The language of involvement, diversity and inclusion

1. The language of involvement, diversity and inclusion Paul Ramcharan, School of Nursing and Midwifery, University of Sheffield.

2. What I will do:The aim will be to produce information sufficient to prompt discussion in relation to models of inclusive research • Work through one example of a piece of research that is designed as inclusive research • Make some comments about the different terminology around inclusive research • Show that each approach has its own problems • Leave the floor open to discussion of the issues.

3. An Example: The long terms relationships of young people with learning disabilities. Some background Organisations of disabled people do not have the funds to themselves commission research. However, Some research funding agencies (e.g. The Big Lottery Fund or Joseph Rowntree) are distributing funds to Voluntary sector organisations.

4. CHANGE Research (con’td) • Paul Ramcharan and Penny Curtis visit CHANGE in Leeds proposing to look at the maternity care experiences of women with learning disabilities • Over a period of several months CHANGE tell us that their work has been on mothers who have had their children taken away. • They now want to do research about sexuality and relationships of young people with learning disabilities because this is where they see the problem as originating.

5. CHANGE Research (con’td) • Paul and Penny acquiesce. They write a detailed technical proposal. • CHANGE have been developing theatre. They want the theatre to be used in the research. • Paul and Penny acquiesce.

6. CHANGE Research (con’td) • In collaboration over a period of months CHANGE with Paul and Penny decide to recruit 20 young people with learning disabilities between 14 and 25 from schools and colleges. • Their work using interactive theatre around the issues of relationships and sexuality will be the centre-piece of the research • The work will involve 20 weeks forming the interactive theatre troupe and 20 weeks working around issues of sexuality. The final dissemination of this part of the research will be a play.

7. CHANGE Research (con’td) • There will be Focus groups with teachers and governors at schools and colleges • There will be individual interviews with 20 parents • There will be a national questionnaire to colleges drawing from findings of interview data about what sexuality and relationship training is provided

8. CHANGE Research (con’td) • The theatre will be managed by one non-disabled member of CHANGE staff (part time and two people (part time) with a learning disability. They will be paid a researcher’s salary • The University will employ one Research Assistant

9. CHANGE Research (con’td) • Thematic analysis of theatre sessions, interview and Focus Group data will be undertaken by CHANGE with the RA. • The RA and his/her supervisors will carry out additional thematic analysis and statistical analysis of the questionnaire data.

10. CHANGE Research (con’td) • This will be the first project nationally to be operated on a plain language policy and it will use the CHANGE Picture Bank for this. However, an illustrator (part time) will also be hired to undertake some of this work. • The proposal was submitted as a plain language document. The academic proposal was appended to this.

11. CHANGE Research (con’td) Dissemination will be: • Theatre performance • Five plain language leaflets on sexuality and relationships • Two regional gatherings to politicise and operationalise the research with key invitees from amongst organisations of disabled people and national policy advisors • An article in a popular young people’s magazine • A five thousand word plain language report for the funding agency • Academic articles.

12. Features of the research • Focus collaborated over, but users kept control • Users to be involved in data collection • User to be involved in analysis • Users to be involved in dissemination • Users to own the results and take it forward to make policy and political change

13. Involvement in Research – The options Commissioning prioritising Planning Managing Theorising Operationalising Collecting data Analysis Dissemination Project Steering and Management

14. Summary of User Involvement in research projects listed on INVOLVE website Stage on involvementNumber of projects% Prioritising research topic 120 66 Planning Research 139 77 Managing Research 91 50 Designing research instruments 131 72 Undertaking research 94 52 Analysing research 85 47 Writing publications 61 34 Disseminating 101 56 Implementing action 63 35 (As at December 2004)

15. What involve? • Very few details on INVOLVE WEBSITE • Very few details in reports from studies • Where there are examples reported the experience is never straight forward

16. Commissioning prioritising Planning Managing Theorising Operationalising – planning research instruments Collecting data Analysis Dissemination Project steering

17. Traditional Research • Users passive • Users as subjects to research and researchers • Researchers, academics and policy-makers are knowledge creators • Scientific knowledge as privileged

18. Three models • Consultation – where consumers are consulted with no sharing of power over decision-making • Collaboration – that involves an active ongoing partnership with consumers in the research process • Negotiation – Which involves equality of understanding • User control – where consumers design, undertake and disseminate results of a research project

19. Consultation Advantages: • Simple • Helps people to feel safe if not involved before • Allows expression of views without commitment or time for action required Disadvantages: • Can lead to frustration or fatigue • Maintains power of academics and professionals

20. Collaboration Advantages: • Outcome measures, assessment criteria and evaluation more relevant to consumers • Better chance of recruiting consumers and dealing with consent issues • Greater sense of consumer ownership Disadvantages: • Issues of time and cost • Additional supports required to sustain commitment • Problems with power ‘sharing’

21. Negotiation Advantages: • Equal knowledge and stated values and ethos • Equal partners • Negotiated outcome with which everyone agrees Disadvantges: • Nobody knows what they don’t/can’t know • Problems identifying what constitutes equality • Liberal values can lead to arguments amongst parties

22. User Control Advantages: • Research priorities reflect those of users • Evidence collected more likely to missed by academic researchers • Higher sense of ownership and, hence, more commitment Disadvantages: • Lack of experience and expertise • Higher research costs • Lack of evidence about what constitutes good facilitation and support • Claims that the research cannot be scientific and independent.

