Breast cancer care: women’s experience

Breast cancer care: women's experience

ANDREW BOTTOMLEY, BSc (Hons), Associate in the Development of Psychosocial Interventions, Cancer

Support Centre, Duckworth Lane, Bradford & LYNN JONES, PhD, Department of Education, University of

Manchester, Manchester, UK

BOTTOMLEY A. & JONES L. (1997) European Journal of Cancer Care 6, 124±132

Breast cancer care: women's experience

Medical treatments for breast cancer are undergoing rapid change. Studies of the management of breast

cancer have investigated the psychosocial consequences of the diagnosis as expressed by the patients

themselves, but infrequently relate these women's views directly to improvements in health care

systems. The following study explores the experience of 18 women recently diagnosed as having breast

cancer. The findings illustrate to both clinicians and managers the importance of considering a number of

dimensions relevant to the psychosocial care of patients and suggest areas where health care systems may

be modified to address the psychosocial needs of women. The results demonstrate the positive impact

patient views can have on the development of health care services.

Keywords: breast cancer, treatment experiences, psychosocial care.

Psychosocial

INTRODUCTION

In the UK each day 59 women will discover that they have

breast cancer and 35 women will die from breast cancer

(Cancer Research Campaign 1989). Such has been the

burden of the disease, that frequently the British Govern-

ment has focused resources and efforts on screening

(Bottomley 1995) and clinical management in an effort to

improve survival. Limited initiatives by the government

have been used to improve the psychosocial care of

women diagnosed as having breast cancer through listen-

ing to women's own voices.

It is crucial that a balanced approach is adopted,

improving not just clinical standards, but listening to

patients' voices on their care and taking these into

account when providing a breast cancer service. In the

USA many studies have been published over the last

decade which reflect the value of patient choice of health

care of breast cancer patients (Grobe et al. 1982, Ganz et

al. 1985, Houts et al. 1986, Longman et al. 1992). Evidence

from these studies suggests that the needs of the patient

should be evaluated and accommodated into hospital-

based practice, thus leading to improvements in psycho-

social well-being. Unfortunately, whether or not such

improvements occur within the health care system is

infrequently reported.

In the UK there have been fewer studies reported that

examine the views of women with breast cancer on their

health care specifically and that explore the implications

of the psychosocial care of these women. This is an

important omission, given the government's sweeping

reforms that have affected the National Health Service

since 1991. These split the state-funded health care

system into providers (hospitals, doctors, etc.) and pur-

chasers (Health Authorities). The purchasers are allocated

funds directly proportional to the size of the population

within a given district and are able to purchase any health

care deemed valuable.

Purchasers now have new powers of influence, which

affect the quality of overall care. For example, they may

refer patients to the most modern and rapid diagnostic and

treatment centres or to providers who offer a higher level

Correspondence address: Andrew Bottomley, 14 Burniston Close, Wilsden,

Bradford BD15 0LR. E-mail: [email protected]

European Journal of Cancer Care, 1997, 6, 124±132

Paper 021 DISC

# 1997 Blackwell Science Ltd.

Ahed

Bhed

Ched

Dhed

Ref marker

Fig marker

Table marker

Ref endRef start

European Journal of Cancer Care

# 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 124±132 125

of care than other providers; they may purchase che-

motherapy from local rather than regional providers.

Clearly, such increased powers carry with them the

responsibility to ensure the highest clinical and psycho-

social care for patients.

National charities, such as the Cancer Relief Macmillan

Fund (CRMF), have encouraged women affected by breast

cancer to take the opportunity afforded by the reforms to

demand a minimum standard of care (e.g. access to

psychosocial support, information on all support services

and treatments). Additionally, national pressure groups,

such as the UK National Breast Cancer Coalition, are

being established which place a high priority on patient-

based services and the role of women in deciding their own

care, on the basis of sound information and with

psychosocial support. To this end, they advocate research

into patients' needs and quality of life issues for breast

cancer patients.

