A patient-focused evaluation of breast care nursing specialist services in North Wales

A patient-focused evaluation of breast care nursing specialist services in North Wales R. Carnwell and S.A. Baker

Background to the study: Breast care services for Wales have developed in response to government requirements that breast cancer care should be delivered only by specialist multi-disciplinary teams in cancer units treating at least 100 new breast cancer patients per year. Study aims: This paper presents the findings of the third stage of a three-stage project. The aim of this phase of the study was to evaluate the Breast Care Nursing Specialist (BCNS) service from the patients’ perspective. Methodological issues: A postal questionnaire was distributed to women with breast cancer who had experienced the BCNS service (n = 172). The questionnaire included a 4-point, 28-item Likert scale as well as open and closed questions. Findings/conclusion: The findings revealed positive perceptions of the value of the BCNS service, particularly in relation to support around the time of diagnosis. Areas requiring improvement included meeting information needs of women with breast cancer, availability of BCNSs, and providing emotional support to family members and to women in the longer term as well as providing practical care. It is concluded that increasing the numbers of BCNSs, and providing training in counselling as well as access to information and how this can be shared with women, would do much to address these deficits in service provision. c 2003 Elsevier Science Ltd. All rights reserved.




Keywords: breast care nurse specialist, evaluation

INTRODUCTION

R. Carnwell NEWI, Health and Community Research, Plas Coch Campus, Mold Road, LL11 2AW, Wrexham, UK E-mail: [email protected] S.A. Baker NEWI, Health and Community Research, Plas Coch Campus, Mold Road, LL11 2AW, Wrexham, UK

The need for breast care nurse specialists (BCNSs) to work with all women with breast disease was acknowledged by the British Association of Surgical Oncology 1995. Subsequent to this, as part of the governmentÕs health gain targets within Health Improvement Programmes, the National Health Service Executive (NHSE) (1996) specified that breast cancer care should be delivered only by specialist multi-disciplinary teams in cancer units treating at least 100 new breast cancer patients per year. Whilst government directives in the UK (DoH

Clinical Effectiveness in Nursing (2003) 7, 18–29 doi:10.1016/S1361-9004(03)00036-0

C

2003 Elsevier Science Ltd. All rights reserved.

2000a, 2000b) set clear targets for health care providers to achieve, national guidelines such as Improving Clinical Outcomes and Standards for Care also identified Ôbest practiceÕ in the delivery of cancer services and the standards that should be reached. In Wales, the Cancer Service Co-ordinating Group (CSCG) set standards for All-Wales breast care services. These standards required breast cancer care to be provided by a specialist multi-disciplinary team (National Assembly for Wales 1998, 2000), which was to include two breast cancer care nurse specialists within each NHS Trust, who had completed an accredited

A patient-focused evaluation of breast care nursing specialist services in North Wales 19

programme of education specifically related to their specialist area of care. The organisation of breast care services in North Wales developed in response to these demands, as indicated in figure.

THE ROLE OF THE BREAST CARE NURSE A frequently cited role of the BCNS is provision of support and information to women with breast cancer and their family, within a multidisciplinary framework (Jary & Franklin 1996, Specialist Breast Nurse Project Team 2000, Tait 1996). Whilst UK literature identifies the need to complement support given by primary carers and to provide continuity and co-ordination of care according to need (Tait 1994), Australian literature characterises support as the giving of information to women and their carers (White & Wilkes 1999). Regardless of how support is defined, its therapeutic value has been clearly demonstrated (Burke & Kissane 1998). Using a meta-analysis, Burke and Kissane found irrefutable evidence of the benefits of psychosocial support for women with breast cancer, particularly in alleviating anxiety and depression and increasing knowledge. Evidence of the valuable role that BCNSs play in providing social support and counselling was also provided by a systemic review of 89 papers, of which 14 met the criteria for inclusion (Woodward & Webb 2001). Randomised control trials also demonstrate benefits including: provision of information, emotional support, and identification of stress (Specialist Breast Nurse Project Team 2000); and reduced psychological morbidity (McArdle et al. 1996, Neil 1996). A review of evidence by the NHS Executive (1997) also endorsed these findings. Much of the literature on psychological support attributes its success to the provision of information to women with breast cancer (Effective Health Care 1996). Although the BCNSsÕ role in providing information is effective in alleviating anxiety (Bottomley & Jones 1997) deficits in the provision of information, psychological support and counselling have also been reported (Garvican et al. 1998, Tait 1994, Webb & Koch 1997, Farmer 2000). BCNSs, for example, have been reported to be reluctant to explain treatment options, thereby not empowering women to make their own decisions in the light of information provided (Tait 1994). Indeed, despite 65% of women wanting a choice in treatment, Round et al. (1997) found that only 42% of patients (n ¼ 57) had been given a choice. Reasons why BCNSs fail to involve women in treatment decision are various and include characteristics of the women, such as age (women over 50 being less involved) (Round et al. 1997) and coping styles (Burton & Parker 1994) as well as difficulty experienced by nurses in accessing information (Fitch

