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Sharing stories: Complex intervention for diabetes education in minority ethnic groups who do not speak English

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To develop and refine a complex intervention for diabetes support and education in minority ethnic groups, delivered through bilingual health advocates. Action research framework-a variety of methods used in an emergent and developmental manner, in partnership with clinicians, managers, and service users, drawing especially but not exclusively on narrative methods. Deprived inner London district. Development and evaluation of three components of the complex intervention: a group based learning set for bilingual health advocates, in which stories about clients with diabetes formed the basis for action learning; advocate led support and education groups for people with diabetes, which used personal stories as the raw material for learning and action; organisational support to help to develop these new models and embed them within existing services. Both advocate groups and user groups were popular and well evaluated. Through storytelling, advocates identified and met their own educational needs in relation to diabetes and the unmet needs of service users. In the advocate led user groups, story fragments were exchanged in a seemingly chaotic way that the research team initially found difficult to facilitate or follow. Stories were not so much told as enacted and were often centred on discussion of "what to do." Whereas some organisations welcomed, successfully implemented, and sustained the advocate led groups, others failed to do so. A key component of the complex intervention was organisational support. An action research approach allowed engagement with an underserved group of health service staff and with hard to reach service users. The study produced subjective benefits to these groups locally as well as a worked-up complex intervention that will now be formally tested in a randomised controlled trial.
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Primary care
Sharing stories: complex intervention for diabetes education
in
minority ethnic groups who do not speak English
Trisha Greenhalgh, Anna Collard, Noorjahan Begum
Abstract
Objective To develop and refine a complex intervention
for
diabetes support and education in minority ethnic groups,
delivered through bilingual health adv oca tes.
Design Action research framework
a variety of methods used
in an emergent and developmental manner, in partnership with
clinicians, managers, and service users, drawing especially but
not exclusively on narrative methods.
Setting Deprived inner London district.
Interventions Development and evaluation of three
components of the complex intervention: a group based
learning set for bilingual health advocates, in which stories
about clients with diabetes formed the basis for action learning;
advocate led support and education groups for people with
diabetes, which used personal stories as the ra w material for
learning and action; organisational support to help to develop
these new models and embed them within existing services.
Results Both advocate g roups and user groups were popular
and well evaluated. Through storytelling, advocates identified
and met their own educational needs in relation to diabetes and
the unmet needs of service users. In the advocate led user
groups, story fragments were exchanged in a seemingly chaotic
way that the research team initially found difficult to facilitate or
follow. Stories were not so much told as enacted and were often
centred on discussion of “what to do. Whereas some
organisations welcomed, successfully implemented, and
sustained the advocate led groups, others failed to do so. A key
component of the complex intervention was organisational
support.
Conclusions An action research approach allowed engagement
with an underserved group of health service staff and with hard
to reach service users. The study produced subjective benefits to
these groups locally as well as a worked-up complex
intervention that will now be formally tested in a randomised
controlled trial.
Introduction
Ethnic differences in outcomes of diabetes are largely explained
by differences in socioeconomic status, lifestyle choices
(smoking, diet, exercise), and access to services.
12
The most
vulnerable groups are hard to target with lifestyle interventions,
as they speak little English, are relatively isolated from
mainstream society, and have var iable knowledge of and motiva-
tion to use conventional health services.
3
Empirical studies of education in self management of diabe-
tes have been diverse in design, generally psychological in
perspective (that is, oriented towards individual beliefs, attitudes,
and behaviour), and heterogeneous in impact.
4–7
Our own team
has taken a more anthropological perspective (studying the
shared values and meaning systems that embed the individual
behaviour choices of members of a cultural group). Our previous
research showed that positive behaviour changes (such as giving
up smoking) in British Bangladeshis are almost always attr ibuted
by them to a story told in an informal setting by another Bangla-
deshi.
89
In this study we aimed to develop informal storytelling
as a complex intervention and evaluate its acceptability and sub-
jective benefits to patients and staff. Our theoretical framework
was action research, which focuses on change and improvement;
involves a cyclical process of collecting, feeding back, and reflect-
ing on data; explicitly and proactively involves participants (such
as clinicians, managers, bilingual health advocates, and service
users) in the research process; looks reflectively at questions that
arise from practice; and is educational for both researcher s and
participants.
10 11
The four year study was based in two inner London
boroughs and delivered through a local voluntary sector charity.
Details of the community and setting have been published sepa-
rately.
12
Methods
The action research cycle, described in detail elsewhere,
12
is in
some ways similar to the audit cycle, in that data are
systematically and successively collected in order to evaluate
progress towards a series of planned changes. The different
phases of this study had different goals, used different methods,
and were evaluated through different data sources, as
summarised in table 1. In addition, we asked an independent
qualitative researcher to conduct semistructured interviews with
all the research team one year into the project and again 18
months later. These interviews, and the focus group evaluations
of the advocate groups and user groups, were audiotaped,
transcribed, and analysed for themes by using the constant com-
parative method
13
; further details of the analysis are available on
request. We combined the different qualitative and quantitative
data sources in each phase to build up a rich picture of the prob-
lem area and inform the design of the next phase of action.
Results
We have presented the results as four overlapping phases corre-
sponding to four “spirals” of the action research cycle.
14
For each
phase, we have highlighted the particular findings that fed into
the design of the complex intervention (box 1).
Two extra tables and a summary of evidence on diabetes groups are on
bmj.com
page 1 of 6BMJ VOLUME 330 19 MARCH 2005 bmj.com
Phase 1: set-up
The background data sources in table 1 showed that the study
area had all the hallmarks of a deprived, under-resourced, multi-
ethnic inner city area. Despite commendable efforts by some
individuals and teams, vulnerable people with diabetes often
received haphazard care. Community based diabetes nursing,
dietetics, and chiropody posts were unfilled. Hospital clinics were
overcrowded, and advocacy services were severely stretched.
Very few primary care teams had special interest or training in
diabetes, although one or two practices provided an exemplary
service. As a result, delayed diagnosis of diabetes and its compli-
cations was common. At least five different organisations
provided advocacy and interpreting services to the public sector.
