Critical perspectives on user involvement

Critical Perspectives on User Involvement

Volumn , Issue , 2011, Pages 1-269

  Barnes, Marian ^a   Cotterell, Phil ^b  

^a UNIVERSITY OF BRIGHTON   (United Kingdom)

^b St Catherine's Hospice   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 85041010221     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Book

References (498)

1. Aaslid, F. S. (2006) 'Facing the dragon: exploring a conscious phenomenology of intoxication', Dr. Polit. thesis, Department of Social Anthropology, NTNU Trondheim: Norwegian University of Science and Technology.
2. Alborz, A. (2002) 'Are primary care groups and trusts consulting local communities?', Health and Social Care in the Community, vol 10, no 1, pp 20-7.
3. Alderson, P. (2001) 'Research by children', International Journal of Social Research Methodology, vol 4, no 2, pp 139-53.
4. Ali, K., Roffe, C. and Crome, P. (2006) 'What patients want: consumer involvement in the design of a randomised controlled trial of routine oxygen supplementation after acute stroke', Stroke, vol 37, pp 865-71.
5. Alldred, P. (1998) 'Ethnography and discourse analysis: dilemmas in representing the voices of children', in Ribbens, J. and Edwards, R. (eds) Feminist dilemmas in qualitative research: Public knowledge and private lives, London: Sage Publications.
6. Alldred, P. and David, M. (2009) 'What's important at the end of the day? Young mothers' values and policy assumption', in Duncan, S., Edwards, R. and Alexander, C. (eds) Teenage parenthood: What's the problem?, London: Tufnell Press.
7. Alderson, P. (2000) Young children's rights: exploring beliefs, principles and practice. London: Jessica Kingsley.
8. Anderson, W. and Florin, D. (2001a) Patient and public involvement in primary care groups and trusts: North Lewisham case study, draft report, London: King's Fund Primary Care Programme.
9. Anderson, W. and Florin, D. (2001b) Patient and public involvement in primary care groups and trusts: Dagenham case study, draft report, London: King's Fund Primary Care Programme.
10. Anderson, W. and Florin, D. (2001c) Patient and public involvement in primary care groups and trusts: Harrow East and Kingsbury case study, draft report, London: King's Fund Primary Care Programme.
11. Anderson, W. and Florin, D. (2001d) Patient and public involvement in primary care groups and trusts: City and Hackney case study, draft report, London: King's Fund Primary Care Programme.
12. Arai, L. (2009) Teenage pregnancy: The making and unmaking of a problem, Bristol: The Policy Press.
13. Archer, M. (1995) Realist social theory: The morphogenetic approach, Cambridge: Cambridge University Press.
14. Ardron, D. and Kendall, M. (2010) 'Patient and public involvement in health research: what is it, and why is it so important?', International Journal of Palliative Nursing, vol 16, no 4, pp 160-2.
15. Armes, D. G. (2006) 'Enablement and exploitation: the contradictory potential of community care policy for mental health services user survivor led groups', PhD thesis, University of Bedfordshire/Luton.
16. Arnstein, S. (1969) A ladder of citizen participation, Journal of the American Institute of Planners, vol 35, no 4, pp 216-24.
17. Attree, P., Morris, S., Clifton, M., Hinder, S. and Vaughan, S. (2009) Exploring the impact of user involvement on health and social care services for cancer in the UK: Final report, London: Macmillan Cancer Support.
18. Aveyard, B. and Davies, S. (2006) 'Moving forward together: evaluation of an action group involving staff and relatives within a nursing home for older people with dementia', International Journal of Older People Nursing, vol 1, pp 95-104.
19. Baggott, R., Allsop, J. and Jones, K. (2005) Speaking for patients and carers: Health consumer groups and the policy process, Basingstoke: Palgrave.
20. Bailey, N. Brown, G. Di Marco, H. Letherby, G. and Wilson, C. (2004) Teenage pregnancy and young motherhood: medical encounters. British Journal of Midwifery, 12:11
21. Bailey, N., Brown, G., Letherby, G. and Wilson, C. (2002) 'Young motherhood: "insider" and "outsider" views', HealthWatch, newsletter (West Midlands Centre for Health Action Research and Training).
22. Barber, R., Boote, J. D. and Cooper, C. (2007) 'Involving consumers successfully in NHS research: a national survey', Health Expectations, vol 10, no 4, pp 380-91.
23. Barber, R., Boote, J., Parry, G., Cooper, C. Yeeles, P. and Cook, S. (2011) 'Can the impact of public involvement on research be evaluated? A mixed methods approach', Health Expectations, doi: 1111/j.1369-7625.2010.00660.x.
24. Barnard, A., Carter, M., Britten, N., Purtell, R., Wyatt, K. and Ellis, A. (2005) The PC11 report: An evaluation of consumer involvement in the London Primary Care Studies Programme, Exeter: Peninsula Medial School.
25. Barnes, C. (1994) Disabled people in Britain and discrimination: A case for antidiscrimination legislation. London: Hurst & Co.
26. Barnes, C. (2003) 'What a difference a decade makes: reflections on doing "emancipator" disability research', Disability & Society, vol 18, no 1, pp 3-17.
27. Barnes, C. and Mercer, G. (2004) Implementation of the social model of disability: Theory and research, Leeds: The Disability Press.
28. Barnes, C. and Mercer, G. (1997) Doing disability research, Leeds: The Disability Press.
29. Barnes, M. (1997a) Care, communities and citizens, Harlow: Addison Wesley Longman.
30. Barnes, M. (1997b) The people's health service?, Birmingham: Health Services Management Centre, University of Birmingham.
31. Barnes, M. (1999) 'Users as citizens: collective action and the local governance of welfare', Social Policy & Administration, vol 33, no 1, pp 73-90.
32. Barnes, M. (2002) 'Bringing difference into deliberation: disabled people, survivors and local governance', Policy & Politics, vol 30, no 3, pp 355-68.
33. Barnes, M. (2005) 'Same old process? Older people, participation and deliberation', Ageing and Society, vol 25, no 2, pp 245-59.
34. Barnes, M. (2007) A final brick in the wall? A history of the Nottingham Advocacy Group, Brighton: University of Brighton, www.brighton.ac.uk/sass/contact/details. php?uid=mb129
35. Barnes, M. (2008a) 'Is the personal no longer political? A response to Charles Leadbeater, Jamie Bartlett and Niamh Gallagher's Making it personal (Demos, 2008)', Soundings, no 39, pp 152-9.
36. Barnes, M. (2008b) 'Passionate participation: emotional experiences and expressions in deliberative forums', Critical Social Policy, vol 28, no 4, pp 461-81.
37. Barnes, M. (2009) 'Authoritative consumers or experts by experience? User groups in health and social care', in Simmons, R., Powell, M. and Greener, I. (eds) The consumer in public services, Bristol: The Policy Press.
38. Barnes, M. (2011) 'Caring responsibilities: the making citizen carers?', in Newman, J. E. and Tonkens, E. (eds) Active citizenship in Europe, Amsterdam: University of Amsterdam Press.
39. Barnes, M. and Bennett, G. (1998) 'Frail bodies, courageous voices: older people influencing community care', Health and Social Care in the Community, vol 6, no 2, pp 102-11.
40. Barnes, M. and Bowl, R. (2001) Taking over the asylum: Empowerment and mental health, Basingstoke: Palgrave.
41. Barnes, M. and Shardlow, P. (1996) 'Identity crisis: mental health user groups and the "problem" of identity', in C. Barnes and G. Mercer (eds) Exploring the divide: Illness and disability, Leeds: The Disability Press.
42. Barnes, M. and Taylor, S. (2007) Involving older people in research: Examples, purposes and good practice, Sheffield: ERA-AGE European Research Area in Ageing Research, http://era-age.group.shef.ac.uk/content/228/
43. Barnes, M. and Walker, A. (1996) 'Consumerism versus empowerment: a principled approach to the involvement of older service users', Policy & Politics, vol 24, no 4, pp 375-93.
44. Barnes, M. and Wistow, G. (eds) (1992) Researching user involvement, Leeds: Nuffield Institute for Health Services Studies.
45. Barnes, M. and Wistow, G. (1994) 'Achieving a strategy for user involvement in community care', Health and Social Care in the Community, vol 2, pp 347-56.
46. Barnes, M., Bauld, L., Benzeval, M., Judge, K., Mackenzie, M. and Sullivan, H. (2005) Health Action Zones: Partnerships for health equity, London: Routledge.
47. Barnes, M., Gell, C. and Thomas, P. (2010) 'Participation and social justice', in I. Greener C. Holden and M. Kilkey (eds) Social policy review: Analysis and debate in social policy 2010, Bristol: The Policy Press.
48. Barnes, M., Harrison, E. and Murray, L. (2011) 'Ageing activists: who gets involved in older people's forums?' Ageing and Society, vol 31, pp 1-20, doi:10.1017/ S0144686X11000328.
49. Barnes, M., Harrison, S., Mort, M. and Shardlow, P. (1999) Unequal partners: User groups and community care, Bristol: The Policy Press.
50. Barnes, M., Knops, A., Newman, J. and Sullivan, H. (2004) 'The micro politics of deliberation: case studies in public participation', Contemporary Politics, vol 10, no 2, pp 93-110.
51. Barnes, M., Newman, J. and Sullivan, H. (2007) Power, participation and political renewal: Case studies in public participation, Bristol: The Policy Press.
52. Barnes, M., Prior, D. and Thomas, N. (1990) 'Social services', in N. Deakin and A. Wright (eds) Consuming public services, London: Routledge.
53. Bate, P. and Robert, G. (2007) Bringing user experience to healthcare improvement: The concepts, methods and practices of experience based design, Oxford: Radcliffe Publishing.
54. Bauman, H.-D. L. (ed) (2008) Open your eyes: Deaf studies talking, Minneapolis, MN: University of Minnesota Press.
55. BBC (British Broadcasting Corporation) (2010) Panorama: The cuts-can you fight back?, Broadcast on BBC One, 17 May.
56. Begum, N. (2006) Doing it for themselves: Participation and black and minority ethnic service users, Participation Report 14, London: Social Care Institute for Excellence.
57. Beresford, P. (1999) 'Making participation possible: movements of disabled people and psychiatric system survivors', in Jordan, T. and Lent, A. (eds) Storming the millennium: The new politics of change, London: Lawrence and Wishart, pp 34-50.
58. Beresford, P. (2002) 'User involvement in research and evaluation: liberation or regulation?', Social Policy & Society, vol 1, no 2, pp 95-105.