The recent national review of cancer services conducted

on behalf of the UK government (Department of Health

1995) also recognises the value of women's views on

cancer services. This Report places emphasis on the

reorganisation of national cancer services and patient-led

care. Breast cancer is the first priority area for which

guidance has just been produced in order that healthcare

purchasers can begin to ensure that care is provided in an

organised, efficient, effective and patient-focused manner

(Cancer Guidance Sub-group of the Clinical Outcomes

Group 1996).

The report identifies 11 areas that can be improved

(e.g. surgery, radiotherapy, palliative care, environ-

mental facilities, patient-centred care). In relation

to patient-centred care, the role of clear written and

verbal information is identified as a key component in

effective care. The review demonstrates the need to

offer psychotherapeutic interventions to help women to

cope with breast cancer. One key aspect seems to be

the support and emotional care of patients by nurses, with

the suggestion that nurses may need more training

in counselling skills to carry out this role. The govern-

ment intends to achieve these substantial changes over

the next 2 years and integrate this provision with the

needs of women locally, to provide a tailored service that

is consistent with high quality, nationally.

The present study examines the views of 18 newly

diagnosed breast cancer patients to establish whether

their expressed needs are reflected in the treatment they

receive and to make recommendations to service provi-

ders on future breast cancer care. This study also evaluates

the success of integrating these changes into the health

care system.

PATIENTS AND METHOD

In selecting the sample of patients for this study, following

ethical committee approval, all adult female (18±74 years)

breast cancer patients from two different acute hospitals

in north east England recently diagnosed as having

primary breast carcinoma were interviewed. Those with

neurological impairment or a present psychiatric condi-

tion (as identified from medical records) were excluded.

Patients were interviewed as a consecutive sample

between March and May 1993, when attending che-

motherapy at either of the two hospital out-patient

departments, between their second and sixth course of

chemotherapy, a period when the prevalence and intensity

of generalised anxiety response to treatment have gen-

erally stabilised (Jacobsen et al. 1993). All of the women

provided written consent to the interview and all inter-

views (conducted by one of the authors Ð A.B.) were

tape-recorded.

Interviews lasted for approximately one hour and were

transcribed verbatim for analysis, producing 20 000 words

of text. The basis of the analysis was both what was said

and how it was said, and followed the model proposed

by Ritchie & Spencer (1993). This involved abstracting

and identifying key concepts, indexing, mapping and

categorising the data and finally producing a coherent

thematic framework.

A number of major themes and sub-themes were

elicited. These were: accessibility, environment, informa-

tion (amount, medium, timing, delivery), quality of care,

the psychological perspective (shock, speed of treatment,

complexity of treatment, fears of treatment, period of

waiting), supporters (nurses, husbands, family and friends)

and the economics of cancer (loss of earnings, travel costs,

payment for tamoxifen).

Since no patient refused to be interviewed and themes

recurred in different accounts, it was felt that the

categories elicited through the analysis were comprehen-

sive, thus meeting the method criterion of `saturation'.

The size of the sample, the exclusive focus on patients

receiving chemotherapy and the cross-sectional, rather

than longitudinal design are limitations on the gener-

alisability of the findings. However, the commonality

of certain themes across all the accounts suggests that

the framework provides a useful basis for understand-

ing breast cancer patients' experience. It should be

recognised that accounts were not validated by interviews

with medical staff or relatives and that patients' percep-

tions of treatment, even where these are contested by

others, contribute to physical and psychological morbidity

(Pearson 1989).

RESULTS

Socio-demographics and medical characteristics of

patients

Table 1 presents the socio-demographic details of the

sample of patients. The majority of women within the

sample were either married or cohabiting with a partner.

Two patients were widowed. Social class distribution

showed no patients in social class I and 67% of the group

in classes II and III.

Table 2 indicates some of the treatments patients

received. Surgical treatments were 10 mastectomies and

eight conservative breast surgery procedures. All patients

in the sample were undergoing adjuvant chemotherapy.

The majority of the patients, 97% (14), were taking

tamoxifen. Seventy-two per cent (13) of the patients were

waiting to begin radiotherapy.

