Symposium 5 User and carer engagement in research: Potential, intentions and opportunities

Symposium lead and chair:
Sue Read, Senior Lecturer, School of Nursing and MIdwifery, Keele University, School of Nursing and Midwifery, Keele University, Stoke on Trent, United Kingdom s.c.read@nur.keele.ac.uk

Symposia focus:

The research governance framework (Department of Health, 2001) recommends that service user views should be included in the design, conduct, analysis and reporting of health and social research. Frameworks, policies and researchers alike recognise and continue to drive the need for, and promote the importance of, the involvement of users and carers in health and social research. However, the practical and philosophical realities of doing so can be compounded by a variety of obvious and erroneous factors, particularly if the consumers involved are dis-empowered, marginalized, stereotyped groups who become vulnerable as a result of the duality of their health status.

The aim of this symposium is to explore the experiences of researchers who are currently working with users and carers as part of their particular research focus / expertise in health and social care. It will bring together five colleagues from within the School of Nursing & Midwifery, Keele University (Sue Ashby, Mike Gibbs, Sian Maslin-Prothero, Sue Read, Judy Thorley), Patsy Corcoran (an advocacy project worker from REACH, North Staffordshire) and two users of services (a person with an intellectual disability and an older person). Four papers of the symposia will introduce the potential and intentions for the inclusion of user and carer involvement from a variety of perspectives including older people; carers of people with intellectual disability; student nurses; and adults with intellectual disability.

Finally, Professor Sian Maslin-Prothero will present a positional paper highlighting the overall challenges of engaging with users and carers within the research process and look to the future potential for future research and genuine involvement. Sue Read will chair the symposium, and present a joint paper with an advocate, and a person with an intellectual disability.

Abstract 1: ‘I’ll tell you what I want, what I really, really want’

Sue Ashby, Lecturer, Keele University, & one of the older people from the research project

Background:

This paper unites the key learning following older people involvement as active members of a research steering group evaluating and developing interprofessional working among health and social care staff working in intermediate care (DoH 2006; Maslin-Prothero et al 2007).

Aim:

The aim of involving older people at this level was to ensure the research study was directed, guided and informed by their experiences, needs and choices as service users. Methods This included a virtual meeting environment, supported by additional meetings, to enable full participation by all (Ashby et al 2007). The early stages of the study identified that learning was a two way process. As the service users developed their knowledge of intermediate care and the stages of the research, academics and practitioners gained valuable insight to these alternative perspectives.

Results:

The data includes health and social care staff evaluation of training and experiences in team working and communication from a professional and interprofessional perspective, and provides a picture of how intermediate care is being delivered across the United Kingdom. On completion of the research the older people on the steering group acknowledged the importance of preparation, support and training - in particular expert facilitation, in order that their involvement is full and meaningful. The older people say the key to effective interprofessional working is communication; and this paper focuses on what they mean by this. The involvement of service users, as steering group members for the research emphasised the significance of how health and social care professionals can work together to provide a person centred approach when delivering intermediate care. Their contribution demonstrated the importance of ensuring service user perspective is sought, fostered and maintained throughout the research process including evaluation and dissemination of findings.

References:

Ashby, S., Maslin-Prothero, S., Rout, A. (2007) Involving clients and their carers as equal partners on a project using electronic communication. (In press), Annals of the New York Academy of Sciences
Department of Health. (2006) A New Ambition for Old Age.- Next Steps in Implementing the National Service Framework for Older People. London: Department of Health
Maslin-Prothero S, Ashby S, Rout A (2007) Using an action learning research approach to evaluate and develop interprofessional working among health and social care staff, particularly in relation to the care of older people.Final Reprot. Keele: Keele University

Abstract 2: Caring for an adult with intellectual disabilities and mental health needs: the parent’s perspective and their involvement in research activity

Mike Gibbs, Lecturer in Nursing, University of Keele, Keele, UK

Background:

Maes et al (2003) state that for the moment, little is known about the family situation and that parents consider the psychiatric problems of their charge to be an extra burden. Therefore, this paper introduces a research pilot study that examines the lived experiences of carers who are caring for an adult at home both with learning disabilities and a diagnosed mental health condition. The paper will discuss the rationale for the study and explore how interpretative phenomenological analysis can be used to discover how these carers express their emotions and respond to their responsibilities of care. The process and difficulties experienced when identifying and selecting participants and results to date will be discussed. The paper will also identify the challenges of accessing such a small population, the role of the researcher when working with consumers and the consumer’s role with in the research process and the service user in-put in developing the data collection method. Finally the paper will discuss ways in which carers can offer a valuable contribution to the research process without creating more demands on their lifestyle.

Objectives:

To report on preliminary findings of interviews Recognition of the impact of mental health in learning disabilities on the carers well being. Discuss the constructive role of consumers/service users in the research process Identify initial thoughts on future involvement of service users in data collection methods.

