Patients’ cancer journeys in Kintyre - A qualitative study of the care, support and information needs of people with cancer and their carers.

 PUBLISHED in the European Journal of Oncology Nursing 2002 6:2 pp 85-92

 

Presented Dr John Atkinson BA PhD RGN NDNcert DipEd DNT

Senior Lecturer, School of Nursing Midwifery and Healthcare, University of Paisley Ayr KA8 0SR SCOTLAND email

Elizabeth Kennedy BA MPhil RGN ONC RNT RCNT

Associate Dean Research, Faculty of Health and Social Sciences

University of Paisley

Sarah Goldsworthy

Sheila Drummond RGN RM,

Lomond and Argyll Primary Care NHS Trust

 ABSTRACT

Although only a short flight from Glasgow, the Kintyre area of Argyll, Scotland is 4 hours by road.  Patients and their health providers face challenges when gaining access to cancer care services. As part of a Scottish, government funded project, examining current services for patients with cancer, an independent qualitative study was commissioned. The method comprised selecting 30 individuals who had received cancer services within the past 3 years. Using semi-structured interviews, critical incident techniques and prompts the researcher recorded patients’ stories. Two main forms of information were discovered.  Firstly, insight was gained into practical issues. These included how airport, health and other services operated. Secondly, the study discovered the importance of other factors in patients’ lives while they were undergoing treatment.  For example, patients’ experience if they had relatives living near the Glasgow treatment centres. The simple methods used in this study are generalisable in several settings particularly in communities where local factors may influence the experience of people receiving services from providers situated in a geographically distant location.  Perhaps the most important feature, agreed by all parties, was that the insights gained from this study may not have been gained using more ‘mainstream’ quantitative methods.

 

Keywords

Cancer

Patients’ experience

Rural and regional services

Qualitative research

 

INTRODUCTION

 

The experience of illness and healthcare is often markedly different for a patient than for a healthcare provider (Vastag and Beidler 1998).  Whereas the impact of clinical interventions on the disease, such as chemotherapy and radiotherapy, can be measured (using mainly quantitative methodology) the effect of the treatment on the patient’s life and experience can be more elusive and requires a more qualitative approach.  This may be seen particularly when the patient has a life threatening illness such as cancer.  This difference of experience may be exacerbated by other factors such as the geographical distance between patients from a remote rural community and health care providers in a major city (Campbell et al 2000, Desch et al 1992).

 

With government (Scottish Executive) funding, entitled the ‘Designed Healthcare’ initiative, the health providers in the Kintyre peninsular of Argyll, Scotland formed teams to examine services provided to people suffering from cancer (see maps and information in Figure One).  Aspects included chemotherapy, radiotherapy and possible treatment delivery locally.  As the teams’ work developed it became clear that their investigation lacked the patient’s ‘voice’ - the personal insight. 

The University of Paisley was commissioned to undertake an independent qualitative study examining patients’ experience of treatment.  This activity was to ensure that the health provider team considered services not only from a professional view, but also from those people who had received care and travelled to Glasgow (the primary provider of specialist health intervention). It was hoped that this work would lead to better, more relevant care in the future.

 

LITERATURE REVIEW

 

Work oriented to the experience, diagnosis and treatment of cancer underpinned the study. Blair (1999), a patient with cancer from Kintyre, described the ‘highs and lows’ of her experience and the impact of services and individuals on her and her family.  From the mainstream scientific field Campbell et al (2000) have described a cancer survival study throughout Scotland.  It was found that:

 ‘increasing distance from a cancer centre was associated with less chance of diagnosis before death for stomach, breast and colorectal cancers and poorer survival after diagnosis for prostate and lung cancers’ (p1863).

Exact reasons for these differences were not discovered, but late diagnosis and lower uptake of screening were thought to be contributory - this despite another, Glasgow based study, which recognised that rural populations tended to be more stable than inner cities (Ibbotson and Wyke 1995).  Resonance in the wider international literature was discovered in a study in Virginia, USA (Desch et al 1992 ).  Prevention and intervention were hampered by the inability to recruit personnel and the resources to buy support technology.  Similar to the Scottish experience, however, the study did not discover precise causal links to explain rural and urban differences:  ‘It is unclear whether rural access depends on the willingness or capability of the patient to travel or the primary physician’s decision to refer.  For example, the utilization of radiation therapy and chemotherapy differs substantially between urban and rural cancer population’ (Desch et al 1992 ).  The literature appeared to suggest that there were differences to be found between patients from city and country settings. Gaining insight into these differences became a focus for the study.  

