Tetley and Hanson (2000) suggest that a definition of participatory research ‘remains elusive’. However, for the purpose of this chapter, it will be defined as a continuum of research approaches which recognise that, traditionally, some groups of people have tended to be marginalised and powerless within the research process and that this can be oppressive. In order to change such a situation participatory research thus seeks to promote and facilitate the active involvement of such groups (often referred to as ‘the community’) at all stages of the research process. It is concerned with both changing power relations within the research process and with producing knowledge which can be used to bring about wider change and transformation. Action and education are integral parts of participatory research.

The origins of participatory research are said to lie in Tanzania in the 1970s (Hall 1992) and the first meeting of the International Participatory Research Network produced a definition of such research (Hall & Kidd 1978) emphasising its focus on promoting the active participation of powerless groups at all stages of the research process. The term participatory action research is also sometimes used but whilst Park (1999) acknowledges that this may be a more accurate reflection of the action component of participatory research, it can lead to some confusion with action research in which a professional researcher directs the research. Khanlou and Peter (2005) argue that action research and participatory research differ in terms of ideological beliefs, the training of researchers, and the context in which they work. The former is grounded in clinical and social psychology and management theory whereas the latter is usually undertaken by community organisers and adult educators, being informed by sociology, economics and political science (Khanlou & Peter 2005).

A further term encountered is ‘emancipatory research’. Such terminology is often found in the disability literature where some authors (such as Stalker 1998) argue that participatory and emancipatory research are used interchangeably. Others (e.g. Chappell 2000) draw a clear distinction, arguing that whilst participatory research aims to increase the participation of disabled people, emancipatory research transforms the material and social relations of research such that disabled people control all aspects of the research process. Yet other authors (e.g. Beresford 2005, Finn 1994 and Northway 2003) argue that participatory research is best viewed as a continuum in which there are increasing levels of participation on the part of those who have traditionally held less powerful positions and in which they are enabled to take control over the research process. INVOLVE (2004) suggest that on such a continuum a distinction can be made between user consultation, collaboration and control. In this chapter, the term ‘participatory research’ will be used as an umbrella term for a range of research approaches which seek to shift control from powerful to less powerful groups within the research process by consultation, collaboration and facilitating control.

Whilst traditional approaches to analysing participation have tended to concentrate on the level of involvement (as above), the focus has now shifted to include examination of the ‘ideological underpinnings’ of the differing approaches to participation (Beresford 2005). The driving forces for increased participation of marginalised groups in research can broadly be labelled ‘top down’ (policy driven) and ‘bottom up’ (service user driven).

INVOLVE (2004) note that, since 1997, a range of health policy documents in the United Kingdom have emphasised the importance of public participation. In addition, some research funders stress the importance of service user involvement. Ross et al (2005) thus note that the drive for consumer involvement in their project came from both policy and the research commissioning process. Service user pressure for increased participation in, and control over, research can be seen from the disability movement in the United Kingdom, who have criticised the negative and oppressive nature of much disability research (see, for example, Oliver 1992) and who have called for control of the research process to lie with disabled people themselves.

It is evident, however, that these two dimensions of participatory research both need to be considered (Fig. 3.1) since the primary motivation for undertaking a project may be to respond to policy but the outcome of the research may be to devolve maximum control to service users. Alternatively the impetus for research may arise from a service user group but they may not wish for full participation or control at every stage of the project. Furthermore, the level and nature of participation may vary from stage to stage.

Some authors (such as Soltis-Jarrett 2004) suggest that participatory research is a qualitative approach whilst others (such as Macaulay et al 1999) argue that it can be both quantitative and qualitative. Seng (1998) thus states that participatory research cannot be recognised as ‘one particular method or design’. Instead it is more helpful to view it in terms of how the research should be conducted rather than in terms of data collection techniques (Henderson 1995) since it addresses how the research process should proceed (Huang & Wang 2005). Four key features (Box 3.1) will be discussed.