Participation - finding out what difference it makes


Numbered references

R01 - Crawford, M. (2003) User Involvement in Change Management: A Review of the Literature, SDO

R02 - Carr, S. (2004) Position paper 3: Has service user participation made a difference to social care services? London: SCIE

R03 - Coad, J. and Lewis, A. (2004) Engaging children and young people in research, Literature review for the National Evaluation of the Children’s Fund (NECF), London

R04 - Franklin, A. and Sloper, P. (2004) Participation of disabled children and young people in decision-making within social services departments in England, Social Policy Research Unit, York

R05 - Young, A. F. and Chesson, R. A. (2006) ‘Stakeholders’ views on measuring outcomes for people with learning disabilities’, Health Social Care in the Community 14 (1) 17–25(9)

R06 - Wright, P., Turner, C., Clay, D. and Mills, H. (2006) Guide 11: Involving children and young people in developing social care, London: SCIE

R07 - Cashmore, J., ‘Promoting the participation of children and young people in care, Child Abuse and Neglect 2; 26(8)

R08 - Crawford, M.J., Rutter. D., Manley, C., Weaver, T. and Bhui, K. (2002) ‘Systematic review of involving patients in the planning and development of health care’, British Medical Journal 325 (7375)

R09 - Langton, H., Barnes, M., Haslehurst, S., Rimmer, J., Turton, P. and Langton, H. (2003) Collaboration, user involvement and education: a systematic review of the literature and report of an educational initiative, European Journal of Oncology Nursing 7(4): 242–252

R10 - Simpson, E. L., House, A. O. (2002) ‘Involving users in the delivery and evaluation of mental health services: Systematic review’, British Medical Journal 325 (7375): 1265–1268

R11 - Taylor. S. et al. (2005) Widening adult participation in learning: a systematic review of strategies: research report, London: Learning and Skills Development Agency

R12 - Thornicroft, G. and Tansella, M. (2005) ‘Growing recognition of the importance of service user involvement in mental health service planning and evaluation’, Epidemiologia Psichiatria Sociale 14(1):1–3

R13 - Trivedi, P. and Wykes, T. (2002) ‘From passive subjects to equal partners: qualitative review of user involvement in research’, British Journal of Psychiatry 181:468–472

R14 - Truman, C. (2005) ‘The autonomy of professionals and the involvement of patients and families’, Current Opinion in Psychiatry 18/5:572–5

R15 - Barnes, C. and Mercer, G. (2003), ‘Health/Research Review on User Involvement in Promoting Change and Enhancing the Quality of Social ‘Care’ Services for Disabled People’

R16 - CCNAP (2006) Asking the Experts. A Guide to Involving People in Shaping Health and Social Care Services, Community Care Needs Assessment Project (CCNAP)

R17 - Janzon, K. and Law, S. (2003) Older People Influencing Social Care – Aspirations And Realities. Research Review On User Involvement In Promoting Change And Enhancing The Quality Of Social Care Services, London: SCIE

R18 - Salmon, N. (2003) ‘Service Evaluation and the Service User: a Pluralistic Solution’, The British Journal of Occupational Therapy 66(7)

R19 - Williams, V. et al (2003), Has anything changed? Norah Fry Research Centre

R20 - Bentley, J. (2003) ‘Older people as health service consumers: disempowered or disinterested?’, British Journal of Community Nursing 8, 181–187

R21 - Ackerman L., Feeny T., Hart J. and Newman J. (2003) Understanding and evaluating children’s participation: A review of contemporary literature, Plan UK/ Plan International

R22 - Kirby P. and Bryson, S. (2002) Measuring the magic? Evaluating and researching young people’s participation in public decision making, Carnegie Young People Initiative (see T11)

Other references

Baum, F., Cooke, R. and Murray, C. (1998) (see T4 references)

Branfield, F. and Beresford, P. with Eamon J. Andrews, Patricia Chambers, Patsy

Staddon, Grace Wise and Bob Williams-Findlay (2006), ‘Making user involvement work: supporting service user networking and knowledge’, Joseph Rowntree Foundation (Availbale to download for free from Joseph Rowntree Foundation website).