Main themes arising from qualitative analysis

Accessibility

One of the main causes of psychosocial distress for

patients was the lack of accessibility of adjuvant che-

motherapy. In the UK, national policy recommends local

treatment where possible (Department of Health 1995).

The majority of patients in this study were required to

make extensive journeys to a cancer treatment centre for

chemotherapy, early in the morning and frequently in

poorly maintained ambulances. Such journeys frequently

lasted 60±90 min, but could last up to 2� hours and were

often uncomfortable.

Past research (Lind et al. 1989) has recognised the value

of local services in reducing patients' reliance on transpor-

tation services. For patients in this study, reliance on the

ambulance service increased travelling time considerably.

Lack of control over transport, the distance travelled and

additional discomfort to that caused by the treatment were

significant factors in patients' perceptions of treatment.

It's too far to travel really. If it was a lot closer, it would

be far better, less stressful and not so worrying.

I think the journey is terrible.

Well, it's quite a long way when you have your

treatment and then you have to come all the way back

feeling ill.

Some patients attempted to reduce the negative effects

of travelling in this way by using private transport, thus

increasing dependency on family and friends and often

incurring significant financial costs.

If we did not have to come so far I would get the bus.

My husband has to take a half day off work so he loses

his pay. I don't like asking him but I could not stand it

in the ambulance. It's such a long day.

Environment

A particularly important theme to emerge related to the

importance of a positive physical clinical environment in

buffering the psychosocial consequences of the treatment

experience. Patients found physical comforts such as high-

backed chairs, availability of food and distractors such as

television and magazines of value in alleviating the

negative aspects of the experience.

Privacy was also regarded as a high priority. Lind et al.

(1989) have observed that communication about various

aspects of the disease is a central issue for most patients,

who are sensitive to how, where and by whom such

information is given. Frank (1991) has also indicated that

hospitals have previously relied on `the fallacy of privacy'

(e.g. closing curtains) instead of finding solutions. Since a

sense of greater security affects information disclosure by

126 # 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 124±132

BOTTOMLEY Breast cancer care

Table 2. Medical treatments undergone by patients

Treatment

SurgeryConservative procedures 8Mastectomy 10Adjuvant chemotherapyYes 18No 0TamoxifenYes 14No 4RadiotherapyTreated at present 0Awaiting treatment 13Completed treatment 2No treatment 3

Table 1. Sociodemographic data of the sample

Demographics

Mean age (years) 46Standard deviation 10Range (years) 28±66Marital status

Widowed 2Married or cohabiting 16Single 0Separated or divorced 0

Social classI 0II 7III 5IV 4V 2

patients, which in turn affects the effectiveness and

efficiency of treatment (Benn 1971), privacy is an issue of

importance, not just for patients' subjective well-being,

but also potentially for their health progression.

It's just like a lounge here. You feel at home.

Ìt's very private, I feel able to talk about my illness

with my doctor

Information

In the United Kingdom, great efforts are being made to

ensure patients are aware of their right to information (e.g.

the guidelines issued by the Cancer Relief Macmillan

Fund 1994, Audit Commission 1993). Satisfaction with

information given has been shown to be correlated with

reduced depression and anxiety in the 12 months after

treatment (Janis & Mann 1977). The medium in which

information is provided to patients is important. This is

particularly so when the treatments patients receive are

complex and daunting. Evidence has shown that when

patients are in such stressful situations they tend not to

absorb information as readily as they would normally do.

Indeed, even if the patient does understand what they are

being told during a medical consultation, typically, 40% of

this information is forgotten immediately (Pitt 1991).

Timing of information giving should take account of the

period of initial shock, when little new information is

processed (Fallowfield et al. 1990). Delivery of information

about the diagnosis of cancer and treatments is difficult for

both clinicians and patients (Pendleton & Hasler 1983). It

is therefore important that those providing health care not

only have full knowledge of the treatment but are also able

to make the information available. It is important that the

effectiveness of communication is assessed. Has what has

been given been received? In line with the literature

(Meterowitz 1987, Maguire 1975, Jensen 1981, Blachard

1986) patients emphasised the importance of good inter-

personal relationships with clinicians and other medical

staff in adjusting to diagnosis and treatment.