 

Also important to the study was the importance placed by patients on various aspects of their journey and experience. For example another Scottish study, at the Beatson Cancer centre in Glasgow, showed that health and family were particularly important to patients in relation to their quality of life (Campbell and Whyte 1999).  So although aspects regarding disease and treatment were important, these wider factors were also included.  In her study with 35 Scottish women who had received treatment for breast cancer, Lugton (1997) demonstrated how a wide range of feelings, ideas and clinical information could be recorded and collated using simple home based interviews.

 

Design and Method: context and approach

 

Patients forming the sample were spread from Tayinloan in North Kintyre, including the island of Gigha to Southend near the Mull of Kintyre (12 miles east of Northern Ireland), an area of approximately 1000 square miles, including Campbeltown (population 6000) on the south east of the peninsula. Campbeltown has a general practitioner led hospital, with X ray, physiotherapy and occupational therapy services and maternity unit.  Consultant surgeons and physicians visit from Glasgow and Paisley.  Other general practitioners operate in villages around the peninsular. Generic community nurses are attached to these clinics.  Not long before the study a specialist cancer care nurse had been appointed based at Campbeltown hospital. 

 

In the UK the ‘social medicine’ model of a public National Health Service asserts that as long as an individual is registered with a general practitioner, s/he has the same rights of access to primary, secondary and tertiary services as any one else.  Services that require specialist expertise, complex technology and concomitant expense, such as chemotherapy and radiotherapy services are based in the main cities (in Scotland mainly Glasgow, Edinburgh, Aberdeen and Dundee) to ensure a ‘critical mass’ of patients, specialists, competence and resources.  In theory it was recognised by the study’s commissioning group that some chemotherapy intervention was possible in Kintyre.  In practice, however, this did not happen very often.

 

For the patients’ comfort and convenience interviews were offered in  patients’ homes.  Concise, simple techniques were therefore deployed to collect the data.  Carr (1999) describes how detailed evidence may be gathered in short interviews.  Although Carr concentrated on telephone interviews the importance to this study of the work was to demonstrate that the researcher does not necessarily have to ‘live’ with the study sample to gain useful qualitative data. In another study, of informal carers of people with cancer, Rose (1999) described the importance of patients’ carers, their expectations, opinions and worries during what is a frightening and bewildering time.  Patients’ carers and partners were therefore included, with the individual patient’s consent.

 

Rationale for a qualitative approach

Quantitative, statistical analysis is not always desirable when describing more complex experiences as it may hide anindividual’s experience, as the emphasis is placed on frequency of phenomena and their representative nature.  Qualitative analysis recognises events because they are thought important enough to report.  Also the cumulative effect of events is often greater than the sum of its parts, the “gestalt” effect, described by, among others, Patricia Benner.  The study has taken some of her techniques of recording (Benner 1984). The principle author has used these techniques before to beneficial effect with homeless men (Atkinson 2000).   In relation to patients suffering pain Carr (1999) highlights how qualitative methodologies have often been ignored;

 ‘yet they offer understanding and perceptions people have of their own world and how this affects their action’ (p 199). 

 

Data Collection: critical incident recording

The study used the taking of contemporaneous notes and Critical Incident Technique, particularly in relation to the collection of significant events and their analysis (Patton 1990, Burnard 1991, Flynn 1988, Dunn and Hamilton 1986, Flanagan 1954).  The system is simple at the point of entry and enables collation and analysis at a later date.  This study did not use Critical Incident Technique to establish high and low standards (Norman et al 1992).  It used the method of collating data into themes. Norman and Parker (1990) used this technique in an investigation with psychiatric patients encountering hostel life.  The technique is achieved by the use of Comments, Themes and Paradigms.