59. Beresford, P. (2003) It's our lives: A short theory of knowledge, distance and experience, London: OSP for Citizen Press.
60. Beresford, P. (2007) 'The role of service user research in generating knowledge based health and social care: from conflict to contribution', Evidence & Policy: A Journal of Research, Debate and Practice, vol 3, no 2, pp 329-41.
61. Beresford, P. (2008) 'Welfare users and social policy', in Alcock, P., May, M. and Rowlingson, K. (eds) The student's companion to social policy (3rd edition), Oxford: Blackwell Publishing, pp 259-66.
62. Beresford, P. (2009a) 'Co-production from a user perspective', in Co-production in action: A Social Care Institute for Excellence expert seminar, 1 October, event report, London: SCIE, pp 5-7.
63. Beresford, P. (2009b) 'Developing a social model of madness and distress to underpin survivor research', in Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) This is survivor research, Ross-on-Wye: PCCS Books.
64. Beresford, P. (2010) 'A tale for would be voters', Blog, Society Guardian, 30 April, www.guardian.co.uk/society/joepublic/2010/apr/30/general-election-votingrights
65. Beresford, P. and Branfield, F. (2006) 'Developing inclusive partnerships', Health and Social Care in the Community, vol 14, no 5, pp 436-44.
66. Beresford, P. and Campbell, J. (1994) 'Disabled people, service users, user involvement and representation', Disability and Society, vol 9, no 3, pp 315-25.
67. Beresford, P. (1992) Researching Citizen Involvement: A Collaborative or Colonising Enterprise? in Barnes, M., & Wistow, G. (eds) (1992) Researching User Involvement. Leeds, UK: Nuffield Institute for Health Services Studies
68. Beresford, P. and Croft, S. (1990) From paternalism to participation: Involving people in social services, London: Joseph Rowntree Foundation and Open Services Project, with a foreword by Sir Roy Griffiths and Lady Wagner.
69. Beresford, P. and Croft, S. (1993) Citizen involvement. A practical guide for change, Basingstoke: Macmillan.
70. Beresford, P. and Croft, S. (2004) 'Service users and practitioners reunited: the key component for social work reform', British Journal of Social Work, vol 34, no 1, pp 53-68.
71. Beresford, P. and Evans, C. (1999) 'Research note: research and empowerment', British Journal of Social Work, vol 29, pp 671-7.
72. Beresford, P. and Rose, D. (2009) 'What is research?, in Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) This is survivor research, Ross-on-Wye: PCCS Books, pp 11-22.
73. Beresford, P., Croft, S., Evans, C. and Harding, T. (1997) 'Quality in personal social services: the developing role of user involvement in the UK', in Evans, A., Haverinen, R., Leichsenring, K. and Wistow, G. (eds) Developing quality in personal social services, Aldershot: Ashgate, pp 63-81.
74. Berger, P. L. and Luckmann, T. (1967) The social construction of reality: A treatise in the sociology of knowledge, Harmondsworth: Penguin.
75. Bernard, M. and Scharf, T. (eds) (2007) Critical perspectives in ageing societies, Bristol: The Policy Press.
76. Berry, S. H. (ed) (2008) Kingston Hospital and Kingston Primary Care Patient and Public Involvement Forums: The legacy of their work, New Malden: Number 11 Publishing.
77. Best, S. (2002), Introduction to politics and society, London: Sage Publications.
78. Blake, S., Ruel, B., Seamark, C. and Seamark, D. (2007) 'Experiences of patients requiring strong opioid drugs for chronic non-cancer pain', British Journal of General Practice, February, www.folkus.org.uk/files/Opioid_Project.pdf
79. Bochel, C., Bochel, H., Somerville, P. and Worley, C. (2007) 'Marginalised or enabled voices? "User participation" in policy and practice', Social Policy and Society, vol 7, no 2, pp 201-10.
80. Bode, I. (2003) 'Flexible response in changing environments: the German third sector model in transition', Nonprofit and Voluntary Sector Quarterly, vol 32, no 2, pp 190-210.
81. Boote, J., Baird, W. and Beecroft, C. (2010) 'Public involvement at the design stage of primary health research: a narrative review of case examples', Health Policy, vol 95, pp 10-23.
82. Boote, J., Telford, R. and Cooper, C. (2002) 'Consumer involvement in health research: a review and research agenda', Health Policy, vol 36, pp 213-36.
83. Borkman, T. (1976) 'Experiential knowledge: a new concept for the analysis of self-help groups', Social Service Review, vol 50, pp 445-56.
84. Bovaird, T. (2007) 'Beyond engagement and participation: user and community coproduction of public services', Public Administration Review, vol 67, no 5, pp 846-60.
85. Boxall, K., Dowson, S. and Beresford, P. (2009) 'Selling individual budgets, choice and control: local and global influences on UK social care policy for people with learning difficulties', Policy & Politics, vol 37, no 4, 499-515.
86. Bradwell, P. and Marr, S. (2008) Making the most of collaboration: An international survey of public service co-design, Demos report 23, London: Demos.
87. Brady, L. and Ghosh, G. (2009) 'Involving young people in public health research', INVOLVE newsletter: Summer 2009, www.invo.org.uk/Newsletters.asp
88. Brady, L. M., Law, C. and Gibb, J. (2008) Young People's Public Health Reference Group: Pilot project: Final report, London: NCB, www.york.ac.uk/phrc/YPPHRG_ FR_1.08.pdf
89. Brand, D. (2009) 'SCIE perspective on co-production', in Co production in action: A Social Care Institute for Excellence expert seminar, 1 October, event report, London: SCIE, pp 4-5.
90. Brandsen, T. and van Hout, E. (2006) 'Co management in public service networks: the organizational effects', Public Management Review, vol 8, no 4, pp 537-49.
91. Brandsen, T. and Pestoff, V. (2006) 'Co production, the third sector and the delivery of public services: an introduction', Public Management Review, vol 8, no 4, pp 493-501.
92. Branfield, F. and Beresford, P. (2011) Beyond the usual suspects: Developing diversity in involvement, London: Shaping Our Lives
93. Branfield, F. and Beresford, P. with Andrews, E. J., Chambers, P., Staddon, P., Wise, G. and Williams-Findlay, B. (2006) Making user involvement work: Supporting service user networking and knowledge, York: Joseph Rowntree Foundation.
94. Braye, S. (2000) 'Participation and involvement in social care', in Kemshall, H. and Littlechild, R. (eds) User involvement and participation in social care: Research informing practice, London: Jessica Kingsley Publishers.
95. Brett, J., Staniszewska, S., Monkford, C., Seers, K., Heron-Marx, S. and Bayliss, H. (2009) The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research, London: UK Clinical Research Collaboration.
96. British Society of Rehabilitation Medicine (2003) Vocational Rehabilitation: The Way Forward. London, UK: BSRM
97. The Sainsbury Centre for Mental Health (2004) Benefits and work for people with mental health problems: A briefing for mental health workers. Briefing 27. London, UK: The Sainsbury Centre for Mental Health
98. Brown, G., Brady, G., Wilson, C. and Letherby, G. (2009) 'Teenage pregnancy and young parenthood: questioning the inevitability of risk, lone motherhood and social exclusion', in Johns, N. and Barton, A. (eds) Evaluating the political achievement of New Labour since 1997, Lampeter: Edwin Mellen.
99. Brown, I. (1994) 'Community and participation for general practice: perceptions of general practitioners and community nurses', Social Science and Medicine, vol 39, no 3, pp 335-44.
100. Brown, V., Cotterell, P., Sitzia, J., Richardson, A., Kelley, K. and Willers, R. (2006) Evaluation of consumer research panels in cancer research networks, London: Macmillan Cancer Support.
101. Brownlie, J. (2009) 'Researching, not playing, in the public sphere', Sociology, vol 43, no 4, pp 699-716.
102. Bryant, L. and Beckett, J. (2006) The practicality and acceptability of an advocacy service in the emergency department for people attending following self-harm, Leeds: University of Leeds.
103. Burns, T., Catty, J., White, S., Clement, S., Ellis, G., Jones, I.R., Lissouba, P., McLaren, S., Rose, D. and Wykes, T. (2009) 'Continuity of care in mental health: understanding and measuring a complex phenomenon', Psychological Medicine, vol 39, pp 313-23.
104. Cahill, C. (2007) 'Doing research with young people: participatory research and the rituals of collective work', Children's Geographies, vol 5, no 3, pp 297-312.
105. Campbell, J. and Oliver, M. (1996) Disability politics: Understanding our past, changing our future, London: Routledge.
106. Campbell, N. D. (2000) Using women: Gender, drug policy, and social injustice, New York, NY: Routledge.
107. Campbell, P. (1996) 'The history of the user movement in the United Kingdom', in Heller, T., Reynolds, J., Gomm, R., Muston, R. and Pattison, S. (eds) Mental health matters: A reader, Basingstoke: Macmillan in association with The Open University, pp 218-25.
108. Carey, G., Braunack-Mayer, A. and Barraket, J. (2009) 'Spaces of care in the third sector: understanding the effects of professionalization', Health (London), vol 13, no 6, pp 629-46.
109. Carlsson, C. and Nilbert, M. (2007) 'Living with hereditary non-polyposis colorectal cancer: experiences from and impact of genetic testing', Journal of Genetic Counselling, vol 16, pp 811-20.
110. Carnegie UK Trust (2010) http://democracy.carnegieuktrust.org.uk/democracy/ power_tools
111. Carney, L., Jones, L., Braddon, F., Pullybank, A. M. and Dixon, A. R. (2006) 'A colorectal cancer patient focus group develops an information package', Annals of the Royal College of Surgeons of England, vol 88, pp 447-9.
112. Caron-Flinterman, J. F., Broerse, J. E. W. and Bunders, J. F. G. (2005) 'The experiential knowledge of patients: a new resource for biomedical research?', Social Science & Medicine, vol 60, pp 2575-84.
113. Caron-Flinterman, J. F., Broerse, J. E. W., Teerling, J., Van Alst, M. L. Y., Klaasen, S., Swart, L. E. and Bunders, J. F. G. (2006) 'Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands', Science and Public Policy, vol 33, no 4, pp 291-304.
114. Carr, S. (2007) 'Participation, power, conflict and change: theorising dynamics of service user participation in the social care system of England and Wales', Critical Social Policy, vol 27, no 2, pp 266-76.
115. Carr, S. (2004) Has service user participation made a difference to social care services?, London: Social Care Institute for Excellence.