Methods:

Interpretative Phenomenological Analysis (Smith, et al 1999)

References:

Maes B, Broekman TG, Došen A et al 2003 Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research. 47(6) 447-455
Smith JA, Jarman M, Osborn M 1999 Doing interpretive phenomenological analysis. In: Murry M, Chamberlain K (eds) Qualitative health psychology: Theories and Methods (P.218-241) London. Sage

Abstract 3: ‘The future: expectations, opportunities and hope’

Sian Maslin-Prothero, Professor of Nursing, Keele University, Keele, UK

Introduction:

These diverse papers have illustrated how key health care policy documents regarding service user and carer involvement from the last 15 years have been interpreted and embedded in education, practice and research. The individual papers illustrate the different approaches taken to include people who access services – wherever these services are located (such as the community, health facilities, education). Learning To ensure full engagement there needs to be: true partnership, collaboration, representation, investment, evaluation, learning (on all sides) and dissemination. The key to moving forward is preparation of individuals and groups, through meaningful engagement, support and training for all concerned such as service users, carers, staff and students. All the papers have demonstrated the importance of expert facilitation in order that people are fully prepared, involved and engaged. We must not be afraid of peoples voices and what they say about us and our services; it may include a critique, which can be used for shared learning – Stockhausen (2007) refers to this as an experience broker. The future In order that we truly engage we must be: strategic, involve service users from the beginning (not an add on), be collegial, and not be afraid to acknowledge challenges and barriers and work together to address any issues or concerns. We have to acknowledge and pay people for their contribution, ensuring that they are treated the same as other contributors (eg lecturers, researchers etc); in the United Kingdom this is still a huge and unresolved issue.

Conclusion:

We genuinely believe that it is important to involve clients and carers in the planning & delivery of education, research and practice because they can guide and make sure we include their vision and perspective when delivering services, whatever these are. We acknowledge that there is not one model of involving the public, but many.

References:

Stockhausen L (2007) ‘The patient as experience broker’ The Nurse Education Tomorrow (NET) 2007 Conference. 4-6 September 2007, Fitzwilliam College, University of Cambridge

Abstract 4: Focus groups with people with intellectual disabilities: Preparation and communication for involving people

Sue Read, Senior Lecturer, Keele University, Patsy Corcoran, REACH, & Carl West

Background:

People with intellectual disabilities (ID) are increasingly being involved in research, but sometimes professionals fail to address the inherent needs of this population. As part of a research study to explore what adults with intellectual disabilities understand about loss, death and dying, a series of focus groups (N=12) were established within North Staffordshire and Cardiff, U.K. The researcher worked closely with a REACH, self-advocacy project worker in North Staffordshire. to ensure that the focus groups were conducted in a way that was meaningful to the participants.

Aim:

To encourage researchers to consider the needs of the population under study when conducting research with potentially vulnerable groups.

Methods:

Specifically this paper will introduce the rationale for the study, identify methods used; explore issues surrounding the planning, preparation and conduction of the focus groups; identify communication tools to aid this process; and finally hear personal reflections on the experiences using a video diary and hearing from a participant with an intellectual disability.

Discussion:

Conducting research involving individuals who have varied and complex needs can be fraught with difficulties. Working collaboratively with others may help the researcher to identify and anticipate potential challenges. A by-product of conducting the primary research was the importance of collaborative working to enhance and promote participant engagement and ensure that the focus groups were conducted in a meaningful way. Such collaborative working is crucial if people with ID are to be actively involved in research that will support the development of knowledge in health and social care policy and practice, the ultimate outcome being to make a difference to the lives and lifestyles of people with intellectual disabilities.

Abstract 5: Students as consumers: learning from people with intellectual disabilities.

Judy Thorley, Lecturer in Nursing, Keele University

Background:

There is an increasing focus on the involvement of service users in the development and delivery of nurse education. Driven by government initiatives (DoH 2000) nurse educationalists are creating opportunities for active involvement of service users in all aspects of healthcare delivery: listening to, and hearing, what people with intellectual disabilities say in order to provide the experience and theory necessary to produce nurses who live up to expectations. One learning disability teaching team in the UK have been considering new ways and opportunities to involve service users and students in the delivery and management of the curriculum. The teaching staff used Kolbs (1984) cycle of reflection to explore the students learning experience.

Aims:

To provide a detailed account of the inherent process; to explore the students experiences; to identify the reflections of students and future directions for students, service users and service providers; and to provide recommendations for future initiatives for both student learning alongside service user involvement in nurse education.

Methods:

Kolbs (1984) cycle of reflection was used as a qualitative tool to explore the students learning experience.

Results:

Felce et (1994) highlight that for change to happen all key stakeholders, and in particular people with intellectual disability, need to work in partnership and the students nurses recognised the value of this. Themes emerging from the students perspective were team building skills; different styles of communication; organisational skills; project management; networking; evidence based practice; interpretation of research; and the value of involving and working alongside service users who have an intellectual disability. Clearly this triadic learning experience enabled students to support and learn from people with intellectual disability and in turn help educationalists to learn from their experiences to support a developing curriculum in a positive way. Ultimately to make a difference to future care delivery.

References:

Department of Health 2000 The NHS Plan. HMSO, London Felce D Grant G Todd S, Et al 1998 Towards a full life: Researching policy innovation for people with learning disabilities. Butterworth- Heinemann, Oxford. Kolb D A 1984 Experiential Learning: experience as the source of learning and development New Jersey: Prentice-Hall