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DEVELOPMENT OF TOOLS TO MEASURE SERVICE USER AND CARER SATISFACTION WITH SINGLE SHARED ASSESSMENT
CHAPTER FOUR LOCAL DEVELOPMENT GROUPS
4.1 4 Local Development Groups (LDGs) were established to work on the Toolkit. 3 of these groups were made up of service users and the fourth carers, all with experience of a broad range of community care and health.
4.2 The purpose was to involve service users and carers in developing the toolkit so that the evaluation questions reflected service users' and carers' concerns and priorities and would find out what mattered to the individual about their assessment the evaluation approaches and methods would be person centred and inclusive and address issues such as power differentials, fear of reprisals and low expectations.
4.3 The decision was made at an early stage, in consultation with the Project Steering Group, to adopt a generic or diverse approach to the composition of the LDGs rather than follow the original plan for single issue groups, i.e. each group focusing on a specific service area such as older people's or learning disability services. Membership of all the groups give as wide a coverage as possible of different perspectives and personal circumstances. We also aimed to include some people with direct experience of SSA.
4.4 The anticipated outcomes from the groups were:
(for some) of SSA and on knowledge of others' experience
Toolkit is adapted to wide range of communication and support requirements
Knowledgeable assistance to ensure that Toolkit is person centred
Members share and exchange info and generate ideas through discussion
Members gain some ownership of the Toolkit
Some members consult peers and colleagues (e.g. up to 50 service users
and 25 carers consulted by members)
Potential for information being shared with wider communities
Potential for personal and community gains through networking and exchange
Members credited with contribution.
4.5 Each group met 3 times and all groups followed the same programme of work (with some slight adjustments for the carers).
Locations
4.6 The service user groups were located in Aberdeen, Ayr and Glasgow and the Carers' Group in Dundee. Locations were selected to give a spread of geographical areas and also in response to indications of interest from key contacts and the availability of suitable accessible premises for meetings. The Dundee group attracted some participants from Fife as well as Tayside.
Recruitment, membership and participation
4.7 Service users and carers were recruited to groups through service provider agencies and some user and carer led groups. Accessible information about the groups and invitation letters were sent to contacts who agreed to pass these on to people with whom they were in contact.
4.8 Although the timescale for setting up the groups was very tight and there were only limited opportunities to target specific agencies or groups or to follow up contacts who were less well known to the project team, the overall membership of the groups was diverse, with members bringing experience of a wide range of different service areas.
4.9 Service users' personal experiences included learning disability, mental health issues, dementia, sensory impairment, homelessness, physical disability, alcohol related brain damage and communication issues. 2 people needed their support workers with them at all the meetings.
4.10 2 carers who attended the carers' group had caring responsibilities for their sons, whilst the other 3 people were the main carer for their spouses.
4.11 We were not able to include as many people from minority ethnic communities as we had intended - one group member only was from a minority ethnic community. We were also unsuccessful in recruiting large numbers of older people to groups. Older people were more likely to have had a single shared assessment, so while all group members had experience of being assessed for services, no-one had had personal experience of SSA. Recommendations to broaden consultation on the Toolkit are made in Chapter 11.
4.12 It was clear to us that considerably more time than had been allowed for was required to set up these groups in a way which involved people from more marginalised groups or for whom pace and good advance notice were particularly important.
4.13 3 people joined groups at the second meeting; project team members met with all 3 people beforehand to give information and ensure that they felt sufficiently up to date with the work and prepared - and had a familiar face to greet them at the meeting.
4.14 In order to broaden the scope of service user and carer involvement in the toolkit development, meetings were held after the LDGs had completed their work with 5 older people with recent experience of a SSA, the steering group of a local sensory impairment centre and with an individual with profound and multiple impairment and his parent. Issues regarding accessibility and applicability of the toolkit for minority community members were addressed in a different way (see section on Additional Meetings below).
