Quality and capacity in inclusive research with people with learning disabilities
Lead Research Organisation:
University of Southampton
Department Name: School of Education
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Publications
Melanie Nind (Author)
(2013)
PMLD Link
in PMLD Link
Melanie Nind (Author)
(2013)
Is changing who leads research a methodological innovation?
in WISERD Annual Conference 2013
Melanie Nind (Author)
(2013)
Understanding quality in inclusive research: a process of dialogue
in Nordic Network on Disability Research Conference, Turku, FI, 30 - 31 May 2013.
Melanie Nind (Author)
(2013)
Inclusive research: where does it leave people with PMLD?
in PMLD Link
Melanie Nind (Author)
(2013)
Building an inclusive research community: the challenges and benefits
in Learning Disability Today
Melanie Nind (Speaker)
(2012)
Inclusive research and inclusive education : unnecessarily unconnected?
Nind
(2020)
Inclusive Research: Research Methods
Nind
(2014)
What Is Inclusive Research?
Nind M
(2017)
The practical wisdom of inclusive research
in Qualitative Research
Nind M
(2013)
Doing research inclusively: bridges to multiple possibilities in inclusive research
in British Journal of Learning Disabilities
| Description | Study findings indicate that working in research partnerships to conduct inclusive research with people with learning disabilities involves academics, researchers with learning disabilities, and their supporters each providing a bridge to other networks and experiences. For the participant-researchers involved in this study this was facilitated by dialogue. Quality of the teamwork was important to the people involved and those funding them and this involves trust, openness, shared understandings, shared purposes, and finding ways of working that suit everybody. The sensitivity of the power dynamics when academic researchers and researchers with learning disabilities work together remained at the forefront of their concerns. We can better understand the ways of working using the model generated from the data which comprises formalised, improvised, support-emphasising, negotiation-emphasising, and interdependence-emphasising approaches. The knowledge that inclusive research generates is largely experiential, grounded knowing about the life experiences of people with learning disabilities and considered useful to them. This kind of knowledge was valued by participant-researchers as authentic, but the value of different kinds of knowledge and knowing was recognised. In terms of how inclusive research can be assessed, findings indicated the importance of relevance and interest to people with learning disabilities, their meaningful involvement, and making their lives better. Assessing the quality of inclusive research combines assessing quality of methods and partnerships, transparency of processes, and credible findings, with assessing sustainable social inclusion benefits. People involved with commissioning or doing inclusive research expect a great deal from it, including that it will create knowledge, give voice, support individual and organisations, and provide training, skills, networks. This means that evaluating its success is inevitably complex and multi-layered. Such evaluation may be guided by the 'Questions to ask oneself when judging the quality of inclusive research with people with learning disabilities' developed from the data and appended to the full report and available on the project website (www.doingresearchinclusively.org). The benefits of researching inclusively were seen by participant-researchers to stem from including the voice, experiences, qualities and cultural knowledge of people with learning disabilities. Problems were found to relate to barriers residing in attitudinal, social and material domains rather than within individuals. Accessing the academy and funding opportunities were particularly problematic for researchers with learning disabilities. Regardless of cultural shifts that are supportive of inclusive research, its sustainability depends on addressing these barriers. Good science and good inclusive research practice were found to come together when the research answers important questions not answerable in other ways; when it reaches participants/communities/knowledge that otherwise could not be accessed; when it reflexively uses the insider, cultural knowledge of people with learning disabilities; when it is authentic; and when it has impact on their lives. The overview gained by reflecting on a range of inclusive research shows that despite advances issues of accessibility and power retain prominence, funders who support inclusive research remain limited, and research career opportunities for learning disabled researchers are few. Maintaining dialogue regarding the concept and practices of doing research inclusively is needed for further development to be sustained. |
| Exploitation Route | The data are archived for future use by other research. The findings have been translated into practical guidance and so should inform future inclusive research. The findings include criteria for judging the quality of inclusive research which can be used by those evaluating funding applications and research reports claiming a participatory or inclusive research approach. The report is available in an accessible format and freely available so that people with learning disabilities wanting to do research, or do it better, can use the collective knowledge of those who have better doing this. |
| Sectors | Education,Healthcare |
| URL | http://www.doingresearchinclusively.org |
| Description | Partnership with BAROD CIC to develop a TimeBank for Inclusive Research. Partnership with Dorset People First and Choices Advocacy to facilitate people with learning disabilities selecting research topics, being involved in research activity, and learning about research dissemination. |