Four main factors emerged in patients' discussion of

information: amount and detail; the medium; timing of

information; and delivery of information.

Amount and detail: In contrast to the consensus on the

need for local treatment, there were differences in

patients' comments on information provision, the major-

ity feeling that a detailed understanding of their condition

and treatment was required and two preferring not to

know very much. Most were satisfied with the amount of

information given

I think they [clinical staff] gave me plenty of information

though a more detailed description of surgical procedures

was suggested by some.

The amount of information: In general the amount

forgotten increases with the amount given. It therefore

cannot be considered unusual that a key area of improve-

ment highlighted by patients was the medium of informa-

tion giving. Patients suggested the use of audio recordings

of consultations, video information of the possible treat-

ment process and up-to-date literature to reinforce verbal

information. For example, one patient suggested

If I could of seen it on a video before, half of this fear

wouldn't have been with me.

Timing of information: Patients in the study reported

being unable to take in much information at the time of

diagnosis.

Well, they were telling me all about it, obviously

because you're still in a state of shock, it just doesn't

sink in really and they kept saying write it down what

you want to ask them and I just kept thinking what

could I say?

Delivery of information: Analysis of transcripts suggests

that a delicate balance is needed between clear talking

...[talking] to you as if you are an idiot or as if you don't

understand or as if you are stupid

and between tact and honesty. The dynamics of interac-

tion between patient and clinician, compounded by

anxiety, can lead patients to feel that they have no choice

in their care, as in the case of the woman quoted below.

I didn't have a lot of choice. I suppose I could of said

`No, I don't want it', but I mean he said `Here are your

cards, your bed's booked, you're in.' You just sit there,

you don't know what to think. Things are going so fast

you know.

It is part of a clinician's responsibility to adopt a sensitive

and appropriate style of communication.

The style of interaction adopted by the clinician is a

central issue. Most surgeons were viewed as being very

busy and this was regarded as affecting the amount of time

they had available to set the patient at ease. This may be a

barrier to effective communication For example, two

patients felt the surgeons did not help them to cope with

their situation and this was attributed to the surgeons'

personality and poor communication skills



[The surgeon] is very abrupt... the attitude that came

across to me was, he knew best everything, you knew

nothing and that was it.

Relationships with nurses were amongst the most highly

valued. Most were regarded as friendly and caring. The use

of first names and treating each patient as an individual

(and à person, not an object') were important factors.

They [the nurses] will come up and ask you if you want

a coffee, or just have a chat and say `How are you?'

Quality of care

Most of the patients had experienced medical manage-

ment problems, though these were diverse and did not

follow any pattern. Four patients perceived a delay in

diagnosis by their GP of between four and nine months,

through lack of examination or attention to their opinions.

I told him I had this [lump] and he never touched me, he

never felt, looked, anything. He just said, erm, ìt's

because of the menopause, the change.

Other patients experienced delays in receiving results,

causing considerable distress. Waiting times and confusion

over appointments for chemotherapy were also mentioned, as

was lack of continuity of care. Of particular importance was

the avoidance of acute admissions for breast surgery, where

psychological preparation of patients, previously unaware of

malignancy, was not possible or planned for. This is a rare

occurence, but one which denies the patient and family the

opportunity to consider appropriate treatment options.

The psychological perspective

Patients frequently indicated concern about diagnostic

and treatment procedures. A number of common themes

emerged.

The shock of diagnosis

Even where patients already believe they have breast

cancer, the diagnosis is a shock.

I was just gob-smacked. I knew in a way that it was

cancer but obviously I hadn't been told, but when they

said Àre you worried? You have reason to be. It's

cancer.', it didn't come any easier.

The speed of treatment

Rapid treatment was regarded differently by different

patients: some felt it helped them to come to terms with

having cancer; others felt it prevented them assimilating

information and realising what was happening.