116. Cater, S. and Coleman, L. (2006) 'Planned' teenage pregnancy: Perspectives of young parents from disadvantaged backgrounds, Bristol and York: The Policy Press and Joseph Rowntree Foundation.
117. Cavet, J. and Sloper, P. (2004) 'The participation of children and young people in decisions about UK service development', Child Care, Health and Development, vol 30, no 6, pp 613-21.
118. Chamberlin, J. and Unzicker, R. (1990) Psychiatric survivors, ex patients, and users: An observation of organizations in Holland and England, by Judi Chamberlin and Rae Unzicker.
119. Chambers, R. (1997) Whose reality counts? Putting the first last, London: Intermediate Technology.
120. Chang, D., Spicer, N., Irving, A., Sparham, I. and Neeve, L. (2001) Modernising service delivery: The Better Government for Older People prototypes, DWP Research Report no 136, London: DWP.
121. Charles, C., Gafni, A. and Whelan, T. (1997) 'Shared decision-making in the medical encounter: what does it mean? (Or it takes at least two to tango)', Social Science and Medicine, vol 44, no 5, pp 681-92.
122. Charles, N. (2004) 'Feminism, social movements and the political order', in Todd, M. J. and Taylor, G. (eds) Democracy and participation: Popular protest and new social movements, London: Merlin Press, pp 248-72.
123. Charlton, J. I. (1998) Nothing about us without us: Disability, oppression and empowerment, Berkeley, CA: University of California Press.
124. Church, K. (1996) 'Beyond "bad manners": the power relations of "consumer participation" in Ontario's community mental health system', Journal of Community Mental Health, vol 37, pp 22-5.
125. Clark, C. C., Scott, E. A., Boydell, K. M. and Goering, P. (1999) 'Effects of client interviewers on client reported satisfaction with mental health services', Psychiatric Services, vol 50, no 7, pp 961-3.
126. Clark, M., Glasby, J. and Lester, H. (2004) 'Cases for change: user involvement in mental health services and research', Research Policy and Planning, vol 22, no 2, pp 31-8.
127. Collyar, D. (2005) 'How have patient advocates in the US benefited cancer research?', Nature Reviews Cancer, vol 5, pp 73-7.
128. Cooper, C., Moore, J., Telford, R., Boote, J. and Repper, J. (2005) Evaluation of the NTCRN Consumer Research Panel, Sheffield: School of Health and Related Research, University of Sheffield.
129. Cotterell, P. (2006) 'Living with life limiting conditions: a participatory study of people's experiences and needs', PhD thesis, School of Health Sciences and Social Care, Brunel University.
130. Cotterell, P. (2008) 'Exploring the value of service user involvement in data analysis: "our interpretation is about what lies below the surface"', Educational Action Research, vol 16, no 1, pp 5-17.
131. Cotterell, P., Clarke, P., Cowdrey, D., Kapp, J., Paine, M. and Wynn, R. (2007) 'Becoming involved in research: a service user research advisory group', in Jarrett, L. (ed) Creative engagement in palliative care: New perspectives on user involvement, Abingdon: Radcliffe Publishing.
132. Cotterell, P., Harlow, G., Morris, C., Beresford, P., Hanley, B., Sargeant, A., Sitzia, J. and Staley, K. (2008) Identifying the impact of service user involvement on the lives of people affected by cancer: Final report, London: Macmillan Cancer Support.
133. Cotterell, P., Harlow, G., Morris, C., Beresford, P., Hanley, B., Sargeant, A., Sitzia, J. and Staley, K. (2011) 'Service user involvement in cancer care: the impact on service users', Health Expectations, 14, (2). 159-169 doi: 10.1111/j.1369- 7625.2010.00627.x
134. Cotterell, P., MacFarlane, A. and Findlay, H. (2009) 'Patient and carer narratives and stories', in Oliviere, D. and Gunaratnan, Y. (eds) Narrative and stories in healthcare: Illness, dying and bereavement, Oxford: Oxford University Press.
135. Cotterell, P., Sitzia, J. and Richardson, A. (2004) 'Evaluating partnerships with cancer patients', Practice Nursing, vol 15, no 9, pp 430-5.
136. Cotterill, P. and Letherby, G. (1993) 'Weaving stories: personal auto/biographies in feminist research', Sociology, vol 27, no 1, pp 67-80.
137. Council of Europe (2003) Revised European Charter on the Participation of Young People in Local and Regional Life, Strasbourg: Council of Europe.
138. CQC (Care Quality Commission) (2009) Voices into action: The Care Quality Commission's statement of involvement, London: CQC.
139. Craig, P., Dieppe, P., Macintyre, S., Mitchie, S., Nazareth, I. and Petticrew, M. (2008) 'Developing and evaluating complex interventions: the new Medical Research Council guidance', British Medical Journal, vol 337, pp 979-83.
140. Crawford, M. J., Aldridge, T., Bhui, K., Rutter, D., Manley, C., Weaver, T., Tyrer, P. and Fulop, N. (2003) 'User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers', Acta Psychiatrica Scandinavica, vol 107, pp 410-14.
141. Crossley, M. L. (2003) '"Would you consider yourself a healthy person?": using focus groups to explore health as a moral phenomenon', Journal of Health Psychology, vol 8, no 5, pp 501-14.
142. Crossley, N. (1999) 'Fish, field, habitus and madness: the first wave mental health users' movement', British Journal of Sociology, vol 50, no 4, pp 647-70.
143. Crossley, N. (2006) Contesting psychiatry: Social movements in mental health, London: Routledge.
144. CSIP and DH (Care Services Improvement Partnership and Department of Health) (2007) Mental well-being impact assessment: A toolkit: 'A living and working document', London: CSIP and DH.
145. CYPU (Children and Young People's Unit) (2001) Learning to listen: Core principles for the involvement of children and young people, Annesley: Department for Education and Skills.
146. d'Agincourt-Canning, L. (2005) 'The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer', Journal of Genetic Counselling, vol 14, no 1, pp 55-69.
147. Davey, C. (2010) Children's participation in 2010: A summary report, London: National Children's Bureau.
148. David, M. (2002) 'Problems of participation: the limits of action research', National Journal of Social Research and Methodology, vol 5, no 1, pp 11-17.
149. Davis, K. (1993) 'On the movement', in Swain, J., Finkelstein, V., French, S. and Oliver, M. (eds) Disabling barriers: Enabling environments, London: Sage Publications in association with The Open University.
150. Davis Smith, J., Rochester, C. and Hedley, R. (1995) 'Introduction', in Davis Smith, J., Rochester, C. and Hedley, R. (eds) An introduction to the voluntary sector, London: Routledge, pp 1-8.
151. DCSF (Department for Children, Schools and Families) (2010) Teenage pregnancy strategy: Beyond 2010, London: DCSF.
152. DCSF (2007) The children's plan: Building brighter futures, London: DCSF.
153. De Beauvoir, S. (1997, 1953 translation, 1945) The second sex, Reading: Vintage Classics.
154. Dearden-Phillips, C. and Fountain, R. (2005) 'Real power: an examination of the involvement of people with learning difficulties in strategic services development in Cambridgeshire', British Journal of Learning Disabilities, vol 33, pp 200-4.
155. Dewer, B. (2005) 'Beyond tokenistic involvement of older people in research-a framework for future development and understanding', Journal of Clinical Nursing, vol 14, suppl 1, pp 48-53.
156. DH (Department of Health) (1995) A policy framework for commissioning cancer services (the Calman-Hine report), London: DH.
157. DH (2000) The NHS cancer plan, London: DH.
158. DH (2001a) The national service framework for older people, London: DH.
159. DH (2001b) The expert patient programme: A new approach to chronic disease management for the 21st century, London: DH.
160. DH (2001c) The report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995, London: DH.
161. DH (2001e) Involving Patients and the Public in Health Care: a discussion document. London: DH
162. DH (2005) Research governance framework for health and social care (2nd edition), London: DH.
163. DH (2006) Best research for best health: A new national health research strategy, London: DH.
164. DH (2007a) Cancer reform strategy, London: DH.
165. DH (2007b) Putting people first: A shared vision and commitment to the transformation of adult social care, London: DH.
166. DH (2009a) Shaping the future of care together, London: DH.
167. DH (2009b) New horizons: A shared vision for mental health, London: DH, www. dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/ digitalasset/dh_109708.pdf
168. DH (2010a) Equity and excellence: Liberating the NHS, London: DH.
169. DH (2010b) Government response to the Health Select Committee report on social care (third report of session 2009-10), London: DH
170. DH (2010c) 'Health Secretary outlines vision for locally led NHS service changes', press release, 21 May, www.dh.gov.uk/en/MediaCentre/Pressreleases/DH_116290
171. DiLapi, E. M. (1989) 'Lesbian mothers and the motherhood hierarchy', Journal of Homosexuality, vol 18, no 1-2, pp 101-21.
172. Doyal, L. (1995) What makes women sick: Gender and the political economy of health, Basingstoke: Macmillan.
173. Du Boulay, S. (1984) Cicely Saunders: The founder of the modern hospice movement, London: Hodder & Stoughton.
174. Duffy, J. (2008) Looking out from the middle: User involvement in health and social care in Northern Ireland, Stakeholder Participation Report 18, London: Social Care Institute for Excellence.
175. Duncan, S., Edwards, R. and Alexander, C. (eds) (2010) Teenage parenthood: What's the problem?, London: Tufnell Press.
176. Durkin, L. (1972) 'Patient power-review of a protest', Social Work Today, vol 3, no 15, p 14.
177. DWP (Department for Work and Pensions) (2005) Opportunity age: Meeting the challenge of ageing in the 21st century, London: DWP.
178. DWP (2009) Empowering engagement: A stronger voice for older people, London: DWP.
179. Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J. and Lamont, T. (1998) 'Lay perspectives: advantages for health research', British Medical Journal, vol 316, no 7129, pp 463-6.
180. Etchegary, H., Potter, B., Howley, H., Cappelli, M., Coyle, D., Graham, I., Walker, M. and Wilson, B. (2008) 'The influence of experiential knowledge on prenatal screening and testing decisions', Genetic Testing, vol 12, no 1, pp 115-24.
181. Ettorre, E. (1997) Women and alcohol: A private pleasure or a public problem?, London: Women's Press.
182. Ettorre, E. (2007) Revisioning women and drug use: Gender, power and the body, Basingstoke: Palgrave Macmillan.
183. Evans, C. (1995) 'Disability, discrimination and local authority social services 2: users' perspectives', in Zarb G. (ed) Removing disabling barriers, London: Policy Studies Institute, pp 116-23.
