Incorporating patients’ views and experiences of life with IBS in the development of an evidence...

Incorporating patients’ views and experiences of life with IBSin the development of an evidence based

self-help guidebook

Anne Kennedya,*, Andrew Robinsonb, Anne Rogersa

aNational Primary Care Research and Development Centre, The University of Manchester, 5th Floor,

Williamson Building, Manchester M13 9PL, UKbDepartment of Gastroenterology, Hope Hospital, Salford, UK

Received 25 March 2002; received in revised form 15 September 2002; accepted 2 December 2002

Abstract

To become active partners in chronic illness management, patients need relevant information which clearly explains treatment choices. This

paper describes a method of producing information to feed into production of a guidebook for people with irritable bowel syndrome (IBS).

Users were involved throughout the development process. Five focus groups were held involving 23 people with IBS out of 147 who

responded to a newspaper article asking for help with a study of self-care in IBS. Qualitative analysis of transcripts from these meetings

formed the basis of guidebook development. Patients described their experiences, coping strategies, experiences of the healthcare system,

treatments and social consequences of the condition. Medical literature searches were made to find answers to identified areas of information

need. The book includes direct quotes from patients describing their own experiences. Guided and practical ways of support are required for

people with IBS who want to self-manage their condition.

# 2003 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Self-care; Irritable bowel syndrome; User involvement; Patient information; Focus groups

1. Introduction

Irritable bowel syndrome (IBS) is characterised by

abdominal pain and altered bowel habit and affects between

10 and 65% of the population [1,2]. IBS accounts for a

significant proportion of demand in primary care. An

estimated 5–10% of the population consult their General

Practitioners (GPs) annually for IBS-related symptoms and

IBS accounts for 40% of referrals for gastroenterological

care [1,3,4]. Medical management of IBS has focused on the

alleviation of symptoms and has not been found to be very

effective, although good trial data on drug treatment is

lacking [5,6]. Whilst traditionally IBS is not recognised

as being a serious debilitating illness [7] there has been

little recognition of how IBS sufferers themselves perceive

the symptoms of IBS or how lay views and self-care stra-

tegies can contribute to the management of IBS. The chroni-

city, uncertainty surrounding the origin of symptoms and the

limited effectiveness of traditional medical management

suggested the need to develop a more effective self-care

illness management resource [8,9]. The study reported here

describes how information was developed with the aim of

empowering people with IBS to make decisions about how

their condition should be managed and self-care promoted.

There is increasing recognition of the importance of self-

care in the management of ‘uncertain’ conditions for which

there is no known medical cause or cure [6,10–12] and for

managing demand in modern health care systems more

effectively [13]. Reducing the need for professional input

may increase the cost-effectiveness and efficiency of care,

reduce ‘inappropriate’ demand and allow clinicians to focus

on patients with more severe and complex problems [14].

Research suggests that patients want to be more involved in

their own care, and increasing feelings of control are likely

to have significant health benefits [15–17].

Several means have been deployed to change and opti-

mise self-care behaviours. The more intensive self-care

programmes [18] have involved patient education and

instruction and have been designed to actively support the

development of self-care potential and the need to develop

Patient Education and Counseling 50 (2003) 303–310

* Corresponding author. Tel.: þ44-161-275-7601;

fax: þ44-161-275-7600.

E-mail address: [email protected] (A. Kennedy).

0738-3991/$ – see front matter # 2003 Elsevier Science Ireland Ltd. All rights reserved.

doi:10.1016/S0738-3991(03)00054-5

more meaningful and targeted information for patients to

enable them to care effectively for their own health problems

has been widely advocated [19]. However, methods to

develop the content of acceptable and appropriate informa-

tion and how this might constitute an element in an ‘whole

systems’ approach to self-management introduced in a

health service setting have received less attention. This

systematic approach developed at The University of Man-

chester implicates three elements: the involvement of

patients in the development of information, changing access

arrangements to health services and promoting a patient-

centred approach to care [20]. Most patients’ information

has been developed using a bio-medical model with one

of the main purposes being to educate patients so as to

increase recall and improve compliance with treatment [21].