It's terrible. It's... I can't explain, it's, it's just horrific

and traumatic. I can't believe it. It's fast. You are not

living. You are just existing for doctors and nurses and

rushing here and rushing there.

In contrast, some women valued a fast treatment.

It was fast. From diagnosis to my breast removal was

less than a week or so. I wanted it that way. I need to

get on with my life so we had to just get on with it.

The complexity of the treatment process

Chemotherapy and radiotherapy treatment regimes were

perceived as complex and remembering to take tablets, a

key issue in following medical advice. Other women found

aspects of the diagnosis, use of X-ray machines, CT scans

and blood tests, daunting and confusing. Frequently, they

reported not understanding medical technology

They said I had to go for something called a `CAT' scan.

They never explained why, even when I got there I was

not sure why I went. Anyway, when I saw my doctor

last time I asked him what it did and he just said it was

like a picture of my inside to tell him how well the

treatment works, but I think he might have told me

earlier. I still don't know why I needed it anyway.

The X-ray machine is frightening. They just say `lay

down' and then I guess it puts rays to the lump and kills

all them bad cells.

Fear of the treatment

Insufficient explanation of treatment may reduce compli-

ance and increase anxiety. Clinicians may make assump-

tions about patients' knowledge that over-estimate their

understanding or overlook the need to explain what, to

them, seems routine.

Most patients mentioned that they were afraid of the

treatment they would receive. Regrettably, some patients

still consent to whatever surgical treatment seems

necessary before going to the operating theatre. When a

biopsy reveals cancer the surgeon continues with either a

lumpectomy or more radical surgery. Bottomley (1994)

noted that over 30% of women with breast cancer in his

study (n = 120) had a biopsy examined whilst under

anaesthetic. A typical fear for those undergoing this frozen

section was of waking up without the breast and with a



diagnosis of cancer. Thankfully, this practice is diminish-

ing all the time. After diagnosis, other fears are common:

fear of chemotherapy, surgery, needles, hair loss, side

effects and uncertainty about the future. One patient said

At first I was really scared. I did not know what to

expect, all this equipment [on the hospital ward] all

looked frightening. So at first you are frightened.

Patients felt that information and support could alleviate,

though not remove, some fears and anxiety.

The breast nurse was brilliant. I was worried about

chemotherapy, but she told me all about it, spent a lot

of time explaining to me all my treatments and I felt a

lot less anxious afterwards.

The period of waiting

Waiting for the results of diagnosis was identified as a

particularly stressful time.

You are anxious. You just want them to come back and

tell you it's not what you think. You think about it all

the time. It was awful.

After diagnosis, waiting for treatment was considered less

stressful. Most patients had a wait of 2±3 h in the clinic

before chemotherapy was administered, but felt that this

was buffered by the facilities provided and the atmosphere

created in the outpatient oncology unit.

You have to wait for your treatment, but the waiting

is not as bad, As I told you, you are on chairs. Here

you have a coffee machine with sandwiches at

lunch-time and other people to talk to. Although you

may be sat two hours, it does pass on. It's not as bad as

some places.

The supporters

When diagnosed with breast cancer, women are typically

seen to have an increased need of support. They make use of

existing relationships and form new ones to help to manage

the psychological reactions and uncertainty that accom-

pany diagnosis. It has been reported that the value of the

nurse-patient relationship is frequently of significance to

cancer patients. This relationship is cited as providing a

valuable alliance, aiding in the communication and under-

standing of the treatment and disease process. There is

evidence (Zahlis & Stands 1991, Spiegel 1994) of the

positive therapeutic role of husbands as caregivers. Bloom

(1982) observed that the perception of social support

(measured by family cohesiveness and frequency of social

contacts) is the strongest predictor of healthy coping

responses to breast cancer. Wellisch et al. (1991) suggest

that patients with higher levels of family support demon-

strate fewer accommodating modes of adjustment (e.g.

drinking, over-eating). The patients interviewed indicated

that they received psychosocial support from four key

groups: nursing staff, husbands, family and friends.

