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A qualitative study to evaluate breast care nursing in North Wales from the user perspective
A qualitative study to evaluate breast care nursing in North Wales from the user perspective Ros Carnwell and Sally-Ann Baker Background to the study: Breast care services for Wales 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: A study was conducted to evaluate the Breast Care Nursing Service within North Wales from the perspectives of both staff and patients. This paper presents the findings of the second stage of the patient survey, the aim of which was to investigate patients’ experiences using a qualitative interview. Methodological issues: Thirteen patients were interviewed using a semi-structured interview guide developed from the findings of the patient questionnaire survey. Findings/Conclusion: Although patients valued the BCNS service for the support offered around the time of diagnosis, improvements were also identified. Initial referral could be improved by training practice nurses and district nurses in recognising early signs of breast cancer. BCNSs could provide support and supervision in this role. During diagnosis and treatment, BCNSs could be more proactive in providing information and support to women and their families. Further research is needed in order to develop a tool to determine how patients would like this need to be assessed. Finally, improvements in follow up care require either additional resources in the form of BCNSs, or more involvement of community nurses in performing certain procedures and offering long-term support. c 2003 Elsevier Ltd. All rights reserved.
Keywords: breast care nurse specialist, evaluation
INTRODUCTION
Ros Carnwell BA, MA, PhD, RGN, RHV, CPT, Cert Ed (FE) (Professor of Health and Community Research) Sally-Ann Baker BSc (Researcher) Centre for Health and Community Research, North East Wales Institute, Plax Coch Campus, Wrexham WLL 2AW, UK Correspondence to: Ros Carnwell, E-mail: [email protected]
In the UK (United Kingdom) Breast Care Nurse Specialists (BCNSs) became prominent in caring from women with breast disease during the 1990s. Their role was endorsed by government targets set by Health Improvement Programmes (National Health Service Executive [NHSE] 1996) and by the Department of Health (DoH 2000a; 2000b). In Wales, standards set by the Cancer Service Co-ordinating Group (CSCG) require a specialist multi-disciplinary team to provide breast cancer care (National Assembly for Wales 1998, 2000). This must include two BCNSs within each NHS Trust, who have completed an accredited programme of education.
Clinical Effectiveness in Nursing (2003) 7, 171–179 c 2003 Elsevier Ltd. All rights reserved. doi:10.1016/j.cein.2003.09.002
Consequently, the three North Wales NHS trusts now employ BCNSs. No screening service is offered as this is provided by Breast Test Wales (BTW). In North Wales BTW comprises two mobile units, employs one BCNS and diagnoses approximately 150 new cases of breast cancer per year.
THE ROLE OF THE BREAST CARE NURSE BCNSs provide support and information to women with breast cancer and their family, within a multidisciplinary framework (Jary & Franklin 1996; Tait 1996; White & Wilkes 1999; Specialist Breast Nurse
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Project Team 2000). This includes complementing support given by carers and providing continuity and co-ordination of care (Tait 1994). This support has numerous benefits including: alleviating anxiety and depression and increasing knowledge (Burke & Kissane 1998), providing social and emotional support and counselling and identifying stress (Woodward & Webb 2001; Specialist Breast Nurse Project Team 2000), and reducing psychological morbidity (McArdle et al. 1996; Neil 1996). Provision of support also seems closely related to provision of information (Effective Health Care 1996), which in itself can alleviate anxiety (Bottomley & Jones 1997). However, despite BCNSs’ success in supporting women with breast cancer, they have been found deficient in providing information, psychological support and counselling (Garvican et al. 1998; Tait 1994; Webb & Koch 1997; Farmer 2000). Tait (1994), for example, reported a reluctance to explain treatment options, whilst Round et al. (1997) found that only 42% of patients (n ¼ 57) had been given a choice in treatments. This might be because nurses have difficulty accessing information, which affects the amount of information provided (Fitch et al. 1998) or because they are uncertain whether they or doctors should provide such information (Suominen 1993). Furthermore, some diseases do not merit choices in treatment or women may not be given a choice for other medical or psychological reasons. Equally, women have different needs for information depending on their age (Round et al. 1997), coping styles (Burton & Parker 1994) and stage of their illness (Rees & Bath 2000; Lindop & Cannon 2001), with most support needed and provided around the time of diagnosis (Luker et al. 2000). Responding to women’s information needs is therefore complex, requiring ‘team agreement about who should provide information about treatment, but also an understanding of what patients’ needs are, access to information by health care staff and ability to communicate information effectively’ (Carnwell & Baker 2003). BCNSs’ capacity to provide a comprehensive follow-up service is also limited by resources (Luker et al. 1996, 2000). Thus, although women prefer BCNSs to provide follow-up care (Pennery & Mallet 2000), general practitioners normally provide this care, despite their lack of specialist expertise (Round et al. 1997). This has obvious implications for continuity of care (Effective Health Care 1996; National Health Service Executive 1997). The literature suggests, therefore, that although BCNSs are the most appropriate professionals to provide support and information to women with breast cancer, this service is limited in several respects. First, there is uncertainty about whose responsibility it is to provide information. Second, there may be difficulty in accessing information. Third, women’s need for information differs according to their individual circumstances. Finally, a
lack of resources often results in support being provided around the time of diagnosis, with subsequent care provided by general practitioners.
