Reflections on the process of participatory research: non-disabled researchers
working with sensory impaired people
Introduction
Over the last decade, it has been cogently argued in the disability literature that if
researchers use an orthodox methodology and assume control of the research
agenda and process there is a risk that disabled voices are marginalised
(Shakespeare 1996; Moore, Beazley and Maelzer 1998; Zarb 1992). This risk is most
likely in situations where non-disabled commissioners of research and non-disabled
researchers collaborate on research projects that have as their central purpose
disability issues. Not only does this put disabled research participants at risk of
exploitation for the advancement of knowledge from which they may have no tangible
benefit (Kitchin 2002), it might also compromise the validity of the research.
Recognition of these arguments has led to the emergence of research methodologies
that have emphasised participation in, and control of, the research process over the
last two decades (Cornwall and Jewkes 1995). Referred to as participatory research
– or participatory action research – this approach has been strongly advocated in the
disability literature as a means of addressing some of the limitations of conventional
research.
To date, few studies have documented how sensory impaired1 people have been
involved in health-related research. This paper goes some way towards filling this
gap by reflecting on the structures that supported, and the processes that drove a
research project that involved non-disabled researchers working with people with a
sensory impairment in order to explore their views and experiences of participation in
the first stage of the National Bowel Cancer Screening Programme. First, in order to
set the research in context, the rationale for the research is briefly outlined by
1
There is wide debate concerning the terminology used to describe sensory
impairments; the term ‘impairment’ is seen to represent a challenge to ableist
discourse by many people as it reflects a continuum of impairment amongst all
people and prevents use of unhelpful dichotomies such as ‘blind’ and ‘sighted’ (Bolt
2005). Whilst it is acknowledged that some deaf people do not perceive deafness to
be an impairment, for the purposes of clarity and brevity, the term ‘sensory
impairment’ will be used in some instances to refer collectively to people who identify
as deafened or hard of hearing; those who identify as being part of the Deaf/deaf
community and those who identify as being blind or partially sighted. The term ‘deaf’
will be used to include those people with any level of hearing impairment.
1
considering the health policy context, particularly as it relates to bowel cancer
screening. This is followed by a discussion of participatory research as a research
strategy that has the potential to keep the voices of people with a sensory impairment
to the fore. The paper then explores the approach used in the research project and
considers the extent to which this facilitated the research and enhanced the validity
of the findings. Finally, the paper considers how the findings could be used to inform
the bowel cancer screening process.
The origins of the research: the policy context
Bowel cancer is the third most common cancer in the United Kingdom and the
second leading cause of cancer deaths, killing some 16,000 people each year
(Cancer Research UK 2007). However, regular bowel cancer screening can reduce
the risk of dying from bowel cancer by 16% (Hewitson, Glasziou, Irwig, Towler and
Watson 2007). On the basis of this finding, in 2006, the National Bowel Cancer
Screening Programme was introduced in England, inviting, by postal letter, all adults
between the ages of 60 to 692 and who are registered with a GP, to participate in
screening.
The initial stage of the screening process involves the self-completion of a faecal
occult blood test, which requires the collection of small stool samples that are
subsequently posted to a local screening programme hub laboratory for testing. A
pack is sent out containing the test kit, an instruction leaflet, an invitation letter, and a
booklet on bowel cancer screening. Taking the stool samples involves a fairly high
degree of commitment and dexterity. For example, it requires the use of sticks to
collect samples from a stool that has not been in contact with toilet water, which are
spread onto the test kit in the appropriate places. Two samples from three different
bowel motions must be taken within a two week period and a fresh stick has to be
used each time.
The success of the screening programme in the early detection of bowel cancer is, in
part, dependent on the uptake of the initial invitation to participate and the
subsequent completion of the screening test. Thus, considering how accessible the
programme is to those in the target group is important. Research to date indicates
that participation in bowel cancer screening may only reach 60% (The UK CRC
Screening Pilot Evaluation Team 2003) and a variety of reasons have been identified
2
In December 2007, the Government announced that screening would be extended to people
aged 70-75 in 2010).
2
for this: for example, the perceived unpleasantness of the test, (Worthley et al. 2006)
people’s perceptions of their own vulnerability to bowel cancer (Hunter et al. 1991)
and whether or not their GP had recommended their participation (Rabeneck 2007).