Nursing staff

Patients typically saw nurses in a supportive role, as

friend, confidante, explainer, comforter, counsellor, as

well as nurse. Not only breast care nurses, but other

nurses were seen as fulfilling this role. Typically, patients

said of nurses

She's very helpful.

They always explain it well.

They make you feel better.

She's very good at listening.

They explained my problem and made me feel normal.

I just phone up and they answer at any time without a

problem, and seem pleased to help.

Husbands

The majority of women viewed their partner/husband's

support as invaluable. Many reflected on this as a `joint

fight' that had brought them closer together. There was,

however, a clear need for support for the partner as well as

the patient.

(Patient about husband) He needs help too. Someone

to talk to... You see I get all the support, but he doesn't

get any

(Husband of patient) I just felt left out at the time

before and after surgery. I would have liked to have

been involved more then.

Family and friends

As well as emotional support, patients interviewed in this

study reported having considerable practical support from

family members. In line with the findings of Wortman &

Dunkel-Schetter (1987), some patients reported experien-

cing rejection by friends, though others felt they had

received good support.



You certainly get to sort the wheat from the chaff as far

as your friends are concerned.

My friends could not have been more helpful. They've

been coming around all day, doing the washing and

everything. They are fabulous.

Economics of breast cancer

For patients the financial cost of developing breast cancer

could be a significant problem in three main areas: loss of

earnings, travel costs and payment for tamoxifen

Loss of earnings

All but one of the employed women in the sample, gave up

work to recover from surgery and to undergo chemother-

apy. This produced a significant negative effect on

standard of living. Fortunately, most women did not

perceive financial difficulties as necessitating return to

employment before feeling both physically and psycholo-

gically able.

I like my job. I really miss the people and money

helped a lot. It's a bit difficult financially now, but

I will wait until I'm over all this treatment before I go

back to work.

Travel costs

The cost of travel was considered problematic for patients

travelling by private car or attending the hospital for

radiotherapy.

It may cost me some money, which is quite expensive

in petrol, but it's far better than using that ambulance,

and all that waiting.

For some, travel involved a 60 mile journey 15 times

within a month. None of the women had explored the

possibility of reclaiming travel expenses and most felt that

the benefits of travelling by private car, rather than the

long ambulance journey, outweighed the financial costs.

Payment for tamoxifen

When patients are diagnosed with breast cancer in the UK

they rarely expect to pay for treatment, since the UK

operates a national subsidised health care service. In fact,

all treatment is free to the patient, at the point of delivery,

apart from the prescription cost of tamoxifen. Some

women require tamoxifen for 5 years or more. The

majority of patients taking tamoxifen expressed disbelief

and frustration at having to pay for a life-preserving drug.

However many patients are exempt from prescription

charges for a variety of reasons. One woman who had to

pay said

Can you tell me why we have to pay for tamoxifen? I

don't think it's right that someone diagnosed with a life

threatening illness should have to pay for any drug

treatment.

CONCLUSION

Interviews were conducted to gain awareness of the views

of women on their care and needs while undergoing

treatment for breast cancer. The information from this

study indicates clear implications for local purchasers of

breast cancer services on a district resident basis (i.e. 35

General Practices and one District Health Authority,

DHA). On the basis of these views, improvements in

breast cancer services have been made through negotia-

tions with local providers (clinicians and managers), and

through the establishment of a Stakeholder Strategy

Group. This group had a remit to ensure that the views

expressed by the women in this study were taken into

account, as far as was practicable, in the provision of

breast cancer services in the district. Specifically, through

negotiations involving both the main purchaser and

providers, local access to chemotherapy has been incorpo-

rated into contracts, ensuring that all women are treated

locally. Similarly, the DHA and local general practitioners

have ensured that in establishing local chemotherapy

services, providers must ensure that aspects of environ-

mental well-being noted by the women in this study (e.g.

privacy, comfort, facilities, such as television) have been

taken into account. Improvements have also been

achieved by the purchasers ensuring providers have fuller

written information, video-recordings giving information

on radiotherapy and oncology.