| First Year Of Impact | 2014 |
| Sector | Communities and Social Services/Policy |
| Impact Types | Societal |
| Description | Impact Acceleration Award |
| Amount | £10,000 (GBP) |
| Organisation | University of Southampton |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2015 |
| End | 09/2016 |
| Description | Response mode |
| Amount | £296,996 (GBP) |
| Funding ID | ES/P011764/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2018 |
| End | 02/2020 |
| Description | Towards equal and active citizenship : pushing the boundaries of participatory research with people with learning disabilities |
| Amount | £18,000 (GBP) |
| Funding ID | ES/J02175X/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2012 |
| End | 12/2014 |
| Description | Web Science Institute Research Collaboration Stimulus Fund Application |
| Amount | £14,332 (GBP) |
| Organisation | University of Southampton |
| Department | University of Southampton Web Science Institute |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 07/2015 |
| Description | SPIRIT |
| Organisation | Choices Advocacy |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Andrew Power, University of Southampton and I have teamed up with these two advocacy groups representing people with learning disabilities. The collaboration is SPIRIT - Southampton Platform for Inclusive Research and Ideas Together. Power and Nind contribute academic expertise and funded the early meetings through an ESRC Impact Acceleration Award. |
| Collaborator Contribution | These two advocacy groups representing people with learning disabilities have joined us to form a collaboration - SPIRIT - Southampton Platform for Inclusive Research and Ideas Together. The partners provide the direct input of people with learning disabilities into plans for future research projects, joint grant applications etc. They contribute ideas about the research needed by stakeholders with learning disabilities and how they can contribute. They are forming an Advisory Group for our new ESRC funded project Reclaiming Social Care. |
| Impact | SPIRIT launch conference https://spiritdisabilityplatform.wordpress.com/launch-event/ Partnership with the Nordic Inclusive Research Network. Presentations by May Ostby, Anita Gjermestad and self-advocates from Norway at the SPIRIT launch in June 2016; presentations by Nind and Power at the Nordic Inclusive Research Network seminars in Norway in November 2016 and November 2017. Two SPIRIT events exploring how being 'user led' can have a positive impact in disabled people's lives - May 9th 2017 (Bournemouth) & May 30th 2017 (Southampton). |
| Start Year | 2015 |
| Description | SPIRIT |
| Organisation | People First |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Andrew Power, University of Southampton and I have teamed up with these two advocacy groups representing people with learning disabilities. The collaboration is SPIRIT - Southampton Platform for Inclusive Research and Ideas Together. Power and Nind contribute academic expertise and funded the early meetings through an ESRC Impact Acceleration Award. |
| Collaborator Contribution | These two advocacy groups representing people with learning disabilities have joined us to form a collaboration - SPIRIT - Southampton Platform for Inclusive Research and Ideas Together. The partners provide the direct input of people with learning disabilities into plans for future research projects, joint grant applications etc. They contribute ideas about the research needed by stakeholders with learning disabilities and how they can contribute. They are forming an Advisory Group for our new ESRC funded project Reclaiming Social Care. |
| Impact | SPIRIT launch conference https://spiritdisabilityplatform.wordpress.com/launch-event/ Partnership with the Nordic Inclusive Research Network. Presentations by May Ostby, Anita Gjermestad and self-advocates from Norway at the SPIRIT launch in June 2016; presentations by Nind and Power at the Nordic Inclusive Research Network seminars in Norway in November 2016 and November 2017. Two SPIRIT events exploring how being 'user led' can have a positive impact in disabled people's lives - May 9th 2017 (Bournemouth) & May 30th 2017 (Southampton). |
| Start Year | 2015 |
| Description | Adventures in positive risk-taking - Keynote lecture |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Keynote lecture linking theoretical work done during and as a result of the Concepts of Access seminar series with earlier work on Intensive Interaction. Included in impact case study because of the interest generated amongst practitioners and families Follow up from Scope charity re their policy-making. Dialogue with delegates who wanted to change practice with their child with learning disabilities |
| Year(s) Of Engagement Activity | 2011,2012 |
| URL | http://eprints.soton.ac.uk/359677/ |
| Description | Illuminating 'positive risk taking' for and by young people with learning disabilities in educational contexts - conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A paper based on conceptual work arising from the Concepts of Access seminar series Powerpoint presentation and abstract led to new international networks of interested colleagues |
| Year(s) Of Engagement Activity | 2011 |