Recently, because of the recognition that traditional educa-

tive information alone is unlikely to change behaviour, there

has been a movement towards a different model which draws

on the role of information in empowering patients [22].

Empowering patient information aims to encourage

patients to become active partners in the management of

their condition [23]. Information which reflects the priorities

of patients and uses informal lay and non-medical sources is

likely to promote an individuals’ confidence in their ability

to manage their condition [24]. The promotion of informed

choice also leads to the conditions necessary for shared care

with health professionals [25]. To achieve these aims,

patients need access to comprehensive information about

possible causes, treatment options and effective ways of

managing their condition.

Whilst there is increasing recognition of the relevance of

patients’ own illness experience and coping strategies on the

management and outcome of illness [13,26], there have been

few attempts to incorporate these as part of widely used

official guidelines or strategies within mainstream health

services. This paper focuses on the development of a method

of producing information to feed into the production of self-

care books for people with chronic conditions that involves

users throughout the development process [27]. In this

instance, we have used focus groups to explore people’s

knowledge and experience of IBS. This is in contrast to most

medical information, which tends to reflect what clinicians

want patients to be told or what they think patients may want

to know.

Table 1

Key questions used during the focus group discussions

Questions Prompts Time (min)

(1) Tell us your name, where you live and your favourite drink 5

(2) What made you decide to take part in this study? Cure 5

To learn from others

(3) What do you think caused your IBS? What doctor said 10

What triggers it for you

(4) What did you feel when you were first told you had IBS? Emotions 10

Experiences with doctor

Expectations of help

All in the mind attitude

(5) How did you find out more about your IBS? Doctor, family, friends, media 5

Mode of delivery and when

(6) What do you do that helps you with your condition? Medical treatments 20

Diet

Coping strategies

Alternative therapies

(7) What three things would you most like to know about IBS? Use flip-chart 5

(8) What are the most difficult things about life with IBS? People’s stories 10

Most useful medical advice

(9) How could a self-help book help you? Proven medications/treatment 15

What caused it

Non-medical self-care

Contents

(10) What is it about your IBS that most worries you? 10

(11) Do you keep any sort of record of your IBS? What? How useful are diaries 5

Medical information

(12) How do you describe your condition to others? Family, work 5

(13) What would you like your doctor to explain to you

about your IBS if he/she had time?

Stress management 10

Self-treatment

304 A. Kennedy et al. / Patient Education and Counseling 50 (2003) 303–310

Although originally developed for market research, focus

groups are used to bring people with a common experience

together and have frequently been used in health research

[28,29]. Focus groups were used in this study because of the

view that the group interview allows people to explore and

clarify their ideas in a way that is not possible in a one to one

interview [30]. The interaction amongst participants gives

the method a high level of face validity because discussion

allows confirmation, reinforcement or contradiction [31,32].

The patient’s perspective of living with IBS has been

explored using focus group interviews [33], the authors

found life with IBS was perceived as being frustrating

and isolating and that physicians did not provide adequate

information or support.

2. Methods

An article was printed in a regional paper [34] about IBS

asking for sufferers’ voluntary assistance in a study. Those

who responded were sent a questionnaire and asked if they

would be willing to participate in a focus group discussion

about IBS. Interested respondents under the age of 65 years

were contacted again (those over 65 were excluded because

of the increased likelihood of serious underlying pathologies

and other age-related medical problems). Twelve people

were allocated to each session to allow for the possibility

of non-attendees; a focus group with six members was

aimed at.

The focus group meetings were held over a 2-week

period. The same moderator and observer were present at

each meeting and each session was taped and transcribed.

Before the meetings, a series of key questions were devel-

oped [31] to give a structure to the discussion and to ensure

that important details were covered (see Table 1).

