Research highlighting the benefits of user and carer involvement in education (Speers, 2008; Frisby, 2001; Wood & Wilson-Barnett, 1999), has indicated increased empathy and improved communication skills, greater understanding of care impact, and positive attitudinal changes amongst participants: thus grounding the ‘...curricula in the reality of the human experience’ (Flannagan, 1999:110, cited in Read & Maslin-Prothero, in press). There is a wealth of literature that offers useful examples (e.g., Fox et al., 2007) that highlights numerous associated challenges of service user and carer involvement (McKeown et al, 2010) in health and social care. Such research includes marginalized groups such as people with mental health issues (Lowes & Hulatt, 2005), people with an intellectual/ learning disability (Williams & England, 2005; Read & Corcoran, 2009), older people (Tetley et al., 2003), physical ill health (Richardson et al, 2008) and end of life care (James, Andershed, & Ternestedt, 2009). However, the challenges of involving users and carers as true partners in health and social care remains difficult .
Engaging users and carers in research should involve working with people from the very beginning. Users and carers can help to identify priority research areas, which is likely to enhance any impact upon practice in a meaningful way at the end of the work. Involving appropriate people, respecting the unique experiences of individuals, using clear information, making reasonable adjustments for differentness and providing appropriate reward and recognition for the contributions made can help to ensure a successful research project that can make a real difference in practice. INVOLVE (Steele, 2004) is a UK national advisory group, funded by the National Institute for Health Research (NIHR). Its role is to support and promote active public involvement in National Health Services, public health and social care. It has an excellent leaflet that highlights good practice in actively involving users and carers in research (www.invo.org.uk).
Users and carers can offer different perspectives, ensure that research priorities are realistic and ‘fit for purpose’, and can help with disseminating results or outcomes (Steele, 2004, cited in Read & Maslin-Prother, in press). Active and equitable collaboration is crucial to service user involvement generally (Wright & Rowe,2005), and they could and should be involved in the whole continuum of research activities, including consultation, collaboration, and user control (Consumers in National Health Service Research Group, 2001). If research is the route to good practice, then researchers are going to have to become creative, proactive and flexible in the way they seek to work alongside, explain, recruit and retain participants to research studies, particularly if the participants are marginalized and potentially vulnerable (Read & Maslin-Prothero, in press). What follows is a case example from local practice that illustrates how a person from a marginalised group (i.e. a person with a learning disability) can identify topics for research, and can instigate and conduct research himself with support from others.
Keep academics on track by asking questions and clarifying points
Case study : Supporting a person with a learning disability to develop his own research
Carl was a young man with learning disabilities, who was a paid worker in a local advocacy service. Part of the work Carl did was to facilitate groups, work with health professionals to understand what it is like to have an intellectual disability, and help other individuals to speak out and express their feelings, needs and wants. Carl was recently taken ill, and was taken to hospital for emergency treatment. His experience at the hospital was not very good, and he refused some tests that could have been important to him and his long term health and wellbeing. On reflection he wished he had been patient and had tolerated the tests but they weren’t explained to him very well at the time and he was confused, uncomfortable and a little frightened. When sharing his story with other people around him, he found that their experiences of hospital were all very different and he decided to ‘find out’ about other people’s experiences and record their answers. Carl was helped to write his aim, and helped to invite people to participate in his ‘finding out’ work. He conducted his own research and eventually interviewed 12 people who had an intellectual disability and who agreed to talk with him so that he could record their experiences on paper. (Gibbs & Read, 2010:250 ).
Carl’s work was not supported by public funding; it was simply an interest that he developed from personal experiences (as is much research). However, because those advocacy support workers helping him actively listened to what he said; really heard wanted to do; saw the value in what he wanted to find out; and were able to capture his enthusiasm and curiosity, Carl was able to conduct his research study. He also had his ideas published, because he felt it was important to share his experiences with others (Gibbs & Read, 2010).
Service users and carers can bring a rich and diverse range of personal skills, knowledge and experiences that can contribute well to the research issues in health provision, complementing the expertise of the researcher (Royal College of Nursing, 2007) across the health and social care arena. Think about how service users and carers are already involved in research in your organisation. Consider what mechanisms already exist and work well; what new approaches need developing; and how might you work alongside service users and carers to develop these ideas and ensure that changes happen in a constructive way.
Help us to look at the whole picture
Involving people in research
Consumers in National Health Service Research. (2001). Getting involved in research: a guide for consumers. Eastleigh: Consumers in National Health Service Research.
Flannagan, J. (1999). Public participation in the design of educational programmes for cancer nurses: A case report. European Journal of Cancer Care, 8, 107-112.
Fox, M., Martin, P., & Green, G. (2007). Doing practitioner research. London: Sage
Frisby, R. (2001). User involvement in mental health branch education: client review presentations. Nurse Education Today, 21, 663-669.
Gibbs, M. & Read, S. (2010). Involving people with intellectual disabilities in research: Participation and emancipation. In: P.M. Roberts & H.M. Priest (Eds). Healthcare Research: a handbook for students and practitioners. London: John Wiley Publ.
James, I., Andershed, B., & Ternestedt, B. (2009). The encounter between informal and professional carer at the end of life. Qualitative Health Research, 19, 258-271.
Lowes, L., & Hulatt, I. (2005). Involving service users in health and social care research. Oxfordshire: Routledge.
McKeown, M., Mali-Shoja, L., & Downe, S. (2010). Service user and carer involvement in education for health and social care. UK: Wiley-Blackwell.
Read, S. Corcoran, P. (2009). Research: A vehicle for listening and promoting meaningful consultation with people with an intellectual disability. The British Psychological Society: Qualitative Methods in Psychology Section, 8, 29-37.
Read, S & Maslin-Prothero, S. (in press). The Involvement of Users and Carers in Health and Social Research: The Realities of Inclusion and Engagement. Journal of Qualitative Health Research.
Richardson, J., Mallen, CD, & Burrell, HS. (2008). A woman living with osteoarthritis: A case report. Cases Journal, 1, 153. doi:10.1186/1757-1626-1-153
Royal College of Nursing. (2007). User involvement in research by nurses. London: Royal College of Nursing.
Speers, J. (2008). Service user involvement in the assessment of practice competency in mental health nursing - Stakeholders views and recommendations. Nurse Education in Practice, 8(2), 112-9.
Steele, R. (ed.) (2004). Involving the public in NHS, public health and social care research: Briefing notes for researchers. Hampshire: INVOLVE.
Tetley, J., Haynes, L., Hawthorne, M., Odeyemi, J., Skinner, J., Smith, D., & Wilson, V. (2003). Older people and research partnerships. Quality in ageing, 4(4), 18-23.
Wight, C., & Rowe, N. (2005) Protecting professional identities service user involvement and occupational therapy. British Journal of Occupational Therapy, 68 (1), 45-47.
Williams, V., & England, M. (2005). Supporting people with learning difficulties to do their own research. In L Lowes, & I. Hulatt. (2005). Involving service users in health and social care research (pp.30-40).Oxfordshire: Routledge.
Wood, J., & Wilson-Barnet, J. (1999). The influence of user involvement on the learning of mental health nursing students. NT Researcher, 4(4), 257-270.