Resources

Participatory health research:

Springett, J., Wright, M. T., & Roche, B. (2011) Developing Quality Criteria for Participatory Health Research: An Agenda for Action.

Discussion Paper SP1. Available at: http://www.icphr.org/uploads/2/0/3/9/20399575/ichpr_position_paper_1_defintion_-_version_may_2013.pdf (Accessed: 12^th November 2014).

Winter, R. & Mungiddings, C. (2001) A Handbook of Action Research in Health and Social Care. London: Routledge.

Emancipatory research:

Beresford, P. (2007) ‘User involvement, research and health inequalities: developing new directions’, Health & Social Care in the Community, 15(4), pp.306-12.

Beresford, P. and Wallcraft, J. (1997) Psychiatric System Survivors and Emancipatory Research: Issues, Overlaps and Differences, in Barnes, C. and Mercer, G. (eds.) Doing Disability Research. Leeds: The Disability Press.

Service user involvement:

Barnes, M. and Cotterell, P. (2012) Critical Perspectives on User Involvement. Bristol: The Policy Press.

DoH, (2008) Real Involvement: working with people to improve health services. London: Department of Health.

Wallcraft, J. Amering, M. and Schrank, B. (2009) Handbook of service user involvement in mental health research. Chichester: Wiley-Blackwell.

Data analysis:

Gillard, S., Simons, L., Turner, K., Lucock, M., & Edwards, C. (2012) ‘Patient and public involvement in the coproduction of knowledge: reflection on the analysis of qualitative data in a mental health study’, Qualitative Health Research, 22(8), pp.1126–37.

Sweeney, A., Greenwood, K. E., Williams, S., Wykes, T., & Rose, D. S. (2013) ‘Hearing the voices of service user researchers in collaborative qualitative data analysis: the case for multiple coding’, Health Expectations, 16(4), pp.89–99.

Impact and waste:

Chalmers I, and Glaziou P. (2009) ‘Avoidable waste in the production and reporting of research evidence’, Lancet, 374, pp. 86-89.

INVOLVE (2013) Exploring the impact of public involvement on the quality of research: examples. Available at: http://www.invo.org.uk/wp-content/uploads/2014/11/INVOLVEExploringImpactQualityResearchExamples_updated-July-2014.pdf (Accessed: 12^th November 2014).

National Coordinating Centre for Public Engagement (2013) Embedding Impact Analysis in Research. Available at: http://www.publicengagement.ac.uk/sites/default/files/publication/nccpe_jisc_booklet_proof_07.05.13.pdf (Accessed: 12^th November 2014).

Staley, K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research. Available at: http://www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdf (Accessed: November 12^th, 2014).

Rigour and trustworthiness:

Cho, J. and Trent, A. (2006) ‘Validity in qualitative research revisited’, Qualitative Research, 6(3), pp.319–340.

Kemmis, S. (2001) ‘Is Validity Really an Issue for Participatory Action Research’, Studies in Cultures, Organizations and Societies, 4(2), pp.211–236.

Lather, P. (1986). ‘Issues of validity in openly ideological research: Between a rock and a soft place’, Interchange, 17(4), pp. 63–84.

Mental Health and Recovery:

Anthony, W.A. (1993) Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16, pp.11–23.

Beresford, P., Nettle, M, A., & Perring, R. (2010) Towards a social model of madness and distress ? Exploring what service users say. Available at: http://www.jrf.org.uk/publications/social-model-madness-distress (Accessed: November 12^th, 2014).

Beresford, P (2000) What have madness and psychiatric systems survivors got to do with disability and disability studies? Disability and Society 15,1 pp.167-172.

Coles, S. Keenan, S. and Diamond, B. (2013) Madness contested power and practice. Ross on Rye: PCCS Books.

Coleman, R. (1999) Recovery: An alien concept. Gloucester: Handsell Publishing.

Ralph, R. and Corrigan, P. (eds) (2005) Recovery in mental illness: Broadening our understanding of wellness. Washington, DC. American Psychological Association.

Scottish Recovery Network (2012). What is recovery? Available online at: http://www.scottishrecovery.net/What-is-Recovery/what-is-recovery.html (Accessed: November 12^th, 2014).

Shepherd G. Boardman J. & Slade M. (2008) Making Recovery a Reality Sainsbury Centre for Mental Health. London.

Care Coordination:

The Care Co-ordination website address: http://www.cpaa.org.uk/

Department of Health (2008) Refocusing the Care Programme Approach: Policy and Position Practice Guidance, Available at: http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets
/@dh/@en/documents/digitalasset/dh_083649.pdf (Accessed: 17^th November 2014)

Ethics:

Barnes, C. and Mercer, G. (1997) Doing Disability Research. Leeds: The Disability Press.