et al. 1998) or uncertainty about whether they or doctors should provide such information (Suominen 1993). Addressing patientsÕ information needs, therefore, not only requires team agreement about who should provide information about treatment, but also an understanding of what patientsÕ needs are, access to appropriate information by health care staff and the ability to communicate information effectively. The evidence suggests, therefore, that information on treatment is important to women (Grey et al.). However, not everyone wants all the information available all the time (Rumsey & Harcourt 1998), whilst womenÕs needs for information differ significantly at different stages of the breast cancer journey (Rees & Bath 2000). Women diagnosed during the past year, for example, have significantly higher needs than those diagnosed in the past 5 years (Lindop & Cannon 2001), which might explain why support is often restricted to the period of diagnosis and treatment (Luker et al. 2000). Since communication with health care providers and involvement in decision-making is important in improving patientsÕ adjustment at different stages of their illness (Sarafino 1994), initiatives to promote patient involvement are crucial. Such initiatives include ÔadvocacyÕ style counselling and recording of summaries of consultations. An evaluation of ÔadvocacyÕ style counselling (Ambler et al. 1999) revealed that patients felt better informed, understood treatment options and felt more involved in decision-making. Summaries of consultations also proved successful in increasing both the amount of information recalled and satisfaction with information given (NHS Centre for Reviews & Dissemination 2000). There is considerable evidence that specialist nurses contribute to improved outcomes for patients, by reducing anxiety and depression and helping patients to participate in choices about treatment (Effective Health Care 1996). Evidence also highlights the value of psychotherapeutic counselling and educational interventions in improving quality of life of women with advanced breast cancer (NHS Executive 1997). Although this psychotherapeutic counselling is an important component of follow up care, lack of resources means that BCNSs are unable to offer a comprehensive follow-up service (Luker et al. 1996, 2000). Much of this care is, therefore, provided by General Practitioners, despite their lack of specialist expertise (Round et al. 1997) and womenÕs expressed preference for follow up care from BCNSs (Pennery & Mallet 2000). Further evidence (Effective Health Care 1996, NHS Executive 1997) also points to lack of continuity of care from a single provider. The role of the BCNS, then, seems to encompass several elements including: psychosocial support, provision of information, involving women in treatment decisions and providing

20 Clinical Effectiveness in Nursing

follow-up care. The deficiencies identified in provision of information and support at the appropriate point in time raise important issues in relation to training of BCNSs. Most literature on training refers to specific training needs, such as communication skills, counselling, and information needs of women, whilst Tait (1994) found that 70% of nurses wanted further counselling training (although 74% had undertaken such training). Communication skills are of particular concern, as patients and carers report difficulty relating to health professionals (NHS Executive 1997). Moreover, Tait (1994) found little consistency in nursesÕ identification of patientsÕ emotional needs, such as clinical depression and anxiety. The psychological status of women undergoing breast investigations therefore merits employment of trained counsellors (Poole 1996), in addition to health professionals who have excellent communication skills. Knowledge of what women want and need to know is also an area in which training is needed (NHS Executive 1997). With adequate training, district nurses could take more responsibility for meeting information needs of women with breast cancer (Luker et al. 2000) thereby reducing pressure on the BCNS service.

SUMMARY OF LITERATURE The BCNS role includes provision of support and information to women and their families. Support and information needs differ at various points in the disease trajectory. Determining who should provide appropriate information and support at specific times requires teamwork and role clarification as well as patient-participation, and adequate follow up. Various evaluation studies have demonstrated the effectiveness of the BCNS role, particularly in relation to provision of information and in reducing psychological morbidity, including stress and depression. Patient involvement in treatment decisions was also addressed in the literature, some studies suggesting that BCNSs should involve women more in treatment decisions and others scoring them highly on this. The need to provide support and information to enable women to make informed decisions about their care has important implications for training needs. This paper presents the findings of the first study, which forms part of the third stage of a threestage case study to evaluate the North Wales Breast Care Nursing Service. The first stage used in-depth interviews to evaluate BCNSs in North Wales from the perspective of the BCNSs themselves as well as their close colleagues (Redworth & Baker 2000), whilst the second stage employed a questionnaire survey to evaluate the BCNSs from the perspective of District Nurses and Practice Nurses. This methodology is consistent with recommendations of Richardson and Miller (2001) who suggest that

evaluations of cancer services should incorporate patientsÕ perceptions of the process of care as well as ultimate outcomes and should address the concerns of practitioners and patients, rather than researchers.

METHODOLOGY The aim of this phase of the study was to evaluate the Breast Care Nursing service from the patientsÕ perspective. Two research questions guided the study as follows: 1. How do patients with breast cancer experience the Breast Care Nursing Service? 2. What are the strengths and weaknesses of the Breast Care Nursing Service from the patientsÕ perspective? A survey design was utilised, involving anonymous postal questionnaires. The questionnaire was developed from the Macmillan Breast Care Service: Patient Questionnaire as well as from the findings of the earlier phase of the same study (Redworth & Baker 2000). Using these findings increased the content validity of the questionnaire. The questionnaire was also assessed for content and clarity by four professional nurse educators and 10 district nurses and practice nurses, and was subsequently amended prior to data collection. The final questionnaire comprised a 28-item Likert Scale as well as open and closed questions. The Likert Scale demonstrated good internal consistency with a Cronbach alpha coefficient of .94. The final questionnaire was produced in both Welsh and English languages.