THE STUDY A study was conducted to evaluate the Breast Care Nursing Service within North Wales from the perspectives of both staff and patients. The patient survey was divided into two stages (Carnwell & Baker 2003). This paper presents the findings of the second stage of this survey, the aim of which was to investigate patients’ experiences using a qualitative interview.
DESIGN AND METHODOLOGY The study utilised a semi-structured interview, the topic guide being developed from the findings of the patient questionnaire survey conducted during the previous stage of the study.
SAMPLE AND ACCESS Participants were recruited through the questionnaire survey. In response to a question inviting them to participate in an interview 91 (53%) participants offered their contact details. As resources only permitted a small number of interviews (n ¼ 13), the sample was selected randomly to ensure all participants had an equal chance of participation. Interviews were arranged at participants’ convenience. Ten were undertaken within participants’ homes and three were conducted at North East Wales Institute of Higher Education. All were taperecorded with the participant’s permission.
ETHICAL CONSIDERATIONS Ethical approval was granted by North Wales Local Research Ethics Committee. Participation in the study was voluntary, interviewees being free to withdraw at any time. Informed consent was provided, confidentiality was assured and participants’ identities were protected during transcription, analysis and reporting of findings. As participants were vulnerable, care was taken to ensure that interviews caused no distress and details of contacts were provided should they require help.
ANALYSIS The interviews generated 105 pages of typed transcript. These were returned to participants to check for accuracy, and so that they could add further detail if they wished. Some participants added information
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and/or corrected transcription errors. The transcripts were then read, re-read and analysed using content analysis. Where participants made similar comments they are clustered together. Data were verified by two researchers checking the emerging findings independently. The findings are organised under thematic headings of: participant characteristics; accessing the breast care service; experiences of the breast care nursing service at diagnosis; experiences of the breast care nursing service before surgery; experiences of the breast care services post-operatively; and perceived strengths and weaknesses of the breast care nursing service. Within some themes, categories also emerged (Table 2).
FINDINGS Participant characteristics Of the 13 participants, six were diagnosed by BTW screening programme and seven by symptomatic referral. Participants had a range of diagnoses and treatments. Eight had undergone a ‘lumpectomy’ (or wide local excision [WLE]) as the only treatment (Table 1). Two had had a WLE followed by mastectomy, and two had undergone a mastectomy without WLE. As expected, participants within the symptomatic group were more likely to have undergone chemotherapy and/or radiotherapy than screen-diagnosed participants.
Accessing the breast care nursing service Although the time from initial outpatient or screening appointment to surgical admission was
rapid (between 1 and 5 weeks), two participants reported problems persuading their GP to refer them to a consultant in the first instance. Both believed that this delay had worsened their cancer and intensified their treatment. For all participants the first contact with the BCNS was at clinic. Nine participants recalled the BCNSs being present at diagnosis and remaining behind to explain the diagnosis. A BCNS telephoned all 13 participants within two days of diagnosis and 10 participants were visited at home at least once prior to admission. All participants were contacted by a BCNS following surgery. Twelve had at least one home visit, one being followed up by phone. All women knew how to contact the BCNS and that they could access the service at any time. Three participants were surprised by the openness of the service, whilst 11 commented on the support offered. One area of concern was the interface between BTW and trust-based services. Following surgery, half the screen-diagnosed women (n ¼ 3) were unsure which service to call if they required support. Two were unaware of the BCNSs within the NHS Trusts, whilst another commented that the two types of BCNSs did not appear to work together.
