People First,

1994,

Reviewed by Val Williams,
Norah Fry Research Centre,
University of Bristol

Methodology

This was a remarkable, and much cited, project that represents probably one of the first times that an organisation of people with learning disabilities set out to do its own research, and enlisted its own support. They initiated, planned and carried out a service evaluation of two London boroughs, with the main part of the work being undertaken by two People First members (Alice Etherington and Brian Stocker), with support from Andrea Whittaker at the Kings Fund Centre. The research set out particularly to compare the lives of people who still lived in hospital with those living in the community, and to investigate strategies for re-settling people into the community. It also concerned itself with the quality of life of people who already lived in group homes or 'host families' in the community.

The research was grounded in the views and experiences of People First members who themselves had lived in hospitals, and the team took care to pilot and develop their questions by discussion with self-advocacy groups. The researchers interviewed 40 people (including 23 residents) in one borough, and 22 people (including 11 residents) in the other. Some deliberate sampling was carried out in the first borough, on dimensions of age, ethnicity and gender.

The researchers used 3 main methods:

• interviews based on questionnaires ('formal interviews')
• participant observation (the researchers spent time in the settings they were evaluating)
• Group discussions

The majority of the findings are direct reports of the data from the first 2 of these activities. By their own admission, the researchers found the group discussions to be less useful in producing reliable answers from people.

Explicit criteria for evaluation were set, based on O'Brien & Tyne's (1981) 5 accomplishments.

Some insight is gleaned from the report about the process of doing the research. For instance, Andrea Whittaker writes one short piece in the section of the report entitled 'How we did it', in which she explains that her role was to facilitate and organise, but 'without intruding my own ideas or opinions' (p. 16). In this, she was a pioneer research supporter, echoed by many who were to come after her.

There are also interesting comments from the 2 'People First' researchers about how they felt about doing research in hospitals, day centres or hostels. They often had to grapple with issues to do with their own identity, and they discuss the tension between being a researcher and being 'taken for' a service user. However, they also note the advantages of user-led research, in that people with learning disabilities will be able to approach others as peers:

' We are just like them. They listen to us more. We understand how they feel. ' (p. 18).

Critical appraisal

As user-led research, this work was ground breaking. The self-advocacy group initiated the research, and was in control of the study: in those respects, it fulfilled many of the criteria for Oliver's (1992) 'emancipatory research'.

However, unlike the emancipatory research agenda, this project was quite consciously an evaluation of services, and used frameworks of quality (the Five Accomplishments) that were very much part of the service culture of the time. To that extent, it was a product of its time. It did not set out to address issues of social barriers in any explicit sense, or to question the existence of service support.

The report of the study is presented in 3 main parts – a full report, a simple summary and a report on the process ('How we did it'). In all these parts, considerable detail is given about how the methodology was developed, how questions were discussed and changed, and how the material was analysed, and so in these respects the study was very rigorous. Interestingly, there is not perhaps as much difference between the full report and the simple summary as one would expect; both are presented on an issue-by-issue, site-by-site basis. Given more time, the full report could perhaps have spent more time on reflection and discussion of the issues.

The questionnaires used in the interviews are revealing. Most of them are simple and structured with yes/no/don't know response boxes, and are presented in accessible formats. There was then a space to record comments (in writing). Given the evident pains the research team went to in this respect, it would be good to have perhaps more of the raw data presented in tables, to give a summary overview. It is also hard to tell from the report how much conversation ensued in the interviews, given the extremely structured nature of the questions. However, these issues are really about the way the report is presented, and no doubt the team was constrained by having to undertake a massive amount of complex work within an extremely limited time-scale (one year).

The report itself is based on a qualitative analysis. The 2 'People First' researchers looked at comments made by their interviewees, and then added their own reactions to each issue. Given that the qualitative data inform the findings in this way, it would perhaps have been useful to tape-record interviews. However, the reactions of the two People First researchers to the data, which are given in full, add considerably to the relevance and validity of this study. They understand the experiences of their interviewees, and make comments that come directly from the 'user's point of view'. For instance, both researchers pick out the importance of having one's own key to the door, and of learning skills. They also record their own reactions to places such as group homes or day centres.

Evaluating services which have direct significance in one's own life may be prone to bias; in this case, however, the researchers were merely drawing on their own experience (they were not service users of the services they researched), and they visited enough sites (at least nine) to make comparisons between them and become informed observers. Because the study is transparent about the criteria for evaluation, the conclusions appear to be reliable and valid for the two areas evaluated. However, in many respects, the findings could also be generalised, and contain useful insights and recommendations for other areas.

Key findings

Not everyone leaving a long-stay hospital actually wants to leave; generally people were not given this choice. However, on the whole, life in the community scored more highly than the hospital on the criteria of choice, skills, relationships and respect.

Some positive strategies for preparing residents for the move from hospital were highlighted (e.g. visits to new homes, and ex-hospital residents visiting and talking about their new life).

Residents were never given any real choice about where they were going to move to. Thus, if they did not like their new home, their only choice was to move back to hospital.

Inclusion in the community was not automatic, simply because of the move into community based homes. Living with a family was in fact more effective in terms of 'getting to know the neighbours', whereas living in a group home scored much more highly on choices about food, choosing a doctor and having one's own door keys.

Social work practice implications

The recommendations made by the researchers were:

• Staff should spend more time with people who can't communicate well.
• Services need to do much more to get people friends.
• Services should help people get to know their neighbours.
• People should be helped to go to college and evening classes.
• Group homes should be used more than host families.
• Some people who need more help can benefit from host families.
• Everyone should have their own door key.
• Services should help people to see their own families more.
• People need to learn how to deal with negative reactions from the public.
• People still living in hospital should have the opportunity to go out on their own.
• A separate evaluation of services to people from black and minority ethnic groups is needed.
• A separate evaluation of involvement of people in their services is needed.
• People with learning difficulties should be involved in training staff.
• More evaluations led by service users are needed.

Policy implications

This evaluation was extremely important in demonstrating that service users could have useful things to say about the way that services are organised. It led the way for many local changes, where increasingly, residents were asked to take part in thinking about their own services. It also provided a useful set of guidelines for setting up and developing community living options, and contributed many useful recommendations, such as the necessity for:

• autonomy and privacy (having one's own key)
• support for development of friendships in the local community
• choices over every aspect of one's life
• involvement through residents' committees.

The significance of this study goes beyond its original brief. Movements to involve users more actively within their own services can be traced back at least partly to this work, and it is to these movements that we now owe developments such as, user involvement in choosing staff and lay assessors of services such as group homes.

Implications for participatory methodology

From the point of view of establishing user-led research, this project had major policy implications, suggesting strongly that:

• research that is genuinely led by people with learning disabilities is in fact possible, given the right support.
• work such as this takes time, effort and energy and must be appropriately funded.
• those who plan and provide services can do no better than to listen to users and user-evaluators.

References

O'Brien, J. and Tyne , A. (1981) The Principle of Normalisation: a foundation for effective services. London : The Campaign for Mentally Handicapped People.

Oliver, M. (1992) Changing the social relations of research production? Disability, Handicap & Society 7 (2): 101-114