SAMPLE AND ACCESS Criteria for inclusion in the survey were women aged eighteen and over who had been diagnosed with breast cancer during the year 2000. Criteria for exclusion included those who were assessed as unfit (for example due to psychological problems, elderly or infirm or in the terminal phase of the disease). The sample was selected from the North East Wales NHS Trust, North West Wales NHS Trust and Breast Test Wales (Llandudno Centre). Conway and Denbighshire NHS Trust, although identified in Fig. 1, did not participate in the study due to a prior audit commitment, which would have resulted in service users being Ôover surveyedÕ. The survey employed a 90% sample involving randomisation with replacement. This technique involved selecting a random sample of 90% of the total population, which was then checked by BCNSs to ensure that each member met the inclusion criteria. If a respondent met the criteria for exclusion, another respondent was selected from the remaining 10% of the population. This process

A patient-focused evaluation of breast care nursing specialist services in North Wales 21

Fig. 1 The Organisation of Breast Care Nursing Services within North Wales as at October 2000.

was repeated until the population was exhausted. In order to maintain patient confidentiality, the Breast Care Specialist Nurses identified the sample; researchers did not have access to patient records or databases.

ETHICAL CONSIDERATIONS Ethical approval was granted by the North Wales Research Ethics Committee. Participation was voluntary, with questionnaire completion implying consent. Confidentiality was maintained throughout the study, with anonymity being assured in analysis and reporting of findings. Given the vulnerability of these respondents, care was taken to ensure that no distress was caused by the questionnaire. For this reason, demographic information was not elicited in the questionnaire, as this was considered inappropriate due to the vulnerability of the group and sensitive nature of the subject. As the patients were well known to the breast care nurses, requests for personal details might have resulted in some individuals being identified and might also have affected the response rate. The questionnaire focused on patientsÕ perceptions of, and experiences of the BCNS, which was deemed to be consistent with the

aim of evaluating service provision. To help minimise any potential negative effects, contact details for support and counselling were given, had they been required.

QUESTIONNAIRE DISTRIBUTION AND RETURNS A total of 270 questionnaires (with covering letter and prepaid envelope) were distributed. Reminder letters were sent two to four weeks later. The response rate was 64% (n ¼ 172), with the percentage response rate by organisation ranging from 61% to 71%.

DATA ANALYSIS Data generated by closed questions were analysed using SPSS Version 10. Descriptive statistics (frequency, percentages and cross tabulation), and inferential statistics (chi square) were also used. Qualitative data from open-ended questions were entered into a database created in Microsoft Word. These data were analysed using content analysis, text generated by each question being grouped

22 Clinical Effectiveness in Nursing

together. Where respondents made similar comments, these were clustered together, the number of comments being presented (n ¼ ). The qualitative data were analysed independently by two researchers, who then compared themes in order to increase the veracity of the findings.

FINDINGS Patients’ awareness of the breast care nursing specialist service in North Wales One hundred and sixty of the 172 respondents responded to an open-ended question enquiring how they had become aware of the service. These data were then manually coded and analysed. As shown in Fig. 2, 60% (103) of respondents became aware of the service at diagnosis. Nearly half (49) of these had found out about the BCNS service through the breast-screening programme, the remaining respondents finding out about the service because of a symptomatic referral to the breast care service. Eighteen percent (31) of respondents indicated that they became aware of BCNSs following their diagnosis, 10 of which found out about the service post surgery. Fourteen percent (25) of respondents reported that they had been aware of the service before their diagnosis. Of these, four had been informed by a friend, 13 by their GP, whilst eight had prior knowledge of the service either through employment within the health sector or prior service experience. In addition, one respondent was unaware that the BCNS service was available.

Breast care patients’ use of the breast care nursing specialist service in North Wales Forty-six percent (79) of respondents indicated that they had used one BCNS service only, this being

Fig. 2 How respondents became aware of the Breast Care Nursing Specialist Service (n = 160).

Fig. 3 Number of Breast Care Nursing Specialist Services used by organisation (% response) (n = 171).