Women identified issues of communication as an area of

central importance. In response to this and supporting

empirical evidence, improvements were negotiated invol-

ving the establishment of nurses in key roles as collators

and providers of information in appropriate forms for local

needs. Communication between staff and patients will

improve through better training, experience and knowl-

edge. The main purchaser now encourages all provider

staff, dealing with breast cancer patients, to attend

communication training workshops.

The women in this study also identified possible

problems with early recognition of breast cancer symp-



toms by local general practitioners. Educational initiatives

to help general practitioners recognise the symptoms of

breast cancer and to make appropriate referrals are also

underway, e.g. the production of brief leaflets on diagnos-

ing breast cancer, including a focus on women's experi-

ence, for referral clinics; the dissemination of information

through local G.P. forums and training exercises. Other

quality standards such as adherence to recently published

national guidelines (The Breast Surgeons Group of the

British Association of Surgical Oncology 1995) are in-

corporated into contracts with the local providers and

annual audits are planned.

Undoubtedly, the psychosocial consequences to women

were significant. All newly diagnosed women now have

regular psychosocial evaluations (with standardised psy-

chometric tools) and access to specialist breast care

nurses, and, where necessary, clinical psychologists.

Breast care nurses have taken on board the implications

of these local findings in developing their role in the

psychosocial care of women with breast cancer. Training

in the assessment and monitoring of patients' psycholo-

gical state has been provided and undertaken.

To a lesser extent there have been improvements in the

services available for those who support women with

breast cancer. For example, provider staff are now

recommended always to consider the importance of

husbands/partners and family when dealing with women

with breast cancer. It is uncertain how effective this has

been and further research is necessary to ascertain

whether changes have occurred and to suggest strategies

for improvement. Women also indicated that financial

aspects of breast cancer can be problematic. Providers are

now required to ensure that all patients who require access

to a financial benefits' adviser to help alleviate such

difficulties have the opportunity to do so. Limited data are

available to support any increased use of benefits advisors.

Anecdotal evidence from patients suggests increased

access has been achieved.

In summary, this small study of the care of women with

breast cancer highlights areas of potential improvement in

services that may not be regarded as uncommon. Many of

the improvements were made more possible because of

the emphasis by the government in their review of

national cancer services (Department of Health 1995).

The receptiveness of clinicians, nurses and other health

care professionals, as well as managers, also facilitated

improvements for women with breast cancer. The media

may have also been influential and press releases from

purchasers on the results and expected changes raised the

profile of the work. There is much public interest in breast

cancer and health care providers have a vested interest in

ensuring improved care. Although generalisability has not

been directly established, the results suggest the impor-

tance for health professionals of eliciting patients' views

and responding to their concerns as a means of improving

health care systems.

Acknowledgements

The authors would like to thank Helen Fox and Wakefield

Health Authority for their support while undertaking this

study. Further, a big thank you is given to all the patients

who gave time to explain their story.

REFERENCES

Audit Commission (1993) What Seems to be the Matter? Com-munication between Hospitals and Patients. HMSO, London.

Benn S.I. (1971) Privacy, freedom and respect for persons. In J.W.Chapman (ed.) Privacy: Nomos XIII, 1±26. Atherton Press, NewYork.

Blachard C.G., Ruckdeschel J.C., Fletcher, B.A. et al. (1986) Theimpact of the oncologist's behaviour on patients' satisfactionwith morning rounds. Cancer 58, 387±93.

Bloom J.R. (1982) Social support, accommodation to stress andadjustment to breast cancer. Social Sciences and Medicine 16,1329±1338.

Bottomley A. (1994) Breast cancer Ð the treatment and manage-ment of women with breast cancer in Wakefield. WakefieldDistrict Health Report, Wakefield, England.

Bottomley A. (1995) Purchasing breast cancer care. British Journalof Health Care Management 4, 708±709.

Cancer Guidance Sub-group of the Clinical Outcomes Group(1996) Guidance for Purchasers: Improving Outcomes in BreastCancer Ð Manual. National Health Service Executive,Manchester.