However, in some groups – for example, those with a sensory impairment –
participation might be lower because, in addition to these factors, they find the
process particularly challenging because it has not been developed with their needs
in mind. This means that they are at risk of being excluded from processes from
which their health might benefit. If this is the case, there is the possibility that
inequalities in access to a health care process such as screening might worsen
inequalities in health. This would be counter to the current emphasis in government
health policy on reducing health inequalities (Department of Health 2004).
This analysis of the screening context illustrates the rationale for the project. The
National Screening Programme wanted to commission research that explored
sensory impaired people’s views and experiences of the first stage of the bowel
cancer screening process in order to understand how inequalities in access to
screening might be operating amongst this group. It was likely that sensory impaired
people would constitute a sizable minority of the 60 – 69 year old target group. Thus,
it was not a research agenda that was directly initiated by people with a sensory
impairment. However, recent research has revealed that access to healthcare, and
preventative healthcare in particular, can be difficult for people with a disability
(Disability Rights Commission 2007; Kroll et al. 2006; Ramirez et al. 2005). In
particular, people with a sensory impairment have been found to face a number of
barriers when interacting with health services, often because service providers had
failed to make adjustments for their needs (Disability Rights Commission 2007; UK
Council on Deafness 2006; RNID 2004; Sense and Deafblind UK 2001). This
suggests that there was the potential for the research to lead to benefits for the wider
sensory impaired community.
Participatory research: process and outcomes
The primary purpose of the research was to engage sensory impaired people within
the target age range for bowel cancer screening in order to explore their views and
experiences of participation in the initial part of the screening process.
Notwithstanding what has been said above in relation to the origins of the research,
the value of using a participatory approach in the design, management and execution
of the project was appreciated by the researchers and commissioners of the
research. This was for several reasons: first, its commitment to utilising the
3
knowledge, expertise and resources of sensory impaired people to inform the
research process (Macaulay et al. 1999) was seen as likely to increase the validity of
the research (Chappell 2000; Thornton et al. 2003; Truman and Raine 2001). This
was particularly the case given that a qualitative approach to the research was used
to enable sensory impaired people to draw on their experiential and biographical
knowledge (Truman and Raine 2001) to give their accounts of what it was or would
be like to be involved in the bowel cancer screening process. Thus, involving sensory
impaired people had the potential to ensure that research questions reflected the
interests of this group (Beresford 2007) whilst giving credence to their views
(Chappell 2000) and sensitising researchers to their concerns (Macaulay et al. 1999).
This was also seen as having a range of benefits in relation to improving the
feasibility of the research. For example, their involvement was seen as a vehicle for
informing the design of recruitment strategies and data collection methods that were
genuinely inclusive and which sought to enhance the participation and involvement of
sensory impaired people as research participants.
Involving sensory impaired people in the research was thus seen as benefiting the
research in a number of ways and perhaps reflects why public and patient (or service
user) involvement in National Health Service (NHS) research is now a policy
imperative (Boote, Barber and Cooper 2006). However, given the central
commitment of participatory research to bringing about change in the lives of those
who are the focus of the research (Gilbert 2004; White, Suchowierska and Campbell
2004) it is important to consider what might be the benefits to sensory impaired
people. Participatory research is a vehicle for better representing the social world of
sensory impaired people, thus improving the validity and credibility of the findings.
This increases the likelihood of external commissioners and funders of research
accepting the findings as part of a valid evidence base making and using them to
inform future service developments. If this was to happen then there is a genuine
opportunity for participatory research to ‘bridge the gap between research and
practice’ (Beamish and Bryer 1999, 458) and bring about disability oriented change.
The key issue, however, about participatory research is the challenge it poses to
researchers given that it has a commitment to reversing the traditional power
balances between ‘professionals’ and ‘lay’ people (Cornwell and Jewkes 1995). Zarb
(1992) for example argues that researchers should be directly accountable to
disabled people, whilst others have emphasised the importance of researchers’
expertise being put at the disposal of people with disabilities (Oliver 1992; Gilbert
4
2004). The following sections describe and explain the structures and processes that
underpinned the project and generated the social relations between researchers,
sensory impaired people and the commissioners of the research, and explore how
these issues of power and control were managed.
Project structure: setting up the steering group
The research commissioners, who were responsible for ensuring that the project was
conducted and completed in line with their stated aims and resources, initially took
control of setting up the steering group. However, they showed a commitment to
involving representatives of the sensory impaired community from the beginning.
