SCIE Practice guide 11: The participation of adult service users, including older people, in developing social care

Meaning and importance of participation - Outcomes of participation

Service user participation has resulted in a number of positive outcomes. By outcomes, we mean evidence that service user participation has had an impact upon service users themselves, the organisation itself, and what the organisation does.

Benefits for individuals and communities

• For individual service users, the benefits of participation may include increased confidence and self-esteem, the chance to acquire new skills, and improved material resources if, for example it helps them to acquire paid employment (Attree, 2004).
• This is not to imply that these aspects were absent from their lives beforehand, rather that some service users feel that they have been improved.
• Participation leads to greater satisfaction (Department of Health & Farrell, 2004) and improved quality of life (Wallerstein, 2006). For instance, older people (Bull et al., 2000), mental health service users (Carpenter et al., 2004), and people with disabilities (Hagglund et al., 2004), who have had greater control in decisions about the support they receive, report greater satisfaction and better health than those who have not.
• Beyond benefits to the individual, the participation process may also help create a stronger sense of community (Barnes, 2005; Collins, 2004; Wallerstein, 2006).
  

Changes to services

• Service user participation can be used to make improvements to services.

• Service users are more willing to participate when they feel confident that participation will result in definite changes (Beresford et al., 2005).
• By contrast, where changes are not made or where service users are not informed of the changes, they may feel that there is little point in participation. This is often termed 'consultation fatigue’ (Butt & O'Neil, 2004).
• More could also be done on ensuring that service users are involved in all aspects of service delivery in that, for example it is easier to find examples of service user involvement in recruitment and selection than in service evaluations (Diamond et al., 2003).

Generation of new knowledge

• In reality, service users have always had knowledge; what is different is that there are now formal expressions of interest in it (Beresford, 2000).
• Service users have a particular role to play in the production of knowledge for health and social care because of the experiential nature of their knowledge and through their position as 'experts in their own experience’ (Branfield & Beresford, 2006).
• Examples where service user knowledge has contributed substantially include:
  • challenging and improving traditional ideas about research (Fisher, 2002; Glasby & Beresford, 2006);
  • social work theory (Beresford, 2000; Beresford & Croft, 2004; Beresford & Evans, 1999; Wilson & Beresford, 2000);
  • new ideas about citizenship (Beresford, 2005a; Morris, 2005).
• Research projects are increasingly based upon partnerships with service users and these collaborations bring strong benefits in terms of creating new knowledge, but care must be taken to avoid exploitation or reinforce power differentials (Miller et al., 2006; Reed et al., 2004b; Smith, 2004; Reed et al., 2004b; Rose, 2003). 
• Many service users and service user organisations feel that service user knowledge is still not valued sufficiently, thus denying policymakers, practitioners and researchers a key source of information and evidence (Branfield & Beresford, 2006).