The tapes were transcribed and the findings were analysed

using the framework technique [35]. The transcripts were

read thoroughly and a framework was developed for the

analysis. Four main areas were outlined and these were

divided into 16 further sub-headings (see Table 2). Each

comment made was allocated to one of the sub-headings.

The charting was repeated for each focus group using the

same sub-headings.

3. Results

The newspaper article resulted in 147 responses, 101

people returned questionnaire and 73 were invited to attend

a focus group meeting. A total of five focus groups were

arranged (see Table 3) attended by 23 people. Further

meetings were not arranged because the five discussions

resulted in a saturation of viewpoints. People who had

wanted to attend meetings but who had been unable to do

so were sent draft copies of the guidebook to comment on in

order to ensure coverage of their views and experiences.

Each discussion lasted for between one and a quarter and one

and a half hours.

3.1. Lay causes and experience of IBS

Patient accounts distinguished between attributions

regarding the primary cause of IBS versus the occurrence

of subsequent flare-ups. The original causes of IBS were

Table 2

Framework used for the focus group analysis

Perceptions and expectations� Reasons for taking part� Expectations� Causes� Worries

Experience of IBS� Symptoms� Problems� Emotions

Information needs and sources� Questions� Sources� Doctors� Describing

Managing IBS� Coping� Diet� Drugs� Alternative and complementary therapies� Group support

Table 3

Details of those who attended the focus group meetings

Group Age Sex Who treats Years with IBS

1 51 F GP 10

1 51 F Self 25

1 29 F Self 2

2 49 M Consultant 6

2 40 M GP 1

2 58 F Consultant 5

2 53 F GP 16

2 60 F GP, consultant 7

3 62 F Self 4

3 60 F Self, GP, consultant 40

3 65 F GP, consultant Many

3 56 F Self, consultant Many


3 52 F Self Do not know


4 58 F GP Many

4 42 F Self, GP 11

4 48 M Consultant 3

4 50 F Self 30

4 59 M GP, consultant 28

5 62 F Self, GP 3

5 45 F Self, GP 5

5 50 F Self, GP 8

Mean 51.7 11.3

A. Kennedy et al. / Patient Education and Counseling 50 (2003) 303–310 305

attributable to possible causes such as surgery or an episode of

food poisoning or unknown environmental or genetic factors.

Whereas there was vagueness and uncertainty expressed

about the original cause, specific episodes (i.e. ‘flare-ups’)

of IBS were more definitively linked to specific events. These

were generally food- or stress-related and several women

linked IBS symptoms to their menstrual cycle. In line with the

mainstream medical view [36] ‘stress’ was identified both as a

dominant factor in originating aetiology and ongoing epi-

sodes. (This included work-related pressures, illness in the

family or a traumatic life event.) Whilst stress was reported as

a definite cause or trigger at the same time there was ambiva-

lence or animosity towards emphasising the association of

stress with IBS particularly in making contact with health

services because of its association with psychological rather

than physical genesis. The stress-related aetiology was con-

sidered to be a reason why health professionals did not always

take the severity of the experience of symptoms seriously.

Similarly the view that IBS is psychosomatic in origin was

considered to undermine the status of IBS being viewed as a

legitimate illness:

If I hear that word stress once more, I’ll slit somebody’s

throat. I just think it’s a cop out. To me IBS means ‘I don’t

know.’ (group 3, female)

Antipathy towards the linking of stress with IBS was also

bound up with the view that ‘stress’ was an aspect with

which people were given little constructive help in dealing

with by the health services as indicated by this woman’s

view of her GP:

She (the GP) said to me ‘‘You’ve got to learn to de-stress

situations because they will aggravate your condition’’,

but that’s as far as I get. (group 3, female)

The experience of having IBS ranged from occasional

discomfort to a major disruption of everyday life. The

symptoms discussed in greatest detail were those of pain

and abdominal bloating. The unpredictability of symptoms

can lead to disturbance of life-style and working life and

dealing with the negative reactions of others. There was

evidence too of negative emotional experiences of living

with IBS overlain by guilt and shame about having IBS

linked at times to expressed stigma from external sources.