Thus, using their contacts with two local disability organisations they invited two
individuals to join the steering group. This meant that the project steering group
consisted of: three researchers; two representatives from the Cheshire and
Merseyside Bowel Cancer Screening Programme; two representatives from the
health inequalities team at the local cancer network; a support worker from a
voluntary organisation for people with a visual impairment who was himself visually
impaired; and a deaf support worker from an organisation providing support to deaf
people. Whilst representation was imbalanced, the steering group provided a vehicle
for blending the knowledge and skills of researchers and commissioners with the
first-hand experience of sensory impaired people (Kitchin 2002).
Securing representation on the steering group from people with a sensory
impairment was not straightforward and the experience illustrated how non-disabled
researchers and commissioners can find it difficult to find a way into communities
with which they are not normally engaged. In the case of representation from the
visually impaired community it was possible to use an established contact. Thus, this
support organisation was approached for help, and a good working relationship
endured for the duration of the research project. However, it was more difficult to
secure representation from the deaf community. Communication with deaf staff at the
organisation was conducted via British Sign Language (BSL) interpreters, which took
considerable time, partly because of the researchers’ inexperience of communicating
with BSL users. Consequently the representative from the deaf community did not
join the steering group until after the project had begun, when several decisions
about the research had already been made. This came as an early lesson to the
researchers in communication with the deaf community, where it was not usually
possible to rely on direct contact via telephone and e-mail. It also illustrates how
5
researchers can quickly become sensitised to the need to change their everyday
practices when seeking to work with sensory impaired people.
Although the steering group included two individuals with a sensory impairment,
representation of the diversity amongst this group was limited. For example, the
views of deafblind people, and people who were hard of hearing, may not have been
represented so well. In addition, although the individuals recruited onto the steering
group were able to represent, to some extent, the views of other people who
accessed their support services, the extent to which they were able to represent
those not in contact with services, is questionable. However, the limitations of time
and resources meant that the project moved forward without further attempts to
increase the membership of the steering group.
There may be a tendency for non-disabled researchers to substitute consultation with
sensory impaired people with advice from other non-disabled people who appear to
represent their views, as this is likely to be more convenient to them, a more efficient
use of their time and less problematic. There may also be a temptation for
researchers to rely on the advice of academic peers, who may or may not have a
sensory impairment, firstly because this advice may be readily available via well
established networks, but also because of the authoritative weight ascribed to
experiences within academia. This process of substitution can marginalise the voices
of disabled people (Moore, Beazley and Maelzer 1998) and the involvement of
sensory impaired steering group members acted as a counter to these tendencies.
This was partly because they ensured that the views of people with a sensory
impairment were kept high on the research agenda when planning the project and
deciding how best to consult with this group, these views being informed by their
lived experience of disability. However, it was certainly the case that the researchers
drew on a wide range of advice beyond the steering group that included people from
the sensory impaired community working in voluntary organisations, the wider
disability community and academic and support staff from the university where they
were based. The regular meetings of the steering group – to whom the researchers
were accountable – provided a mechanism for ensuring that the researchers
remained sensitised to those issues of relevance and importance to sensory impaired
people, thus limiting the scope for their marginalisation. This forum also created an
opportunity for researchers and steering group members to be active in the research
process and learn from one another (Macaulay et al. 1999). These dialogues were
important because it enabled all parties to put forward their views and agree
6
strategies for the project. Some of the strategies that are particularly noteworthy
because they influenced the direction of the project in terms of its feasibility are
discussed further below.
Recruitment of research participants
Given the importance of communication at the recruitment and data collection stages
of the fieldwork particular consideration was given to this process. In order to recruit
people with a sensory impairment between the ages of 60 and 69 years, the
researchers were dependent on a number of gatekeepers and a variety of voluntary
organisations supporting people with a sensory impairment were approached for help
with recruitment. These support organisations were familiar with the preferred
communication methods of their service users and offered advice on how best to
proceed with the recruitment process. However, several issues confronted the
researchers.