Experiences of the breast care nursing service around the cancer diagnosis Participants perceived the support offered at diagnosis as particularly beneficial in helping them cope with the diagnosis and treatment decisions. Five categories emerged from the data: expectations of a cancer diagnosis, involving the family, getting the bad news, information provision at diagnosis and making treatment decisions (Table 2).
Table 1 Interview participant characteristic by type of diagnosis
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Table 2 Themes and sub-themes emerging from the data Themes Participant characteristics Accessing the breast care service Experiences of the breast care nursing service at diagnosis Experiences of the breast care nursing service before surgery Experiences of the breast care services post-operatively Perceived strengths and weaknesses of the breast care nursing service
Sub-themes
Expectations of a cancer diagnosis Involving the family Getting the bad news Information provision at diagnosis Making treatment decisions Information Hormonal therapy supporting the patient
Expectations of a cancer diagnosis Although each woman’s experience of diagnosis was unique, differences emerged between screendiagnosed non-screen-diagnosed women, in relation to their expectation of a cancer diagnosis. The six women who had been screened did not expect to be recalled, three being particularly worried by the recall letter. One woman recounted how she was leaving for work when the letter arrived: “I just totally went to pieces because I thought ‘they have made a mistake, caravans don’t work’. If I had gone for a mammogram to the hospital . . . I just could not go to work” (participant 10). Conversely, two women who had experienced symptoms, suspected something was wrong and although the run up to diagnosis was stressful they had time to prepare for bad news. As one participant said ‘I felt OK [about the diagnosis] because I really was suspicious . . . I was expecting it to be bad news but when you are told for definite you have still got this disappointment’ (participant 12). This was not always the case, however. One participant recounted how she convinced herself that her symptoms were not serious. ‘It really is a massive shock to the system to be told you have cancer. I’d gone to [hospital] convinced that there was nothing wrong with me, so unfortunately there was no-one in more shock than I was’ (participant 13). Involving the family Although two participants stated that BCNSs should involve partners more in discussions, five were satisfied with this involvement. Their partner’s presence was valued, as they recalled information and asked questions that participants ‘had not thought of’. Participants’ own involvement of their families also varied. Although two avoided telling family members until after the diagnosis, eleven involved their families from the beginning. Five of these, however, edited information to alleviate anxiety. This was stressful as the following quote illustrates, ‘I found that I was putting a face on for my husband because I did not want him to think that I was worried . . . so it was nice to be able to talk to the breast care nurses and say what you really think.’ (participant 12).
Getting the bad news When women recalled their diagnosis, nine reported a BCNS staying behind to talk with them and their partners. Twelve participants had difficulty recalling events, portraying the situation as ‘unreal’, or a ‘blur’. As one recounted, ‘I was sort of in limbo, everything was going on around me and they were saying things to me but I was not really taking them in’ (participant 3). Another walked out of the clinic because she was so nervous. Two participants received the news more calmly. As one reported, “I went in and I was the one out of the five who had the cancer. It did not shock me . . . I just said ‘fine, what are you going to do?”’ (participant 4). Almost all (12) participants expressed gratitude for the BCNS’s reassurance, support, information and opportunity to ask questions. Moreover, BCNSs were perceived as someone who had time for them. ‘We were not left on our own to look at each other and say well what next . . . They were there to help us and talk about it . . . It felt very supportive and I was looking forward to them coming to the house’ (participant 12). Participants also valued the home visit in helping them cope with the diagnosis, consider treatment options and prepare for hospital admission. As one said, ‘. . . she asked . . . how much information I had taken in . . . I knew what was going on, but she was ready to explain the whole lot of it again if necessary’ (participant 11).
