The participation of adult service users, including older people, in developing social care
A review of existing literature on service user participation was undertaken drawing on information held in the following electronic databases:
- Social Care Online
- Sociological Abstracts
- Social Services Abstracts
Initial searches were made using subject headings and thesauri for each database. For example 'user views’ and 'user participation’ were used in searches of Social Care Online, 'users’, 'involvement’ and 'involving’ for AgeInfo, 'client participation’ in PsycINFO, and 'patient participation’ in Embase. This review was commissioned only to cover literature relating to the United Kingdom. In addition, web searches were made to identify grey literature, that is electronic and print publications produced by organisations and government departments but which is not available through commercial publishers.
A practice survey, one of SCIE’s methods for identifying details of emerging and developing practice, was undertaken to identify examples across:
- England, Wales and Northern Ireland, ranging from national organisations to local groups;
- organisations working with different groups of service users;
- statutory and voluntary organisations;
- organisations using different models of participation, ranging from those that mainly followed a consumerist model based on consultations, to those that were service user led, or service user controlled organisations.
A proforma was developed for the collection of information from each organisation. From this, examples were selected on the basis that they could demonstrate clear systems for supporting service user participation and that they provided contrasting examples of the different approaches that organisations adopt to involve service users. The practice survey, consultations with service users and the literature review all showed that consultation-based models still predominate and that service user participation is often seen as a process, rather than something which is outcome focussed, meaning that service user participation has been used to make direct changes to services. Practice examples were chosen to reflect this situation.
Consultation with service users
Shaping Our Lives and the Centre for Citizen Participation held two consultations with service users. The first was held at an accessible venue in London and was attended by 14 people with a broad range of experience of different services. This included service users from different parts of the country, living in both urban and rural settings. It included older people, people with physical and sensory impairments, mental health service users, a palliative care service user and people with speech impairments who communicate differently. A second separate smaller consultation meeting was carried out with people with learning difficulties, in order to ensure that they were fully able to express their views. Five people with learning difficulties took part. The consultation was facilitated by an experienced self-advocacy supporter. Three of the participants were women. Three people were black. The five people had different types of learning difficulty and used a range of current services, including living independently with some support and living in a residential home. All the participants had previously been involved in groups that aimed to improve services for people with learning difficulties.
Participants were provided with advance information to prepare them for the consultation meeting. Access, support, and travel costs were met and participants were paid for sharing their expertise.
Synthesising the findings
Information from the five different types of knowledge used in this guide: service user knowledge, organisational and practitioner knowledge, policy community knowledge and research knowledge (Pawson et al., 2003) was organised under the broad themes of culture, structure, practice, and review. The next stage involved identifying the themes around which there was a consensus, for example in the areas of agreement about what constitutes good practice. Then we looked at topics on which there were diverging views or where a subject had been considered by one group but not by others. For instance, service users and researchers whose research has been grounded in the expertise of service users have been more likely to emphasise the need for participation to be considered in a wider social context, such as having access to an adequate income or the opportunity to take part in everyday leisure and social activities. Finally, we identified areas where there are gaps in our knowledge or where more work needs to be done, such as how to engage more effectively with seldom heard groups.