Developing partnerships for research: Training workshops for service users, carers workers and researchers

We will report on the development and evaluation of a series of five ESRC funded workshops designed to explore and develop collaborative working in mental health research. Through the workshops we aimed to provide participants with an introduction to the research cycle, and to explore meaningful ways of service users, carers, and researchers working in partnership in research. Participants included users of mental health services, carers and mental health workers, with many having experience of more than one of these roles. The workshops were developed and facilitated by researchers from the University of Leeds, along with Alison Faulkner, a research consultant and trainer from a user/survivor perspective and Public Involvement Staff from the Leeds Mental Health Trust. Each workshop presented a different aspect of the research cycle: identifying a research question, research methodology, analysing results, dissemination and implementation of change. At each of the workshops we had a talk from external speakers who were service users or carers. They provided real life examples of research partnership in action. Workshop participants and organisers will report on their experiences of working together at the workshops and on the collaborative working that has arisen as a result




Trials, tribulations and joys of co-researching with young service users

The paper is based on part of the experience of undertaking a national evaluation of the NSPCC’s Young People’s Centres (YPC’s) using young people as co-researchers. The NSPCC were keen to put young people, as consumers of services, at the heart of the YPC initiative and this research by young people was to evaluate how far this goal had been achieved. The young people were recruited from two of the YPC’s and following some group development work undertook an intensive long weekend’s course developing the research instruments – staff and young person’s semi-structured questionnaire, focus group questions and mystery shopper exercise. The young people have now completed the research including contributing to the report and organising a conference to disseminate the findings. Young service users have thus been at the heart of the research from the beginning to the end. (By the time of the conference the full report should be available on the NSPCC website)

The paper will focus on the some of the issues and reality in undertaking research with young service users. In particular I will highlight ethical problems e.g. ? the issue of informed consent; power issues e.g. ?young people interviewing professionals; gender issues and practical problems. I will also identify some of the strengths and weaknesses of such an approach sharing some of the lessons I have learned form this very educative experience!




Fairytales and failures – lessons from the ‘Collaborative Research Project’: Service users, nurses and researchers working together

The ‘Collaborative Project’ carried out a UK survey of researchers, to explore the topic and nature of collaborative research. 37 projects were categorised and invited to participate in follow-up telephone interviews. This qualitative data revealed the nature and extent of collaboration as experienced by those ‘professional’ and ‘service user’ researchers involved.

This presentation will draw on research data from the survey, telephone interviews of both; and from analysis of reflective conversations between the original co-researchers AH and JJ.

This presentation will cover the conference theme of ‘undertaking research’. The current co-researchers (AH and AJ) have experienced a range of organisational and personal issues that have impacted on the process and product of collaborative research, despite our best intentions. The organisational issues are around the original researcher leaving, an extended time-lapse between stages of the project, inadequate support for the service user researcher (AH) and issues of ‘uncertainty’ in the process. However, this two-year project has provided us with many rich insights into the reality of the collaborative endeavour.

The issues we want to raise for discussion are to what extent are the successes of collaborative research fairytales’? And how best can we make sense of the perceived failures’ ?




Older people: Doing research for ourselves

The paper will provide an overview of an innovative project, ‘The Older People’s Project Support’ study (OPPS) which aims to develop a model of older people’s involvement in their own research. The emphasis of the paper will be on Older People’s Forums’ involvement in their own research projects.

The paper will be structured as follows:

(i) Introductions

(ii) Background to the OPPS research project including the ethos and approach of the project which is designed to empower Older People Forum’s by enabling them to identify their own research topics, plan and develop their own research, and disseminate their own research findings / reports

(iii) Methodology of the project, mainly based on the older people’s overview of studies that they have undertaken themselves as part of the project (including an account of their experiences)

(iv) Conclusions as a summary that will emphasise the challenges of, and lessons learnt by, older people’s involvement in research

The OPPS project is a model of best practice which aims to embed the principles of public involvement in a holistic and meaningful way. Older People’s Forums have been given the opportunity to identify their own research topics, commission their own research while planning, developing and delivering their research.




Communicating research findings to those who may use the research

The aim of this workshop is to help participants work out how to get their messages about research across to many different service users, policy makers and providers. The workshop will consist of interactive group work, and practical exercises about information and accessibility. We will address the theme of dissemination, by considering the following questions:

1. Who needs to know about research?

2. What do they need to know?

3. How can we best communicate with them?

We will draw on several examples from our own practice, including Plain Facts, and a recent employment project that included mini-workshops with organisations of disabled people, to disseminate and discuss the research findings.

Participants in this workshop will:

a) Consider why it is important to get their message to the right people

b) Practice making information about research easier to understand.

c) Work out some practical ways to keep service users involved in the research cycle




“No – You don’t know how we feel” – Getting the message across: young people, facing the life-threatening illness of a parent, make their voices heard

The Video Project was a collaborative inquiry with 9 young people, facing the serious illness of a parent, to discover their views and needs, through the making of a video. The film was aimed not at professionals but at families in a similar situation and its aim was to improve the way children are supported in the face of the possible death of a parent.

The paper will specifically address the way in which our collaborative inquiry has attempted to disseminate its findings: the obstacles we have encountered in involving children ( ie non-academics, non-adults) in dissemination; the advantages and disadvantages of video as a medium for dissemination; And the challenges facing implementation of the findings.

Issues that will be raised for discussion will include:‑

Ethical issues in involving children in presentations, conferences

Challenging the adult and academically oriented nature of research dissemination

Limitations and advantages of collaborative inquiry

The rights of children, with reference to UN Declaration of Rights of the Child, and The Children Act 1989

Can the camera lie? – the use of video in research




Talking it through: involving people with communication difficulties in research

This paper describes an ethnographic research project that documented the social exclusion of people with severe aphasia (a communication disability that commonly follows stroke). Our project was intended to be as inclusive as possible of the people it was about, and was monitored by an advisory group comprising people with aphasia, some with very marked communication difficulties.

This paper focuses on the dissemination and implementation stages of the project. It explores some of the challenges, tensions and paradoxes raised in research that seeks to be inclusive of those people with aphasia it is about – particularly when language, the medium of research, is compromised. We describe the collaborative process of writing an accessible report on the project, and consider how this compares with the standard report.

We consider the power and potential of ethnographic stories from the project as the basis for dissemination to a wide audience, and training for health, social care and voluntary service providers. We ask whether and how people with communication disabilities can play an authentic part in research and outline some of the lessons we have learned in this endeavour.




Evaluation of consumer involvement in the London Primary Care Studies Programme

The paper will describe the ongoing evaluation of 11 projects funded in London as part of the Primary Care Studies Programme. Although diverse in their subject matter, each project had some degree of consumer involvement, and was supported by a continuing training programme in consumer involvement. Our task is to evaluate the effect of the training on the way in which consumers were involved in each project, and to see what effect consumer involvement had on the research itself, for example in terms of its design, how it was implemented, and the outcome measures that were used.

We will address the conference theme of monitoring and evaluating by describing the ways in which we are carrying out this evaluation and the challenges that the research process has presented. The issues we will raise for discussion include: how to identify the issues of potential relevance for future projects and trainers working with them, and how we can work towards developing criteria for assessing the level and degree and success of consumer involvement in research studies and its potential impact on outcomes.