All were understaffed, and they communicated little with one
another; most perceived themselves to be in a state of crisis.
The main lessons from this phase for the design of our complex
interv ention were that it must be closely embedded in workforce
planning and human resource strategies and it should seek to create
a large pool of appropriately trained individuals rather than relying
on named staff remaining in post for the duration of the study.
Phase 2: training for bilingual health advocates
Our questionnaire data showed that the bilingual health
advocates (including link workers and voluntary sector interpret-
ers) were a highly diverse group, with formal education varying
from primary school to degree level. They dealt with huge num-
bers of clients with diabetes, yet few had had any training in dia-
betes and none had been formally trained in patient education.
Most of them rated their own knowledge and confidence in deal-
ing with diabetes as poor. Our qualitative data also revealed their
deep commitment to their most needy and vulnerable clients;
high personal workload; a strong tradition of didactic,
instructional educational methods both in their own training and
in their w ork with clients; lack of specific training for key aspects
of their role; lack of protected time for reflection or discussion
about difficult and stressful cases; and (in some) a profound feel-
ing of professional isolation. Almost none had any experience in
running groups, and all said that they would not be confident to
do so.
The lesson from these data for the complex intervention was
that in addition to providing a sound training in basic diabetes
knowledge, training for advocates must provide support, develop
the individual (self esteem, motivation, and professional identity),
and consider the process of learning (how it happens) as well as
content (what is learnt).
17
For this reason, we refined the training
into a supportive “learning set” format in which w e modelled the
principles of effective adult learning, group facilitation, and the
storytelling (“case history”) approach to exploring service users’
needs.
18–20
Attendance at the learning set was high (85% overall). We
documented high levels of satisfaction with the course in general
and the group storytelling approach in particular. We also
showed an appreciable increase in self assessed knowledge and
confidence in supporting clients with diabetes. In liaison with a
local community education and training organisation (“Making
Training Work”), we registered the 12 week course as a nationally
accredited training option with the London Open College Net-
work (“Storytelling for group learning in health and care”). We
wrote a trainers’ workbook, which includes a detailed syllabus,
formal learning objectives (reproduced in table A on bmj.com),
and a template for participants to use when writing up their sto-
ries.
16
The first lear ning set was restricted to 13 female Bangladeshi
advocates. In a subsequent course for a further 11 participants,
we included Gujarati, Persian, Somalian, Turkish, Arabic, and
Chinese speakers of both sexes.
Phase 3: bilingual health advocates in the work environment
After the training course, most advocates were confident in the
principles of diabetes care and keen to apply group based story-
telling techniques with clients. But most of them held low status
positions in complex multiprofessional hierarchies and had nei-
ther the authority nor the resources to set up and run such
groups. They and their managers needed considerable support
(most crucially, buy-in had to be negotiated with top
management and the medical and nursing hierarchies) to get a
pilot advocate led group going. The difficulties were often logis-
tical (for example, an advocate might not be allowed to
telephone a nurse without going through a manager). In some
cases, there was palpable resistance from middle management to
what was seen as a radical new service model (advocates leading
patient groups rather than doctors using advocates in a reactive
Table 1 Phases of the study and data collected
Phase Goals Main actions Data sources
1 Set-up Map the extent of diabetes and level of
diabetes care in the locality; develop
partnerships with key stakeholders; link our
own work to existing healthcare and
community development initiatives
Collect statistics on burden of disease and nature
and extent of services for diabetes (NHS and
voluntary sector); interviews with 35 people
representing 13 organisations (hospitals, general
practices, interpreting organisations, voluntary sector
ethnic health groups)
Publicly available epidemiological data (for example, from
local health improvement plan); published details of local
services (such as information supplied to general
practitioners); field notes from visits to stakeholder
organisations; interview notes
2 Learning set for
BHAs
Train a cohort of BHAs in the principles of
diabetes care and in running support and
education groups for clients with diabetes
Assess the background and experience of BHAs and
their perceived training needs and learning styles;
run two “taster” education sessions for BHAs, using
interactive exercises with “Post-it” notes to identify
and classify learning needs; develop and deliver a
curriculum in a format appropriate to these needs
Semistructured (qualitative) interviews with seven NHS
managers and two voluntary sector advocacy services; self
completion questionnaire sent to 21 BHAs to assess
knowledge, experience, and perceived learning needs (before
and after the training course) (18 returned); participant
observation in “taster” group sessions; Post-it notes and
flipchart paper from these sessions; focus group evaluation
of learning set led by independent qualitative researcher
3 On-site work with
BHAs
Support BHAs to pilot diabetes groups for
clients in their workplace
Work at organisational level to tackle human
resource problems for BHAs (job description, level of
autonomy, lines of accountability); support BHAs,
their managers, and the wider organisation in
establishing pilot groups and embed them in services
Ethnographic field notes from organisational visits;
interviews with advocacy services managers; interviews
with other diabetes staff (consultants, specialist nurses)
4 Diabetes groups
for service users
Set up and sustain BHA led education and
support groups for diabetes service users
Support BHAs in recruiting participants to groups,
running the groups, engaging other health
professionals in providing educational input, and
evaluating the groups
Quantitative data on attendance, random blood glucose
levels (measured by finger prick testing during the group);
qualitative data: participant observation of all sessions plus
one focus group of attenders during routine lunchtime
session, led by NB; tape recorded, translated, and
transcribed with consent
BHA=bilingual health advocates.
Primary care
page 2 of 6 BMJ VOLUME 330 19 MARCH 2005 bmj.com
interpreting role). Because of the major challenges encountered
in this phase, we added organisational support as a key compo-
nent of the complex intervention (box 1).