These aspects are evident in this woman’s account:

I decided to finish in March. I didn’t want to but I was

losing a lot of time, then they had me in the office: ‘‘What

is irritable bowel?’’, and I was having to explain to them,

which was very embarrassing . . . I was told I shouldn’t be

in work by one woman, ‘‘Keep being off, you shouldn’t be

at work, handling foods.’’ I say, ‘‘Well, I’m not dirty.’’

(group 2, female)

At times this view of IBS prevented help seeking:

Support, I don’t ask for support because I feel ashamed of

what I’ve got. (group 3, female)

3.2. Managing IBS

People who have had IBS have usually had experience of

trying a range of treatments and remedies and have often

developed personal coping strategies. Such strategies were

frequently initiated in the context of disenchantment with

medical management. Most people who attended the focus

groups had had IBS for several years. They originally went

to their GP in the hope of a ‘cure’. It seems that disillusion-

ment sets in for most people after a period of contact with

services:

You don’t think it’s going to be so difficult, you see

wonderful things on television, or I have, I saw transplants

and ears grown on mice, so you get diarrhoea: well they’ll

fix it, (laughter) and they don’t, and you’re crying . . ..(group 2, female)

The process of making a diagnosis of IBS involves exclud-

ing other possible known causes for bowel disorders. This

can lead to a series of invasive medical investigations which

are likely to produce negative results. Additionally whilst

negative results can be a relief to some, they can lead some

people to express concern about the significance and uncer-

tainty of a diagnosis of IBS (e.g. ‘They couldn’t find nothing.

So I got IBS because they couldn’t find nothing.’). Most

people had obtained prescribed drugs from their GP. Whilst

for some people, drugs helped, others found that drugs

worked for a short time only and caused additional pro-

blems. People reported a variety of experiences with doctors.

Some people found their doctors were very supportive but

others felt they were being dismissed with no help:

to talk about the bowel is a bit of taboo subject you know, I

mean you spend ages trying to pluck up courage to go to

them in the first place, and if the GP just displays a lack of

interest, I mean where do you go, you know you’re left in

limbo, thinking all sorts. (group 4, male)

Whilst some respondents were prepared to spend large sums

of money on seeking any sort of help (in one case, this

amounted to over a thousand pounds) the use of comple-

mentary therapy was not always unproblematic. Cost, time

and worry over the credentials of therapists put some people

off seeking alternative treatments. Some people recognise a

need for assistance or facilitation of self-care that lay outside

the options that were currently available to them:

doctors are not the same as counsellors and sometimes

he’ll keep saying. ‘Are you doing it to yourself?’ If you sat

and talked it through with somebody who was trained to

sort of talk with you . . . it’s just that somebody has

listened to what you’re thinking about, not a sort of going

in and thinking you’re gunna get tablets or something.

(group 3, female)

Whilst for a few respondents IBS seemed to be an insur-

mountable problem and few felt in control of their IBS,

all participants described the use of a variety of coping


strategies. Adapting everyday life to IBS involves strategic

thinking and actions:

I don’t let it run my life, I won’t let things rule my life,

life’s too short. But I do take a few minutes each day to

think right, what am I doing today, look at the size of me, I

need some laxative, where am I going to go tomorrow, and

I manage literally from day to day and, using medication

and according to my lifestyle for that day, that week. I

could do without it though. (group 4, female)

Specific coping methods related to rest and diet. Diet

was the one aspect people felt they had most control over;

it was the topic that received the most attention in the

discussions. Worry was expressed about the impact of

poor quality diets on their condition. A few people had

sought help from experts on diet and recommending a

high fibre healthy diet was felt by some respondents to

be unhelpful:

One of the (doctors) had given me this leaflet, so I

stuck to it rigidly and I found it was getting worse. It

caused diarrhoea that was, you couldn’t control it. I was

walking round using nappies because I just couldn’t

control it after Bran Flakes and All-Bran and things

like that. I thought I was doing exactly what I was

told. (group 5, female)

One positive factor that emerged from the focus group

discussions was the benefit to people with IBS of meeting

and talking together about their problem. It could be said for

some people that actually coming to the focus group was a

form of therapy as they were able to speak freely without

fear of stigma as the following extract from a discussion

shows:

I have spoken more today about it than I ever could

because when you see a medical, there’s just you, you

know what I mean, but I, I know everybody else has

got embarrassing symptoms so . . . you speak more.

(group 3, female)

3.3. Information needs and sources

Health services and professionals are a key source of

information and support but some respondents felt that their

General Practitioners had very little knowledge about IBS

and that they were not able to provide support other than to

prescribe medication considered to be of marginal utility.

Medical practitioners were felt to be helpful when they

offered sympathetic support; people also appreciated an

explanation as to the physiology of the bowel in IBS.

However, some respondents questioned what the experts

told them and were unlikely to take the advice if they felt it

was at variance with their own experience. When asked to

clarify their information needs, all wanted details about the

causes, cures and long-term prognosis for IBS. Specific

queries on issues such as symptoms, stress and diet were

noted. Table 4 shows the reported sources of information and

their usefulness. Some people said they had not looked for

information because they thought none was available. Few

people had heard about the UK self-help group IBS Network

and only one person was a paid up member. However, once

told about the existence of such a group, other people were

keen on finding out more about it.

3.4. Guidebook development

The main aim of this work was to produce a self-help

guidebook for people with IBS. During a series of focus

groups, patients described their personal experiences, cop-

ing strategies, experiences of the healthcare system, treat-

ments and social consequences of the condition. Medline

Table 4

Sources and usefulness of information

Source Positive aspects Negative aspects

Magazine articles Show not isolated Repetitive

Give useful addresses Lack of helpful advice

Leaflets in shops Free Trying to sell a product

Simple advice

Books Detailed advice Cost

Getting access

Advice often not helpful

Support groups Show not isolated Getting access

Experiences of others

Practical self-help advice

Internet Source for books Getting access

Source for support groups Danger of unsound advice

Experiences of others

Medical journals and books Detailed information on diagnosis and treatment Getting access

No self-help advice


searches were undertaken to ascertain: evidence based areas

of medical treatment and areas of uncertainty and contro-

versy in treatment. The search strategy involved finding

recent comprehensive review articles on treatment for IBS

and published results of randomised controlled trials.

Review articles were hand-searched for references to origi-

nal research work. Specific searches were made to find up-

to-date answers to the most frequently identified areas of

information need and where good evidence exists for the

effectiveness of a particular treatment this is stated. As

analysis of the focus groups emphasised the support people

obtained from talking to each other about their condition, the

book includes direct quotes from patients describing their

own experiences.

The book includes basic facts about IBS, the workings of

the digestive system and healthy eating. It is structured so it

starts with a section using quotes to describe life with IBS to

emphasise that people are not alone in the symptoms they

suffer and to promote a self-help approach to management:

Just like period pains, I roll on the floor and I’m bloated

and oh, the wind is appalling.

I think self-help goes a long way. You’ve got to be realistic

and think ‘‘Well what’s causing this?’’ and think of a way

round it.

As some people found the lack of medical support hard to

come to terms with, a section on medical research was

included to explain various theories about IBS and the

paucity of evidence for effective treatments. The chapters

are ordered so that information on self-care activities (diet,

exercise and relaxation techniques to reduce stress) comes

first, followed by a chapter on complementary therapies and

over-the-counter treatments and ending with information on

medical approaches—prescribed drugs and psychological

therapies. People’s own experiences in managing IBS (both

positive and negative) are acknowledged throughout the

book by using quotes, to emphasise the lack of medical

knowledge about effective treatment of IBS and the impor-

tance of taking personal control.

