Setting up a mental health service user research group: a process paper

Abstract

It is claimed that the involvement of mental health service users in research remains fragmented, and expertise in involving service users is still developing. This paper explains how a group of mental health service users and carers formed a Research Development Group in Wales. This is a process paper which describes how the group was established and funded as part of the United Kingdom Clinical Research Networks. It explores the rationale for a Mental Health Service User and Carer Partnership Research Development Group and the challenges experienced in setting up the group, including activities such as a current research project. This project involves collaboration between group members and nurses from a local National Health Service Trust, which is helping to build research capacity. This project is used to illustrate the issues raised, and we provide critical reflections of this process. The power balances that posed challenges to a group of this type are explored and ways to overcome them are suggested. The research group is still in its infancy but has aspirations to move from being a user involvement group to a user-led group incorporating the differing viewpoints and promoting an equal contribution from its members.

Keywords

collaboration mental health nursing research process user involvement user led research

Get full access to this article

View all access options for this article.

References

Beresford

(2005) Developing the theoretical basis for service user/survivor-led research and equal involvement in research. Epidemiologia e Psichiatria Sociale 14: 1–9.

Bolton

Field

Thompson

(2006) Writing works: A resource handbook for therapeutic writing workshops and activities, London: Jessica Kingsley.

Goodwin

Happell

(2006) In our own words: Consumers’ views on the reality of consumer participation in mental health care. Contemporary Nurse 21: 4–13.

HTA (2011) Principles to guide project planning: NIHR HTA. Health Technology Assessment Programme. Available at: http://www.hta.ac.uk/ppiguidance/section1_5.shtml/ (accessed 10 February 2012).

Hunt

Sampson

(2006) Writing: Self and reflexivity, 3rd edn. Basingstoke: Palgrave.

INVOLVE (2007) The Public Information Packs: Booklet 1 – So what is it all about? Available at: http://www.invo.org.uk/posttypepublication/the-public-information-pack-pip/ (accessed 10 February 2012)..

INVOLVE (2007) The Public Information Packs: Booklet 2 – Getting Started. Available at: http://www.invo.org.uk/posttypepublication/the-public-information-pack-pip-2/ (accessed 10 February 2012).

INVOLVE (2007) The Public Information Packs: Booklet 3 – Finding out more. Available at: http://www.invo.org.uk/posttypepublication/the-public-information-pack-pip-3-finding-out-more/ (accessed 10 February 2012).

INVOLVE (2007) The Public Information Packs: Booklet 4 – Jargon Buster. NIHR. Available at: http://www.invo.org.uk/posttypepublication/pip-4-jargon-buster/ (accessed 10 February 2012).

10.

Involving People (2011) Website. Welsh Government, Cardiff. Available at: http://www.involvingpeople.org.uk/welcome/who-we-are (accessed 10 February 2012).

11.

Israel

Schulz

Parker

(2008) Critical issues in developing and following CBPR principles. In: Minkler

Wallerstein

(eds) Community Based Participatory Research for Health, 2nd edn. San Francisco: Josey Bass, pp. 47–66.

12.

Ledwith

Springett

(2010) Participatory Practice. Community Based Action for Transformative Change, Bristol: Policy Press.

13.

Mental Health Research Network (2010) What we do. NHS. Available at: http://www.mhrn.info/pages/what-we-do.html (accessed 10 February 2012.).

14.

MHRN-C (2011) Mental Health Research Network-Cymru. Available at: http://www.mhrnc.org. (accessed 10 February 2012).

15.

Minogue V and Hardy S (2007) Service user involvement in mental health training, education and research in West Yorkshire. In ALPS Research Capacity Final Report (3 of 3). Leeds: West Yorkshire Mental Health Research and Development Consortium, pp. 1--31.

16.

NIHR (2011) UK Clinical Research Network Organogram. Available at: http://www.crncc.nihr.ac.uk/Resources/NIHR%20CRN%20CC/Networks/CCRN/UK%20Networks%20Organogram.pdf (accessed 10 February 2012).

17.

Northway

(2000) Ending participatory research? Journal of Learning Disabilities 4: 27–36.

18.

Northway

(2010) Participatory research part 2: Practical considerations. International Journal of Therapy and Rehabilitation 17: 226–231.

19.

Oliver

(1998) Disability Research: Politics, Policy and Praxis, Bournemouth: University of Greenwich.

20.

Plumb

Price

Kavanaugh-Lynch

(2004) Funding community based participatory research. Journal of Interprofessional Care 18: 428–439.

21.

RCN (2007) User Involvement in Research by Nurses: RCN Guidance , London: Royal College of Nursing.

22.

Ross

Smith

Mackensie

(2004) Identifying research priorities in nursing and midwifery service delivery and organisation: A scoping study. International Journal of Nursing Studies 41: 547–558.

23.

Tait

Lester

(2005) Encouraging user involvement in mental health services. Advances in Psychiatric Treatment 11: 168–175.

24.

Turner

Beresford

(2005) User Controlled Research: Its Meanings and Potential, Brunel University: INVOLVE, pp. 1–24.

25.

Turner

Wilson

(2009/10) The First all Wales Service User and Carer Led Research Group: Part of the Mental Health Research Network Cymru (MHRN-C) , Hampshire: NIHR.

26.

WAG (2008) Stronger in Partnership 2: Involving Service Users and Carers in the Design, Planning, Delivery and Evaluation of Mental Health Services in Wales (Government WA ed.). Cardiff.

27.

Walsh

Boyle

(2009) Improving acute psychiatric hospital services according to inpatient experiences. A user-led piece of research as a means to empowerment. Issues in Mental Health Nursing 30: 31–38.

28.

Wilson

Fothergill

Rees

(2010) A potential model for the first all Wales mental health service user and carer-led research group. Journal of Psychiatric and Mental Health Nursing 17: 31–38.