184. Evans, C. and Fisher, M. (1999) 'Collaborative evaluation with service users: moving towards user-controlled research', in Shaw, I. and Lishman, J. (eds) Evaluation & Social Work Practice, London: Sage Publications, pp 101-17.
185. Evans, C. and Hughes, M. (1993) Tall oaks from little acorns, Trowbridge: Wiltshire Social Services/Wiltshire Users' Network.
186. Evans, C. and Jones, R. (2005) 'Really making it happen in Wiltshire: the experience of service users evaluating social care', in Lowes, L. and Hulatt, I. (eds) User involvement in health and social care research, London: Routledge, pp 132-9.
187. Evans, C., Carmichael, A. and members of the Direct Payments Best Value Review Group of Wiltshire and Swindon Users Network (2002) Users' best value: A guide to good practice in user involvement in best value reviews, York: Joseph Rowntree Foundation.
188. Farr, M. and Cressey, P. (2010) 'Public service employee and user collaboration: creating change from the ground up', Paper presented at the British Sociological Association Annual Conference, Glasgow Caledonian University, 7-9 April.
189. Faulkner, A. (2004) Capturing the experiences of those involved in the TRUE project: A story of colliding worlds, Eastleigh: INVOLVE.
190. Faulkner, A. (2006) Beyond our expectations: A report of the experiences of involving service users in forensic mental health research, London: Department of Health.
191. Faulkner, A. (2009) Service user and carer involvement in the National Mental Health Development Unit: Scoping report November 2009, London: NSUN.
192. Faulkner, A. and Layzell, S. (1999) Strategies for living: A report on user-led research, London: Mental Health Foundation.
193. Ferguson, I. (2008) Reclaiming social work: Challenging neo-liberalism and promoting social justice, London: Sage Publications.
194. Finkelstein, V. (1980) Attitudes and disabled people: Issues for discussion, New York, NY: World Rehabilitation Fund.
195. Finkelstein, V. (1993) 'Disability: a social challenge or an administrative responsibility', in Swain, J., Finkelstein, V., French, S. and Oliver, M. (eds) Disabling barriers: Enabling environments, London: Sage Publications.
196. Fischer, F. (2000) Citizens, experts and the environment: The politics of local knowledge, Durham and London: Duke University Press.
197. Fish, J. (2006) Heterosexism in health and social care, Basingstoke: Palgrave Macmillan.
198. Fisher, M. (2002) 'The role of service users in problem formulation and technical aspects of social research', Social Work Education, vol 21, no 3, pp 305-12.
199. Folk.us (2009) Annual report 2008-2009, Exeter: Folk.us, www.folkus.org.uk
200. Formby, E., Hirst, J. and Owen, J. (2010) 'Pathways to adulthood: reflections from three generations of young mothers and fathers', in Duncan, S., Edwards, R. and Alexander, C. (eds) Teenage parenthood: What's the problem?, London: Tufnell Press.
201. Fraser, S., Lewis, V., Ding, S., Kellett, M. and Robinson, C. (eds) (2004) Doing research with children and young people, London: Sage Publications.
202. Freire, P. (1972) Pedagogy of the oppressed, New York, NY: Herder and Herder.
203. Fudge, N., Wolfe, C. D. A. and McKevitt, C. (2008) 'Assessing the promise of user involvement in health service development: ethnographic study', British Medical Journal, vol 336, pp 313-17.
204. Furedi, F. (2004) 'Foreword: reflections on some uncomfortable realities', in Todd, M. J. and Taylor, G. (eds) Democracy and participation: Popular protest and new social movements, London: Merlin Press, pp viii-xviii.
205. Fyfe, N. R. (2005) 'Making space for "neo-communitarianism"? The third sector, state and civil society in the UK', Antipode, vol 37, no 3, pp 536-57.
206. Fyfe, N. R. and Milligan, C. (2003) 'Out of the shadows: exploring contemporary geographies of voluntarism', Progress in Human Geography, vol 27, no 4, pp 397-413.
207. Gallacher, L. and Gallacher, M. (2005) Participatory methods in research with children: A critique, Edinburgh: School of Geosciences, University of Edinburgh, www.geos. ed.ac.uk/homes/s0453363/brunelpaperpdf
208. Gaskin, K. and Vincent, J. (1996) Co-operating for health, Loughborough: Centre for Research in Social Policy, Loughborough University:
209. Gibbons, M., Limoges, G. Nowotny, H., Schwartzman, S., Scott, P. and Trow, M. (1998) The new production of knowledge, London: Sage Publications.
210. Gillard, S. and Stacey, E. (2005) 'All talk: experiencing user led research', A life in the day, vol 9, no 2, pp 27-30.
211. Gillard, S., Edwards, C., White, S., White, R., Adams, K. and Davies, L. (2010a) Identifying the barriers and facilitators of supporting self care in Mental Health NHS trusts: Report for the National Institute for Health Research Service Delivery and Organisation Programme, London: HMSO, www.sdo.nihr.ac.uk/files/project/165-final-report. pdf
212. Gillard, S., Turner, K., Lovell, K., Norton, K., Clarke, T., Addicott, R., McGivern, G. and Ferlie, E. (2010b) '"Staying native": coproduction in mental health services research', International Journal of Public Sector Management, vol 23, no 6, pp 567-77.
213. Gillard, S. Borschmann, R., Turner, K., Goodrich-Purnell, N., Lovell, K. and Chambers, M. (2010c) 'What difference does it make? Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients', Health Expectations, doi: 10.1111/j.1369- 7625.2010.00596.x.
214. Glendinning, C., Challis, D., Fernandez, J.-L. Jacobs, S. Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten, A., Stevens, M. and Wilberforce, M. (2008) Evaluation of the Individual Budgets Pilots: Final report, York: Social Policy Research Unit, University of York.
215. Goodare, H. and Lockwood, S. (1999) 'Involving patients in clinical research: improves the quality of research', British Medical Journal, vol 319, pp 724-5.
216. Goss, S. and Miller, C. (1995) From margin to mainstream: Developing user and carer centred community care, York: Joseph Rowntree Foundation.
217. Gott, M., Stevens, T., Small, N. and Ahmedzai, S. H (2000) User involvement in cancer care: Exclusion and empowerment, Bristol: The Policy Press.
218. Graham, H. and McDermott, G. (2005) 'Qualitative research and the evidence base of policy: insights from studies of teenage mothers in the UK', Journal of Social Policy, vol 35, no 1, pp 21-37.
219. Greenfield, S. F., Brooks, A. J., Gordon, S. M., Green, C. A., Kropp, F., McHugh, K. R., Lincoln, M., Hien, D. and Miele, G. M. (2007) 'Substance abuse treatment entry, retention, and outcome in women: a review of the literature', Drug and Alcohol Dependence, vol 86, no 1, pp 1-21.
220. Greig, A., Taylor, J. and MacKay, T. (2007) Doing research with children, London: Sage Publications.
221. Griffiths, R. (1988) Community care: Agenda for action, London: HMSO.
222. GSCC (General Social Care Council) (2006) Social work education in England: Listening, learning and shaping, London: GSCC
223. Guarino, P., Elbourne, D., Carpenter, J. and Peduzzi, P. (2006) 'Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants' understanding', Clinical Trials, vol 3, pp 19-30.
224. Habermas, J. (1972) Knowledge and human interests, translated by J. J. Shapiro, Boston, MA: Beacon Press.
225. Hall, J. M. (1994) 'The experiences of lesbians in Alcoholics Anonymous', Western Journal of Nursing Research, vol 16, no 5, pp 556-76.
226. Hall, M., Bodenhamer, B., Bolstad, R. and Hamblett, M. (2001) The structure of personality, Carmarthen: Crown House Publishing.
227. Hanley, B. (1999) Research and development in the NHS: How can you make a difference?, Leeds: NHS Executive.
228. Hanley, B., Bradburn, J., Barnes, M., Evans, C., Goodare, H., Kelson, M., Kent, A., Oliver, S., Thomas, S. and Wallcraft, J. (2003) Involving the public in NHS, public health and social care research: Briefing notes for researchers, (second edition) Eastleigh: INVOLVE.
229. Hanley, B., Bradburn, J., Gorin, S., Barnes, M., Evans, C., Goodare, H., Kelson, M., Kent, A., Oliver, S. and Wallcraft, J. (2000) Involving consumers in research and development in the NHS: Briefing notes for researchers, Winchester: Consumers in NHS Research Support Unit, Help for Health Trust (second edition published 2003).
230. Harding, S. (1993) 'Rethinking standpoint epistemology: what is "strong objectivity"?', in Alcoff, C. and Potter, E. (eds) Feminist epistemologies, London: Routledge.
231. Harnett, R., Thom, B., Herring, R. and Kelly, M. (2000) 'Alcohol in transition: towards a model of young men's drinking styles', Journal of Youth Studies, vol 3, no 1, pp 61-77.
232. Harrison, S. and Mort, M. (1998) 'Which champions, which people? Public and user involvement in health care as a technology of legitimation', Social Policy and Administration, vol 32, no 1, pp 60-70.
233. Harrison, S., Barnes, M. and Mort, M. (1997) 'Praise and damnation: mental health user groups and the construction of organisational legitimacy', Public Policy and Administration, vol 12, no 2, pp 4-16.
234. Hart, R. A. (2008) 'Stepping back from "the ladder": reflections on a model of participatory work with children', in Reid, A., Jensen, B. B., Nikel, J. and Simovska, V. (eds) Participation and learning: Perspectives on education and the environment, health and sustainability, Houton, the Netherlands: Springer.
235. Hayden, C. and Boaz, A. (2000) Making a difference. Better government for older people evaluation report, Warwick: Local Government Centre, University of Warwick.
236. Heater, D. (1999) What is citizenship?, Malden, MA: Polity Press
237. Heginbotham, C. (ed) (1992) Listening to local voices, Birmingham: NAHAT.
238. Henwood, K., Griffin, C. and Phoenix, A. (eds) (1998) Standpoints and differences: Essays in the practice of feminist psychology, London: Routledge.
239. Hernandez, L., Robson, P. and Sampson, A. (2008) 'Towards integrated participation: involving seldom heard users of social care services', British Journal of Social Work, Advance Access published online 9 September.
240. Herron-Marx S, Putz, R, Staniszewska S (2009) The current state of patient and public involvement in NHS Trusts across England. National Centre for Involvement. Department of Health. Project report
241. Heron, J. and Reason, P. (1997) 'A participatory inquiry paradigm', Qualitative Inquiry, vol 3, no 3, pp 274-94.
242. Hewlett, S., de Wit, M. D., Richards, P., Quest, E., Hughes, R., Heiberg, T. and Kirwan, J. (2006) 'Patients and professionals as research partners: challenges, practicalities, and benefits', Arthritis and Rheumatism, vol 55, pp 676-80.