First, whether individuals with a sensory impairment accessing support organisations
received information about the research at all was dependent on the gatekeepers’
interest in the research, whether they perceived that their organisation could
accommodate the research and whether they thought that their service users would
want, and be able, to participate. For example, some smaller organisations perceived
that they did not have the facilities to accommodate a focus group and that their
service-users would be unwilling to travel to another venue. Hence, the views of
these individuals could not be accessed. Linked to this was the fact that when
gatekeepers agreed to disseminate information about the research to their service
users, the researchers had little control over exactly whom organisations chose to
recruit to the study. The researchers endeavoured to communicate the view that
everybody accessing a support organisation was a potential research participant and
that funding and time were available to ensure that interpreters or facilities could be
made available to facilitate any individual’s participation, no matter what their
communication needs. However, evidence suggests that staff supporting people with
a sensory impairment and acting as gatekeepers in this kind of situation may choose
to select people for research based on their communication abilities (Moore, Beazley
and Maelzer 1998). In the course of this project researchers were able to secure
interviews with a number of deafblind individuals, which suggests that some
gatekeepers did not necessarily let perceived difficulties with communication
influence their selection of participants. Nevertheless, as recruitment was ultimately
left in the hands of the gatekeepers, the researchers could not be sure that other
7
individuals with additional disabilities had not been omitted from the recruitment
process.
This is an illustration not only of how processes of communication – which in any
research situation can be less than perfect – can influence key research processes
but also of how the recruitment process, which is normally in the hands of
researchers, had to be, at least to some degree relinquished. In terms of the
consequences of this for recruitment, this seemed, on reflection, to work well in that
96 research participants were involved in the research. It also generated a fairly
diverse sample in relation to age, sex, type and degree of impairment and
geographical spread. The sample also included some people who had not been
invited for screening, some people who had, as well as some who had participated in
the first stage of the screening process.
However, the limitation of this way of recruiting individuals meant that those who had
no contact with formal support organisations were excluded from the research.
Constraints of time and resources meant that the researchers did not fully explore
options for recruiting these people. It is possible that these potentially more isolated
individuals may experience different barriers to participation in the bowel cancer
screening programme than those in contact with organisations. Using a snowball
sampling technique, utilising personal links from within the sensory impaired
community who were contacted via organisations, may have helped to make the
research more inclusive. Indeed, on one occasion an individual attending a support
group asked the researchers if she could bring two friends who did not attend the
group to a research focus group that she planned to attend the following week.
However, this was the exception rather than the rule and illustrates one of the
limitations of utilising participatory research that is at the level of ‘user involvement’,
rather than a more openly inclusive approach (Beresford 2007).
Communicating the purpose of the research
There were problems of miscommunication with potential research participants,
which, as indicated above, attend all research projects, but posed particular issues
for non-disabled researchers who are most familiar with communicating in the written
and spoken word. The research team provided information about the research in a
number of different formats, as advised by the sensory impaired steering group
members and in response to requests from the support organisations (e,g.
information sheets in Braille, large print, audio cassette, electronic format). However,
8
in a number of cases the researchers were dependent on support organisation staff
translating information about the research to potential participants either verbally or
visually in BSL, as they sought to recruit people. There were occasions when this
lead to a lack of clarity or misunderstanding for potential participants about what
involvement in the project entailed. For example, on one occasion, where apparent
consent for participation had been gained via a support organisation, it became clear
to researchers at the interview stage that participants had not understood the aims
and purpose of the research or their possible participation in it. On another occasion,
researchers realised that a group with whom they were expecting to conduct a focus
group were themselves anticipating a presentation about bowel cancer and the
screening programme.
These examples highlight the issue of ensuring that informed consent to participate
was gained from all research participants. Inevitably, the traditional practice of
obtaining written consent was not appropriate when working with participants for
whom written materials were inaccessible. Thus, more informal methods were used
in the first instance, such as verbal consent given via the support organisation, and
this was followed up by researchers when they met with participants and were able to
clarify the aims and purpose of the research. However, potential participants may
have felt some pressure to participate at this stage of the recruitment process.
Researchers realised that they needed to check individuals’ understandings of the
research project sensitively.
Data collection methods
It is well documented that traditional research practices often leave researchers illequipped to accommodate the needs of participants with impairments (Moore,
Beazley and Maelzer 1998) and this is likely to be particularly the case for people
with a sensory impairment. However, consultation with people with a sensory
impairment on the steering group prompted the development of a range of options
through which people with a sensory impairment could participate in the data
collection process. Participants were invited to take part in an individual or group
interview, a focus group, or an online discussion board. While the researchers had
anticipated that the nature of participants’ impairments would determine their
preferred method for participation, the nature of their relationship with other people in
the support organisation also played an important part. For example, where
individuals attended a regular social group via a support organisation, they were
9
often keen to attend a focus group with these people. No participants chose to use
the online discussion board.
