51 article-title: Researching together publication-title: British Journal of Learning Disabilities – volume: 36 start-page: 128 year: 2008 end-page: 133 article-title: Pathways to participatory research in developing a tool to measure feelings publication-title: British Journal of Learning Disabilities – volume: 32 start-page: 77 year: 2004 end-page: 85 article-title: Building bridges? The role of research support in self‐advocacy publication-title: British Journal of Learning Disabilities – volume: 6 start-page: 1114 year: 1997 end-page: 1121 article-title: Learning disabilities. Participatory research methods: people with learning disabilities publication-title: British Journal of Nursing – year: 1998 – volume: 29 start-page: 51 year: 2001 end-page: 55 article-title: Ethics in quasi‐experimental research on people with severe learning disabilities; dilemmas and compromises publication-title: British Journal of Learning Disabilities – volume: 27 start-page: 43 year: 1999 end-page: 47 article-title: Participation in research by people with learning disability: origins and issues publication-title: British Journal of Learning Disabilities – volume: 28 start-page: 38 year: 2000 end-page: 43 article-title: Emergence of participatory methodology in learning difficulty research: understanding the context publication-title: British Journal of Learning Disabilities – volume: 9 start-page: 345 year: 2005 end-page: 357 article-title: Partnership working between university researchers and self‐advocacy organizations: ‘A way forward for inclusion?’ In England and ‘Fine feathers make a fine bird’ in Flanders publication-title: Journal of Intellectual Disabilities – volume: 36 start-page: 271 year: 2008 end-page: 276 article-title: This is my truth, tell me yours: exploring the internal tensions within collaborative learning disability research publication-title: British Journal of Learning Disabilities – year: 2008 – volume: 35 start-page: 53 year: 2010 end-page: 61 article-title: Reflections on doing inclusive research in the “Making life good in the community” study publication-title: Journal of Intellectual & Developmental Disability – year: 1997 – volume: 11 start-page: 317 year: 1996 end-page: 332 article-title: Beginnings: participatory action research and adults with developmental disabilities publication-title: Disability & Society – volume: 33 start-page: 6 year: 2005 end-page: 14 article-title: More researching together: the role of nondisabled researchers in working with People First members publication-title: British Journal of Learning Disabilities – volume: 40 start-page: 1591 year: 2010 end-page: 1608 article-title: Keeping service user involvement in research honest publication-title: British Journal of Social Work – volume: 7 start-page: 375 year: 2003 end-page: 376 article-title: Review of journey to independence: what self advocates tell us about direct payments. A joint research project from Swindon People First and the Norah Fry Research Centre publication-title: Journal of Learning Disabilities – volume: 7 start-page: 378 year: 2003 end-page: 379 article-title: Book Review Townsley, R., Howarth, J., Graham, M. & LeGrys, P. (2002). Committed to change: promoting the involvement of people with learning disabilities in staff recruitment. Bristol: the Policy Press and the Joseph Rowntree Foundation publication-title: Journal of Learning Disabilities – volume: 14 start-page: 421 year: 1999 end-page: 433 article-title: Trying to get it right: undertaking research involving people with learning disabilities publication-title: Disability & Society – start-page: 83 year: 2004 end-page: 111 – volume: 11 start-page: 54 year: 2004 end-page: 64 article-title: Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research publication-title: Nursing Inquiry – volume: 6 start-page: 438 year: 1998 end-page: 446 article-title: Supporting people with learning difficulties in self‐advocacy groups and models of disability publication-title: Health & Social Care in the Community – year: 2007 – year: 2003 – year: 2000 – volume: 15 start-page: 49 year: 2000 end-page: 62 article-title: Working with the experts: collaborative research with people with an intellectual disability publication-title: Disability & Society – volume: 63 start-page: 35 year: 2010 end-page: 50 article-title: Flexible and responsive research: developing rights‐based emancipatory disability research methodology in collaboration with young adults with Down syndrome publication-title: Australian Social Work – volume: 16 start-page: 187 year: 2001 end-page: 205 article-title: Normalisation, emancipatory research and inclusive research in learning disability publication-title: Disability & Society – volume: 36 start-page: 263 year: 2008 end-page: 270 article-title: Gambling for capital: learning disability, inclusive research and collaborative life histories publication-title: British Journal of Learning Disabilities – volume: 27 start-page: 54 year: 2014 end-page: 64 article-title: A collaborative group a method of inclusive research: ‘That's how you get things done by working together publication-title: Journal of Applied Research in Intellectual Disabilities – volume: 4 start-page: 75 year: 2005 end-page: 86 article-title: Co‐researching with adults with learning disabilities: roles, responsibilities and boundaries publication-title: Qualitative Social Work: Research and Practice – volume: 23 start-page: 453 year: 2010 article-title: Researching self advocacy: the first 3 years of an inclusive study by self advocates and academics publication-title: Journal of Applied Research in Intellectual Disabilities – volume: 40 start-page: 83 year: 2012 end-page: 84 article-title: The research and work of learning disabled people with their allies and supporters (Special Issue) publication-title: British Journal of Learning Disabilities – volume: 36 start-page: 39 year: 2011 end-page: 48 article-title: Reflections on a participatory project: the rewards and challenges for the lead researchers publication-title: Journal of Intellectual & Developmental Disability – volume: 26 start-page: 128 year: 1998 end-page: 131 article-title: Practising partnership: involving people with 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The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available... Background: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is... The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide... BackgroundThe inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available... |
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| SubjectTerms | Community-Based Participatory Research Cooperative Behavior Disabilities Disabled Persons emancipatory research Feasibility Studies Humans Inclusion inclusive research Intellectual disabilities Intellectual Disability Literature Reviews Mental Retardation Participatory Research Research Methodology Research Needs Research Personnel research with people with intellectual disability Teamwork |
| Title | Conceptualizing Inclusive Research with People with Intellectual Disability |
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