Comments are short sentences or phrases recorded in a diary or on the interview sheet. Comments form the basis for Themes.  The collection and collation of comments enables the researcher to identify certain themes that give insight into the experience of the sample patients.  The technique has similarities to grounded theory in that the researcher absorbs the data from the subject without the ‘lens’ of an external theory.  Grounded theory, however, tends to take a broader base of data and by analysis explain phenomena developing new theory generalisable to other situations (Strauss and Corbin. 1998 pp275-280). This study used a more focussed approach, concentrating on the patient’s particular ‘cancer’ experience (no reference was made to differing living conditions or other social factors for example).  The primary focus is to witness and record the patient’s side of the story, no generalisable theory is mooted although it is hoped that readers experience insight.  To ensure that the findings represent a true record the participating patients had full access to the final report.

 

Paradigms are stories that describe a situation better than the description of its constituent parts and are also used to exemplify themes.  The main aim of the paradigm is to present a story that has created a change of the researcher’s perception (a paradigm shift) or knowledge.

In practical terms the researcher (principle author) kept a contemporaneous diary (a lined cash book, enabling coding) in which he recorded comments and paradigms.  He also made margin notes on the patients’ forms during interview.  The technique is simple and concise, requiring minimal equipment and documentation. This proved to be beneficial when working in remote country areas in bad weather.

 

Method

The Kintyre project team arranged the interviews with a convenience sample of 30 individuals who had received oncology services within the past 3 years. Discussion was undertaken as to the validity of using a convenience sample.  Two features emanated from the discussion.  Firstly, evidence was not to be weighted by frequency but by the importance assigned by the individuals.  It was accepted therefore that the evidence of the 30 individuals, may not be a complete account of all patients but a starting point to further interaction.  Secondly, an initial convenience sample was examined for the individuals’ age, gender and disease type.  If the sample had been over represented by any variable a more ‘balanced’ sample would have been devised.  The sample was, however, well ‘spread’ as may be witnessed in Figure One.

 

The researcher was only provided with the name and address of each participant.  Participants sometimes chose to be accompanied by their partner or other person. The researcher estimated interviews at half an hour.  However, if the participant wished, the interview would continue for longer.  The participant was able to stop the interview at any time.  The interview usually took place in the participant’s home but, on request, two interviews took place in the participants’ places of work.  Ethical permission was sought and gained.

 

The Interview

Participants were encouraged to highlight features of their cancer ‘journey’, that is when elements of the journey went well, went badly, went as expected or not as expected.  Prompt questions were utilised. The purpose of the prompt questions was to assist the participants marshal their thoughts and help them remember. For example,from Campbell et al 2000 and Blair 1999;

When did you first think you were ill? 

How long was it before you went to the doctor? 

How long did you have to wait for an appointment? 

As the conversation developed the participants covered many of the question topics themselves.  The questions were discreetly proffered to lead the conversation into new areas.

 

RESULTS

SPECIFIC THEMES

Reported below are the specific areas of observation and concern raised by the study sample.  Themes are highlighted in Italics in the text and where appropriate these are exemplified by paradigms.

 

Presentation, diagnosis, referral for treatment

Many patients stated ‘I didn’t feel ill’. Complementary to this theme was the patients who described recurrent other illness as part of their journey before their cancer diagnosis.  One patient described two years of persistent back pain and treatment from the family doctor, subsequent investigations discovered bowel cancer. Another patient had persistent coughs and another infection, lung cancer was eventually diagnosed.

 

At the early stages of the journey nobody was directly responsible for giving the patient travel, welfare and other information.  Combined with this was the vital role of the family doctor ‘setting up’ the ancillary services at the diagnosis stage.  Patients who had services organised from the beginning found that this continued throughout their treatment journey.  Conversely those who did not often found that they never ‘caught up’. Most patients interviewed attribute the success or failure of these elements to the family doctor’s actions at an early stage. The overarching theme here is that administratively speaking there was no journey, only individual, often arbitrary, events, as seen in this paradigm

‘Well one morning I arrived at Campbeltown airport and there were five of us going to hospital.  When we arrived at Glasgow four taxis arrived to pick us up.  It was like the Oscars!  Only one was left behind, so we said to the taxi driver ‘can’t you take them’ and he said ‘no’. I don’t know what happened to them.’