when their condition had been diagnosed. Of the remaining respondents, 39% (67) had utilised two BCNS services and 15% (25) had used three or more. As indicated in Fig. 3, comparison of these figures across the different services suggests that respondents diagnosed by either Breast Test Wales or the North West Wales NHS Trust were more likely to have been in contact with two or more BCNS services (v2 ¼ 25:025, df ¼ 4, p < :001). It had been expected that Breast Test WalesÕs patients would use more than one service, as its remit is the operation of the Welsh breast-screening programme and therefore has limited follow-up facilities. In the case of the North West Wales NHS Trust the service is split over two sites – Llandudno and Gwynedd Hospitals – and thus could have been perceived as different services. This could be in part due to the fact that this latter distinction was not made clear on the questionnaire. When asked which of the BCNS services they would most likely use for follow up care, there was a significant difference between the screen-diagnosed respondents (i.e., those diagnosed by Breast Test Wales) and those diagnosed symptomatically at their local NHS trust (v2 ¼ 40:059, df ¼ 1, p < :001) (Fig. 4). Ninety-seven percent (66) of women diagnosed symptomatically by the North West Wales NHS Trust and 95% (39) of those diagnosed by the North East Wales NHS Trust indicated that they would normally use those services. In contrast, only 35% (21) of BTW respondents (who were diagnosed by routine screening) said that Breast Test Wales was the breast care nursing service that they would most likely use. This variation could be due to two factors – the difference between the nature of Breast Test Wales and the NHS Trust-based BCNS services, and the location of patientsÕ homes. Breast Test Wales (Llandudno) operates across a much wider geographic area within North Wales than individual NHS Trusts. As such, Breast Test WalesÕs respondents were spread more widely across North Wales than those from North East

A patient-focused evaluation of breast care nursing specialist services in North Wales 23

Fig. 4 Responses to the question ‘which Breast Care Nursing Specialist Service would you normally use?’ compared by organisation.

Wales and North West Wales NHS Trusts. It would appear, therefore, that the residential location of respondents could affect their choice of follow up service, with choice being made in terms of convenience. In fact the four respondents who indicated that they would normally use a BCNS service outside of North Wales stated that this was because of the closer proximity of these services. Another factor that could affect choice of follow-up service, however, is the qualitative difference between symptomatic and screening services. The primary function of Breast Test Wales is that of screening (Redworth & Baker 2000), rather than follow-up, whereas trust-based services incorporate access to follow up services such as prosthesis fitting, lymphoedema management, seroma drainage etc. Further findings relating to follow up services are described later in this paper.

Accessing the breast care nursing specialist service Respondents were asked how they accessed breast care nursing services. As Fig. 5 reveals, seventy-

Fig. 5 Methods by which respondents accessed the Breast Care Nursing Specialist Service (% response).

two percent (75) of those who offered comments indicated that they would access the service by telephone. A further 18% (19) wrote that they would either telephone the BCNS service or would go to the hospital or clinic. Four percent (n ¼ 4) of this group indicated that they could access the BCNSs within their own homes. A small percentage of respondents (2%), however, responded that they did not know how to access the service. Whilst the findings suggest that most respondents had been in receipt of contact telephone numbers and other access information it would appear that this question caused some difficulty. Responses such as ÔexcellentÕ and Ôvery goodÕ revealed that 42 respondents had interpreted the question to mean ÔassessÕ rather than ÔaccessÕ. These were excluded from the analysis.

Patients’ experience of the breast care nursing specialist service In seeking patientsÕ opinions of their experience of using the BCNS service, respondents were asked to respond to a series of statements that reflected the components of the BCNS service. A 4-point, 28item Likert scale was utilised with Ôstrongly agreeÕ, ÔagreeÕ, ÔdisagreeÕ and Ôstrongly disagreeÕ options. As not all respondents may have experienced all aspects of the service a ÔcanÕt sayÕ option was also included, although this is excluded from the analysis in Table 1. As Table 1 shows, responses were ÔskewedÕ towards the positive, with most statements having 90% and above of responses in the Ôagree/strongly agreeÕ categories. There were exceptions, however, nine statements yielding 10% or more responses in the ÔdisagreeÕ category. Of these statements, five related to information provision, two to emotional support, one to practical nursing care and one to availability. As can be seen from Table 1, 17% (26) of respondents felt that the BCNSs were not always available when patients tried to contact them. Despite that observation, however, all respondents knew that they could leave a message to which 98% (145) believed they would receive a rapid response. A number of respondents felt that the information they had been given could have been better. Ten percent (16) indicated that they had not been told which treatments were most appropriate for them, whilst 13% (20) suggested that they had not had sufficient information to deal with the after-effects of their treatment. The information provided about adjuvant therapies was also seen to be lacking by some. Fifteen percent (20) of respondents believed that they had been given insufficient information about chemotherapy and radiotherapy, with a further 16% (21) indicating that they had not been informed about how to deal with side effects of such treatments. It could, however, be argued that this area of care may be the responsibility of the Oncology Clinical Nurse Specialist rather than the

