Aim of the presentation

1. An evaluation of the move from hostel accommodation to independent tenancies for people with learning disabilities and mental health difficulties Kate Karban, University of Bradford, UK

2. Aim of the presentation • Provide an overview of the evaluation project and findings • Locate the work within a user involvement framework • Identify some of the issues and challenges • Lessons from the evaluation

3. Project Overview • A 3 year partnership project between Progress Care Housing Association, Leeds City Council and Leeds Metropolitan University, funded by the Big Lottery. •  The aim was to see how the move from large, hostel accommodation can lead to more independence, integration into local communities and increased social and employment opportunities for people with mental health problems or learning difficulties . • Over 340 people have moved into new supporting living accommodation between 2009 and 2011. • The research featured a high level of service user and carer involvement, with an initial group of 6, increased to 10, co-researchers working with the research team. • The research involved ‘before’ and ‘after’ move interviews and questionnaires with service users (53), staff (61)and family carers (17).

4. Partners in research

5. Participatory Action Research • Goals to produce practical knowledge, action to make knowledge available and to be transformative socially & for individuals taking part (Schneider, 2012). • Various levels of involvement ranging from consultation, collaboration through to service user led / controlled research (Turner & Beresford, 2005; Minogue et al, 2009).

6. User Involvement in Research • May vary at different points of the research cycle with different opportunities for engagement • Benefits of involving users and carers as interviewers (Bengtsson-Tops, A. & Svensson, B., 2010) • With some exceptions, fewer examples of involvement of people with learning disabilities (Abell et al, 2007).

7. Recruitment of co-researchers • Publicity sent to all the hostels and meetings held with residents and staff to explain the work using pictures and ‘Research Bingo’ to aid understanding. • Interested people (15) asked to complete brief application and attend interview. • Initially 6 successful applicants were offered weekly training sessions at Leeds Met. from October 2009. A further 4 joined the team in July 2010. • Involvement in a range of activities including questionnaire design and piloting, interviewing and data transcription and analysis.

8. Issues and Challenges • Limits of flexibility evident in issues over financial payments to co-researchers (Read & Maslin-Prothero, 2011) • Criminal Record Bureau (CRB) checks • Diverse group of co-researchers • Ethical approval for Participatory and Action Research design • Positioning of evaluation project and relationship with service provider organisations

9. Positive comments.... • People very happy with their new homes I love it here. I love everything about it, it’s my home… (Mental health tenant) Comments on more space, a larger bedroom, their own bathroom, and being able to lock the bathroom door. (Learning disability service tenant) • Improvements in people’s lives and relationships I’m still settling down, but I like the independence, you know. I do like to do my own things, in my own time… [In the hostel] the staff all make decisions for me… [Now] I can make my own decisions… I can manage my own business, in my own time, no hassling, no questioning… (Mental health service tenant) Freedom. More say in what you do. (Learning disability service tenant)

10. Positive comments (2) …[someone] who within a hostel environment had caused a lot of problems bordering on safeguarding issues.... much more privacy, much more space of her own ..., there seemed to be just a profound shift in her behaviour and her enjoyment of life… (Mental health worker) People have actually started to take a pride in themselves. Started to feel more self-worth, that they are worth something. So they’ve started going out and mixing with the community again, feeling that they can go out and when they do go out they feel a lot better. (Mental health worker) Because he has his own flat, you don’t feel as if you’re intruding, it’s just like he has his own place, whereas at [previous hostel], all he had was his room. I mean staff always made you welcome but it still isn’t the same as being able to shut your front door. (Learning disability family carer)

11. Continuing Concerns • More time needed to establish new ways of working for staff Some of them are bossy… Just boss me about. They tell me to clean my room. (Learning disability service tenant) It’s the same responsibilities and it’s the same customers, just a different address. (Learning disability service worker) There may be tweaks here and there to impress the government or to impress ILP, but I believe it will be run along the same lines as a hostel… (Mental health worker)

12. Continuing Concerns (2) • Continuing attention to promote social activities and employment possibilities He’s got quieter. You can see he’s a bit lonely, he just sits there in lounge …whereas before they all used to interact (Learning disability family carer) • Communication with carers But the managers were hands-on, you used to see them every time you went and if you had any problems you could talk to them. Now [the manager is based elsewhere] and you’ve got to make an appointment to see him. (Learning disability family carer) • Communication between staff

13. The experiences of the co-researchers • Contribution to different tasks including questionnaire design, interviewing, analysis, dissemination • Training and team building • Benefits for co-researchers in acquiring new skills, increased confidence, financial gain & new relationships

14. Key learning points: • Participatory approach is not straightforward and requires attention to complex relationships and agendas • Takes time to build trust with stakeholder groups • Working ‘on the margins’ • Requires continuing organisational and cultural change

15. Concluding thoughts In response to Schneider: • Practical knowledge regarding the changes has been provided by the evaluation • This has been made available through regular reports and a series of action learning workshops • Has had transformative impact on co-researchers and others involved including use of creative approaches to evaluation

16. But.... • Also a need to avoid binary or oppositional thinking that can accompany categories such as professional, service user • Over time these may shift and can obscure rather than illuminate other issues • Need to avoid complicity with dominant representations of the researched and not re-inscribe powerlessness (Bhavani, 2004) • Need to recognise that the involvement of service users within a managerialist or consumerist frame related to pre-determined areas of inquiry may not necessarily promote social justice

17. Further information Include Me In Research Project www.progressgroup.org.uk/about_us/subsidiaries/pch/include-me-in k.karban@bradford.ac.uk

18. References • Abell, S., Ashmore, J., Beart, S., Brownley, P., Butcher, A., Clarke, Z., Combes, H., Francis, E., Hayes, S., Hemmingham, I., Hicks, K., Ibrahim, A., Kenyon, E., Lee, D., McClimens, A., Collins, M., Newton, J. & Wilson, D. (2007) Including everyone in research: The Burton Street Research Group. British Journal of Learning Disabilities, 35, 121-124 • Bengtsson-Tops, A. & Svensson, B. (2010) Mental health users’ experiences of being interviewed by another user in a research project. A qualitative study. Journal of Mental Health, June 2010; 19(3): 234–242 • Bhavani, K. (2004) Tracing the Contours – Feminist Research and Feminist Objectivity In Nagy Hesse-Biber, S. & Yaiser, M. (Eds.) Feminist Perspectives on Social Research. Oxford: Oxford University Press • Minogue, V., Holt, B., Karban, K., Gelsthorpe, S., Firth, S. & Ramsay, T. (2009) Service User and Carer Involvement in Mental Health Education, Training and Research – A Literature Review. Mental Health and Learning Disabilities Research and Practice, 2009, 211 – 227 • Read, S. & Maslin-Prothero, S. (2010) The Involvement of Users and Carers in Health and Social Research: The Realities of Inclusion and Engagement. Qualitative Health Research, 21(5):704-713 • Schneider, B. (2012) Participatory Action Research. Mental Health Service User Research and the Hearing (our) Voices Projects. International Journal of Qualitative Methodology, 11(2) • Turner, M. & Beresford, P. (2005) User Controlled Research – Its Meaning and Potential. Final report. Shaping Our Lives and the Centre for Citizen Participation, Brunel University