Participation and attendance
4.15 A total of 30 service users took part in LDG meetings. There was a very good attendance rate with the majority of members attending all 3 meetings of their group. This was important for continuity and the development process in which the groups were engaged. In one group, there was some change of membership with 2 service users from one organisation replacing a colleague for one meeting. Only 2 service users did not return after their first meeting.
4.16 5 carers made up the carers' group: one of them was unable to attend one of the 3 meetings of the group.
4.17 All participants were reimbursed for all travel or other expenses incurred in the course of their work with the groups, including child care for 2 young parents. Lunch and refreshments were provided at all the meetings and participants were given a 'participation payment'. At the end of the cycle of meetings we wrote to thank people for their involvement and promised to write again in May to let them know about the progress of the project; we also provided a summary record of the work they had undertaken with us for their use, for example as part of a CV or job application.
Method of working
4.18 All meetings were co-facilitated by 2 and in some cases 3 members of the project team. Team members recorded as well as facilitated the meetings.
4.19 The programme for the groups began with an exploration of people's own experiences and views about assessment for services. The focus was on assessment in general, rather than on the Single Shared Assessment, as there was no experience of SSA within the membership of the groups.
4.20 It is widely recognised that assessments for services often pass unnoticed or unremembered by recipients. This can be because the process is not explained or even made explicit or because it is less important to people than the outcomes of assessment i.e. services (Ellis 1993, Bauld et al 2000). Practitioners attending one of our Workshops for Practitioners spoke of the 'syndrome of the invisible assessor'; for most people it is the person who, for example, initiates the assessment process or the referral or who delivers the service who is remembered, not the assessor.
4.21 In order to address the significant challenge of establishing the topic and overcoming the distance between the task for the groups and people's daily lives and priorities, a Forum Theatre session, directed and acted by professional theatre practitioners, was used at the first meeting for each group.
4.22 Forum Theatre is derived from Theatre of the Oppressed. Its roots are in the work of Paolo Freire and it has been widely developed as a theatrical and community development technique by Augusto Boal, a Brazilian theatre director, dramatist and teacher (see Boal, 1992).
4.23
"Forum Theatre was devised as a means for groups struggling under some form of oppression to work out and practice possible solutions to their problem, which could then be applied in real life. It is a form of workshop/performance which allows the audience to be spect
ators rather than spect
ators i.e. they can intervene to change the action of the play and, therefore, the outcome. "(Linda Duncan McLaughlin 2004).
4.24 The format was adapted for the work with Local Development Groups, by the performers, led by Linda Duncan McLaughlin. The performance was based on a SSA process with the outline script drawn from SSA forms currently in use. There was no oppressor as such and participants were encouraged to comment primarily on and improve the assessment approach.
4.25 The Forum Theatre was resoundingly successful and achieved all the aims we had for it:
it set the main concepts involved in the work in a real life context which was familiar to participants
it involved members directly in raising questions and developing ideas
everyone participated very actively from the beginning
it was an enjoyable, active and creative experience
it supported and helped to speed up the process of members getting to know each other and working together
it provided a memorable foundation of shared work and experience to build on in subsequent sessions.
4.26 We found a high degree of congruity when we drew together the interventions and comments made by participants at the 4 separate meetings. Groups had worked independently of each other but the record of the meetings revealed collective views about how assessments need to be carried out - if they are to be truly person centred and aim to discover individual's concerns, priorities and aspirations. The comments were written up as Guidelines for Assessors and are included in the Toolkit.
4.27 These guidelines apply to all assessments for community care and health services including SSA and are also relevant for the evaluation process.
4.28 In the subsequent meetings participants drew on their own experience and their knowledge of others' experience (and the Forum Theatre experience) to contribute
views about what stops people giving information when they are asked about services
ideas and good practice advice in relation to evaluation questions and approaches for the Toolkit
suggestions about how people with different communication requirements can be asked about their views.