Another patient described how they never had a taxi arranged for them and how they were ‘ripped off’ by taxis every time and how the taxi drivers called the journey the ‘teuchter’ or ‘hielan’ (derogatory Scot’s terms for highlanders) run and how the patient felt upset by this experience.

 

THE PHYSICAL JOURNEY – TREATMENT IN HOSPITAL AND AT HOME

 

Clinical aspects – investigations – consultants

There were very few patient experts. Unlike diabetes mellitus or chronic renal illness, for example, patients do not have the opportunity to ‘learn the ropes’ and how to manipulate their clinical environment.  A few of the patients had developed this knowledge either from previous experience or from the unusual nature of their cancer.  For example:

‘I always nick in to have my blood taken when I arrive, then I don’t get held up later’

‘I tell the secretary to tell the consultant I’m off the plane, so’s I don’t get held up’.

‘So I said to the consultant ‘Why can’t I have this instead’ and he said ‘Yes’

 

Patients reported that treatment tended to be presented as a package without many options.  This seemed satisfactory to most people.  Several said ‘I don’t want a lot of detail’ but all patients valued how doctors and nurses were, in the main, willing to give more details if asked.

As there were no patients in the sample who did not want treatment it was difficult to gauge how clinical services respond when an individual has misgivings about treatment at all.  From the evidence one had a feeling that the attitude of cancer specialists was very positive ‘This is what you’ve got, this is what we’re going to do’, which seemed to be welcomed by patients.

 

Some patients took the opportunity to learn more about their cancer.  Those with breast cancer often learned more because of the possible impact of cancer on their daughters and other female relatives. Some patients, with prostate and bladder cancer in particular, had the experience of not knowing how ill they were. 

‘Is it cancer?’ one said ‘I’ve never been told.  Of course I know it is because over the past years I’ve come to realise it’.  Another patient said.

 ‘I want to know how ill am I? I went to the dentist for treatment and had to fill in a form about present treatment and I didn’t know what to put about my present state of health.’

Campbeltown interventions

A few patients had received treatment in Campbeltown .  Many patients liked the idea of receiving treatment nearer home.  Strong themes emerged regarding home or local treatment.  Chemotherapy at home can be ‘frightening’ particularly if the treatment doesn’t go to plan. Patients described how there was no ‘back up’ if something unusual happened. Patients perceived that very few treatments were ‘off the shelf’. Patients described how alterations had to be made to their treatment because of their condition and/or following the results of investigations. 

 

Lay terms

The use of lay terms for treatment was often confusing, unless the health worker ensured their ‘message’ was precise.  One patient blamed him/her self for not getting the right treatment after a very painful experience with one type of bladder washout

 ‘I‘d had this washout thing before and it was very sore, I couldnae walk after it.  Sometime after this consultant says ‘Well we’ll give you this treatment which is just like a wee washout’ and I said ‘No way it’s too sore’.  So he didn’t give it me.  Then I found out that it wasn’t the sore one but another one.  I felt bad because I’d mouthed off and hadn’t got the right treatment’.

 

Connected with this theme was a tendency of some health workers to describe the impact of the treatment on the cancer not on the patient’s ability to function. One patient graphically put it

‘The nurse was ever so good.  She told me how the treatment would attack the cancer in great detail, but she didn’t tell me whether I would wet myself on the way home’.

 

Oban-Paisley-Campbeltown ‘loop’

Because of Health Board administrative areas, patients were sometimes sent to Oban (town at the top of the Kintyre peninsular) Hospital overnight. They would then go for a ‘scan’ at the Royal Alexandra Hospital in Paisley (town near Glasgow), return to Oban, for no apparent reason, stay overnight, before coming home. This angered many patients.  At first the researcher thought this was a dislike of particular hospitals.  This appeared not to be the case.  Some of the patients had been to the named hospitals for treatment and had no complaint.  What they disliked was being ‘messed about’ when nothing was being done and their illness was beyond the powers of ‘local’ hospital services. In particular were those with secondary cancer who had to ‘go back to square one’ after treatment at a Glasgow centre. When a secondary cancer emerged they had to go through ‘all the rigmarole’ of going through the ‘loop’ before eventually being re referred to the Glasgow centre again.