Phase 4: developing and supporting advocate led user
groups
Different advocate led user groups developed their own format
and identity. We describe one example here. St Lucia’s (pseudo-
nym) is a community centre on a deprived estate in East London,
attended mainly by elderly Bangladeshis. A regular women’s
lunch club had been established, and the attenders, despite hav-
ing lived in the United Kingdom for 20-30 years, spoke little
English. Many were strict Purdah observers and wore a burqua
covering all but the eyes. A straw poll at one of the lunches had
shown that around half of the women had known diabetes and
most had a first degree relative with the condition. A weekly “dia-
betes storytelling group” was established by word of mouth and
proved popular from the outset. It grew from eight to 42 regular
attenders in 18 months and developed in ways we did not antici-
pate. Participants were not willing to sit in a circle, taking turns
telling stories, nor were they willing to be organised or facilitated
by the research team (AC and NB attended all meetings, with NB
acting as inter preter; TG attended around one meeting in four).
They used us mainly as a resource, to answer questions about
medical issues or diet, or to comment on a story (often about an
encounter with a health professional). Much of the discussion
took the form of animated arguments between participants
about some or other aspect of diabetes, which we were often
Box 1: The complex intervention
Component 1—Bilingual health advocate training
1. Initial three hour “taster” session for advocates to identify and
reflect on their learning needs in relation to diabetes and group
support. Run as structured but informal discussion. Use small
group flipchart and “Post-it” exercises to establish a list of
potential topics and the level of interest and confidence in each
topic. Refine learning objectives and a syllabus for definitive
sessions
2. Definitive programme of 10 more formal, structured three
hour sessions, each on a different theme. Participants share
stories about clients in small groups (of three or four) and then
feed back selected “good stories” to a larger group facilitated to
reflect on clients’ unmet needs and professional educational and
support needs.
15
Stories, not textbook “facts, are used as the basis
for learning. Each participant must write up one story as
“homework” on a structured template, as shown in box 2
Component 2—Organisational support for establishing
advocate led groups
1. Engagement of top and middle management
2. Human resources support to modify job descriptions and lines
of accountability (for example, to allow an advocate to telephone
a diabetes specialist nurse without going through a manager)
3. Establish regular time and venue for group session and
implement referral mechanism (such as self referral, referral by
advocate, referral by doctor or nurse)
4. Engage clinicians to refer patients and support advocate led
initiatives
Component 3—Running advocate led user groups
1. Advocate establishes supportive and informal atmosphere
2. Participants encouraged to form their own informal
subgroups. Strong emphasis is placed on the telling of personal
stories about diabetes and its impact
3. At an early session (though not necessarily the first), themes
are suggested by group members for subsequent sessions.
Examples of themes include drugs, exercise, shopping, feeling
sad
4. Advocate organises appropriate health professional (if needed)
to attend themed session “to answer the group’s questions. At
these joint sessions, advocate acts as interpreter and presents
representative stories to the health professional, who is invited to
respond. Advocate ensures that the focus of discussion is on
“explaining why X happened in the story” rather than “giving a
talk on X. (See box 3)
5. Themed sessions should include action oriented activities
(such as cooking, self monitoring, looking at shoes, trying out
exercises)
Box 2: Example of a client’s story written up by a
bilingual health advocate (from a themed session on
“diabetes in the family”)
The story of Mrs Uddin
Mrs Uddin is a 35 year old Bengali woman. She is 20 weeks
pregnant and already has three children. Mrs Uddin recently
came to this country and was diagnosed with diabetes. She had to
face many difficulties. She was missing her family in Bangladesh.
Her husband works outside London and visits twice a week. She
therefore stays with her in-laws. Mrs Uddin was expecting her
husband to take her to the GP. She was feeling very tired. When
she eventually saw the midwife she found out she was diabetic.
She had to start taking insulin for which she was dependent on
others. Her grandmother and father had also been diabetic. Her
father had not taken care of his health and he died at the age of
50.
Learning she was insulin dependent was frightening for Mrs
Uddin and caused her to become depressed. She did not
understand why she had to take insulin and thought it might
cause her to die like her father. Due to language barriers that
existed, Mrs Uddin found it difficult to get the necessary help
when she needed it. She relied on her sister-in-law to inject her
with insulin, but she often had to wait long lengths of time for
her medication as her sister-in-law was busy. Mrs Uddin had been
to the hospital a few times. The linkworker and health advocate
had been regularly monitoring her progress and feeding back
the information to the health professionals.
Why did you choose this story?
Because of the many difficulties Mrs Uddin had to face being
diagnosed with diabetes away from home.
What questions or issues does this story raise?
Through the advocates Mrs Uddin realised that not taking her
insulin properly would result in detrimental effects on her
unborn baby.
What are the learning points?
Mrs Uddin became much more responsible for her own health
and had more help from her extended family once they had
gained knowledge about the condition and how to treat it. Mrs
Uddin did not previously
understand diabetes and found it difficult
to treat herself. After being advised by the linkworker and health
advocate, Mrs Uddin realised the seriousness of her
condition and
sorted out taking her medication regularly.
Tutor’s feedback to the learning group about this story
This story illustrates a number of issues common in a family with
diabetes. Firstly, there is a positive family
history and a “horror
story” of a relative with early death. Secondly, the family members
with previous experience of caring for diabetes are not the ones
who are around when a new case is diagnosed (in this case, because
they are back in Bangladesh). Thirdly, contrary to the popular
stereotype, the support from this Asian extended family is
inadequate
those who are competent to help also have their own
lives to lead. Finally , there is a strong suggestion of both guilt and
despair in the diabetic member: she is dependent on her relatives
but also conscious of being a burden to them.
Reproduced with permission from the ‘Sharing Stories’
workbook
16
Primary care
page 3 of 6BMJ VOLUME 330 19 MARCH 2005 bmj.com
called in to resolve. To a visitor, the group would have seemed
chaotic, with multiple conversations occurring at once and
women wandering about the room, coming and going as they
pleased, and often bringing friends or grandchildren with them.
One important finding from our observation at St Lucia’s
and other advocate led groups was the strong action orientation
(the groups were “doing” groups rather than “talking” groups).
