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Towards equal and active citizenship: pushing the boundaries of
participatory research with people with learning disabilities: ESRC
funded seminar series

Notes on Seminar 4: Participatory Research: Exploring issues of
transfer,
The Open University, Thursday April 10th 2014

Programme for the Day



9.30 Tea and coffee and registration
10.00 Welcome
10.10 My experiences at Central England People First and on
the National Forum, Craig Hart and Jan Walmsley
10.40 Learning from extraordinary lives, by Sally Holland
11.10 Tea and coffee
11.30 Training away the barriers: mental health service users’,
carers’ and academics’ experiences of a research
course, by Toby Brandon and Caroline Kemp
12.00 Discussion
12.30 Lunch

1.30 Researching together?: reflections on doing participatory
research over large distances, by Liz Ellis, Natasha Smith
and Stuart Ralphson
2.00 “If you could research anything, or see research done into

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anything, what would it be...”: developing a participatory
research relationship with people with dementia, by Sarah
Keyes

2.30 Tea and coffee

2.50 Exchanging notes: Where has inclusive research got to?
By Melanie Nind

3.20 Discussion

3.45 Summing up: What do we want to tell others about the
day?



Slides from each of the presentations given on this day can be downloaded
from our project blog at:

http://participat.blogspot.co.uk/2014/06/seminar-4-exploring-issue-
of-transfer.html






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The presenters were asked to talk about some of these things:

 Their own experiences of doing participatory research in different fields e.g.
learning disabilities, dementia, carers, children

 How might participatory research with people with learning disabilities both inform
and be informed by participatory research in other areas such as children and
older people?

 The commonalities and differences between different fields of participatory
research

Craig Hart: My experiences at Central England People First and on the National Forum

Presentation about research on history of one People First group that has been in
existence since 1990s: Central England People First.

CEPF decided they wanted to do research on their 21 year history.

Craig’s role was to manage the project and the team involved someone from the Lottery
bid, Jan Walmsely, previous member Neil Morris.

People running it were CEPF, but they needed people with other skills, academic experts,
people from the archives, with special history research skills.

One of the difficult things was the amount of material to work through – needed to
prioritise the period 2003-2013 – and making it accessible.

Methods included interviewing old members, about their time in CEPF and what it meant
to them and the things they did.

The process was catalogued with photographs. Anything could go on the website but
deciding what went into the booklet depended on thinking about who it was for – for the
funders and professionals and other People First groups.

Decided it would not be in EasyRead; this was a hard and controversial decision, but they
prioritised fitting in more information. The researchers also wanted the final report to

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celebrate CEPF and help attract further funding, so putting as much content in as possible
was seen as very important to members.

There were disagreements about the content. A previous support worker felt some
important things were missing, but CEPF felt that members needed to decide. They
decided they wanted Jan Walmsley to write some of the booklet, as she had a history
with CEPF and an understanding of how they work. She did the historical context part –
the bigger picture part – as this was hard for CEPF people to do.

In some ways Craig’s story is one of help sought and help rejected.

The main challenges were:

 deciding what was important,
 choosing who we needed to read our work,
 deciding whose story they wanted to tell,
 and comparing their history with other groups and what else was happening.

Their advice for other research projects led by people with learning disabilities:

 ask for help;
 make the difficult decisions based on what feels right;
 make sure the voice of people with learning disabilities does not get lost.

Q&A

 Caroline asked what was most enjoyable about the research and Craig talked about
learning a lot from the partnership with Catherine (oral historian).
 Angela from CEPF talked about her difficult experiences with her family which were a
distraction from doing the research.
 Craig was asked about his interview skills and how long it took to put the booklet
together. The whole project took 2 years – these things always take longer than you
think!