Additional Meetings
4.29 In order to broaden the scope of service users' and carers' perspectives on the Toolkit, particularly where we had been unsuccessful in recruiting people with specific experiences (e.g. older people) and further refine the information which groups had contributed, meetings were organised with
5 older people with recent experience of a SSA
a member of a local minority ethnic community organisation who has long experience in advising health and social work on accessibility issues
the steering group of a local sensory impairment centre
a young man with profound and multiple impairment and his parent.
4.30 Through these meetings we were able
to run an initial test on the draft evaluation questions for service users and carers
to collect more detailed guidance and advice on meeting individual communication requirements for inclusion in the Toolkit (e.g. Sources and Resources)
to hear about the recent experience of one person with severe hearing impairment in relation to his SSA
to gain a deeper understanding of the experience of assessment of some members of minority communities and of cultural factors which need to be addressed specifically in the further development of the Toolkit
to take advice about some changes to the draft Toolkit which could be made immediately to make it more culturally sensitive.
Outcomes and outputs
4.31 The work of the local development groups together with the contributions made by people involved in the additional meetings provided
the framework for the evaluation questions
the content and style of questions
the priority of some questions over others .
4.32 All the questions included in the evaluation methods i.e. the postal questionnaire and interview for service users, the carers' questionnaire and the guided discussion, are based on views and suggestions made by participants.
4.33 While wider testing and consultation are essential, this development process has ensured that a significant start has been made on developing the Toolkit as a person centred evaluation resource.
4.34 The question of how to define 'satisfaction' has been tackled through asking service users and carers about what matters to them with regard to assessment for services. While no neat definition of 'satisfaction' has been generated, an extensive list of indicators has been developed. These indicators closely match research findings about user and carer outcomes (see Literature Review, Chapter 3). We believe that it should be possible, after more extensive testing, to use the indicators which are expressed in the evaluation questions and expanded in the Guidelines for Assessors, with any revisions required, to monitor the SSA and measure ' satisfaction ', from the perspective of service users and carers.
4.35 Participants in the LDG s all had experience of using health and community care services. They brought a wide range of experience and perspectives. Many participants were also in touch with wider networks of service users and carers and in contributing to the work drew on their knowledge of others' experiences and views as well as their own.
4.36 The guidelines for community care assessors (see the Toolkit) produced by the 4 development groups give explicit directions for countering power differentials between the person being assessed and the assessor. Similarly, by spelling out best practice, the guidelines encourage both the assessor and people being assessed to have higher aspirations for the process and the outcomes.
4.37 The Toolkit assumes the involvement of all service users and carers, whatever their communication, cognitive or other support requirements. The advice and guidance from service users and carers obtained through the work of the groups and the additional meetings has helped to ensure that the necessary information and guidance is included.
4.38 Feedback from participants indicated that they had valued their work in the groups. Some people had made new contacts, some were hoping to use the experience to support job applications or career moves, some people would be taking information they had collected back to their groups and communities. The diverse groups worked well and participants were clear that there were distinct benefits from this way of working (i.e. rather than in single issue groups) such as meeting new people, gaining a greater understanding of other people's perspectives and learning more about ways of addressing accessibility issues.
Summary
4.39 Key themes from work with the Local Development Groups were:
Forum Theatre proved to be a very effective medium for setting the main concepts the groups were discussing in a real life context which was familiar to all participants
the 4 groups produced similar ideas about what mattered most in the course of an assessment (the Guidelines for Assessors)
the Guidelines encapsulated the groups' definition of "satisfaction" and formed the basis for the development of the questionnaire and interview schedules
the groups were able to contribute views about what stops people giving information when they are asked about services; ideas and good practice advice in relation to evaluation questions and approaches for the Toolkit; and suggestions about how people with different communication requirements can be asked about their views.
Having groups drawn from different communities of interest proved beneficial in terms of bringing a wide range of experiences to bear on the issues and offering group members new learning opportunities
More time was needed to broaden the membership of the groups: in particular to include more people from minority ethnic communities, people with HIV/Aids
A participant in one of the additional meetings had recently had an SSA, but no group members had had one
Group members welcomed the participation payment and the record of their work in the groups as tangible signs that their contributions had been valued
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