24 Clinical Effectiveness in Nursing Table 1 Patients’ perceptions of experience scale Strongly agree The Breast Care Nurses are easy to contact 69 (42.9%) The Breast Care Nurses are generally available 55 (35.3%) when you try to contact them I know I can leave a message if the Breast Care 92 (56.8%) Nurses are not available When Breast Care Nurses are not available, 86 (58.1%) they will generally respond within 48 h to an enquiry for information and advice If I have any concerns about my condition I 116 (69.5%) know I can contact the Breast Care Nurse(s) When I come to the hospital for outpatient 83 (54.9%) appointments the Breast Care Nurses are available, if I need them The Breast Care Nurses support women 94 (57.3%) emotionally at all stages (before, during and after their treatment) 97 (59.9%) The Breast Care Nurses support women with practical help and advice at all stages (before, during and after their treatment) The Breast Care Nurses provided me with all 99 (59.3%) the information I needed to understand my breast cancer and its treatment The Breast Care Nurses gave me the 90 (55.9%) information I wanted regarding the different treatments for my breast cancer The Breast Care Nurses explained which 79 (50.6%) treatment(s) were most appropriate for me The Breast Care Nurses supported me in the 78 (52.7%) choices I made about my treatment Breast Care Nurses provided me with all the 89 (54.6%) information I needed to help me prepare for my operation The Breast Care Nurses gave me information 78 (48.8%) and advice before I went home after having my operation The Breast Care Nurses gave me information 68 (50%) about treatments such as radiotherapy and chemotherapy The Breast Care Nurses gave me practical help 63 (48.8%) and advice regarding the side effects of treatments such as radiotherapy and chemotherapy Breast Care Nurses gave me information 85 (54.1%) without using too much medical jargon The Breast Care Nurses helped me cope when 93 (60.4%) I was diagnosed with Breast Cancer The Breast Care Nurses have helped me cope 78 (50.6%) with the effects of having breast Cancer The Breast Care Nurses make me feel that I am 85 (55.5%) not alone The Breast Care Nurses understand the needs 91 (56.9%) of women who have had a diagnosis of breast cancer The information and advice Breast Care Nurses 77 (49%) gave made me less anxious about my surgery The Breast Care Nurses have given emotional 50 (37.3%) support to my family Breast Care Nurses have given me practical 69 (48.6%) nursing care (for example wound care, arm care, fitting breast forms etc) The Breast Care Nurses have given me details 40 (29.9%) of Breast Support Groups and other organisations I can go to for information and advice The Breast Care Nurses are there for me when 82 (49.7%) I need them Breast Care Nurses provided me with 72 (46.2%) information to help me deal with the practical aspects of the condition after I had had surgery and/or other treatment The Breast Care Nurses helped me cope with 56 (40.3%) the emotional effects of the surgery after I was discharged from hospital

Agree

Disagree

Strongly disagree

83 (51.6%) 75 (48.1%)

7 (4.3%) 25 (16%)

2 (1.2%) 1 (0.6%)

70 (43.2%)

Number of responses per item 161 156 162

59 (39.8%)

2 (1.4%)

1 (.7%)

148

49 (29.3%)

1 (.6%)

1 (.6%)

167

62 (41.1%)

5 (3.3%)

1 (.7%)

151

62 (37.8%)

6 (3.7%)

2 (1.2%)

164

58 (35.8%)

5 (3.1%)

2 (1.2%)

162

60 (35.9%)

7 (4.2%)

1 (0.6%)

167

61 (37.9%)

8 (5.0%)

2 (1.2%)

161

61 (39.1%)

15 (9.6%)

1 (0.6%)

156

59 (39.9%)

11 (7.4%)

64 (39.2%)

9 (5.6%)

1 (.6%)

163

67 (41.9%)

11 (6.9%)

4 (2.5%)

160

48 (35.3%)

19 (14.0%)

1 (.7%)

136

45 (34.9%)

18 (14%)

3 (2.3%)

129

70 (44.6%)

2 (1.3%)

157

51 (33.1%)

10 (6.5%)

154

62 (40.3%)

13 (8.4%)

63 (41.2%)

5 (3.3%)

153

62 (38.8%)

7 (4.4%)

160

69 (43.9%)

11 (7%)

157

50 (37.3%)

29 (21.6%) 5 (3.7%)

134

53 (37.3%)

15 (10.6%) 5 (3.5%)

142

58 (43.3%) 30 (22.4%)

148

1 (0.6%)

6 (4.5%)

154

134

79 (47.9%)

4 (2.4%)

165

64 (41%)

16 (10.3%) 4 (2.6%)

156

53 (38.1%) 23 (16.5%)

7 (5%)

139

A patient-focused evaluation of breast care nursing specialist services in North Wales 25

BCNS, especially since the opening of the North Wales Cancer Centre. Almost a third (n ¼ 36, 27%) of respondents stated that they had insufficient information about support groups or other organisations they could contact for further advice. Follow-up support following discharge from hospital was seen as less than optimum by 22% (30) with a further 25% (34) of respondents feeling that there had been little support for family members.