Sally Holland: Learning from extraordinary lives

Sally talked about 2 projects with young people who live, or have lived in care; these are
ordinary young people with extraordinary experiences also, having been separated from
their parents or other carers, often with difficult childhoods. This gives them particularly

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good insights into social and family lives, but also leaves them often poor and less well
educated.
Sally reflected on her background in social work where it was once unusual to hear from
people who used social work services, which changed in the UK in the 1960s influenced
by Barbara Wooton.
One way of involving services users is co-researching, but also expressing their views in
research, advising research, and choosing how they want to be involved in research.
Mayer & Timms 1970 in ‘The Client Speaks’ was one of the first to ask want clients want
and it was not what they were offered; this exposed the different views of people
delivering and using services (an important study if outdated language).
In Project 1 ExtraOrdinary Lives, they asked young people what they want to say about
their everyday lives and how. The vehicle was a fortnightly club where they made films,
talked and walked while audio or video recording.
What worked well was the project reflected how they like to share information: on the
move, in short bursts/fast-moving conversations interspersed with u-tube excerpts etc.
 new research methods can lead to new research questions and findings
The young people were often in control, partly because of their greater competence with
the technologies they preferred using.
The power divide was lessened by the young people steering the questions.
Sometimes the completely open choice was disconcerting in its lack of focus.
The power differences within the group of young people came to the fore; the girls were
dominant and the individuals were differently able.
Confidentiality was an issue, which meant some data from individual life stories couldn’t
be shared.
Some of the research was found to be quite boring and tedious (such as coding), so they
had to work to keep it interesting. They produced lots of academic articles, but also
accessible 2-minute films developed with the young people using their data.

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Project 2 was with care-leavers. Other projects wanted the input of a Research Advisory
Group. To avoid this being tokenistic Sally and colleagues trained young people in
research methods.
Learning through doing: they tried out the research methods, acted out research
proposals and had debates and quizzes
To stop this getting boring or out of touch they use a ‘bullshit’ button, they bust open
jargon, and they use active learning.
Challenges involve slowing down and making time for building relationships, Sally has had
to learn to change but worth doing.
The question of money and payments is complex and also giving people a
qualification/credit.
Recently they have been working on improving participant information letters.
Participatory research takes time and resources, but it can improve the quality of the
research and the relevance of the questions and methods.
Issues that are transferable across different fields of participatory research:

 Time
 Resources
 It can improve the quality of research
 It can have relevance to all methods and research questions and not just
qualitative research. e.g. young people advised on the wording of an information
sheet for a large scale survey

Q&A: There was interest in where a ‘bullshit button’ can be bought and progress with
getting the methods training credited, also the numbers involved and the analysis
process.
Toby Brandon and Caroline Kemp: Training away the barriers: mental health service
users’, carers’ and academics’ experiences of a research course

Toby introduced himself as lead researcher on a mental health research project funded
by the NIHR and Caroline as a mother/carer for a daughter with severe, chronic mental ill-
health who was drawn into the project for a mix of personal and altruistic reasons.


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Caroline commented on how the issues discussed so far in the seminar so far all apply to
mental health research.

They dislike the language of co-researcher, or peer/parent researcher and prefer just
‘researcher’. They argue that you are either a researcher or you are not.

They are involved in co-producing with an emphasis on 'doing it together’.

Principles for good practice:
 Training and support
 Rigorous process
 Valuing each other
 Learning together

Defended the research as still being rigorous, positioning this in opposition to messy, ad
hoc research. Caroline thought this was in part a result of 10 weeks of training the
researchers from outside of the academy had. This helped to build people’s confidence,
develop rapport and build a sense of team work.

There were some barriers to the training which needed to be overcome:

Coming to a university can make people nervous
People may have bad memories
People often think that research is something that other people do
Their own experiences of being researched 'on' may not have been very good
They may not have confidence about reading and writing
People may be concerned about having to work with others

They critiqued ‘ram-road’ research which takes and runs!

Therefore: Time to build rapport and the work of mentors was valued.

They broke barriers by:

valuing people through providing a quality course and involving quality tutors who are
leaders,
presenting the university as a community resource
Supporting people to learn how to learn
the use of buddying and mentors
creative writing sessions,

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taking away the academic fears- instilling that everyone is an expert in something

The training was about quality in research, values in research, doing research responsibly
and safely. After 10 weeks participants could get a certificate and exit, or stay for another
4 weeks, with option to stay on as researcher in the project. The final assessment was a
reflective essay.

They have added in ‘call back’ days with top-up training.

The training was developed in situ and was responsive to the needs of the group. It was
essential to have a degree of flexibility within the training programme.