For example, many women attended St Lucia’s to check their
blood glucose concentrations on our meter, even though we had
provided them with their own meters and shown them how to
use them. Interestingly, whereas the biomedical, individual care
model implies that people will compare their blood glucose
result with their own previous results, these women compared
their own glucose level with other people’s levels, a process that
led to reflection within the group, with comments such as “she
didn’t have a second helping and look, her result is better than
yours.
Another example of story enactment was when women
brought outpatient appointment letters or leaflets and passed
them around the group. Comments were provided in the form of
advice on “what to do. One woman, whom we thought had been
formally diagnosed as having diabetes and who had shown very
high blood glucose concentrations on our meter, disclosed that
her general practitioner had told her that she was “not diabetic,
despite her taking him copies of our readings. The other women
in the group followed the story of her repeated visits and became
a source of indignant affirmation that the woman should persist
in demanding a referral to a specialist.
Overall, the group’s mean glucose concentrations did not
change, as new attenders were often poorly controlled (indeed,
many were sent to the group by local primary care staff who were
concerned about their poor control). Glucose concentration in
longstanding attenders decreased over time, but the change did
not reach statistical significance. A focus group evaluation
(undertaken a year after the group began) was very positive. A
representative comment was, “If someone has diabetes and
doesn’t know what to do, they should come to the group first,
and they will learn what to do.
Whereas several other advocate led groups failed to become
mainstream for reasons set out in the previous section, the St
Lucia’s group described here, as well as one other group based in
a community hospital setting, has continued with core NHS
funding (both, incidentally, with diabetes specialist nurse
support). The longer term sustainability of these groups remains
unknown.
The lesson from this phase for the complex intervention is
that story based group intervention for minority ethnic groups
may look and feel very different from traditional diabetes group
education. Resistance exists to formal facilitation and to a pre-set
agenda. Stories are often fragmented and may be enacted rather
than told. The shared social event of reacting to the story and
discussing different interpretations and possible endings can
lead to both reflective learning and empowerment to take action.
A key outcome of the group in the eyes of the participants was
“knowing what to do about diabetes.
Discussion
This study has shown that action research is a feasible way of
developing complex interventions involving combinations of
service redesign, professional development, and user education.
Complex interventions need an extensive development phase to
optimise the components, implement delivery (including staff
training), and develop model explanations of mechanism before
being tested in randomised controlled trials.
21
Progressively
changing the focus of activity in response to participants’ needs
and priorities is an inherent feature of the action research design
and allows continual refinement of the intervention as the study
unfolds.
11
This leads to both immediate benefits for research par-
ticipants and an “optimised” intervention suitable for testing in
clinical trials.
Although the bilingual health advocate led diabetes support
group is a simple and appealing concept, we have shown that
setting up such groups involves at least three separate
components. Considerable effort must be put into training the
advocates who will run the groups, providing practical support
and specialist educational input to fledgling user groups, and
supporting organisations to adapt existing structures, roles, and
relationships to the requirements of the new service model. Only
when all this has been achieved can a definitive trial of the
efficacy of the intervention be started.
Because the user g roups are driven by individuals’ stories and
fuelled by their actions, each group will be different. This accords
with contemporary thinking that whereas the core principles of
a complex intervention (in this case, engaging the organisation,
developing the advocate as an independent professional, using
personal stories as a vehicle for learning, keeping the groups
informal but structured, avoiding didactic teaching, and
providing hands-on learning tasks) should be clearly set out,
considerable scope should be allowed for varying the
operational detail as teams on the ground adapt the intervention
to local needs and circumstances (for example, when and how to
approach key clinicians and managers, whether one or two
advocates should be present in each user group, whether people
can self refer to the group, and whether they can bring partners
or friends).
22
Depending on the qualifications, experience, and
Box 3: Example of an advocate led diabetes group
session
Sorting out our drugs
A bilingual health advocate led Gujarati group based in a
community hospital diabetes centre identified confusion about
drug treatment as a major problem. The advocate invited a
general practitioner with a special interest in diabetes to attend
the group. The group members emphasised that they wanted
help with their own particular drug (and drug combinations), not
a talk on drugs in general. Everyone brought their tablets, insulin,
or both along to the session.
The general practitioner was warned by the advocate before
the session not to “give a talk. The participants sat in a circle,
each with her drugs in a large carrier bag (which powerfully
showed how many drugs they were all taking). They took it in
turns to hold up a particular “problem drug” and describe the
difficulties they had with it. Such tales drew further stories from
the others in the group (for example, about gastrointestinal
problems with metformin). Much enactment and laughter took
place. Group members felt confident to tell the doctor through
the advocate that they often did not take the drugs. Facilitated by
the advocate, the doctor explained possible strategies for dealing
with side effects of drugs, including titration of the dose against
home blood glucose measurements, building up slowly to the
recommended dose, tolerating the side effect, or arranging an
interpreted consultation with their own doctor to negotiate a
change in drug. The advocate made it clear throughout that the
clinical management of individual members was not part of the
group session.
The information gained from the group participants in this
session led to the redesign of patient information leaflets about
drugs for diabetes.
Primary care
page 4 of 6 BMJ VOLUME 330 19 MARCH 2005 bmj.com
confidence of the advocate leading the group, different levels of
support will be needed from a clinician (such as a diabetes spe-
cialist nurse).
A theoretical limitation of user groups led by non-clinicians
is the danger that incorrect and even dangerous clinical advice
might be shared in the group. We did not encounter any such
examples in the groups we studied. Most discussion focused on
standard diabetes education topics (diagnosis, diet, exercise,
check ups) and comprised making sense of complex situations
(see example in box 3) and exchanging “how to” advice (cook
brown rice, swim in long dresses, and so on). The groups proved
surprisingly skilled at identifying areas in which advice from cli-
nicians was needed and sought this readily. Nevertheless, this
potential limitation should be a focus of inquiry in the next
phase of the research.
