The participation of adult service users, including older people, in developing social care

Structure

In this section:

• Dealing with barriers to participation
• Institutional and political barriers
• Economic and cultural barriers
• Technical barriers
• Action points

Summary

• Barriers that prevent participation.
• Improving structures for service user participation.
• Supporting people to participate.

Introduction

Since 2004, I have gone from being a service user to the secretary on the User Forum and now working for [the organisation] as an independent facilitator…I work for eight hours a week. I get paid for those hours, and I get my benefits on top of that. I have a team of people here who support me through everything that I do…I have four support workers. If I want to work 12 hours a day, they will support me for 12 hours a day. If I get too tired and I want to go home, I can work from home. I am supplied with an office, a computer, and a laptop. I also get a travel allowance and so does everyone else on the Forum. (Worker in voluntary organisation)

Even when an organisation is actively committed to participation, its attempts may fail if the right structures are not in place. Simmons and Birchall (2005) suggest that one way of looking at participation is to see it as a chain whereby each link must be made as strong as possible (see below).

Participation chain

(Simmons & Birchall, 2005, p278)

• The resources link stands for the resources necessary to set up the system for participation, such as providing training and advocacy schemes to help build participants' skills and resources.
• The mobilization link refers to the systems for encouraging people to participate. If people feel that the subject is relevant to their lives and is likely to result in changes, then they are more likely to want to become involved.
• People’s motivations to participate are varied. Although they sometimes think that it will bring benefits to themselves, they are more likely to see it as benefiting the wider group or community. It is important to make the participation process work with their motivations than against them.
• The dynamics link refers to the relationship between the organisation or provider and participants. Organisations must be aware of the power dynamics between them and participants, and must be honest about their own motivations.

Simmons and Birchall also argue that the chain metaphor highlights the need for all the links to be joined together as each depends upon the other. For example, there is little point in training people in participation skills without providing them with opportunities to use them.

However, there are powerful factors that act as barriers to participation, thereby weakening the participation chain. These may be grouped under the following themes:

• Personal barriers, for example the sense of personal powerlessness that stems from long-term reliance upon others and the costs of involvement to participants.
• Institutional and political barriers, for example a formal meetings culture and the use of language that does not encourage dialogue.
• Economic and cultural barriers, especially in communities where there is decline and fragmentation.
• Technical barriers such as the lack of accessible formats and technological support for groups to enable service users to participate effectively or difficulties in getting small amounts of funding for support costs. (Beresford & Hoban, 2005, pp19-21)

The next section describes the ways in which attempts have been made to try and overcome some of the barriers described above.