Information provision at diagnosis Despite the support provided, seven participants expressed dissatisfaction with information provided at diagnosis. Due to lack of knowledge of cancer they did not ‘know what questions to ask’. Thus, when the BCNS asked them ‘what they wanted to know’ they felt unable to respond. One participant suggested that BCNSs should ask ‘how much would you like to know?’ before giving specific information about cancer and its treatment. Sometimes women felt unable to raise sensitive issues, such as survival rates. As one said, “I had found this set of statistics that I showed my
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daughter to say ‘look . . . I am still going to be here in 10 years time . . .’ But then you can turn the statistics round and the truth is that I have got a 60% chance of survival . . . I would have liked her [the BCNS] to bring this up so that I had a chance to talk to somebody about . . .” (participant 7). Other participants needed information about outcomes of surgery and treatment at an earlier stage. This would have avoided unnecessary worry, as they would have known what to expect postoperatively.
Making treatment decisions As indicated above, information at diagnosis and home visits, helped participants to understand the diagnosis and decide about treatment. As three participants indicated, consultants emphasised that decisions were theirs and not the consultant’s. Facilitation of decision-making was also viewed as an area in which BCNSs excelled. As one woman said ‘you are given a lot of options and have to make decisions fairly quickly’ (participant 12). Four said that their initial reaction was to rid themselves of the cancer immediately. Indeed, one woman (who had a WLE) wanted ‘to have both breasts off’ (participant 10) and would have done so had the BCNS not explained possible treatment options. Two women decided to have a mastectomy and felt supported in this as the following quote illustrates: ‘I could have had that [a WLE], but again that was a decision that we came to by discussing it with the breast care nurse. Because I had had lumps I always would have been worried if I had not a mastectomy’ (participant 12).
Experiences of the breast care nursing service before surgery Although BCNSs supported women during the initial home visit, following hospital admission five women did not see a BCNS pre-operatively. This was not considered problematic as ward staff were supportive, caring and friendly. Although eleven participants felt well prepared for surgery, two felt they could have been better prepared. One was unaware that she would wake up with drains in situ, whilst another was distressed by an unexpected change of surgeon ‘. . . I did not know who he was and I went down to theatre crying. He was very good, but it was a shock at the time’ (participant 7).
Experiences of the breast care nursing services post-operatively Within the theme of post-operative experiences, three categories emerged from the data: information, hormonal therapy and supporting the patient (Table 2).
Information Whilst nine participants considered information about the post-operative period to be adequate, four would have liked more information at an earlier stage. None of these women had had a mastectomy. Three were anxious about a recurrence due to post-operative symptoms, such as pain, numbness and wound problems. Two suffered psychological distress and two suffered unexpected breast changes. For one woman, it would have been helpful to know ‘why was I cross one day, why did I feel miserable? . . . You cannot talk to anybody else because they are too close, too involved, you need somebody who is independent’ (participant 10). These participants discovered later that their experiences were normal and felt they should have been better prepared. One discovered that her postsurgery symptoms were common by reading Miriam Stoppard’s The Breast Book (1996) 6 months post-operation. Furthermore, two participants were not informed about breast changes following radiotherapy and were surprised that their breasts had increased rather than diminished in size. A further two participants would have liked early information on lymphoedema management. Although women who accessed a lymphoedema service praised the treatment they received, two only discovered the service by chance. One now realised the impact that removal of lymph nodes would have and ‘thought that was going to be something that I would have to put up with. Now because I have had some treatment I realise it is not. I have discovered how to control it’ (participant 7). Two participants valued the video that was available, one suggesting it should be offered to all who need lymph glands removed. Hormonal therapy For the four women undergoing hormonal therapy (e.g., tamoxifen) side effects, such as sweating, were distressing. Two, however, had unexpectedly discovered that different brands had different side effects. One had found an information leaflet, which she was studying in order to alleviate side effects. Supporting the patient Support needs of participants also varied. Nine felt well supported post-operatively, having regular contact with the BCNS. Whilst two women’s wishes for less support were respected, four needed more support. One, for example, said the BCNS visited shortly after she went home and ‘was with me all the way through . . . I do not know what I would have done without her’ (participant 3). Moreover, BCNSs accompanied some patients for radiotherapy consultations and other appointments. For four women who had a WLE more support was needed following cessation of treatment. For
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two of these, lymphoedema treatment helped alleviate their fears, as they could share their concerns. Leaflets were not enough, as one participant said, ‘Reassurance, what do I do now, because these bras do not fit me anymore? Am I going to put on weight with the tamoxifen? . . . Am I going to be off the tamoxifen? . . . You have got the answers to, but because you are not functioning 100% you just need to be asking the questions’. Although BCNSs assured patients that they could contact them at any time, women did not always do so. One woman felt lonely and depressed following cessation of treatment and reported how ‘It was difficult to talk to my family about how I was feeling, because they so much wanted me to be better’ (participant 13). However, because she felt so low she felt unable to contact the BCNS. Another woman felt that, by maintaining an appearance of coping, her needs went unrecognised. In these cases follow up contact would have helped. Generally, BCNSs responded quickly to requests for help, although one participant felt dissatisfied. ‘I had to wait [four months] for my radiation therapy. . . . I did ring up and leave a message on the answer machine saying that I would like to talk about the radiation therapy and I got no reply . . .’ (participant 7).