 

Transport

The Transport Services Ambulance was unpopular and seen as inappropriate. ‘That bus is a disgrace’. Essentially the grievance was that a transport ambulance designed and built to ferry patients a few miles to outpatients’ appointments in town was being used to take frail people on 300 mile round trips. 

Airport security was sometimes insensitive. Patients describe how they were sometimes made to stand up in their wheelchairs after chemotherapy.  One person described having to remove their hat after losing all their hair and how embarrassing and shameful this was.

 

A number of patients mentioned how irritating the ticket system is for the planes.  One said ‘It’s as though you’re going to San Francisco.  Why don’t they use our hospital numbers or something.’  The airlines did not make any distinction between local and international flights, this made the process seem overly elaborate.

 

THE PERSONAL JOURNEY – PERCEPTIONS, SUPPORT AND CARE, FAMILY ISSUES

 

Two patients kept diaries and told the researcher how it helped them make sense of some of the experiences, as well as giving them a feel for the time-span. Some people wanted to go it alone, others liked to be with family and friends. Establishing whether the patient wants company or privacy is very important. Patients were glad when  other patients, helped them ‘learn the ropes’ and discussed what appeared to be limited choices. Lack of personal expertise by some patients was blamed for staff attitudes. They felt they were not listened to by staff and were ignored regarding their treatment. 

One patient stated:

 

 ‘ The consultant saw me on Monday and said I was to have...[describes medical procedure] Anyway the nurse came up next morning and told me I was going to get my normal treatment, which was the opposite of what the consultant said.  I told her what the doctor had said, but she ignored me and so did two other nurses.  Well when the doctor came round ... he was bloody mad and said that the whole week’s treatment had been wasted.  All because they had not listened to me.  I mean they could have gone and checked it out couldn’t they?’

 

One of the major impacts on an individual’s personal cancer journey was the suffering of a close relative or friend with cancer at the same time.  Speaking to patients in this situation the researcher witnessed how sometimes the patient’s own cancer seemed peripheral to them – ‘I’m bad but they are worse’. 

 

Companionship, and contacts in Glasgow

Perhaps the two most important influences on the patient’s personal journey were the presence of another patient from Kintyre undergoing treatment at the same time and if the patient had contacts/visitors and/or a place to stay in Glasgow.  Being together with someone else (seen particularly in the breast cancer patients) had the effect of the practical ‘learning the ropes’ and the emotional support and ‘stiffening resolve’.  Some patients found it difficult to talk about the cancer with their close family but much easier with their ‘buddy’.  Having contacts and or a place to go in Glasgow made the cancer journey much easier for all those affected.  The impact of these contacts was the difference, to some, between a totally negative experience and one that was bearable.

 

OUTCOMES- FOLLOW-UP, REDIAGNOSIS, OVERALL PERCEPTIONS

In terms of discharge policies it was seen that discharge policies need flexibility. A longer period in hospital is sometimes required, to deal with drains and infections for example, as back up services are sometimes limited and it is more difficult to return to hospital quickly.

 

Diagnosis of secondaries – back in the loop

The combined experience of those who suffered secondaries or further cancers was not good.  They found ‘going back to square one’ - that is back to the family doctor, back to Oban or first referral and eventual progress to cancer specialist - frightening and frustrating. One patient who had recurrent skin cancers experienced this 3 times said.  ‘Each time it was as though I was a completely new patient’

 

From a resolvable, organisational view an important point made is the Outpatients’ ‘ double follow-up’.  When a patient received surgery and chemo/radiotherapy they received two sets of outpatients’ appointments.  In the case of surgery in particular the appointment appears to be a more administrative ‘signing off’ function, rather than an exercise of clinical efficacy.  One patient described it thus.