23. Some conclusions: • It must at all times be possible to say what is being gained by undertaking any form of inclusion • It must be made clear that involvement is not a form of validity • Show how and why the research will challenge oppression of both users and academic researchers • Explain how the research findings will affect the work of professionals and the lives of disadvantaged and vulnerable people • Explain how participation will be meaningfully accomplished • State clearly the values underpinning the research • Publish work not only for other academics and professionals but in ways that make the findings available to the users themselves • Establish a reflexivity to all processes involved in the research to identify and challenge inequalities between those involved • Budget for meaningful involvement

26. Why potentially valuable? • Will offer different perspective • Can make sure research priorities are important to them • Can help to ensure that money and resources are not wasted on research that has little or no relevance • Can ensure research does not measure outcomes that only academics and professionals find important • Can recruit peers for research projects • Are better placed to access people who are marginalised (hard to find) • Can help in dissemination of research findings • Can be empowered through taking part • Are involved in the increasing political priority of involving service users around the services they receive.

27. The non-emancipatory model Telford et al. (2004): • Research roles of consumers and researchers agreed • Budgets should include all costs of consumer involvement in the research • Researchers respect the differing skills, knowledge and experience of consumers • Consumers are offered training and support • Researchers should have necessary skills to involve consumers in the research process • Involvement in recruiting consumers • Consumer involvement described in the research reports • Research findings made available in formats and language that is understandable to them

28. Ong (2003) Involving users in low back pain research Aim: To determine how patient and professional perceptions of low back pain and its treatment relate to the use of healthcare and the subsequent outcomes using Focus groups with GPs, other health care practitioners and users: • Tensions involving patients as co-researchers in designing tools. • Differences in experiences of low back pain led to disagreements about the approach of the research and users seeking to use their interests and not users in general

29. Rodgers (1999) Trying to Get it Right: Undertaking Research involving people with learning difficulties: Aim: To examine health of people with learning difficulties from their own point of view using focus groups: • Research was suggested by a group of women with learning disabilities But also reflected interests of researcher and local health service managers

30. Rodgers (Cont’d) • There was much success in developing questions for the focus groups with people with learning difficulties acting as consultants. However,

31. Rodgers (Cont’d) • Permissions were required from ethics committees, GPs, parents and services. • Accommodations were requested between the various partner organisations that funded the research in terms of employment and support for users, The permissions and accommodations compromised the voice and interests of the co-researchers with learning difficulties.

32. Rodgers (Cont’d) • Despite people with learning difficulties being employed as co-interviewers in Focus Groups, the researcher found herself asking most of the questions, • Because the research design was emergent analysis had to be undertaken between Focus Groups. This excluded the consultants to a huge degree However,

33. Rodgers (Cont’d) • The users were very much involved in developing the plain language report and in dissemination Overall, There was a ‘flight of power’ (Walmsley and Johnson, 2003) back to researcher control because of the context and the way research is organised and undertaken. ‘The rhetoric of participation sounds very rosy; the reality on the other hand can be quite different’ (Walmsley and Johnson, 2003).

34. Flight of power • Sleight of hand by academics • Meeting an agenda for inclusion without handing over power • Maintaining the interests of researchers, services and professionals • Continued iatrogenesis

35. The Social Model of Disability ‘Impairment is the functional limitation within the individual caused by physical, mental or sensory impairment. Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level to others due to physical and social barriers’, (Barnes, 1991). ‘Researchers should be espousing commitment not value-freedom, engagement not objectivity and solidarity not independence. There is no independent haven or middle ground when researching oppression: academics and researchers can only be with the oppressors or the oppressed’, (Barnes, 1996).

36. The Emancipatory Model of Research Of participatory approaches Oliver (1999) argues in ‘Final Accounts and the Parasitic People’: ‘It attempts to deal with the problem of emancipation by sharing or attempting to share responsibility and, indeed, blame with the research participants. The worst example of this is the attempt to do participation by employing a few disabled people as researchers, often without much support or understanding of what that means…’ Argues for, An inversion of the ‘social relations’ and ‘means’ of research production (cf Karl Marx)

37. Attributes of the ‘emancipatory model’ • Being commissioned by democratic organisations of disabled people • Accountability to democratic organisations of disabled people • Being a tool for improving the lives of disabled people • Providing the opportunity for disabled people to be researchers themselves • Involving a reflexive stance to the research (Chappell, 2000)

38. Criticisms of emancipatory research • Cost (The CHANGE bid was £385k) of support, in terms of time and planning for the work, • The assumption that it is ‘noble intent’ is the preserve of emancipatory research, • Conviction and personal values as the sole arbiter of validity. Experience as the sole evidence of expertise.

39. Criticisms of emancipatory research (cont’d) • The extent to which all voices can and are taken into account • Alliance with specific forms of data collection strategies.