Our qualitative findings suggest that the mechanism by
which group participation might achieve positive outcomes is
not principally through acquisition of knowledge (although this
is clearly important) but by providing a forum in which
participants can negotiate the meaning of knowledge and by
prompting action. Although it is often assumed that education
occurs by the transmission of knowledge from an educator to
learners,
4
the reality in both the advocate learning set and the
user groups was that knowledge was repeatedly discussed,
reframed, and challenged by the group, and only then made
meaningful for the participants. As Friere put it, “Knowledge
emerges only through invention and reinvention, through the
restless, impatient, continuing, hopeful inquiry men pursue in
the world, with the world, and with each other.
23
Denning
(among others) has written of the powerful link between
storytelling in group situations and subsequent action by
individual participants.
24
Because of the detailed analysis of what
actually went on in the groups, this study has contributed consid-
erably to the research literature on group based education in
diabetes (summarised on bmj.com).
In conclusion, this study has provided unique insights into
the feasibility of setting up diabetes support and education
groups for both bilingual health advocates and service users and
into the process of learning, empowerment, and change in such
groups. The impact of the intervention should now be tested in a
randomised controlled trial.
We thank the service users, bilingual health advocates, and many other
stakeholders who participated so enthusiastically in setting up and evaluat-
ing the groups described here. Their names are listed in the “Sharing
stories” workbook. We especially thank John Eversley, Jill Russell, Anita Ber-
lin, and Farida Malik for conceptual and practical input at different stages.
Contributors: TG and AC had the idea for the study and developed it in
partnership with the multiple stakeholders referred to in the text. All
authors shared the fieldwork. NB translated and transcribed tape recorded
evaluation sessions. TG wrote the paper.
Funding: The study was funded by Diabetes UK.
Competing interests: None declared.
Ethical approval: The local research ethics committee approved the study.
1 Greenhalgh T, Griffiths T, Thomas K, Wheeler J, Raleigh V. Reducing inequalities in dia-
betes: report of the Expert Reference Group for the National Service Framework for Diabetes.
London: Department of Health, 2001.
2 Nazroo NY. The health of Britain’s ethnic minorities. London: Policy Studies Institute,
1997.
3 Blaxter M. Black and minority ethnic groups in England: health and lifestyles. London:
Health Education Authority, 1994.
4 Norris SL, Engelgau MM, Narayan KMV. Effectiveness of self-management training in
type 2 diabetes. Diabetes Care 2001;24:561-87.
5 Loveman E, Cave C, Green C, Royle P, Dunn N, Waugh N. The clinical and
cost-effectiveness of patient education models for diabetes: a systematic review and
economic evaluation. Health Technol Assess 2003;7(22):iii, 1-190.
6 Krichbaum K, Aarestad V, Buethe M. Exploring the connection between self-efficacy
and effective diabetes self-management. Diabetes Educ 2003;29:653-62.
7 Steed L, Cooke D, Newman S. A systematic review of psychosocial outcomes following
education, self-management and psychological interventions in diabetes mellitus.
Patient Educ Couns 2003;51:5-15.
8 Greenhalgh T, Helman C, Chowdhury AM. Health beliefs and folk models of diabetes
in British Bangladeshis: a qualitative study. BMJ 1998;316:978-83.
9 Greenhalgh T. Integrating qualitative research into evidence based practice:
development and evaluation of a complex intervention in diabetes. Endocrinol Metab
Clin North Am 2002;31:583-601.
10 Meyer J. Using qualitative methods in health related action research. BMJ
2000;320:178-81.
11 Waterman H, Tillen D, Dickson R, de Koning K. Action research: a systematic review
and guidance for assessment. Health Technol Assess 2001;5(23):iii, 1-157.
12 Greenhalgh T, Collard A, Begum N. ‘Sharing stories’: an action research project to
develop group education in diabetes for health advocates and ‘hard to reach’ service
users. Pract Diabetes Int 2005;in press.
13 Glaser BG, Strauss AL. The constant comparative method of qualitative analysis. In: The
discovery of grounded theory. Chicago: Adline, 1967.
14 Waterman H. Embracing ambiguities and valuing ourselves: issues of validity in action
research. J Adv Nurs 1998;28:101-5.
15 Eve R. Learning with PUNs and DENs
a method for determining educational needs
and the evaluation of its use in primary care. Education for General Practice 2000;11:79.
16 Greenhalgh T, Collard A. Sharing stor ies—a new approach to multiprofessional training in
diabetes care. London: BMJ Publishing Group, 2003.
17 Fraser SW, Greenhalgh T. Coping with complexity: educating for capability. BMJ
2001;323:799-803.
18 Kolb DA. The process of experiential learning. In: Thor pe M, Edwards R, Hanson A,
eds. Culture and processes of adult learning. London: Routledge, 1993:138-56.
19 Elwyn G, Greenhalgh T, Macfarlane F. Groups—a hands-on guide to small group work in
education, management and research. Oxford: Radcliffe, 2000.
20 Greenhalgh T. Storytelling should be targeted where it is known to have greatest added
value. Med Educ 2001;35:818-9.
21 Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et
al. Framework for design and evaluation of complex interventions to improve health.
BMJ 2000;321:694-6.
22 Hawe P, Shiell A, Riley T. Complex interventions: how “out of control” can a
randomised controlled trial be? BMJ 2004;328:1561-3.
23 Friere P. Education for critical consciousness. New York: Continuum, 1974.
24 Denning S. The springboard: how storytelling ignites action in knowledge-era organisations.
New York: Butterworth-Heinemann, 2000.
bmj.com 2005;330:628
Department of Primary Care and Population Sciences, University College London
Medical School, London N19 5LW
Trisha Greenhalgh professor of primary health care
Anna Collard independent social researcher
Noorjahan Begum independent social researcher
Correspondence to: T Greenhalgh
p.greenhalgh@
pcps.ucl.ac.uk
What is already known on this topic
Conventional diabetes education is often
inaccessible to patients who do not speak English,
and may be culturally inappropriate
Bangladeshi patients with diabetes attribute health
related lifestyle changes to stories told by other
Bangladeshis
What this study adds
Diabetes suppor t and education groups led by
bilingual health advocates and using a “sharing
stories” format are popular with staff and service
users
“Learning set” style training based on stories
about clients increases advocates’ confidence and
skill in running these groups
Organisational support is needed to implement
this service model
Primary care
page 5 of 6BMJ VOLUME 330 19 MARCH 2005 bmj.com
Commentary: Using patients’ narratives in complex research
RossEGUpshur
The use of narratives is attracting attention in health care as a
means of exploring and sharing experiences of health,
interactions with the health care system, and as a research
method, in and of itself. How narratives function as part of a
complex research programme is a less explored terrain. Green-
halgh and colleagues are to be commended for their innovative
and novel approach to creating an intervention for diabetes edu-
cation with the specific aim of engaging bilingual health
advocates to facilitate narrative or story telling approaches as a
part of a programme to improve diabetes management for a vul-
nerable and neglected population.