They found it very informative to observe an ethics committee (including a doctor asking
incredulously about ‘mad people interviewing mad people’!)

The training has had impact so people have become trainers themselves, experienced
better health and got jobs.

Inclusive research has enabled people who on paper might not appear to be
‘appropriate’ researchers to develop skills, expertise and build their CVs(such as people
with criminal records).

Changing identities: from service user, to carer, to student to researcher

The research process also helped to break down barriers between service users and
carers.

Caroline read her poem published in a journal in America.

Palm Sunday...and Monday and Tuesday

It was ALL the pams
A grand pam
A flim flam
A whim wham
Doldrums humdruns
Dumb drums
Drumming
Banging clanging
PAM PAM PAM

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Diazepam
Lorazepam
Temazepam
And the pretty purple one?
Dizzy giggling whispering
Another grand slam
OK?
KO
Another
grand
S
L
A
M
In the slammer..
NAPALM

NB Caroline has also written a poem about coding data that she shared after the
seminar: (see also: http://lypftplanningcare.wordpress.com/2014/04/25/pathways-to-
recovery-service-user-carer-led-research-a-carers-view/)

CRACKING THE CODE.... On the Node..

Cracking the code
The elusive node
The path the journey
Select a node
So?
So so
Link nodes
Respect
Empathy
Honesty
We care for those
We crave for those
Hope, fragile hope
Beliefs
Belief systems
Interrogate, interrogate the data
Find the frequency

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What when by whom..
Crack the code
Code combos
Being at the heart of things
Finding the heart
Heart felt
Heart beat
Nodes like a tree
Strong comforting rooted
And searching searching
Searching for the significant
OTHER
Clues bloodlines
Traces
That lead to crack
Crack the code


Q&A:
Participants were interested in the training materials, the location of the training and
funding for the training. Courses with accreditation are expensive, but the benefits are
extensive; they used their NIHR grant and other monies.

Morning Discussion

(i) Is PhD research compatible with inclusive research? Is it practical to do this kind
of research as a research student?
(ii) Interviewing on the CEPF interview project – need to learn the skills of
interviewing
(iii) CEPF’s decision to not use Easy Read for the final report raised important issues
of trust; members of the organization had to trust that the long report
represented what they wanted to say.
(iv) Inclusive research takes time and is very individual in its requirements; you have
to be responsive to the pace at which other people work; the time needs have
implications for the academic too
(v) Lots of people want to buy a bullshit button!
(vi) Need to educate research funders about the additional preparation, time etc
involved in inclusive research
(vii) How do you communicate intangible outcomes to funders?
(viii) Use of story-telling is appreciated

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(ix) Tension in training between bringing other groups into academic ways and
valuing their differences. How much can academics expect others to adapt to
their ways of doing research and vice versa?
(x) Need for choices rather steering people to a ‘right way’
(xi) Participatory research is often mis-represented or under-sold; ‘often just nice,
fluffy qualitative research’
(xii) People learning to be researchers contributing their experience make good
trouble-shooters when piloting methods etc
(xiii) The type of data that emerges in inclusive research projects are products of the
ways in which the research has happened. The process affects the data (e.g.
data produced ‘on the move’, or in short bursts of informal conversation).
(xiv) There was considerable interest in the research training programme detailed by
Toby Brandon and Caroline Kemp. The flexible approach they described was
viewed very positively, but it was recognized that it might be hard to justifify this
approach to funders.
(xv) Payment issue has to be flexible enough to accommodate people’s need to
opt out, leave suddenly etc (the in between-ness of being a researcher and
being a participant.)
(xvi) Some people (e.g. ethics committees) worry about the lives of people with
learning disabilities being empty and therefore worry about what might happen
when the research ends. This might have been true 5-10 years ago, but is it less
true now?
(xvii) We are not learning, we are becoming.