243. Heywood, A. (2007) Political ideologies: An introduction: Fourth edition, Basingstoke: Palgrave Macmillan.
244. Higher Education Funding Council for England (2011) Decisions on assessing research impact, Bristol: Higher Education Funding Council for England.
245. Hill, C., Martin, J. and Roberts, A. (1975) A directory of the side effects of psychiatric drugs, London: Hackney Mental Patients Union.
246. Hill, M. (1997) 'Participatory research with children', Child and Family Social Work, vol 2, no 3, pp 71-183.
247. Hill Collins, P. (1990) Black feminist thought: Knowledge, consciousness, and the politics of empowerment, London: Routledge.
248. Hindley, P. (1994) 'Psychiatric disorder in Deaf and hearing impaired children and young people: a prevalence study', Journal of Child Psychology and Psychiatry, vol 35, pp 917-34.
249. HM Government (2003) Every child matters, London: HMSO.
250. Hodge, S. (2005) 'Participation, discourse and power: a case study in service user involvement', Critical Social Policy, vol 25, no 2, pp 164-79.
251. Hostick, T. and McClelland, F. (2002) '"Partnership": a co-operative inquiry between community mental health nurses and their clients: 2: the nurse-client relationship', Journal of Psychiatric and Mental Health Nursing, vol 9, pp 111-17.
252. Hubbard, G., Kidd, L. and Donaghy, E. (2008) 'Involving people affected by cancer in research: a review of the literature', European Journal of Cancer Care, vol 17, pp 233-44.
253. Humphries, B., Mertens, D. M. and Truman, C. (2000) 'Arguments for an "emancipator" research paradigm', in Truman, C., Mertens, D. M. and Humphries, B. (eds) Research and inequality, London: UCL Press.
254. Hunt, J. (2001) The union of the physically impaired against segregation, internet publication, www.labournet.net/other/0107/upias1.html
255. Hunt, P. (1981) 'Settling accounts with the parasite people: a critique of "A life apart" by E.J. Miller and G.V. Gwynne', Disability Challenge, 1 May, pp 37-50.
256. Hunter, S. and Ritchie, P. (eds) (2007) Co-production and personalisation in social care, London: Jessica Kingsley Publishers.
257. Hurst, R. (2009) 'The right to be heard and co-production', Paper presented at the Critical Perspectives on User Involvement Conference, University of Brighton, 24 April.
258. Iedema, R., Merrick, E., Piper, D. and Walsh, J. (2008) Emergency department co-design stage 1 evaluation: Report to Health Services Performance Improvement Branch NSW Health, Sydney: Centre for Health Communication, University of Technology, Sydney.
259. Insight (1996) Resourcing and performance management in community health councils, London: Insight Management Consulting.
260. Irwin, E., Mitchell, L., Durkin, L. and Douieb, B. (1972) 'The need for a mental patients' union-some proposals', http://studymore.org.uk/mpu. htm#FishPamphlet
261. Jenkins, K. (2005) 'No way out? Incorporating and restructuring the voluntary sector within spaces of neoliberalism', Antipode, vol 37, no 3, pp 613-18.
262. Johnson, C. and Osborne, S. P. (2003) 'Local strategic partnerships, neighbourhood renewal, and the limits to co-governance', Public Money & Management, vol 23, no 3, pp 147-54.
263. Jones, C., Ferguson, I., Lavalette, M. and Penketh, L. (2004) Social work and social justice: A manifesto for a new engaged practice, Social Work Action Network, www.socialworkfuture.org/index.php/swan-organisation/manifesto
264. Jones, R. (2000) Authorities to introduce more direct payments for disabled people, London: ADSS Inform.
265. Jones, R. (2007) 'A journey through the years: ageing and social care', Ageing Horizons, vol 6, pp 42-54.
266. Jones, R. (2009) 'Social work and management', in Barnard, A., Horner, N. and Wild, J. (eds) The value base of social work and social care, Maidenhead: Open University Press, pp 145-61.
267. Jones, R. and Evans, C. (2006) 'Engagement and empowerment, research and relevance: comments on user controlled research', Research Policy and Planning, vol 22, no 2, pp 5-13.
268. Kai, J. and Hedges, C. (1999) 'Minority ethnic community participation in needs assessment and service development in primary care: perceptions of Pakistani and Bangladeshi people about psychological distress', Health Expectations, vol 2, pp 7-20.
269. Kelleher, D. (2001) 'New social movements in the health domain', in Scambler, G. (ed) Habermas, critical theory and health, London: Routledge.
270. Kellett, M. (2005) How to develop children as researchers, London: Paul Chapman.
271. Kelly, J. (2007) 'Reforming public services in the UK: bringing in the third sector', Public Administration, vol 85, pp 1003-22.
272. Kelson, M. (1995) Consumer involvement initiatives in clinical audit and outcomes, London: College of Health.
273. Kelson, M. (1997) User involvement: A guide to developing effective user involvement strategies in the NHS, London: College of Health.
274. Kemmis, S. (2006) 'Participatory action research and the public sphere', Educational Action Research, vol 14, no 4, pp 459-76.
275. Kemshall, H. and Littlechild, R. (eds) (2000) User involvement and participation in social care: Research informing practice, London: Jessica Kingsley Publishers.
276. Kendall, J. and Knapp, M. (1995) 'A loose and baggy monster: boundaries, definitions and types', in Davis Smith, J., Rochester, C. and Hedley, R. (eds) An introduction to the voluntary sector, London: Routledge, pp 66-95.
277. Kidger, J. (2005) 'Stories of redemption? Teenage mothers as the new sex educators', Sexualities, vol 8, no 4, pp 481-96.
278. Kirby, P. (2003) A guide to actively involving young people in research, for researchers, research commissioners and managers, Eastleigh: INVOLVE.
279. Kirby, P., Lanyon, C., Cronin, K. and Sinclair, R. (2003) Building a culture of participation: Involving children and young people in policy, service planning, delivery and evaluation, London: DfES.
280. Koops, L. and Lindley, R. I. (2002) 'Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial', British Medical Journal, vol 325, no 7361, pp 415-7.
281. Ladd, P. (2003) Understanding Deaf culture: In search of deafhood, Clevedon: Multilingual Matters.
282. Langston, A. L., McCallum, M., Campbell, M. K., Robertson, C. and Ralston, S. H. (2005) 'An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial', Clinical Trials, vol 2, no 1, pp 80-7.
283. Larana, E., Johnston, J. and Gusfield, J. R. (1994) New social movements: From ideology to identity, Philadelphia, PA: Temple University Press.
284. Lathlean, J., Burgess, A., Coldham, T., Gibson, C., Herbert, L., Levett-Jones, T., Simons, L. and Tee, S. (2006) 'Experiences of service user and carer participation in health care education', Nurse Education Today, vol 26, pp 732-7.
285. Leach, M., Scoones, I. and Wynne, B. (eds) (2005) Science and citizens: Globalisation and the challenge of engagement, London: Zed Books.
286. Leadbeater, C., Bartlett, J. and Gallagher, N. (2008) Making it personal, London: Demos.
287. Letherby, G. (2003) Feminist research in theory and practice, Buckingham: Open University Press.
288. Letherby, G. and Bywaters, P. (eds) (2007) Extending social research: Application, implementation and publication, Maidenhead: Open University Press.
289. Letherby, G., Brown, G., Di Marco, H. and Wilson, C. (2002) Pregnancy and postnatal experience of young women who become pregnant under the age of 20 years, Coventry: Centre for Social Justice, Coventry University.
290. Lewin, K. (1951) Field theory in social science: selected theoretical papers by Kurt Lewin, Cartwright, D. (ed) New York: Harper Row LGIU (Local Government Information Unit) (2008) Out of our control? The case for better health accountability, London: LGIU.
291. Lindenmeyer, A., Hearnshaw, H., Sturt, J., Ormerod, R. and Aitchison, G. (2007) 'Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study', Health Expectations, vol 10, no 3, pp 268-77.
292. Lindow, V. and Morris, J. (1995) Service user involvement: Synthesis of findings and experience in the field of community care, York: Joseph Rowntree Foundation.
293. Lister, R. (2003) Citizenship: Feminist perspectives, New York, NY: New York University Press.
294. Lovenduski, J. and Randall, V. (1993) Contemporary feminist politics, Oxford: Oxford University Press.
295. Lowes, L. and Gill, P. (2006) 'Methodological issues in nursing research: participants' experiences of being interviewed about an emotive topic', Journal of Advanced Nursing, vol 55, no 5, pp 587-95.
296. Lowndes, V. and Sullivan, H. (2004) 'Like a horse and carriage or a fish on a bicycle: how well do local partnerships and public participation go together?', Local Government Studies, vol 30, no 1, pp 51-73.
297. Lupton, C., Peckham, S. and Taylor, P. (1998) Managing public involvement in healthcare purchasing, Buckingham: Open University Press.
298. Lupton, D. (2003 [1994]) Medicine as culture (2nd edition), London: Sage Publications.
299. Macaulay, A. C., Commanda, L. E., Freeman, W. L., Gibson, N., McCbe, M. L,. Robbins, C. M. and Twohig, P. L. for the North American Primary Care Research Group (1999) 'Participatory research maximises community and lay involvement', British Medical Journal, vol 319, pp 774-8.
300. McCormick, S., Brody, J., Brown, P. and Polk, R. (2004) 'Public involvement in breast cancer research: an analysis and model for future research', International Journal of Health Services, vol 34, no 4, pp 625-46.
301. McGrath, M. (1989) 'Consumer participation in service planning--the AWS (All Wales Strategy) experience', Journal of Social Policy, vol 18, no 1, pp 67-89.
302. McLaughlin, H. (2006) 'Involving young service users as co researchers: possibilities, benefits and costs', British Journal of Social Work, vol 36, pp 1395-410.
303. McLaughlin, H. (2009a) 'Keeping service user involvement in research honest', British Journal of Social Work, doi: 10.1093/bjsw/bcp064, pp 1-18.
304. McLaughlin, H. (2009b) Service user research in health and social care, Los Angeles, LA: Sage Publications.
305. Macmillan Cancer Support (2006) Macmillan Listening Study: The research priorities of people affected by cancer: Full report, London: Macmillan Cancer Support.