1
The study is itself part of a story. Like an early chapter in a
book, what we see before us is only an indication of what is to
come, and as with all good stories it clarifies some dimensions of
the plot but leaves others untold. Greenhalgh and colleagues
clearly show the difficulties and describe the barriers required to
get an action oriented research programme functioning, and
they are candid in both their successes and failures. It seems that
a user group led by a bilingual health advocate can be
successfully implemented in some circumstances, but not in all.
Considerable effor t is required to ensure the acceptability and
sustainability of the programme.
I wonder whether the authors have explored the possible
harms associated with this type of research. One of the
important findings was that participants did not compare their
blood glucose results to previous results, but compared their
results to each other’s: “She didn’t have a second helping and,
look, her result is better than your s. Considerable trust and sup-
port is required for this kind of disclosure and public discussion
of a personal narrative in a public or group setting. I hope that
victim blaming didn’t have an important role and that
surveillance, patrolling, and intrusiveness did not become a part
of the lives of the people who shared information about their
diabetes. An example would be a social occasion when people
say “You can’t eat that, you’re diabetic. The ethical demands of
action research are relevant but are rarely discussed.
The story of this study is not yet completed. This report will
leave readers anxious for the next installment. Greenhalgh and
colleagues have established the feasibility of establishing diabetes
support and education g roups with bilingual health advocates
and service users, revealing novel insights. They now propose a
randomised control trial. Will they engage their study communi-
ties in the creation of this randomised trial, particularly seeking
input from the group on the desired outcome measures and the
magnitude of effect expected by such an intervention? The
importance placed on outcomes by different participants in the
research process varies greatly. Narrative approaches are ideally
suited to capturing this diversity and I hope that, true to the
researchers’ methods, the community has as much input in the
conception of the randomised trial as it has had into the
development of this important study.
Competing interests: None declared.
1 Greenhalgh T, Collard A, Begum N. Sharing studies of complex intervention for diabe-
tes education in minority ethnic groups who do not speak English. BMJ
2005;330:000-0.
bmj.com 2005;330:631
Department of Family and Community Medicine, University of Toronto, Toronto,
ON, Canada M5T 1W7
Ross E G Upshur associate professor
Ross.Upshur@sw.ca
Primary care
page 6 of 6 BMJ VOLUME 330 19 MARCH 2005 bmj.com
... Sharing and listening to stories provides opportunity for participants to co-construct rich accounts of social experience, practices, values, motivations and speculations (Haigh & Hardy, 2011;Randall, 2014). Such narratives illuminate not only bodily suffering but also shed light on the configuration of care van Blarikom et al., 2023) and offer opportunity to rehearse alternative futures and catalyse re-configurations of care (Greenhalgh et al., 2005;Hawthornthwaite et al., 2018;Morgan, 2012). Drawing on design research, co-design principles, and the transformative power of storytelling (Brandt & Grunnet, 2000;Dindler & Iversen, 2007), we developed a tool and a strategy to narrow the gap between what-is and what-ought-to-be in the complex arena of 'higher risk' polypharmacy. ...
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... Biomedical, relational and socio-political framings of peer support are not incompatible. Greenhalgh et al's., (2005) narrative research with ethnic minority groups with type 2 diabetes, for example, demonstrated the benefits of combining medical and social understandings of health through a holistic peer support setting. Participants learnt key principles of biomedical management (e.g. ...
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... Charakteristisch für das Datenmaterial ist, dass die Teilnehmenden an beiden Pilot-Standorten das schweizerische Gesundheitssystem grundsätzlich als sehr gut bewerten. Ihre hiesigen Erfahrungen kontrastierten sie regelmässig mit jenen ihres Herkunftslandes: (Greenhalgh, Collard, & Begum, 2005). Tiefe nicht an diejenige solcher Interviews heranreicht, die in der Muttersprache geführt werden, was die Ergebnisse vermeintlich knapper erscheinen lässt. ...
