Research involving people who use services
There has been a drive to make social care research more inclusive, on the principle that service users and carers should be actively involved in the research process as well as making their views heard. NVOLVE,part of the National Institute for Health Research (NIHR), promotes public participation in all stages of the research process in health, public health and social care. Shaping Our Lives,an independent user-controlled organisation, think-tank and network, began as a research project to provide service user definitions and new thinking about outcomes and outcome measurement (Turner 1998). Active involvement of people who use services should be considered for all forms of research. For example, Rutter et al. (2010) argue that service users should be fully involved in the production of systematic reviews.
Here we focus on some of the ways social work and social care research can and should involve people who use services. For the purpose of this discussion, people who give care and support are included as service users instead of being discussed separately.
The partnership between practitioner and service user is at the heart of social work and social care and needs to be situated also at heart of its research. As Louise Hardwick and Aidan Worsley (2011: 53) put it:
As social workers who are engaged in research, it is clearly important that service users are involved: we feel this on an instinctive level. It is critical that social workers stay in touch with the grassroots experience of service users and equally it is essential that the research that they engage in is meaningful and relevant to those lives and experiences.
Many people who study or work in social care may also be (or have been) service users and carers. If you are one of them, have you ever been asked to take part in a research project? Would you like to? What would be the purposes, for you, in taking part?
If you are not a service user or carer, imagine that you are. Would you want to engage in this way? What might you achieve? To what extent would you like to be involved?
There are different perspectives on where the momentum for service user involvement in research comes from. There is both a push from the 'bottom up' and the 'top down' for this, and not all organisations fit neatly into one or other category. From the top down, government bodies have encouraged service user involvement since it is seen to provide effective guidance on the ability, processes and popularity of services. This is a consumerist approach to i nvolvement (Ferguson 2008: 73). Beresford (2002: 96) comments on the paternalistic nature of this, and the 'rhetorical emphasis on the "active citizen" that underpins it'. The bottom-up approach is more radical since it comes directly from service users, and is a 'democratic approach ... particularly linked with organisations and movements of disabled people and social care service users' (Beresford 2002: 97). This movement has a more political and social agenda, promoting independence, autonomy and control over participants' lives. Organisations such as SCIE, INVOLVE and NIHR have strong commitments to the value of service user involvement and control in research. For instance, the NIHR website states that 'Involving patients and members of the public in research can lead to better research, clearer outcomes, and faster uptake of new evidence'.
Service user involvement can be 'user controlled' , indicating that it is 'actively controlled, directed and managed by service users and their service user organisations' (INVOLVE 2011). Users therefore decide what should be researched and act as commissioners, taking a lead or participating in the planning, the data collection, the analysis and the writing up of the research, as well as taking part in activities to promote the findings. Equally, their involvement may be in one or more stages as participants or advisers to the project. An example of an organisation which supports user-controlled research is Folk.us. It has a research award scheme for research led by service users. It uses the term 'service user, patient or carer-led research'
Turner and Beresford (2005) identified four agreed aims of user-controlled research:
- empowering service users and improving their lives through empowerment
- actively taking part in political and social change
- equal relations within the production of research
- being based in a social model and using a social interpretation of the world.
An example of the way that researchers can use their 'expert' knowledge to disempower those with whom they engage in research comes from an early piece of research commissioned in the 1960s by residents in a home for people with physical impairments. They wanted the researchers to find out if they could live independently. The researchers, however, did not involve the residents fully in the research, and concluded that they could not live independently. As Beresford (2003) comments:
In their influential study, the researchers discussed at length their efforts to conduct 'balanced', 'detached' and scientific research. They rejected disabled residents' wish for more independence and autonomy as 'unrealistic' and explained that the psychological problems of 'cripples' and 'incurables' were the inevitable result of being disabled.
The residents did not accept these findings. They took matters into their own hands, setting up the Hampshire Coalition of Disabled People and pressuring Hampshire County Council into an early form of direct payments so that they could live independently.
For some good examples of user-controlled research, see INVOLVE's
Changing our worlds: examples of user-controlled research in action.(see reference list for Faulkne.A)
In research, service user involvement helps to lead research practice away from a tendency to 'do' research 'on' groups or individuals. Oliver (1992) suggests that 'doing' research in this way is a form of 'alienation' through the research process in which the researcher expresses their power in relation to service users. The commitment to emancipatory and/or participatory research within the field of social care makes it paradoxical to view participants as 'subjects', implying an unequal power relation and an objectification of those whose views or information is sought.
As the INVOLVE website says, the involvement of the public in research is about 'research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them'. Members of the more formal research community are also service users and use their experience and knowledge in their research In participatory research, researchers and researched should have an equal weighting in the processes, including the knowledge claims made as a result of that research.
INVOLVE's 'Turning the pyramid upside down' (Blackburn et al 2012) gives five examples of research undertaken with service users. This is a publication commissioned by INVOLVE from the NIHR, which gives five examples of research undertaken with service users.
Read through two of the examples - your choice.
Reflect on the following things (you may wish to write things down!)
- In what ways are service users involved in each study?
- hat are the similarities between the research examples and what are the differences?
- How do academic or practitioner researchers approach their work with service user researchers?
- What was the balance between the perspectives of service users and other sorts of researchers in the reports?
- Which ethics and values do you find evidence of in these reports?