 

‘We took four and a half hours to get there on that day, in that silly bus, so we were all a bit stiff.  I was sitting waiting to go into the doctor [surgical registrar].  I was called into see him.  I noticed the time was 20 minutes to one.  I went in and sat down.  He said ‘Hello, how are you?’ I said ‘Fine’.  He came over and squeezed my tummy [she made a squeezing motion with her fingers twice] and said ‘OK that’s fine’.  I came out and looked at the clock.  It was 17 minutes to one.  Then it was four hours home again’.

 

SUMMARY, FUTURE RESEARCH, CONCLUSION

 

It is important to emphasise that the overall experience of patients on their journey at the hands of their carers in Kintyre and Greater Glasgow was positive.  With notable exceptions patients felt they had been treated appropriately and well.

 

Two main forms of information were discovered.  Firstly, insight was gained into practical issues. Secondly, the study discovered the importance of other factors in the patients’ lives while they were undergoing treatment, in particular patient ‘buddies’ and contacts in Glasgow.  In terms of future research the fact that so many patients did not feel ill suggests that further work on the uptake of screening services in rural areas, with comparison to urban patterns, could be useful. 

 

The diversity of practical, emotional and other responses found in this study is mirrored in other recent studies.  In particular, an Irish study describes women’s experience of discovering breast lumps. Coping strategies combined practical problem solving alongside emotionally focused responses (O’Mahony 2001).  These inter-linking factors were certainly demonstrated in the Kintyre study, where worry for other members of their family sometimes made the individuals own cancer, appear peripheral. A recent report on the BBC Radio 4’s ‘Women’s Hour’ (4 October 2001 available online) programme highlighted a study of inequalities in cancer care.  Dr Michel Coleman from the London School of Hygiene and Tropical Medicine, described a qualitative study which discovered similar themes to those discovered in Kintyre in deprived cities in the UK.  Of particular note was the lack of a cohesive administrative journey or pathway on which the patient could progress.  Also significant was the role of individuals who were central ‘lynch pins’ to their family and who subjugated or hid their illness for as long as possible (McPherson and Leydon 2001).

 

Although this was a multidisciplinary study rather than specifically nursing, three of the four authors are nurses.  It is suggested, therefore, that the research techniques and the findings are particularly germane to nurses.  In particular the areas of clear communication, listening to the patient, discovering individual and local needs, assisting liaison between services are all primary functions of generic and specialist nurses.

 

The general finding that developing services near home were not as important as a focussed well co-ordinated use of present resources also suggests the need for further work.  Using the findings the Kintyre project team are examining the central co-ordination of treatment and travel packages into an integrated, planned service.  It is suggested that Kintyre may not be unusual and that studies of this nature may be appropriate in other communities.

 

In terms of the outpatients’ follow up with hours of journey time for appointments of a few minutes - at present video linking is not used commonly in the UK National Health Service.  This state of affairs may seem increasingly unreasonable given the relatively low cost, simplicity and availability of information technology. At present the administrative procedures used by hospital professionals involved appear to have been constructed without regard for the relative costs and benefits of visits by remote (and ill) patients. 

 

Following a final report the research team and commissioners came together.  The findings resonated with workers’ experience.  A number of current patients, separate from this study, had been assisted to keep diaries. Early analysis of the diaries demonstrated agreement with this study. Of interest to the research team, however, was the difference in emphasis of patients’ keeping contemporaneous diaries and those in this study, who were generally reflecting on events in the recent past. The diaries appeared to convey the ‘present’ discomfort, pain and frustrations of patients in precise detail whereas the 30 patients in the study tended to describe these features in more general terms concentrating on their impact on the whole experience.  It is suggested that further research using both contemporaneous and retrospective samples may be beneficial.

 

Although the content and results of the study are place specific, the design and method, it is suggested, is generalisable and appropriate for many areas of patient/service interaction.  In practical terms the researcher only carried a notebook, short interview form and a pen. He used a car but mostly walked (often in pouring rain). The research team has completed further work using a similar model in another area with parents of severely disabled children. 

 

The authors, and many of the patients, suggest that the insights gained in this study would have been difficult to obtain by more ‘mainstream’ quantitative methods concentrating on describing the structure, function and process of the service. This study has succeeded, it is hoped, in gaining insight into the content, meaning and value of the patients’ experience.

 Figure Two  Frequencies - General Themes

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