This flexibility was designed to make the data collection process as inclusive as
possible by responding to individual needs and preferences. Needs expressed were
related to both direct participation in the research and to more practical aspects of
attending a particular venue. For example, some participants who were hard of
hearing requested a lip speaker to be present at their interview, whilst several
participants with a visual impairment required transport to the interview venue.
Consulting with staff from support organisations and, in some cases, visiting the
venues, enabled the researchers to make sure that the environment for interviews
was accessible to the participants and conducive to effective communication. For
example, consideration was given to the lighting and seating arrangements for focus
groups where participants would be reliant on lip reading. This process also
facilitated rapport between the researchers and participants which improved the
quality of the data collected.
However, not all eventualities in the field were covered by this process and the
researchers,
perhaps
inevitably,
made
many
mistakes
which
hindered
communication. For example, during focus groups run via a BSL interpreter,
researchers had not considered the fact that participants would be unable to review
visual props, such as a sample faecal occult blood test kit, while the researcher
continued to talk, as participants could not simultaneously look at the props and the
interpreter. In addition it became clear that developing effective communication
strategies presented more of a challenge for the researchers than the participants,
who were well-equipped to manage communication in a group or one-to-one setting.
For example, consultation had prompted the researchers to give consideration to the
fact that visual prompts would be redundant during focus groups with visually
impaired participants. The researchers anticipated that the flow of discussion would
therefore require careful management. However, it became apparent during fieldwork
that participants would manage the flow of conversation themselves using audio
clues, requiring little intervention from the researcher.
Bringing about change through the dissemination of findings
Proponents of participatory methods might criticise the seemingly self-serving
motivation for the employment of participatory methods in this project (Dockery 1996)
in that it is a process for engaging with research participants in a manner which can
10
increase the credibility and validity of the findings. However, because the research
seeks to engage participants meaningfully in the creation of evidence that is
grounded in people’s own accounts of disability (Truman and Raine 2001) it has the
potential to inform future developments in a direction that might lead to positive
change for disabled people.
Many of the findings of the research described in this paper revealed that the first
stage of the bowel cancer screening process was governed by a set of processes
and procedures that made the participation of people with a sensory impairment
difficult. Thus, participating in the process by completing the faecal occult blood test
was not always simple, straightforward or acceptable and thus uptake of screening
was threatened. Many of the comments made by participants related to practical
changes to make their participation easier as well as strategies that could be used to
motivate people with a sensory impairment to overcome the effort participation could
require. These findings were presented in the final report that was sent to the
National
Bowel
Cancer
Screening
Programme
along
with
a
series
of
recommendations as an evidence base to inform how the programme could be better
able to meet the needs of sensory impaired people, and indeed all older people in the
target age range who might have hearing, visual or mobility difficulties. To date the
recommendations have been used to provide the National Programme with a
feedback on how their processes and systems are viewed and being experienced by
people with a sensory impairment. The recommendations have highlighted the need
for new strategies to be developed, particularly in relation to the forms of
communication and how bowel cancer screening staff interact with sensory impaired
people at each stage of the pathway.
Conclusion
This research presented a number of challenges to the researchers involved and in
an effort to meet these, a participatory approach was adopted that drew on the
experiential knowledge and understandings of sensory impaired people. Regular and
frequent consultation with steering group members with a sensory impairment,
workers at organisations supporting members of the sensory impaired community
and with the individuals ultimately engaged to participate in the research resulted in a
process that sought to be genuinely inclusive because it embraced processes of
communication that were designed with the needs of sensory impaired people in
mind.
11
Developing these inclusive methods was logistically more complex and more
resource intensive than a similar study with non-disabled people may have been, and
the time and cost demands of the data collection methods were underestimated by
the research team. Adopting a participatory approach did however provide an
effective way of anticipating some of the complexities of engaging with this group. It
is important also to note the applicability of the inclusive practices developed to other
‘hard to reach’ groups, such as those with low-literacy levels. In conclusion, the
participatory approach adopted for this project not only ensured that the voices of the
people who were the participants, people with a sensory impairment, were kept to the
fore, but that the findings were valid and had the potential to enhance the
engagement of this group of people with the National Bowel Cancer Screening
Programme.
Ultimately the success of this project lay, to a large degree, in the nature of the social
relations that were generated between non-disabled and disabled people. If
participatory research approaches are viewed in these processual terms then a
commitment towards realigning the power relationship between the researcher and
the researched (Zarb 1992) is important. This is a challenge to all parties engaged in
participatory research, but if embraced then has the potential to generate research
that can lead to positive change.
12
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