Strengths and weaknesses of the Breast Care Nursing specialist service from the patients’ perspective To investigate the strengths of the Breast Care Nursing Service respondents were asked, Ôin your opinion what do you think the Breast Care Nurses do well?Õ In response, 158 provided qualitative comments. As Table 2 indicates, ten main themes arose from the data. Coping and support (n ¼ 112), advice and information (n ¼ 47), everything about the service is good (n ¼ 25), understanding (n ¼ 23) and individuality (n ¼ 22) yielded the greatest number of comments. Respondents were also asked two ÔopenÕ questions, the first of which asked whether there was anything that they believed the service should do but does not currently do. This generated 116 responses, including four respondents who felt unable to comment due to lack of experience. Forty-three respondents were unable to offer any suggestion on how the service could be improved, writing instead about the positive nature of their contact. One respondent, for example, wrote ÔNo I cannot think of anything lacking. I believe that our breast care nurses give excellent advice and supportÕ whilst another said ÔMy nurse was excellent, both practically and emotionally being there for me at diagnosis and before and after my operation and treatmentÕ. Despite the apparent difficulty in being critical about the BCNS service, sixty-nine respondents suggested areas of weakness in the service. As can be seen from Table 3, thirteen main themes were identified from the data, most comments being related to perceived weaknesses in patient follow-up services (n ¼ 20), support (n ¼ 15), availability (n ¼ 13) and information (n ¼ 12). The identified themes appear to support those areas of the service that respondents felt had performed less well.

DISCUSSION A limitation of the study is that the questionnaire did not distinguish between different types of procedure experienced by respondents and it might be that different types of treatment result in different experiences of the BCNS service. Furthermore, although open questions generated considerable data,

respondents did not always express themselves fully and there was no opportunity for probing. Despite these limitations, the high response rate suggests that the findings can be generalised to the BCNS service within North Wales with reasonable confidence. In addition, the high degree of consistency between the quantitative and qualitative data indicates that the findings are reliable. Questionnaire findings reveal that women were very positive about the service, which was perceived to offer a high level of psychological and emotional support, was easily available and accessible, provided appropriate advice and information, and was individualised. Moreover, BCNSs were perceived as understanding, to provide continuity of care, and to have a high level of interpersonal skill and specialist expertise. Additionally, the findings indicated that most respondents were aware of the service and had been given contact details. The data revealed an overwhelming sense of gratitude for the BCNS service, which may have affected how respondents perceived their experience. As in Burton and Parker (1994)Õs study, respondents were uncritical of the service, with most questions eliciting positive responses. Where weaknesses were evident, comments were expressed as constructive criticism. Alternative explanations for this positive response could be the lack of prior knowledge of the service by most respondents, so that they had no preconceived ideas about the BCNSsÕ role on which to base their judgements. Alternatively, it could be rooted in the womenÕs response to having survived breast cancer. Moreover, the positive evaluation could equally be because patientsÕ needs were being met. As in other studies (e.g., Suominen 1993), weaknesses in the BCNS service included provision of information. It could be that nurses are unclear about whether they, or doctors, should provide information (Suominen 1993), or equally, patients could have received information verbally, but failed to recall it because it was not followed up or backed up by information from other sources (NHS Centre for Reviews & Dissemination 2000). Inadequacy of follow-up treatments was also supported by Grey et al.Õs (1998) findings that women wanted more information on follow-up policy, and changes in policy regarding treatments. Given that little is known about the perceived information needs of patients with breast cancer more work is needed in this area. It is possible that lack of information regarding chemotherapy and radiotherapy reflects some role conflict/ambiguity between BCNSs and Oncology Clinical Nurse Specialists within North Wales. Whilst this may be the case, failure to provide this information could be due to the timing of treatment and follow-up, some patients having to wait many weeks for wounds to heal before commencing radiotherapy. Some respondents also expressed a desire to know what to expect post

26 Clinical Effectiveness in Nursing Table 2 Content analysis of comments made in response to the question, ‘In your opinion what do you think the Breast Care Nurses do well’? Themes

Examples of comments made

Accessibility of service (n = 10)

 ‘All you need to do is pick up the phone they are willing to help’.  ‘After 15 months I still feel I could ring them with any problems’.

Coping and support (n = 112)

 ‘Helped with the initial shock of discovery and gave support before and after the operation. They give a lot of support for the client and relatives by explaining what is going to happen, where, when and why’.  ‘I was supported so well that I was able to think positively and made to realise that cancer is not as frightening as I had always thought it to be’.  ‘They lay to rest anxieties and make a disastrous situation bearable. They also give a non-judgmental shoulder to cry on.’  ‘They listen to us when we are really low and depressed, not just about myself but other family problems. I found I could talk about all sorts. I felt very much better after’.  ‘Most importantly breast care nurses do so well in making us cancer patients feel normal again. I never realised the extent of the horror, in some unusual cases almost feeling like a ‘leper’ that the ‘outside’ world adopts.’

Advice and Information (n = 47)

 ‘Give advice on the phone’.  ‘As soon as you have been diagnosed, someone was there to answer the immediate questions’.  ‘Came to see me to tell me about it and what I would do and how to go about it.’  ‘Give information without jargon. Provide sounding board/ever listening ear. Are every ready to help. Never minimise worries and concerns.’

Everything good (n = 25)

 ‘Everything! They are a special type of nurse I feel very lucky to live in Wales, the care I have had from all the team – Surgeon, Radio Therapy, Ex-ray, Ward Staff etc., could not have been any better. I feel safe in their hands, I have my first mammogram in July and if I have to start all over again I am not afraid. I know I will bet the best treatment.’