Marsh, P. and Doel, M. (2005) The Task-Centred Book, London: Routledge/Community Care

McLaughlin, J. A. and Jordan, G.B. (1999) ‘Logic models: a tool for telling your program’s performance story’ in Evaluation and Program Planning 22, pp65–72

Shaping Our Lives (2007) ‘Beyond the usual suspects: developing diversity in involvement’ in Shaping Our Lives newsletter 10

Telford, R., Boote, J. D. and Cooper, C. L. (2004) What does it mean to involve consumers successfully in NHS research? A consensus study’, Health Expectations:

An International Journal of Public Participation in Health Care and Health Policy 7, 209–220

Additional references: difference and diversity

Barnes, M., Davis, A., and Rogers, H. (2006) ‘Women’s voices, Women’s choices: Experiences and creativity in consulting women users of mental health services’, Journal of Mental Health 15, 329–341

Baxter, L., Thorne, L., and Mitchell, A. (2001) Small Voices, Big Noises. Lay involvement in health research: lessons from other fields

Bennion, C. A. (2003) A User Involvement Strategy for Action for Blind People

Caron-Flinterman, J. F., Broerse, J. E., and Bunders, J. F. (2005) ‘The experiential knowledge of patients: a new resource for biomedical research?’ Soc Sci Med, 60, 2575–2584

Dewar, B. J. (2005) ‘Beyond tokenistic involvement of older people in research – a framework for future development and understanding’, Journal of Clinical Nursing, 14 Suppl 1, 48–53

Evans, R. and Banton, M. (2001) Joseph Rowntree Foundation Findings: Involving black disabled people in shaping services, York: Joseph Rowntree Foundation

Faulkner, A. and Morris, B. (2003) Expert paper: User Involvement in Forensic Mental Health Research and Development, NHS National Programme on Forensic Mental Health Research and Development

Griffiths, K. M., Christensen, H., Barney, L., Jenkins, A., Kelly, C., and Pullen, K. (2006) Promoting consumer participation in mental health research: A National Workshop, Depression & Anxiety Consumer Research Unit, Centre for Mental Health Research,The Australian National University

Howe, A., MacDonald, H., Barrett, B., and Little, B. (2006) ‘Ensuring public and patient participation in research: a case study in infrastructure development in one UK Research and Development consortium’, Primary Health Care Research and Development, 7, 60–67

Janzen, R., Nelson, G., Trainor, J., and Ochocka, J. (2006) ‘A Longitudinal study of mental health consumer/survivor initiatives: Part 4 – Benefits beyond the self? A quantitative and qualitative study of system-level activities and impacts’, Journal of Community Psychology, 34, 285–303

Minogue, V., Boness, J., Brown, A., and Girdlestone, J. (2003) Making a Difference. The Impact of Service User and Carer Involvement in Research, South West Yorkshire Mental Health NHS Trust

Minogue, V., Boness, J., Brown, A., and Girdlestone, J. (2005) ‘The impact of service user involvement in research’, International Journal of Health Care Quality Assurance, 18, 103–112

Mullender, A. and Hague, G. (2005) ‘Giving a Voice to Women Survivors of Domestic Violence through Recognition as a Service User Group’, British Journal of Social Work, 35, 1321–1341

Nelson, G., Ochocka, J., Janzen, R., and Trainor, J. (2006) ‘A longitudinal study of mental health consumer/survivor initiatives: Part 1 – Literature review and overview of the study’, Journal of Community Psychology, 261–272

Nelson, G., Ochocka, J., Janzen, R., and Trainor, J. (2006) ‘A longitudinal study of mental health consumer/survivor initiatives: Part 2 – A quantitative study of impacts of participation on new members’, Journal of Community Psychology, 34, 261–272

Ochocka, J., Nelson, G., Janzen, R., and Trainor, J. (2006) ‘A longitudinal study of mental health consumer/survivor initiatives: Part 3 – A qualitative study of impacts of participation on new members’, Journal of Community Psychology, 34, 273–283

Oliver, S., Clarke-Jones, L., Rees, R., Milne, R., Buchanan, P., Gabbay, J. et al (2004) ‘Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach’, Health Technology Assessment (Winchester, England), 8, I–IV

Oliver, S., Milne, R., Bradburn, J. D., Buchanan, P., Kerridge, L., Walley, T. et al (2001) ‘Investigating Consumer Perspectives on Evaluating Health Technologies’, Evaluation, 7, 468–486

Robson, P., Begum, N., and Lock, M. (2003) Joseph Rowntree Foundation Findings: Increasing user involvement in voluntary organizations, Y: Joseph Rowntree Foundation

Roulstone, A., Hudson, V., Kearney, J., and Martin, A. (2006) Position Paper 05: Working together - Carer participation in England, Wales and Northern Ireland, London: SCIE

Simpson, E. (2002) A guide to involving users, ex-users and carers in mental health service planning, delivery or research: a health technology approach, University of Leeds

Social Policy Research Unit, U. o. Y. (2004) Participation of disabled children and young people in decision-making within social services departments in England (Rep. No. 2004–02), Research Findings, SPRU

Steel, R. (2005) ‘Actively involving marginalized and vulnerable people in research’ in L. Lowes and I. Hulatt (Eds.) Involving Service Users in Health and Social Care Research (pp18–29), London: Routledge

Truman, C. and Raine, P. (2002) ‘Experience and meaning of user involvement: some explorations from a community mental health project’, Health & Social Care in the Community, 10, 136–143