Council of Europe (2000) The development of structures for citizen and patient participation in the decision-making process affecting health care. Recommendation (2005) adopted by the Committee of Ministers of the Council of Europe on 24 February 2000, Strasbourg: Council of Europe, Department of Health.

Department of Health (2006) Best Research for Best Health: A New National Health Research Strategy. London: Department of Health.

Fistein, E. and Quilligan, S (2011) In the lions den? Experiences of interaction with research ethics committees Journal of Medical Ethics online.

Garrard, E. and Dawson, A. (2005) what is the role of the research ethics committee? Paternalism, inducement and harm in research ethics Journal of Medical Ethics 31: pp.419-423.

Hedgecoe, A. (2008) Research Ethics review and the sociological research relationship Sociology 42: 873.

Hoeyer, K., Dahlager, L. and Lynoe, N (2005) Conflicting notions of research ethics. The mutually challenge traditions of social scientists and medical researchers Social Science and Medicine 61: pp.1741-1749.

Holmwood, J. (2010) ‘Research Ethics Committees (REC) and the Creaking Piers of Peer Review’, Sociological Research Online, 15 (4), 14.

Renold, E., Holland, S., Ross, N. J. and Hillman, A (2008) Becoming participant: problematizing ‘Informed consent’ in participatory research with young people in care Qualitative Social Work 7: 427.

Wolf, L. E. (2010) The Research Ethics Committee is not the enemy: oversight of community-based participatory research. Journal of Empirical Research on Human Research Ethics 5: pp.77-86.

Training:

Bell, J. (2005). Doing your research project: a guide for first-time researchers in education, health and social science. Buckingham: Open University Press.

Buckland, S. Hayes, H. Ostrer, C. Royle, J. Steel, R. Tarpey, M. Walton, J. & Yeeles, P (2007) So what’s it all about? Involve – Public Information Pack 1. Available at http://www.invo.org.uk/pdfs/PIP1whatisitallabout.pdf and accessed June 2011.

Bowling, A. (2002). Research Methods in Health. Buckingham: Open University Press.

Cresswell, J. W. (2003). Research Design: Qualitative, Quantitative and Mixed Method Approaches. London: Sage. [Especially Chapter 6].

Denscombe, M. (1998). The Good Research Guide. Buckingham: Open University Press.

Denscombe, M. (2002). Ground Rules for Good Research: A 10 point guide for social researchers. Buckingham: Open University Press.

Faulkner, A. & Nicholls, V. (1999). The DIY guide to survivor research. London: Mental Health Foundation.

Gay, T. (2010) Ten Great Myths of Patient & Public Involvement. Available at http://www.natpact.info/uploads/tengreatmyths.pdf and accessed June 2011.

Minogue, V., Holt, B., Karban, K., Gelsthorpe, S., Firth, S. & Ramsay, T. (2009) Service User and Carer Involvement in Mental Health Education, Training and Research – A Literature Review, Mental Health and Learning Disabilities Research and Practice. Available at: http://eprints.hud.ac.uk/12434/1/6210.pdf (Accessed: 17^th November 2014).

Moltu, C., Stefansen, J., Svisdahl, M., & Veseth, M. (2012) ‘Negotiating the co-researcher mandate – service users’ experiences of doing collaborative research on mental health’, Disability and Rehabilitation, 34(19), pp. 1608–16.

Punch, K. (2006) Developing Effective Research Proposals. London: Sage.

Ramon, S. (ed) (2003) Service users researching health and social care: an empowering agenda. Birmingham: Venture Press.

Walliman, N. (2006) Social Research Methods: Sage Course Companion. London: Sage.

Wallcraft, J., Schrank, B. and Amering, M. (2009) Handbook of service user involvement in mental health research London: Wiley-Blackwell.

Payment and practicalities:

Cook, T. (2012) Where Participatory Approaches Meet Pragmatism in Funded (Health) Research : The Challenge of Finding Meaningful Spaces. FORUM: QUALITATIVE SOCIAL RESEARCH, 13(1).

NIHR (2014) Payment and Benefits Information for Service Users and Carers, Available at: http://www.crn.nihr.ac.uk/mentalhealth/pcpie/payment-and-benefits-information-for-service-users-and-carers/ (Accessed: 17^th November 2014).

The INVOLVE web site has some very useful documents relating to payment. Please refer to publications on INVOLVE website: http://www.invo.org.uk/resource-centre/

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“The research was funded by the National Institute for Health Research (NIHR) Research for Patient Benefit Programme (Programme Grant PB-PG-0808-17269) and was conducted at Northumberland Tyne and Wear NHS Foundation Trust. The research team are grateful for the support of the North East Mental Health Research HUB. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.”