Understanding, empathy and compassion (n = 23)

 ‘They understand patient needs.’  ‘They are very understanding at all times’

Individual Service (n = 22)

 ‘Care, I never felt like a number’  ‘I was never made to feel rushed at any time during my appointments prior to surgery’.  ‘Having sensitivity and appreciation of each patient being an individual experiencing the illness in their own unique and personal way.’  ‘They will do whatever the patient wants. My nurse left me alone to deal with it myself at my request’.

Availability (n = 16)

 ‘Being there should one want advice’.  ‘I think that the availability of specialist nurses is good.’

Interpersonal (n = 16)

 ‘Yes I have definitely no complaints they make you feel part of their ‘family’.  ‘They are warm, friendly and are able to empathise with the patient’.  ‘Are equally ready and able to laugh with one or to provide a shoulder on which to weep’.

Knowing they are there (n = 11)

 ‘I feel very reassured that the nurses are there for me if ever I should need them’.  Made me confident to know I have help at the end of the phone when or if I need it’.

Home visits (n = 9)

 ‘They come out to the house and include all the family, so everyone knew what was going on’.  ‘The home visits were helpful, being able to discuss things away from the hospital environment’.

Knowledge and expertise (n = 6)

 .‘They assessed me and my family situation and I believed everything they told me because they are specialists’  ‘They have a great factual knowledge on breast cancer and its treatment to pass on to the patient’.

Continuity of care (n = 5)

 ‘Being continuously part of the treatment as one passes through the different stages and is dealt with by many people’.  ‘After care – excellent.’  ‘They follow up clients in hospital and at home.’

After-care/follow up (n = 3)

A patient-focused evaluation of breast care nursing specialist services in North Wales 27 Table 3 Content analysis of comments made in response to the question, In your opinion, is there anything that the Breast Care Nurses should do but don’t? Themes

Examples of comments made

Better follow up service after treatment/discharge (n = 20)

 ‘The Breast Test Wales unit finishes with you once you have had the final results from the hospital. For check-ups etc. you have to contact the Breast Care nurse at the hospital you are attending.’  ‘Once I was discharged from hospital, and was later told by my consultant that I needed further chemotherapy and radiotherapy after surgery, I received no contact from the breast care nurse.’  ‘A phone call every few months would be acceptable, as different problems arise as time after surgery progresses. To chat about follow ups, mammogram medication (and its effects) e.g., weight gain possible side effects’  ‘It would have been of great help to have home visits or even hospital appointments following the end of treatment. This is the time when some women have time to dwell on what has happened and anxiety sets in. It is not easy for some patients to ask for help therefore follow-up visits would be very beneficial’  ‘Breast care nurses should visit post op patients in their homes as routine (it can be quite isolating at the beginning).’  ‘Longer follow up after the operation and more frequent visits. Contact for reassurance or query is left to the patient which leads to the tendency not to ring up in the knowledge that they are very busy’.

Support (n = 15)

 ‘The breast care nurses are extremely supportive of the patient, but perhaps some time could be spent with the husbands or partners of the patients, they have to be strong and supportive of us and my husband and I both feel that a private chat with our partners would be beneficial.’  ‘The family need some support too, it is a major blow when breast cancer is first diagnosed in the wife and mother. I fully realise how time consuming a breast care nurses day is, but time set aside for discussion with the husband would be useful.’  ‘I experienced problems following radiotherapy. I contacted them twice, but felt a nuisance. Eventually I was seen, but not really reassured’

Availability (n = 13)

 ‘I feel breast care nurses should be more readily available in clinics, but due to immense workloads I understand that at present this just is not possible. I have often asked for their accompanying support at clinic appointments only to find that they are not available. (There simply are not enough of them to go around)’

Information (n = 12)

 ‘By being much more honest about the degree of pain we can expect to suffer, especially after removal of lymph glands. The pain, discomfort and numbness goes on for such a long time after surgery and radiotherapy that we begin to think we must be slow in getting back of normal. If it takes a year, tell us! It would help when trying to plan when we will be able to go back to work.’  ‘I was not given any advice/warnings of what to expect immediately after the surgery. It was my first visit to hospital and I was very scared, but it was my occupational health physician at work who forewarned me about the drain and drip’.  ‘Breast care nurses should have a leaflet to give to patients to explain their role.’  ‘The patient should be better informed about the various support groups we would contact if necessary following discharge.’  ‘Tell one how very sore the arm gets and under the arm too.’

Contact (n = 4)

 ‘I did not see or speak to the breast care nurse while I was having treatment until I had been given the all clear. Then she rang me to congratulate me.’  ‘I did not have contact with a breast care nurse during my first two visits when I was diagnosed and I feel that I should have seen her then.’  ‘The only difficulty I had was trying to contact them, it took a week to get in touch. As they are only part time I think they need an extra nurse or more working hours.’

Decision (n = 3)

 ‘I found the decision whether to take the mastectomy or lumpectomy very difficult.’