Liz Ellis, Stuart Ralphson and Natasha Smith: Researching together? Reflections on doing
participatory research over large distances

The stimulus for this research was Liz's PhD, which is base in Cornwall.
The focus was on exploring how people with learning disabilities living in rural places, get
along in their communities.
They walked or drove to meaningful places and then conducted mobile, go-along
interviewing.
What made things difficult?
 Confusion: the group were initially not sure about what Liz wanted to do
 The problems that people have experienced in the past, don't reflect the problems
that people experience now. Inclusive research has focused on stories of

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institutions, but this doesn’t reflect the experiences of young learning disabled
people, many of whom have spent all their lives in the community.
 People drop out or join later therefore you have to be flexible
 Because of the geographical distances involved, the researchers have not yet
managed to meet as a complete team.

Q&A:
Why would people get involved?
 Want to help Liz
 Like meeting people
In choosing to locate the research in Cornwall, this research raises questions about how
you can bring together an inclusive team in the context of increased service
fragmentation, when people often live many miles apart without transport. The group also
reflected on how inclusive research can be extended to those people who may not be
active in a self-advocacy group, or another voluntary organisation. In rural locations it
can be even more difficult to locate such people.

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Sarah Keyes: Developing a participatory research relationship with people with dementia
Sarah described a project in which wanted to ask people with dementia what 'the
research agenda' should be.
It became apparent that it would be important to develop a set of core principles so that
research would be done differently, and would improve people's lives.
In co-creating these core principles with people with dementia, there were discussions
about what makes good and bad research and what needs to change for people with
dementia to be more involved.

Statements from these discussions were categorised into 6 key themes or areas including:
1. I never heard what happened
2. Knowledge comes from all sorts of places
3. We need to be in a safe and secure environments
4. Keep it simple, less is best
The group then reflected and discussed these 6 areas- this led to core principles
underpinned by the prior experiences of the group. For example for the theme: I never
heard what happened, core principles such as:
 we want to be valued
 it usually takes several years and more than one project for lasting research to
happen
were derived.
Q&A:
Were there any examples yet of people with dementia leading their own research? Sarah
said that the inclusive research agenda in dementia in Scotland is not at that point yet,
but she is hopeful that this could be the next stage.





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Melanie Nind: Exchanging notes- where has inclusive research got to?
Who does inclusive research- what other groups apart from people with learning
disabilities? Schools, children, everybody...
In thinking about this question we have to think about whether only marginalized people
do inclusive research- who is pushed to the edge- beyond the usual suspects. We also
need to think about enablers, support workers and whether their voices are heard.
We do need to talk to one another about our inclusive research:
- listen
- have discussion and dialogue
- think together
Melanie can only get excited about research if there is dialogue.
BUT- when we do talk to each other- do we have to describe all the stages every time? Or
can we say, some of this has already been established and as a group we know some
stuff- in other words we are not starting from 'zero'.
If the different fields of inclusive research think together- we can start a dialogue about
what we have achieved. For example:
 lots of examples
 government recognition
 talk about rights
 new alliances
 new methods
 interest in what different it makes to do research inclusively
 interests in costs and benefits
 message about social inclusion
 funding
 being authors, reviewers, advisors, teachers
 lots of know-how and know-what
 new labels- e.g. peer researchers
 celebratory narrative

But there are challenges:
 there is room for more talking
 scope to develop more shared language

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 Second generation inclusive research- what does this look like? Perhaps it needs to
be more concerned with product than process.
 New spaces

Inclusive research is growing up- growing into something weightier, more informed by
critique.

Mel Q&A
What would a product of inclusive research look like? - Mel replied: new knowledge, new
understanding

Afternoon discussion:

i) Are there any methods that cannot be done inclusively?
ii) How do we move from talking to action?
iii) Will the push for REF impact partners be good or bad for inclusive research i.e.
will it increase the risk of tokenism?
iv) What does 'research' mean to people with learning disabilities?
v) What are the implications for saying that inclusive research is only for
marginalised groups and who decides who is marginalised?
vi) Will there be back-lash against the 'new researchers' produced by inclusive
research who do not have the formal qualifications of say university researchers?
vii) Can we produce a code of conduct for second generation inclusive research-
that might be referenced in future research proposals?
viii) What about having a pool of resources or an archive - a place where outputs
and other relevant documentation of inclusive research are stored and
accessed?




Jane Seale, Melanie Nind, Liz Tilley & Rohhss Chapman, April 2014

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