Perceived strengths of the breast care nursing service When participants were asked about strengths of the BCNS service, they were very positive. Whilst many advantages are discussed above, additional categorises emerged as follows: ‘knowing they are there’, ‘information’, ‘patient centred’, ‘support’ and ‘trust’.
Knowing they are there Eight participants commented on the importance of knowing BCNSs were available, ‘they were very reassuring in the fact that they would be there for me . . . Dealing with appointments, treatments, news, anything that was coming, they were there’ (participant 12). Another described her relationship with the BCNS as like a friend ‘Perhaps because they have been there from the beginning and they are like a friend . . . I personally got so much confidence in them to get me through’ (participant 12). The relationship was not restricted to the time of diagnosis and treatment. As one participant reported, ‘there have been months gone by when I have not been in contact with them but you know they are there . . . that is the comforting thing’ (participant 1). Indeed one participant said the BCNS invited her to phone even three years later. Information ‘Knowing they are there’ also seems to be related to the need for information and support/reassurance. Explanations about forthcoming hospitalisation
were particularly appreciated. One participant was anxious about visiting a hospice for Lyphoedema treatment, as she believed ‘people went there to die . . . E sat me down before going to see G . . . and explained . . . what will happen . . . By the time I got home I knew, and when you got to the hospice it did do exactly what they said’ (participant 11). Such explanations prepared women for what was ahead. As one participant said, ‘I had a clear picture of what was coming and how to deal with it . . .’ (participant 12).
Patient-centred The service was perceived as patient-centred by seven participants, who felt valued, respected and cared for. The BCNS responded quickly to requests for information, reassurance or practical help and had time for them. Two women, for example, recounted how the BCNS drained their seroma in their own home on the day they made contact. Another reported how the BCNS phoned her following her second scan to ask if she was sore and to reassure her that she could ring if she wanted a chat. Support The support offered by BCNSs was characterised by the lack of barrier between them and their patients, and the time they gave them. This was partly because nurses, unlike doctors, were perceived as on the same level as the patients. As one participant said, ‘You don’t feel there is a barrier between you and the breast care nurses. They are so friendly on your level’ (participant 12). Participants clearly felt able to phone the BCNS, without having their problems trivialised. One participant commented that, Even the littlest thing you could phone up and not feel stupid (participant 1). Trust The lack of barrier also engendered a sense of trust, which for one participant reduced her worry. ‘If it was a choice between asking the doctor in the unit something I was worried about or just keeping quiet and just worrying, I keep quiet and just worry because I was scared to trust, but . . . the breast care nurse . . . you can talk to them’. Other participants referred to the ‘caring’ characteristics of the nurses, including a feeling that ‘it was not just a job’, ‘kindness’ ‘easy to talk to’, ‘like family’ and ‘sensitive to needs’, all of which enabled participants to express their concerns.
Perceived weaknesses of the breast care nursing service Participants were asked if there was anything that the BCNSs could improve. The main weaknesses concerned information needs of patients and their
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families, comfort and homeliness, follow up services, and resources.