The guidebook also aims to enable informed patients to

work more effectively with their doctor when necessary to

decide on suitable treatments and develop a management

plan. We believe that the method of development has

resulted in a source of information that can be utilised to

provide patients with plausible explanations for the way IBS

is managed, a need outlined by Dixon-Woods in a study of

medical and lay views of IBS [37].

The original focus group members and other people

with IBS reviewed drafts and redrafts of the book until

there was general agreement that the contents were right.

Patients also reviewed illustrations, colour, design and layout

before final decisions were made. The book is currently

being used in a randomised control trial of non-pharmaco-

logical approaches to the management of IBS in primary

care.

4. Discussion and conclusion

People who have gone through the various phases of an

illness are exposed to a range of personal and social events

associated with an illness. Over time, through learning from

personal experience, they become experts in understanding

and responding to symptoms. As a result of this they are in a

good position to provide knowledge which is useful to others

with a similar condition. Experience of developing a guide-

book for other gastrointestinal problems suggests that this

can effectively be incorporated into a self-care guidebook in

a way that complements and enhances existing methods of

illness management [26].

Rather than a one off encounter or single period where

training is delivered and received, bibliotherapy is increas-

ingly being used and has been found to be effective in self-

management programmes. Here the bases of acceptable and

appropriate bibliotherapy was established through focus

groups designed to tap lay knowledge which was then

systematically harnessed to a distinct product which could

be used efficiently and repeatedly by people. Echoing the

findings of others [38–40] the data obtained from the focus

groups showed a pressing need for people to receive mutual

support. People with IBS feel isolated and are worried that

this complaint, which so often dominates their lives, is not

seen as being serious by the medical profession. In the main,

they receive little constructive help or advice. Some people

persevere in their health-seeking activities, but most do not

and go on to develop their own management strategies which

vary in their complexity.

Use of focus groups to involve patients in the development

of information has been reported as a successful method by

others [41–43]. Patient-centred focus groups provide a

different perspective that complements medically orientated

evidence and reflect people’s every day experience of illness.

The focus groups highlight the difficulties people face in

getting appropriate information and in developing useful

management strategies. This work suggests that more atten-

tion needs to be given to the provision of information and

support which allows patients to develop and undertake self-

management. In the study reported here, the focus group

method proved an economical method of obtaining a wide

consensus on information needs and the lived experience of

IBS.

Limitations of this method are that participation in focus

groups is necessarily voluntary so it is unlikely that the

whole population of those with IBS was represented—the

mean age of the participants was high at 52 years and those

attending were predominantly female. Also, those who

participated in the groups attended mainly because they

were seeking outside help or were hoping to find a new

cure, 10 (out of 23) were receiving specialist outpatient care.

Many had a problem outlining successful coping strategies

and it is very likely that people who were managing their IBS

well were not interested in attending. However, those who

did not attend the meetings but who read draft copies of the


guidebook felt it represented their experiences and met their

information requirements.

4.1. Conclusion

Patient information is essential for shared decision-mak-

ing. Most information is not patient-centred and frequently

has no patient involvement at all. We suggest that all

information should involve patients at each of the develop-

ment stages or the end result may be of little relevance to

patients in the real world.

4.2. Practice implications

Patients with chronic conditions are an under-utilised

resource and are both eager to learn from others’ experiences

and pleased to be asked to help those who suffer with a

similar condition. They often have valuable insights into the

management of their condition and health professionals with

an interest in developing patient education resources need to

ensure they work closely with groups or individuals who

represent the eventual users of the end product.

Acknowledgements

This study was funded by the NHS Executive North West

Research and Development Directorate.

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