Include me in: user involvement in research and evaluation

Published date22 February 2013
Date22 February 2013
DOIhttps://doi.org/10.1108/20428301311305296
Pages35-42
AuthorTim Grayson,Yuet Hung Tsang,Dee Jolly,Kate Karban,Phillip Lomax,Claire Midgley,Ian O' Rouke,Caroline Paley,Jill Sinson,Kim Willcock,Paul Williams
Subject MatterHealth & social care
Include me in: user involvement
in research and evaluation
Tim Grayson, Yuet Hung Tsang, Dee Jolly, Kate Karban, Phillip Lomax, Claire Midgley,
Ian O’ Rouke, Caroline Paley, Jill Sinson, Kim Willcock and Paul Williams
Abstract
Purpose – This paper aims to discuss the experiences of a group of eight user and carer researchers
from learning disability and mental health services who worked together in a research project.
The research was to find out about the changes that took place as over 300 people moved from hostel
accommodation into independent tenancies. These moves were part of a three year project involving
a partnership between a local authority and a housing association.
Design/methodology/approach – The evaluation was based on a model of user participation.
Findings – User involvement in research can mean different things with different levels of involvement,
from consultation through to user-controlled research. In this paper the authors discuss some of the
challenges in doing this kind of evaluation study, as well as the opportunities that came from involving
users and carers in the research. This includes how the researchers got involved and some of the
activities they did.
Research limitations/implications The authors also describe some of the difficulties that were faced,
including payments and criminal record checks. The ways in which people were trained and supported
to take part and stay involved are outlined as well as how the group feel that they have learnt new skills
and increased their confidence.
Originality/value – This paper adds the voices of the co-researchers to the literature and provides
‘‘lessons learned’’ for other researchers in this area.
Keywords User involvement, Research and evaluation, Learning disabilities, Mental health services,
Independent living, Community health services
Paper type Research paper
Introduction
This paper describes the experiences of a group of eight user and carer researchers from
mental health and learning disability services who collaborated in a research and evaluation
project. The project aimed to identify changes that took place as over 300 people moved
from hostel accommodation into independent tenancies in flats, houses and bungalows.
These moves were part of a three-year project involving a partnership between Progress
Care Housing Association and Leeds City Council Adult Social Care Department.
The plan to evaluate the move from hostel accommodation to people having their own
tenancies was discussed at a number of meetings of hostel tenants. People were particularly
interested to find out if moving out of a hostel improved social inclusion and helped people to
feel more involved in the local community. ProgressCare Housing led a bid for funding from
the Big Lottery. This was successful and a research management group was set up
including people from Progress Care Housing, Leeds City Council and Leeds Metropolitan
University. First of all three staff were recruited to work on the project, a senior researcher,
a research officer and a part-time administrator. They were employed by Progress Care
DOI 10.1108/20428301311305296 VOL. 17 NO. 1 2013, pp. 35-42, QEmerald Group Publishing Limited, ISSN 2042-8308
j
MENTAL HEALTHAND SOCIAL INCLUSION
j
PAGE 35
Tim Grayson is a
Co-researcher based in
Wakefield, UK.
Yuet Hung Tsang and
Dee Jolly are
Co-researchers based in
Leeds, UK.
Kate Karban is Senior
Lecturer, Department of
Social Work and Social
Care, University of
Bradford, Bradford, UK.
Phillip Lomax and
Claire Midgley are
Co-researchers based in
Leeds, UK.
Ian O’Rouke is a
Co-researcher based in
Wetherby, UK.
Caroline Paley is a
Research Officer,
Skipton, UK.
Jill Sinson was
Co-researcher based in
Leeds, UK.
Kim Willcock is a Research
Officer, Marsden, UK.
Paul Williams is a
Co-researcher based in
Leeds, UK.
The authors would like to
acknowledge the role of the Big
Lottery in funding this study and
dedicate it to Jill Sinson who
was a highly valued member of
the Include Me In group.

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