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This is the last in a series of three articles Series editors: Catherine Pope and Nicholas MaysThe barriers to the uptake of the findings of traditional quantitative biomedical research in clinical practice are increasingly being recognised. 1 2 Action research is particularly suited to identifying problems in clinical practice and helping develop potential solutions in order to improve practice.3 For this reason, action research is increasingly being used in health related settings. Although not synonymous with qualitative research, action research typically draws on qualitative methods such as interviews and observation. Summary points Action research is increasingly being used in healthcare settings It is a style of research rather than a specific method Three elements are important: the participatory character of action research; its democratic impulse; and its simultaneous contribution to social science and social change (Credit: LIANE PAYNE) What is action research? Action research is not easily defined. It is a style of research rather than a specific method. First used in 1946 by Kurt Lewin, a social scientist concerned with intergroup relations and minority problems in the United States, the term is now identified with research in which the researchers work explicitly with and for people rather than undertake research on them.4 Its strength lies in its focus on generating solutions to practical problems and its ability to empower practitioners—getting them to engage with research and subsequent “development” or implementation activities. Practitioners can choose to research their own practice, or an outside researcher can be engaged to help them identify problems, seek and implement practical solutions, and systematically monitor and reflect on the process and outcomes of change. Most definitions of action research incorporate three important elements: its participatory character; its democratic impulse; and its simultaneous contribution to social science and social change.5 Participation in action research Participation is fundamental to action research: it is an approach which demands that participants perceive the need to change and are willing to play an active part in the research and the change process. All research requires willing subjects, but the level of commitment required in an action research study goes beyond simply agreeing to answer questions or be observed. The clear cut demarcation between “researcher” and “researched” that is found in other types of research may not be so apparent in action research. The research design must be continually negotiated with participants, and researchers need to agree an ethical code of practice with the participants.6 This is especially important as participation in the research, and in the process of change, can be threatening. 7 8 Conflicts may arise in the course of the research: outside researchers working with practitioners must obtain their trust and agree rules on the control of data and their use and on how potential conflict will be resolved within the project. The way in which such rules are agreed demonstrates a second important feature of action research—namely, its democratic impulse. Democracy in action research “Democracy” in action research usually requires participants to be seen as equals. The researcher works as a facilitator of change, consulting with participants not only on the action process but also on how it will be evaluated. One benefit of this is that it can make the research process and outcomes more meaningful to practitioners, by rooting them in the reality of day to day practice. Throughout the study, findings are fed back to participants for validation and to inform decisions about the next stage of the study. This formative style of research is thus responsive to events as they naturally occur in the field and frequently entails collaborative spirals of planning, acting, observing, reflecting, and replanning. However, care needs to be taken in this process as it can be threatening: democratic practice is not always a feature of healthcare settings. An action researcher needs to be able to work across traditional boundaries (for example, between health and social care professionals or between hospital and community care settings) and juggle different, sometimes competing, agendas. This requires excellent interpersonal skills as well as research ability. View this table:View PopupView InlineAction research typology (adapted from Hart and Bond)3 Contribution to both social science and social change There is increasing concern about the “theory-practice” gap in clinical practice; practitioners have to rely on their intuition and experience since traditional scientific knowledge—for example, the results of randomised controlled trials—often does not seem to fit the uniqueness of the situation. Action research is seen as one way of dealing with this because, by drawing on practitioners' intuition and experience, it can generate findings that are meaningful and useful to them. The level of interest in practitioner led research is increasing in Britain, in part as a response to recent proposals to “modernise” the NHS through developing new forms of clinical governance.9 This and other national initiatives (the NHS Research and Development Strategy, the National Centre for Clinical Audit, the NHS Centre for Reviews and Dissemination, the Cochrane Collaboration, Centres for Evidence Based Practice) emphasise that research and development should be the business of every clinician. Practitioner led research approaches, such as single case experimental designs,10 reflective case studies,11 and reflexive action research,12 are seen as ideal research methods for clinicians concerned with improving the quality of patient care.13 In considering the contribution of action research to knowledge, it is important to note that generalisations made from action research studies differ from those made on the basis of more conventional forms of research. To some extent, reports of action research studies rely on readers to underwrite the account of the research by drawing on their own knowledge of human situations. It is therefore important, when reporting action research, to describe the work in its rich contextual detail. The researcher strives to include the participants' perspective on the data by feeding back findings to participants and incorporating their responses as new data in the final report. In addition, the onus is on the researcher to make his or her own values and beliefs explicit in the account of the research so that any biases are evident. This can be facilitated by writing self reflective field notes during the research. The strength of action research is its ability to influence practice positively while simultaneously gathering data to share with a wider audience. However, change is problematic, and although action research lends itself well to the discovery of solutions, its success should not be judged solely in terms of the size of change achieved or the immediate implementation of solutions. Instead, success can often be viewed in relation to what has been learnt from the experience of undertaking the work. For instance, a study which set out to explore the care of older people in accident and emergency departments did not result in much change in the course of the study.14 However, the lessons learnt from the research were reviewed in the context of national policy and research and carefully fed back to those working in the trust; as a result, changes have already been made within the organisation to act on the study's recommendations. Some positive changes were achieved in the course of the study (for example, the introduction of specialist discharge posts in accident and emergency departments), but the study also shed light on continuing gaps in care and issues that needed to be improved in future developments. Participants identified that the role of the “action researcher” had enabled greater understanding and communication between two services (the accident and emergency department and the department of medicine for elderly people) and that this had left both better equipped for future joint working. In other words, the solutions emerged from the process of undertaking the research. Different types of action research Four basic types of action research have been identified: experimental, organisational, professionalising, and empowering (table).3 Though this typology is useful in understanding the wide range of action research, its multidimensional nature means that it is not particularly easy to classify individual studies. For instance, a study might be classified as “empowering” because of its “bottom up approach” in relation to the fourth distinguishing criterion of “change intervention,” but