Cancer Relief Macmillan Fund (1994) Breast cancer: How to helpyourself. CRMF, London.

Cancer Research Campaign (1989) Mortality and Prevalence ofBreast Cancer in England. Factsheet 102. Cancer ResearchCampaign, London,

Department of Health (1995) A policy framework for commission-ing cancer services. A report by the expert advisory group oncancer to the Chief Medical Officers of England and Wales,Crown Copyright.

Fallowfield L.J., Hall A., Maguire, G.P. et al. (1990) Psychosocialoutcomes of different treatment policies in women with earlybreast cancer outside a clinical trial. British Medical Journal301, 575±580.

Frank A.W (1991) At the Well of the Body: Reflections of illness.Open University Press, Milton Keynes.

Ganz P., Schag C. & Heinrich R. (1985) Psychosocial impact ofcancer in the elderly: a comparison with younger patients,Journal of the American Geriatric Society 33(6), 429±435.

Grobe, M.E., Ahmann, D.L. & Illstrup, D.M. (1982) Needsassessment for advanced cancer patients and their families.Oncology Nursing Forum 9(4), 26±30.

Houts, P.S., Joyce, M.Y., Harvey, H.A. et al. (1988) Unmet needs ofpersons with cancer in Pennsylvannia during a period ofterminal care. Cancer 62, 627±634.

Jacobsen D., Boujery D. & Redd W. (1993) Anticipatory anxiety inwomen receiving chemotherapy for breast cancer. HealthPsychology 12(6), 469±475.



Janis I. & Mann L. (1977) Decision Making: A PsychologicalAnalysis of Conflict, Choice and Commitment. The Free Press,New York.

Jensen P.S. (1981) The doctor and patient relationship: headed for im-passe or improvement? Annals of Internal Medicine 95, 769±771.

Longman I., Peters M.L. & Roberts P. (1992) Patients' decision-making and influences on health care services in an oncologyunit. Journal of Psychosocial Oncology 4, 82±94.

Lind S.E., Delvecchio G.M.J. & Seidel S. (1989) Telling thediagnosis of cancer. Journal of Clinical Oncology 75, 583±593.

Maguire P. (1975) The psychological and social consequences ofbreast cancer. Nursing Mirror 140, 54±57.

Meterowitz B. (1987) Psychosocial correlates of breast cancer andits treatments. Psychological Bulletin, 108±131.

Office of Population and Census Statistics (OPCS) (1984) Employ-ment Classifications. HMSO, London.

Pearson S. (1989) Patients' and Carers' Views of a Palliative CareService. Wakefield District Public Health Report, WakefieldHealth Authority, Wakefield, England.

Pendleton D. & Hasler J. (1983) Doctor-Patient Communication.Academic Press, London.

Pitt M. (1991) The medical consultation. In The Psychology ofHealth (Pitt, M and Phillips N eds.) 4, 43±63. Routledge,London.

Ritchie J. & Spence L. (1993) The Analysis of Qualitative Data:An Approach to Analysis for Applied Social Policy Research.Department of Health, London..

Spiegel D. (1994) Health caring: Psychosocial support for patientswith cancer. Cancer. (Supplement) 15(4), 1453±1457.

The Breast Surgeons Group of the British Association of SurgicalOncology (1995) Guidelines for surgeons in the management ofsymptomatic breast disease in the United Kingdom. EuropeanJournal of Surgical Oncology, 21 (Supplement A), 1±13.

Wellisch D.K., Jamison K.R. & Pasnau R.O. (1991) Psychosocialaspects of mastectomy II. The man's perspective. AmericanJournal of Psychiatry 135, 543±546.

Wortman C.B. & Dunkel-Schetter K. (1987) Interpersonal relation-ships and cancer. A theoretical analysis. Journal of Social Issues35, 120±155.

Zahlis E.H. & Shands M.E. (1991) Breast cancer: Demands of theillness on the patient's partner. Journal of PsychosocialOncology 9(1), 75±93.



Documents

Breast cancer care: women’s experience