306. MacVarish, J. (2010) 'The effect of "risk-thinking" on the contemporary construction of teenage motherhood', Health, Risk and Society, vol 12, no 4, pp 313-22.
307. Mansbridge, J. and Morris, A. (eds) (2001) Oppositional Consciousness: The subjective roots of social protest, Chicago, IL: University of Chicago Press.
308. Marsden, J. and Bradburn, J. (2004) 'Patient and clinician collaboration in the design of a national randomized breast cancer trial', Health Expectations, vol 7, no 1, pp 6-17.
309. Marsh, P. and Fisher, M. (1992) Good intentions: Developing partnership in social services, York: Joseph Rowntree Foundation.
310. Martin, G. P. (2008a) 'Ordinary people only: knowledge, representativeness, and the publics of public participation in healthcare', Sociology of Health and Illness, vol 30, no 1, pp 35-54, doi: 10.1111/j.1467-9566.2007.01027.x
311. Martin, G. P. (2008b) 'Representativeness, legitimacy and power in public involvement in health-care management', Social Science & Medicine, vol 67, no 11, pp 1757-65.
312. Martin, G. P. (2009) 'Whose health, whose care, whose say? Some comments on public involvement in new NHS commissioning arrangements', Critical Public Health, vol 19, no 1, pp 123-32.
313. Martin, G. P. (2011) 'The third sector, user involvement and public-service reform: a case study in the co governance of health-service provision', Public Administration, doi: 10.1111/j.1467-9299.2011.01910.x.
314. Mayer, J. and Timm, N. (1970) The client speaks, London: Routledge.
315. Maynard, M. (1994) 'Methods, practice and epistemology: the debate about feminism and research', in Maynard, M. and Purvis, J. (eds) Researching women's lives from a feminist perspective, London: Taylor & Francis.
316. Means, R., Richards, S. and Smith, R. (2003) Community care policy and practice, Basingstoke: Palgrave Macmillan.
317. Meyrick, J. (2002) An evaluation resource to support the Teenage Pregnancy Strategy, London: Health Development Agency.
318. MHF (Mental Health Foundation) (2000) Strategies for living, London: MHF.
319. Mickel, A. (2008) Changing practitioners attitudes towards young mothers, Community Care 7th November
320. Milewa, T. (1997) 'Community participation and health care priorities: reflections on policy, theatre and reality in Britain', Health Promotion International, vol 12, no 2, pp 161-8.
321. Milewa, T., Harrison, S., Ahmad, W. and Tovey, P. (2002a) 'Citizen's participation in primary healthcare planning: innovative citizenship practice in empirical perspective', Critical Public Health, vol 12, no 1, pp 39-53.
322. Milewa, T., Dowswell, G. and Harrison, S. (2002b) 'Partnerships, power and the 'new' politics of community participation in British health care', Social Policy and Administration, vol 36, no 7, pp 796-809.
323. Miller, E. J. and Gwynne, G. V. (1972) A life apart, London: Tavistock Publications.
324. Mockford, C., Staniszewska, S., Griffiths, F. and Herron-Marx, S. (2009) A systematic review of the impact of patient and public involvement on NHS healthcare services, Warwick: National Centre for Involvement.
325. Moriarty, J., Rapaport, P., Beresford, P., Branfield, F., Forrest, V., Manthorpe, J., Martineau, S., Cornes, M., Butt, J., Illiffe, S., Taylor, B. and Keady, J. (2007) Practice guide: The participation of adult service users, including older people, in developing social care, Stakeholder Participation Guide 17, London: Social Care Institute for Excellence.
326. Morison, J. (2000) 'The government-voluntary sector compacts: governance, governmentality, and civil society', Journal of Law and Society, vol 27, no 1, pp 98- 132.
327. Morris, J. (1992) 'Personal and political: a feminist perspective on researching physical disability', Disability, Handicap & Society, vol 7, no 2, pp 157-66.
328. Morris, J. (1993) Independent lives: Community care and disabled people, Basingstoke: Macmillan.
329. Morris, J. (1994) The shape of things to come? User-led social services, London: National Institute for Social Work.
330. Morris, J. (1995) 'Easy targets: a disability rights perspective on the "young carers' debate"', in Social Services Inspectorate (ed) Young Carers: Something to think about: Papers presented at four SSI workshops May-July 1995, London: Department of Health, pp 38-62.
331. Mort, M., Harrison, S. and Wistow, G. (1996) 'The user card: picking through the organisational undergrowth in health and social care', Contemporary Political Studies, vol 2, pp 1133-40.
332. Mouffe, C. (2002) Politics and passions: The stakes of democracy, London: Centre for the Study of Democracy, University of Westminster.
333. Mountford, L. and Anderson, W. (2001) 'Patient and public involvement in primary care groups and trusts: central Croydon case study', draft report, King's Fund Primary Care Programme.
334. MPU (Mental Patients' Union) (1973) 'Declaration of intent of the Mental Patients Union', http://studymore.org.uk/mpu.htm#MPUDeclaration
335. MPU Hackney (1975) 'Mental Patient's Union: interviews with "Joan Martin, Val and Andrew Roberts, Austin Johnson and others" (November 1974-February 1975)', New Humpty Dumpty Today, nos 6 and 7, pp 6-10.
336. MPU Manchester (1979) Your rights in mental hospital: A mental patients union (MPU) pamphlet, Manchester: MPU c/o Grass Roots Books.
337. MRC (Medical Research Council) (2008) Complex interventions guidance, Swindon: MRC, www.mrc.ac.uk/complexinterventionsguidance
338. Naples, N. A. (1996) 'A feminist revisiting of the insider/outsider debate: the outsider phenomenon in rural Iowa', Qualitative Sociology, vol 19, no 1, pp 83-107.
339. National Centre for Involvement (2009a) Patient and Public Involvement in NHS Commissioning: Lewisham Project.
340. National Centre for Involvement (2009b) Patient and Public Involvement in NHS Commissioning: Kent Project.
341. National Health and Medical Research Council (2002) Statement on Consumer and Community Participation in Health and Medical Research. Canberra, Australia: Commonwealth of Australia.
342. National Institutes of Health Director's Council of Public Representatives (2010) www.copr.nih.gov/About_COPR.SHTM
343. NAW (National Assembly for Wales) (2001) Improving health in Wales: A plan for the NHS with its partners, Cardiff: NAW.
344. NCAT (National Cancer Action Team) (2008) National Cancer Peer Review Programme: Handbook, London: NCAT.
345. NCB (National Children's Bureau) (2002) Including children in social research, Highlight no 193, London: NCB.
346. NCRI (National Cancer Research Institute) (2008) 2008-2013 NCRI strategic plan, London: NCRI.
347. Needham, C. (2008) 'Realising the potential of co-production: Negotiating improvements in public services' Social Policy & Society, vol 7, no 2, pp 221-231.
348. Needham, C. and Carr, S. (2009) Co-production: An emerging evidence base for adult social care transformation, Research Briefing 31, London: Social Care Institute for Excellence.
349. NHSE (National Health Service Executive) 1997) Health Action Zones: Invitation to bid, EL (97) 65, 30, Leeds: Department of Health.
350. NHSME (National Health Service Management Executive) (1992) Local voices: The views of local people in purchasing for health, London: Department of Health.
351. NICE (National Institute for Clinical Excellence) (2004) Guidance on cancer services: Improving supportive and palliative care for adults with cancer: The manual, London: NICE.
352. Nicholls, V., Wright, S., Waters, R. and Wells, S. (2003) Surviving user-led research: Reflections on supporting user-led research projects, London: Mental Health Foundation.
353. NIHR (National Institute for Health Research) (2007) Directors message 4, Patient and Public Involvement. www.nihr-ccf.org.uk/site/docdatabase/rfpb/rfpb_docs/ RfPB_Directors_message_4.pdf
354. NIHR (2010) The NIHR School for Social Care Research, http://www.nihr.ac.uk/research/Pages/programmes_school_for_social_care_research.aspx
355. Nowotny, H., Scott, P. and Gibbons, M. (2001) Rethinking science, Cambridge: Polity Press.
356. Nunes, T., Pretzlik, U. and Olsson, J. (2001) 'Deaf children's social relationships in mainstream schools', Deafness & Education International, vol 3, no 3, pp 123-36.
357. Offe, C. (1985) 'New social movements: challenging the boundaries of institutional politics', Social Research, vol 52, no 4, pp 817-68.
358. Oliver, M. (1990) The politics of disablement, London: Macmillan.
359. Oliver, M. (1992) 'Changing the social relations of research production?', Disability, Handicap & Society, vol 7, no 2, pp 101-14.
360. Oliver, M. (1997) 'Emancipatory research: realistic goal or impossible dream?', in Barnes, C. and Mercer, G. (eds) Doing disability research, Leeds: Disability Press.
361. Oliver, M. (1998) 'Theories of disability in health practice and research', British Medical Journal, vol 317, no 7170, pp 1446-9.
362. Oliver, M. (2004) 'If I had a hammer: the social model in action', in Swain, J., French, S., Barnes, C. and Thomas, C. (eds) Disabling Barriers: Enabling Environments, London: Sage Publications.
363. Oliver, M. (2009) Understanding disability: From theory to practice (second revised edition), Basingstoke: Palgrave Macmillan.
364. Oliver, M. and Barnes, C. (1998) Disabled people and social policy: From exclusion to inclusion, Harlow: Addison Wesley Longman.
365. Oliver, S., Clarke-Jones, L., Rees, R., Milne, R., Buchanan, P., Gabbay, J., Gyte, G., Oakley, A. and Stein, K. (2004) 'Involving consumers in Research and Development agenda setting for the NHS: developing an evidence-based approach', Health Technology Assessment Monographs, vol 8, no 15, pp 1-148.
366. Oliviere, D. (2000) 'A voice for the voiceless', European Journal of Palliative Care, vol 7, no 3, pp 102-5.
367. Oliviere, D. (2001) 'User involvement in palliative care services', European Journal of Palliative Care, vol 8, no 6, pp 238-41.
368. Osborne, S. P. and McLaughlin, K. (2004) 'The cross-cutting review of the voluntary sector: where next for local government-voluntary sector relationships?', Regional Studies, vol 38, no 5, pp 573-82.
369. Owen, S. and Kearns, R. (2006) 'Competition, adaptation and resistance: (re)forming health organisations in New Zealand's third sector', in Milligan, C. and Conradson, D. (eds) Landscapes of voluntarism, Bristol: The Policy Press, pp 115-32.