Information needs Participants emphasised the need for early information, such as leaflets and booklets to explain treatment and hospital routines. One participant needed information about lymphoedema massage, whilst another commented that all women should be offered the lymphoedema video. Another believed information should be simple, and should include the whereabouts of telephones, smoking rooms and shops. Information about support groups was also necessary. Comfort and homeliness One participant commented on the importance of retaining a sense of normality whilst in hospital by wearing day clothes. This is the type of information that could be included in an information leaflet. Follow up Some participants reported feeling isolated once treatment had finished, as they had no one to talk to and felt it was no longer appropriate to phone the BCNS. Some would, therefore, have welcomed a phone call from the BCNS to offer support.
Resources Several participants experienced difficulties travelling up to two hours daily, sometimes for removal of tubes, which it was considered district nurses should be able to perform.
DISCUSSION Overall, participants were extremely satisfied with the BCNS service and particularly valued the support and information provided during diagnosis and during pre and post-operative home visits. The service was considered to be patient-centred and the BCNSs were accessible. Although contact with the BCNS service does not commence until the point of diagnosis, the problem of delayed referral by GPs does have implications for BCNSs as it raises the issue of training of community nurses to enable them to recognise early signs of breast disease during their consultation with women. In North Wales, BCNSs have initiated a Diploma in Breast Care Nursing, with the aim of disseminating information to practice and community nurses. Once referral had taken place, participants had varied experiences of diagnosis. Those diagnosed by BTW through routine screening seemed less prepared for the diagnosis than those diagnosed symptomatically, who, although still shocked had
anticipated bad news. Given that up to one-fifth of patients are diagnosed via routine screening programmes (CHI and Audit Commission 2001) this is an important finding. Whilst most participants agreed that BCNSs involved their family in discussions, a minority said this could be improved. Participants’ own involvement of their families also varied, a minority avoiding telling their families until after diagnosis. These women particularly valued the opportunity to talk to the BCNS. Once the diagnosis had been made, follow up by the BCNS was rapid, with pre and post-operative home visits being usual. Although participants expressed gratitude for the openness and supportive nature of the service, some were confused by the interface between BTW and trust-based services. It is important to point out that BTW is only funded for the period of diagnosis and one post-operative visit. Women with breast cancer are then transferred to various teams within local NHS trusts. The interface between BTW and the trust will therefore depend on the ability of trusts to provide a symptomatic service to which to refer. The interviews revealed some contradictions, which reflect variations in experiences. Most women were reassured by BCNSs and appreciated the preadmission information they provided. Other strengths included: respect for them as individuals and responsiveness to need; the lack of barrier between the BCNS and patients; and the feeling of trust that this engendered. Despite these strengths, however, women felt that BCNSs could improve information provided, both around diagnosis and pre and post-discharge. This finding is supported by other studies (e.g. Grey et al. 1998; Suominen 1993; Fitch et al. 1998; Luker et al. 2000), which recommend more information on follow up policy and treatments, clarification of who should provide such information and to ensure that staff are able to access such information. The study reported here supports Rees & Bath’s (2000 p.839) view that ‘women have distinct needs for information throughout their breast cancer journey’. At diagnosis, for example, women need information on outcomes of surgery and different treatments. Furthermore, as women do not know what questions to ask, ‘how much would you like to know?’, was felt to be a better question that ‘what would you like to know?’. Provision of information around sensitive issues, such as prognosis and survival rates, would also have given some women the opportunity to discuss this. Others needed simple information leaflets explaining treatments and hospital routines. Unlike the findings of Tait (1994) the women in this study remarked that BCNSs excelled in helping them to choose between different treatment options. Evidence suggests that, although specialist nurses at the time of diagnosis of cancer, are in short supply (CHI and Audit Commission 2001) this can reduce anxiety and depression and hence lead to improved outcomes for patients (Effective Health Care 1996).