Need more BCNs, BCNs very busy (n = 3) Choice (n = 1) Clinic facilities for those with disabilities (n = 1)

 ‘I think it is a very good scheme but under resourced – there are not enough breast care nurses to cope with all that is expected of them’

Should offer some pain relief at biopsy (n = 1)

 ‘After seeing surgeon, necessary thing is taking a small biopsy for examination, which I immediately had done. They wanted three, but it was so painful I only let doctor take two. . . Could some sort of freeze pain be used on the breast to make it better for patient and medical staff?’

Supervision of Exercise (n = 1) Waiting for results an anxious time (n = 1) Self esteem activities (n = 1)

Distance to travel to clinic (n = 1)

 ‘When visiting a very ill neighbour in hospital, the one thing that cheered her up. . . was an organised beauty session. Many of us might consider this totally superfluous but cosmetic firms had donated free cosmetic sachets. Possibly something like this e.g., advice on being positive, importance of exercises, looking good etc. could be included at coffee morning sessions.’

28 Clinical Effectiveness in Nursing

operatively, including information about wound appearance and post operative symptoms. Whilst this finding may be explained by other studies, which suggest that access to and critiquing of information by nurses remains inadequate (Fitch et al. 1998, Daniels 2000), it could be that BCNSs feel that this level of information might cause distress. On the other hand, limited resources makes followup of women with breast cancer difficult so that opportunities to provide information at the appropriate time might not occur. The findings also indicate lack of information regarding support groups and other organisations, thus supporting Pennery and MalletÕs (2000) findings that, although women prefer to receive their follow up care from a BCNS, there is a lack of continuity of care, and patients are uncomfortable about expressing emotional concerns to BCNSs. Furthermore, Effective Health Care (1996) cites evidence that although patients value a continuing relationship with a single provider, this is often not the case. Patients should also have consistent information from different sources of health care and should have easy access to care. Each woman, for example, should have a contact number for her BCNS, since this has been shown to lead to better quality of life and lower levels of morbidity than either routine care or support from voluntary groups. Certainly within the current study, the majority of patients had this information with some explicitly indicating the value of knowing that the BCNSs are there if needed. Whilst this study found that women had contact numbers so that they could access the BCNSs, following up patients beyond cessation of treatment seems to be an issue that was important, some respondents indicating emotional and psychological crises following discharge and end of treatment. It would seem that, despite having a contact number, these respondents might have had difficulty initiating contact as a result of their crisis. Additional areas of concern in this current study were a need for more emotional support for some patients and their families and practical nursing care. This is an interesting finding, as most literature indicates the value of BCNSs in providing psychological support for women (Burke & Kissane 1998), although their support to other family members is less clear with some evidence demonstrating their value (Halcrow 1998) and other research being more critical (Lindop & Cannon 2001). It is interesting that there is no literature supporting the need for practical nursing care, as suggested by participants in this study. These concerns were also reflected in respondentsÕ assessment of weakness of the BCNS service. Other evidence from four empirical studies highlights the problem of lack of continuity for patients with breast cancer (NHS Executive 1997), as patients rarely see the same doctors at breast clinics during follow-up. As some of the women

remarked within the current study, the BCNS was the lynchpin, that despite seeing numerous health professionals, BCNSs were a constant presence/ contact throughout their treatment. A minority of respondents indicated that there were insufficient BCNSs to cope with demand – a view supported by Luker et al. (1996; 2000) who argue that due to lack of resources, BCNSs are unable to offer a comprehensive follow-up service to women. Because of this, women may not contact BCNSs, because Ôthey donÕt want to bother themÕ, despite being in need of help.

CONCLUSION The evaluation of the BCNS service within North Wales was generally positive, with service users indicating that the existence of the service was valuable in terms of improved patient care. BCNSs were commended for the excellent support and advice provided for patients around the time of diagnosis. There were, however, some areas of the service that respondents felt could be improved. These centred around meeting information needs of women with breast cancer, availability of BCNSs, and providing emotional support to family members and to women in the longer term as well as providing practical care. The provision of resources for training in counselling and access to information and how this can be shared with women, together with increasing the numbers of BCNSs would go a long way to addressing these deficits in service provision. ACKNOWLEDGEMENTS The authors would like to thank the North Wales Health Authority for funding this study, the breast care nurses in North Wales for their advice throughout the project and assistance in questionnaire distribution and the patients completing and returning questionnaires.

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FURTHER READING Burton MV, Hammond RW 1994 Satisfaction of breast cancer patients with their medical and psychological care. Journal of Psychosocial Oncology 12(1/2): 41–63 Hammond C 1994 A nurse practitioner-doctor comparison study at the Nigel Porter breast care unit at the Royal Sussex County Hospital Brighton. University of Surrey Jenkins VA, Fallowfield LJ, Poole K 2001 Are members of multidisciplinary teams in breast cancer aware of each otherÕs informational roles? Quality in Health Care 10: 70–75 NHS Executive 1996 Guidance for purchasers: Improving outcomes in breast cancer. The manual. NHS Executive, Leeds NHS Executive 2000 The nursing contribution to cancer care: a strategic programme of action in support of the national cancer programme. http://www.doh.gov.uk/ cancer/nursing.htm