370. Parker, S. and Heapy, J. (2006) The journey to the interface: How public service design can connect users to reform, London: Demos.
371. Participation Works (2008) Listen and change: A guide to children and young people's participation rights, London: Participation Works.
372. Paterson, C. (2003) Consumer involvement in research into complementary and alternative therapies, Bristol: MRC Health Services Research Collaboration.
373. Patton, M. (1990) Qualitative evaluation and research methods, London: Sage Publications.
374. Pawson, R. and Tilley, N. (1997) Realistic evaluation, London: Sage Publications.
375. Peck, E., Gulliver, P. and Towel, D. (2002) 'Information, consultation or control: user involvement in mental health services in England at the turn of the century', Journal of Mental Health, vol 11, no 4, pp 441-51.
376. Perkins, R. and Goddard, K. (2004) 'Reality out of the rhetoric: increasing user involvement in a mental health trust', The Mental Health Review, vol 9, no 1, pp 21-4.
377. Pestoff, V., Osborne, S. P. and Brandsen, T. (2006) 'Patterns of co production in public services-some concluding thoughts', Public Management Review, vol 8, no 4, pp 591-5.
378. Phoenix, A. (1988) 'Narrow definitions of culture: the case of early motherhood', in Westwood, S. and Bhachu, P. (eds) Enterprising women: Ethnicity, economy and gender relations, London: Routledge.
379. Phoenix, A. (1991) 'Mothers under twenty: outsider and insider views', in Phoenix, A., Woollett, A. and Lloyd, E. (eds) Motherhood: Meanings, practices and ideologie, London: Sage Publications.
380. Pickard, S. and Smith, K. (2001) 'A "Third Way" for lay involvement: what evidence so far?', Health Expectations, vol 4, pp 170-9.
381. Pivik, J., Rode, E. and Ward, C. (2004) 'A consumer model for health technology assessment in Canada', Health Policy, vol 69, pp 253-68.
382. Plowden, W. (2003) 'The compact-attempts to regulate relationships between government and the voluntary sector in England', Nonprofit and Voluntary Sector Quarterly, vol 32, no 3, pp 415-32.
383. PMSU (Prime Minister's Strategy Unit) (2005) Transforming the life chances of disabled people, London: HM Government.
384. Poll, C., Duffy, S., Hatton, C., Sanderson, H. and Routledge, M. (2006) A report on In Control's first phase 2003-2005, London: In Control.
385. Popay, J. and Williams, G. (1996) 'Public health research and lay knowledge', Social Science & Medicine, vol 42, no 5, pp 759-68.
386. Postle, K., Beresford, P. and Hardy, S. (2008) 'Assessing research and involving people using health and social care services: addressing the tensions', Evidence & Policy, vol 4, no 3, pp 251-62.
387. Powell, M. A. and Smith, A. B. (2009) 'Children's participation rights in research', Childhood, vol 16, pp 124-42.
388. Powers, S. (2002) 'From concepts to practice in deaf education: a United Kingdom perspective on inclusion', Deaf Studies and Deaf Education, vol 7, no 3, pp 230-43.
389. Price, K., Gillespie, S. and Rutter, D. (2009) 'Dedicated personality disorder services: a qualitative analysis of service structure and treatment process', Journal of Mental Health, vol 18, no 6, pp 467-75.
390. Prior, L. (2003) 'Belief, knowledge and expertise: the emergence of the lay expert in medical sociology', Sociology of Health and Illness, vol 25, no 3, pp 41-57.
391. Prout, A. (2002) 'Researching children as social actors: an introduction to the Children 5-16 programme', Children and Society, vol 16, no 2, pp 67-76.
392. Raine, P. (2001) Women's perspectives on drugs and alcohol: The vicious circle, Aldershot: Ashgate.
393. Ramon, S. (2003) 'User research: reflection and action', in Ramon, S. (ed) Users researching health and social care: An empowering agenda?, Birmingham: Venture Press.
394. Ray, M. (2007) 'Redressing the balance? The participation of older people in research', in Bernard, M. and Scharf, T. (eds) Critical perspectives in ageing societies, Bristol: The Policy Press, pp 73-87.
395. Raynes, N., Temple, B., Glenister, C. and Coulthard, L. (2001) Quality at home for older people: Involving service users in defining home care specifications, Bristol and York: The Policy Press and Joseph Rowntree Foundation.
396. RCUK (Research Councils UK) (2008) The concordat to support the career development of researchers, www.researchconcordat.ac.uk/documents/concordat.pdf
397. Reason, P. (ed) (1994) Participation in human inquiry, London: Sage Publications.
398. Reason, P. and Bradbury, H. (2001) 'Introduction: inquiry and participation in search of a world worthy of human aspiration', in Reason, P. and Bradbury, H. (eds) Handbook of action research, London: Sage Publications.
399. Reason, P. and Torbet, W. R. (2001) 'The action turn: toward a transformational social science', Concepts and Transformation, vol 6, no 1, pp 1-37.
400. Redfern, M., Keeling, J. W. and Powell, E. (2001) The Royal Liverpool Children's Inquiry report, London: The Stationery Office.
401. Rhodes, P., Nocon, A., Booth, M., Chowdrey, M. Y., Fabian, A., Lambert, N., Mohammed, F. and Walgrove, T. (2002) 'A service users' research advisory group from the perspectives of both service users and researchers', Health & Social Care in the Community, vol 10, no 5, pp 402-9.
402. Ripley, M., Sullivan, D. and Evans, J. (2007) 'The role of patient users in cancer genetic services in primary care', Familial Cancer, vol 6, pp 241-8.
403. Robert, G., Hardacre, J., Locock, L., Bate, P. and Glasby, J. (2003) 'Redesigning mental health services: lessons on user involvement from the Mental Health Collaborative', Health Expectations, vol 6, pp 60-71.
404. Roberts, A. (2009) 'Scotland the brave', Mental Health Today, July/August, pp 16-18.
405. Roberts, C. and Hindley, P. (1999) 'Practitioner review: the assessment and treatment of Deaf children with psychiatric disorders', Journal of Child Psychology and Psychiatry, vol 40, no 2, pp 151-67.
406. Rogers, A. and Pilgrim, D. (1991) '"Pulling down churches": accounting for the British mental health users' movement', Sociology of Health and Illness, vol 13, no 2, pp 129-48.
407. Rose, D. (2001) Users' voices: The perspectives of mental health service users on community and hospital care, London: The Sainsbury Centre.
408. Rose, D. (2003) 'Collaborative research between users and professionals: peaks and pitfalls', Psychiatric Bulletin, vol 27, pp 404-6.
409. Rose, D. (2004) 'Telling different stories: user involvement in mental health research', Research and Policy Planning, vol 22, no 2, pp 23-30.
410. Rose, D., Fleischmann, P., Wykes, T., Leese, M. and Bindman, J. (2003) 'Patients' perspectives on electroconvulsive therapy: systematic review', British Medical Journal, vol 326, no 7403, pp 1363-7.
411. Ross, F., Donovan, S., Brearley, S., Victor, C., Cottee, M., Crowther, P. and Clark, E. (2005) 'Involving older people in research: methodological issues', Health & Social Care in the Community, vol 13, no 3, pp 268-75.
412. Rossi, P. N. (2009) Fighting cancer with more than medicine: A history of Macmillan Cancer Support, Stroud: The History Press.
413. Rowling, L. (2007) 'School mental health: politics, power and practice', Advances in School Mental Health Promotion, vol 1, no 1, pp 23-31.
414. Roxan, D. (1958) Sentenced without cause: The story of Peter Whitehead, London: Frederick Muller.
415. RQIA (2009) Corporate Strategy 2009-12. Informing and Improving Health and Social Care. Belfast. Regulation and Quality Improvement Authority.
416. Ruel, B. (2007) 'Personal profile on pain', British Journal of General Practice, vol 57, no 535, p 163.
417. Russell, M. (1998) Beyond ramps: Disability at the end of the social contract: A warning from an uppity crip, Monroe, ME: Common Courage Press.
418. Savage, C., Xu, Y., Lee, R., Rose, B., Kappesser, M. and Anthony, J. (2006) 'A case study in the use of community-based participatory research in public health nursing', Public Health Nursing, vol 23, no 5, pp 472-8.
419. Sayce, L. (2000) From psychiatric patient to citizen, Basingstoke: Macmillan.
420. Scherer, S. and Sexton, S. (2010) Involving service users in commissioning services, York: Joseph Rowntree Foundation.
421. SCIE (Social Care Institute for Excellence) (2008) Strengthening user involvement in Northern Ireland: A summary and action plan, London: SCIE.
422. SCIE (2009) Building user and carer involvement in social work education, London: SCIE.
423. Scottish Executive Health Department (2001) Our national health: A plan for action, a plan for change, Edinburgh: Scottish Executive.
424. Sedgwick, P. (1982) Psycho politics, London: Pluto Press.
425. Serrano-Anguilar, P., Trujillo-Martin, M. M., Ramos-Goni, J. M., Mahtani-Chugani, V., Perestelo-Perez, L. and Posada-de la Paz, M. (2009) 'Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias', Social Science and Medicine, vol 69, pp 920-5.
426. SEU (Social Exclusion Unit) (1999) Teenage pregnancy, London: HMSO.
427. Sevenhuijsen, S. (1998) Citizenship and the ethics of care, London: Routledge.
428. Shakespeare, T. (1993) 'Disabled people's self-organisation: a new social movement?', Disability, Handicap and Society, vol 8, no 3, pp 249-64.
429. Shakespeare, T. (2006) Disability rights and wrongs, London: Routledge.
430. Shaping Our Lives (2010) www.shapingourlives.org.uk/projects.html
431. Sinclair, R. (2004) 'Participation in practice: making it meaningful, effective and sustainable', Children & Society, vol 18, pp 106-18.
432. Sinclair, R. and Franklin, A. (2000) A Quality Protects research briefing: Young people's participation, London: Department of Health, Research in Practice and Making Research Count.
433. Sitzia, J., Cotterell, P. and Richardson, A. (2006) 'Interprofessional collaboration with service users in the development of cancer services: the Cancer Partnership Project', Journal of Interprofessional Care, vol 20, no 1, pp 60-74.
434. Slough User Led Consultation (2004) All talk: a study of talking and mental health. East Berkshire Mind: Slough. http://www.spn.org.uk/fileadmin/spn/user/*.pdf/ All_talk_research_report.pdf accessed 04 July 2011
435. Smith, E., Ross, F., Donovan, S., Manthorpe, J., Brearley, S., Sitzia, J. and Beresford, P. (2008) 'Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice', International Journal of Nursing Studies, vol 45, no 2, pp 298-315.