| Description | Inclusive research: responding to the methodological challenges |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A presentation which begins by clarifying what makes inclusive research distinctive. It then addresses three broad challenges faced by inclusive researchers: (i) getting started (establishing research relationships, managing ideas, and promoting practical politics through the ethics of the research); (ii) generating and making sense of data (including the team dynamics in the conduct of the research and approaches to inclusive analysis); and (iii) making research impact (including matters of audience and transparency). The emphasis is on how inclusive researchers have responded to these challenges and how we might usefully think about them; there is no prescription in terms of how things should be done. The presentation is based in part on ESRC-funded research conducted with inclusive researchers, using a focus group dialogic approach, to get a sense of the state of the art in inclusive research and how we might understand what it means to achieve quality in research and inclusivity terms. By sharing a descriptive framework for working together generated from this research the presentation will illuminate various options for doing research inclusively and doing it well. Follow up interest from some government researchers. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://eprints.ncrm.ac.uk/3296/ |
| Description | Judging quality in inclusive research - international seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Opportunity for European researchers and practitioners to learn about the study - led to lively discussion Further invitation to give and international keynote lecture at University of Barcelona and return visit to Southampton from Barcelona academics |
| Year(s) Of Engagement Activity | 2012 |
| URL | http://eprints.soton.ac.uk/337365/ |
| Description | Moving towards inclusive education: Can inclusive research help? Seminar at Sussex University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Lively discussion and follow up questions from people viewing the talk online. Further invitation to give keynote presentation to ESRC student conference |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://eprints.soton.ac.uk/363687/ |
| Description | NDA Training, Dublin |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | An intensive day's training for the government researchers of the National Disability Authority in Dublin, Ireland. This was invited training in response to identified needs within the group of researchers and the teams they support. The training entitled 'Research Methods with Disabled, Vulnerable & Challenging Participants - Learning from Inclusive Research' was based in large part on methods used and lessons learned from the Quality & Capacity Building study. Participants identified development needs in advance and committed to using lessons from this research in their work. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Norway network launch, Molde |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | I gave an Invited seminar at Molde University College, Norway on Including persons with intellectual disability in research and took part in formal discussions to establish an inclusive research network in Norway, The members are academics and people with learning disabilities and their allies wanting to work together in inclusive research. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Norway network, VID |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Support for an international network in Norway comprising academics, professionals and people with learning disabilities interested in doing inclusive research. The network met and discussed challenges and solutions found in the Quality & Capacity Building study. I presented the Invited lead presentation to a wider audience of network members entitled, 'What is inclusive research? A historical and theoretical introduction' during a two-day event on 'Including persons with intellectual disability in research' at VID university, Sandnes, Norway. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Participatory Research Methods: Doing research inclusively - University seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Inaugural seminar for the QUEST (Qualitative Expertise at Southampton) seminar series established interest from qualitative methodologists Talk video recorded and made available online leading to multiple downloads |
| Year(s) Of Engagement Activity | 2013 |
| URL | https://www.quest.soton.ac.uk/training/participatory.php |
| Description | Quality and capacity in inclusive research; seminar paper in own department |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Follow up discussions with individual students and colleagues Interest from students and colleagues |
| Year(s) Of Engagement Activity | 2012 |
| Description | Quality in inclusive research - lecture to postgraduate students |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | One of 6 lectures in a new module for the research training provision for doctoral research students, University of Southampton Education School, repeated in 2014. Sparked interest in participatory approaches for their own theses. 2 students attended further training |
| Year(s) Of Engagement Activity | 2012 |
| Description | Social History of Learning Disabilities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Paper entitled 'Doing research inclusively, doing research well?' presented to the Social History of Learning Disability Annual conference, This conference is an inclusive event bringing together people with learning disabilities, their supporters and allies, professionals and researchers. Around 60 attended, including an international speaker. This led to an alliance with self-advocacy groups in Australia. |
| Year(s) Of Engagement Activity | 2017 |
| Description | What is inclusive research? Podcast |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Podcast about the research and how it has informed this book. Section not completed |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.ncrm.ac.uk/TandE/video/podcasts.php |