the other distinguishing criteria may be used to classify the same study as a different action research type (experimental, organisational, or professionalising). This situation is most likely to occur if the researcher and practitioners hold differing views on the nature of society. It may be more fruitful to use this typology as a framework for critiquing individual studies and, in particular for thinking about how concepts are operationalised, the features of particular settings, and the contribution of the people within those settings to solutions.15 Action research in health care At a time when there is increasing concern that research evidence is not sufficiently influencing practice development,16 action research is gaining credibility in healthcare settings.17 For example, the Royal College of Physicians in England has become involved in an action research study exploring the roles of clinicians, clinical audit staff, and managers in implementing clinical audit and ways of overcoming organisational barriers to audit.18 The NHS Research and Development Programme has commissioned a systematic review of the action research. Elsewhere Ong has used “rapid appraisal,” a type of action research, to engage users in the development of health care policy and practice.19 Lay participation in care in a hospital setting: an action research study Participation Careful negotiation to recruit willing volunteers to examine practice and initiate lay participation in care“Bottom up” approach to change via weekly team meetingsResearcher as facilitator and multidisciplinary team member Democracy Goal of empowering practitioners and lay people in this settingWorking collaboratively with multidisciplinary teamParticipants given “ownership” of the data to determine how it might be shared with wider audience Contribution to social science and social change Case study of multidisciplinary team on one general medical ward in London teaching hospital using: Qualitative methods to highlight key themes emerging in the project Quantitative methods for comparison of subgroups Main action-reflection spirals Reorganising the work of the ward: Changes in patient care planning New reporting system, including bedside handover with patient Introduction of modified form of primary nursing system Multidisciplinary communication: Weekly team meetings instituted Introduction of a handout for new staff and team communication sheet Closer liaison with community nurses before discharge Lay participation in care: Development of resources for patient health education Introduction of medicine reminder card system Patient information leaflet inviting patients to participate in care Results Insights into health professionals' perceptions of lay participation in careSome positive changes achieved (for example, improved attitudes to lay participation in care, patient education, improved ward organisation)Identified barriers to changing healthcare practice Action research has also been used in hospital settings to facilitate closer partnerships between staff and users, notably in a study which focused on the introduction of lay participation in care within a general medical ward of a London teaching hospital (box). This study used a range of methods, including depth interviews, questionnaires, documentary analysis, and participant observation to generate data about health professionals' perceptions of lay participation in care and the difficulties encountered in changing practice. 20 21 In this study, health professionals expressed extremely positive views about user and carer involvement when completing an attitude scale, confirming the results of previous research on health professionals' attitudes towards user and carer involvement in care.22 However, the interview data showed that they had some serious doubts and concerns, and observation of practice revealed that these doubts and concerns were inhibiting the implementation of lay participation. This action research was able to explore the relation between attitudes and practices and explain what happened when lay participation was introduced into a practice setting. It showed that although current policy documents advocate lay participation in care (user and carer involvement), some health professionals were merely paying lip service to the concept and were also inadequately prepared to deliver it in practice. By working closely with practitioners to explore issues in a practical context, the researcher gained more insight into how the rhetoric of policy might be better translated into reality. Further readingHart E, Bond M.Action research for health and social care. A guide to practice.Buckingham: Open University Press, 1995.Susman GI, Evered RD.An assessment of the scientific merits of action research. Administrative Science Quarterly 1978;23:582–603.OpenUrlCrossRefMedlineWeb of Science Conclusions Action research does not focus exclusively on user and carer involvement, though clearly its participatory principles makes it an obvious choice to explore these issues. It can be used more widely—to foster better practice across interprofessional boundaries and between different healthcare settings, for example. 14 23 It can also be used by clinicians to research their own practice.10 It is an eclectic approach to research and draws on a variety of data collection methods. The focus on the process as well as the outcomes of change helps to explain the frequent use of qualitative methods by action researchers. Footnotes Competing interests None declared. This article is taken from the second edition of Qualitative Research in Health Care, edited by Catherine Pope and Nicholas Mays, published by BMJ Books References1.↵Sackett DL, Richardson WS, Rosenberg W, Haynes RB. Evidence-based medicine: how to practise and teach EBM. Edinburgh: Churchill Livingstone, 1997.2.↵Hicks C, Hennessy D. Mixed messages in nursing research: their contribution to the persisting hiatus between evidence and practice. J Adv Nurs 1997; 25: 595–601.3.↵Hart E, Bond M. Action research for health and social care: a guide to practice. Buckingham: Open University Press, 1995.4.↵Reason P, Rowan J. Human inquiry: a sourcebook of new paradigm research Chichester: Wiley, 1981.5.↵Carr W, Kemmis S. Becoming critical: education, knowledge and action research. London: Falmer, 1986.6.↵Meyer JE. New paradigm research in practice: the trials and tribulations of action research. J Adv Nurs 1993; 18: 1066–1072.OpenUrl7.↵Webb C. Action research: philosophy, method and personal experiences. J Adv Nurs 1989; 14: 403–410.8.↵Titchen A, Binnie A. Changing power relationships between nurses: a case study of early changes towards patient-centred nursing. J Clin Nurs 1993; 2: 219–229.OpenUrlCrossRefMedlineWeb of Science9.↵Secretary of State for Health. The new NHS. London: Stationery Office, 1997. (Cm 3807.)10.↵Carey LM, Matyas TA, Oke LE. Sensory loss in stroke patients: effective training of tactile and proprioceptive discrimination. Arch Phys Med Rehab 1993; 74: 602–611.OpenUrlCrossRefMedlineWeb of Science11.↵Stark S. A nurse tutor's experience of personal and professional growth through action research. J Adv Nurs 1994; 19: 579–584.12.↵Titchen A, Binnie A. What am I meant to be doing? Putting practice into theory and back again in new nursing roles. J Adv Nurs 1993; 18: 1054–1065.13.↵Rolfe G. Expanding nursing knowledge: understanding and researching your own practice. Oxford: Butterworth Heineman, 1998.14.↵Meyer J, Bridges J. An action research study into the organisation of care of older people in the accident and emergency department. London: City University, 1998.15.↵Lyon J. Applying Hart and Bond's typology; implementing clinical supervision in an acute setting. Nurse Researcher 1999; 6: 39–53.OpenUrlMedline16.↵Walshe K, Ham C, Appleby J. Given in evidence. Health Serv J 1995; 105: 28–29.OpenUrlFREE Full Text17.↵East L, Robinson J. Change in process: bringing about change in health care through action research. J Clin Nurs 1994; 3: 57–61.18.↵Berger A. Why doesn't audit work? BMJ 1998; 316: 875–876.19.↵Ong BN. Rapid appraisal and health policy. London: Chapman Hall, 1996.20.↵Meyer JE. Lay participation in care: a challenge for multi-disciplinary teamwork. J Interprofess Care 1993; 7: 57–66.21.↵Wilson-Barnett J, Macleod Clark JMeyer JE. Lay participation in care: threat to the status quo. In: Wilson-Barnett J, Macleod Clark J, eds. Research in health promotion and nursing. London: Macmillan, 1993:86–100.22.↵Brooking J. Patient and family participation in nursing care: the development of a nursing process measuring scale [PhD dissertation]. In: London: University of London, 1986.23.↵Street A, Robinson A. Advanced clinical roles: investigating dilemmas and changing practice through action research. J Clin Nurs 1995; 4: 343–357.
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