436. South, J. (2004) 'Rising to the challenge: a study of patient and public involvement in four primary care trusts', Primary Health Care Research and Development, vol 5, pp 125-34.
437. South London and Maudsley Foundation NHS Trust (2009) Strategy, London: South London and Maudsley Foundation NHS Trust.
438. Soyez, V., Tatrai, H., Broekaert, E. and Bracke, R. (2004) 'The implementation of contextual therapy in the therapeutic community for substance abusers: a case study', Journal of Family Therapy, vol 26, no 3, pp 286-305.
439. Spandler, H. (2006) Asylum to action: Paddington Day Hospital, therapeutic communities and beyond, London: Jessica Kingsley Publishers.
440. Spicer, N. and Evans, R. (2005) 'Developing children and young people's participation in strategic processes: the experience of the Children's Fund Initiative', Social Policy and Society, vol 5, no 2, pp 177-88.
441. SSI (Social Services Inspectorate) and Audit Commission (2000) A report of the joint review of social services in Wiltshire, Abingdon: Audit Commission Publications.
442. Staley, K. (2009) Exploring impact: Public involvement in NHS, public health and social care research, Eastleigh: INVOLVE.
443. Staniszewska, S., Brett, J., Mockford, C. and Barber, R. (2011) 'The GRIPP checklist: strengthening the quality and transparency of reporting for patient and public involvement in research', International Journal of Technology Assessment in Health Care, in press.
444. Staniszewska, S., Jones, N., Newburn, M. and Marshall, S. (2007) 'User involvement in the development of a research bid: barriers, enablers and impacts', Health Expectations, vol 10, no 2, pp 173-83.
445. Staniszewska, S., Herron-Marx, S. and Mockford, C. (2008) 'Measuring the impact of patient and public involvement: the need for an evidence base', International Journal for Quality in Health Care, vol 20, no 6, pp 373-4.
446. Stanley, L. and Wise, S. (1993) Breaking out again: Feminist ontology and epistemology, London: Routledge.
447. Steel, R. (2005) 'Actively involving marginalised and vulnerable people in research', in Lowes, L. and Hulatt, I. (eds) Involving service users in health and social care research, London: Routledge.
448. Stone, E. (ed) (1999) Disability and development: Learning from action and research in the majority world, Leeds: The Disability Press.
449. Stone, E. and Priestley, M. (1996) 'Parasites, pawns and partners: disability research and the role of non-disabled researchers', British Journal of Sociology, vol 47, no 4, pp 699-716.
450. Survivors History Mental health and survivors movements, http://studymore.org.uk/ mpu.htm, archived, under Mental health history timeline, in the UK Web Archive at www.webarchive.org.uk/ukwa/target/145406
451. Survivors History Group (2008) Celebrating our history: Valuing ourselves: A mental health service users' conference with historians, http://studymore.org.uk/m080529.pdf
452. Swain, J., Finkelstein, V., French, S. and Oliver, M. (1993) Disabling barriers: Enabling environments, London: Sage Publications.
453. Sweeney, A. (2009) 'So what is survivor research?', in Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) This is survivor research, Ross-on-Wye: PCCS Books, pp 22-37.
454. Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) (2009) This is survivor research, Ross-on-Wye: PCCS Books.
455. Talbot, M., Atkinson, K. and Atkinson, D. (2003) Language and power in the modern world, Edinburgh: Edinburgh University Press.
456. Tan, L. and Szebeko, D. (2009) 'Co designing for dementia: the Alzheimer 100 project', Australasian Medical Journal, vol 1, no 12, pp 185-98.
457. Tanesini, A. (1999) An introduction to feminist epistemologies, Oxford: Blackwell Publishers.
458. Tarrow, S. (1998) Power in movement, Cambridge: Cambridge University Press.
459. Taylor, G., Brown, K., Caldwell, K., Ghazi, F., Henshaw, L. and Vernon, L. (2004) 'User involvement in primary care: a case study examining the work of one patient participation group attached to a primary care practice in North London', Research Policy and Planning, vol 22, no 1, pp 21-30.
460. Taylor, V. (2000) 'Emotions and identity in women's self help movements', in Stryker, S., Owens, T. J. and White, R. W. (eds) Self, identity and social movements, Minnesota, MN: University of Minnesota Press.
461. Telford, R., Boote, J. and Cooper, C. (2004) 'What does it mean to involve consumers successfully in NHS research? A consensus study', Health Expectations, vol 7, no 3, pp 92-103.
462. Thomas, C. (2007) Sociologies of disability and illness: Contested ideas in disability studies and medical sociology, Basingstoke: Palgrave Macmillan.
463. Thompson, J., Barber, B., Ward, P., Boote, J., Cooper, C., Armitage, C. and Jones, G. (2009) 'Health researchers' attitudes towards public involvement in health research', Health Expectations, vol 12, pp 209-20.
464. Thornicroft, G. (2006) Shunned: Discrimination against people with mental illness, Oxford: Oxford University Press.
465. Todd, M. J. and Taylor, G. (eds) (2004a) 'Introduction', in Democracy and participation: Popular protest and new social movements, London: Merlin Press, pp 1-28.
466. Todd, M. J. and Taylor, G. (eds) (2004b) Democracy and participation: Popular protest and new social movements, London: Merlin Press.
467. Touraine, A. (1981) The voice and the eye: An analysis of social movements, Cambridge: Cambridge University Press.
468. Tregaskis, C. (2004) Constructions of disability: Researching the interface between disabled and non-disabled people, London: Routledge.
469. Treseder, P. (1997) Empowering children & young people training manual: Promoting involvement in decision making, London: Save the Children.
470. Tritter, J. Q. and McCallum, A. (2006) 'The snakes and ladders of user involvement: moving beyond Arnstein', Health Policy, vol 76, pp 156-68.
471. Tritter, J. Q., Barley, V., Daykin, D., Evans, S., McNeill, J., Rimmer, J., Sanidas, M. and Turton, P. (2003) 'Divided care and the Third Way: user involvement in statutory and voluntary sector cancer services', Sociology of Health and Illness, vol 25, no 5, pp 429-56.
472. Trivedi, P. and Wykes, T. (2002) 'From passive subjects to equal partners: qualitative review of user involvement in research', British Journal of Psychiatry, vol 181, pp 468-72.
473. Tronto, J. (1993) Moral boundaries: A political argument for an ethic of care, New York, NY and London: Routledge.
474. Turner, M. and Beresford, P. (2005) User controlled research: Its meanings and potential, Eastleigh: INVOLVE.
475. UK Clinical Research Collaboration (2011)) Patient and Public Involvement Strategic Plan 2008-2011, London: UK Clinical Research Collaboration www.ukcrc.org/ patientsandpublic/ppi/ppistratplan/
476. UN (United Nations) (1989) Convention on the rights of the child, Geneva: Office of the United Nations High Commissioner for Human Rights.
477. Usher, R. (1996) 'A critique of the neglected epistemological assumptions of educational research', in Scott, D. and Usher, R. (eds) Understanding educational research, London: Routledge.
478. Valentine, G. and Skelton, T. (2007) 'The right to be heard: citizenship and language', Political Geography, vol 26, no 2, pp 121-40.
479. Waddell, G., & Burton, A.K. (2006) Is Work Good for Your Health and Wellbeing? Norwich, UK: The Stationary Office
480. The Sainsbury Centre for Mental Health (2007) Work and wellbeing: Developing primary mental health care services. Briefing 34. London, UK: The Sainsbury Centre for Mental Health
481. Walker, A. (2007) 'Why involve older people in research?', Age and Ageing, vol 36, pp 481-3.
482. Wallcraft, J., Read, J. and Sweeney, A. (2003) On our own terms: Users and survivors of mental health services working together for support and change, London: Sainsbury Centre for Mental Health.
483. Walters, G. D. (2002) 'Twelve reasons why we need to find alternatives to Alcoholics Anonymous', Addictive Disorders and their Treatment, vol 1, no 2, pp 53-9.
484. Ward, L. and Gahagan, B. (2010) 'Crossing the divide between theory and practice: research and an ethic of care', Ethics and Social Welfare, vol 4, pp 210-16.
485. Ward, L., Barnes, M. and Gahagan, B. (2008) Cheers!? A project about older people and alcohol, Brighton: Health and Social Policy Research Centre, University of Brighton, www.brighton.ac.uk/sass/research/publications
486. Weare, K. and Gray, G. (2003) What works in promoting children's emotional and social competence?, London: DfES.
487. WFOT (World Federation of Occupational Therapists) (2004) 'What is occupational therapy?, www.wfot.org/information.asp Whitehead, E. (2001) 'Teenage pregnancy: on the road to social death', International Journal of Nursing Studies, vol 38, pp 437-46.
488. Wilcock, A. A. (1999) 'Reflections on doing, being and becoming', Australian Occupational Therapy Journal, vol 46, pp 1-11.
489. Williams, V. (2003) User-led research with people with learning disabilities: An introduction and practical guide for researchers & practitioners, Exeter: Centre for Evidence-Based Social Services.
490. Wilson, C. Letherby, G. Brown, G. and Bailey, N. (2002) The baby brigade: teenage mothers and sexuality. Journal of the Association of Research on Mothering 4, 1: 101-110.
491. Wilson, C. (2007) 'An inappropriate transition to adulthood? Teenage pregnancy and the discourses of childhood in the UK', Journal of the Association for Research on Mothering, vol 9, no 1, pp 92-100.
492. Winter, R. (2002) 'Truth or fiction: problems of validity and authenticity in narratives of action research', Educational Action Research, vol 10, no 1, pp 143-54.
493. Women in Mind (1986) Finding our own solutions: Women's experience of mental health care, London: Mind.
494. Wright, D. N., Hopkinson, J. B., Corner, J. L. and Foster, C. L. (2006) 'How to involve cancer patients at the end of life as co-researchers', Palliative Medicine, vol 20, no 8, pp 821-7.
495. WSUN (Wiltshire and Swindon Users' Network) (1996) I am in control, Trowbridge: WSUN.
496. Wyatt, K., Carter, M., Mahtani, V., Barnard, A., Hawton, A. and Britten, N. (2008) 'The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme, Family Practice, vol 25, no 3, pp 216-24.
497. Young, I. M. (2000) Inclusion and democracy, Oxford: Oxford University Press.
498. Zarb, G. (1992) 'On the road to Damascus: first steps towards changing the relations of disability research production', Disability, Handicap & Society, vol 7, no 2, pp 125-38.