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For women requiring surgery, information needs differed pre and post-operation. Pre-operatively, women needed to know the surgeon’s name and that drains would be inserted during surgery. Post-operatively, women needed to know the types of emotional and physiological symptoms to expect following surgery; how the breasts change following radiotherapy; management of lymphoedema, possibly by viewing a video; and different types of hormonal therapy and their side effects. Participants’ experience of the BCNS service pre and post-operatively was extremely positive although some improvements could also be made. A small minority of women did not see a BCNS before surgery and some felt that they could have been better prepared. Following discharge from hospital, some participants would have valued more long-term follow-up from the BCNS. Although this was more available for women who had had a mastectomy, some women who had had a WLE also suffered problems post-operatively and would have appreciated more follow up. Although they knew that they could contact the BCNS if necessary, they often felt unable to do so and would have welcomed a phone call from the BCNS to offer support. This is an important finding as the National Assembly for Wales (2000) ‘treatment’ standard includes access to psychosocial support as part of palliative care services. This finding did not emerge from the questionnaire study (Carnwell & Baker 2003) since, because of the potential vulnerability of participants, they were not questioned about their specific treatment. Lack of long-term follow up care has also been reported in the literature and has been linked to a lack of resources (Luker et al. 1996, 2000; Effective Health Care 1996; National Health Service Executive 1997). Information and support for families, although not a strong finding of this study, is an important area of support that needs to be addressed (Fridfinnsdottir 1997).
CONCLUSION The study is limited by its small sample size. However, as a qualitative study the intention is not to generalise the findings, but to illuminate women’s experience of the BCNS service in more depth than was possible in the earlier questionnaire survey. Being the third phase of a three-stage study, the findings lent completeness to earlier findings and elicited qualitative data regarding women’s perceptions of the BCNS service. The service is highly valued by women with breast cancer and the strengths of the service far outweigh the weaknesses. The few areas for improvement can be divided into three main stages of the disease trajectory – initial referral, diagnosis and treatment, and follow-up care. Initial referral could be improved by training practice nurses and district
nurses in recognising early signs of breast cancer. BCNSs could provide support and supervision in this role. At the stage of diagnosis and treatment, improvements include being proactive in providing information and support to women with different breast conditions and their families. Further research is needed in order to determine how patients would like this need to be assessed. Finally, improvements in follow up care require either additional resources in the form of BCNSs, or more involvement of community nurses in performing certain procedures and offering long-term support.
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 for facilitating access to participants, and the women who were willing to share their experiences with us. We would also like to thank Sue Brady, breast care specialist nurse for Breast Test Wales, for critically reading the final article.
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A qualitative study to evaluate breast care nursing in North Wales 179 Jary J, Franklin L 1996 The role of the specialist nurse in breast cancer. Professional Nurse 11(10): 664–665 Lindop E, Cannon S 2001 Evaluating the self-assessed support needs of women with breast cancer. Journal of Advanced Nursing 34(6): 760–771 Luker K, Beaver K, Leinster SJ, Owens RG 1996 The information needs of women with breast cancer: a follow-up study. Journal of Advanced Nursing 23: 487–495 Luker K, Beaver K, Austin L, Leinster SJ 2000 An evaluation of information cards as a means of improving communication between hospital and primary care for women with breast cancer. Journal of Advanced Nursing 31(5): 1174–1182 McArdle JMC, George WD, McArdle CS, Smith DC, Moodie AR, Hughson AVM, Murray GD 1996 Psychological Support for patients undergoing breast cancer surgery: a randomised study. British Medical Journal 312: 813–816 National Assembly for Wales 1998 Breast cancer services: all Wales minimum standards Cancer Services Co-ordinating Group National Assembly for Wales 2000 Breast cancer services: all Wales minimum standards Cancer Services Co-ordinating Group National Health Service Executive 1996 Guidance for purchasers: improving outcomes in breast cancer. The manual, NHS Executive Leeds National Health Service Executive 1997 Guidance for purchasers: improving outcomes in breast cancer: the research evidence. Department of Health Neil S 1996 Psychological support for patients undergoing breast cancer surgery. British Journal of Medicine 312: 813–817
Pennery E, Mallet J 2000 A preliminary study of patients’ perceptions of routine follow-up after treatment of breast cancer. European Journal of Oncology Nursing 4(3): 138–145 Rees CE, Bath PA 2000 The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998. Journal of Advanced Nursing 31: 833–841 Round A, Brackenridge A, Stead JW 1997 Breast cancer: development of a patient-focused audit tool. Journal of Clinical Effectiveness 2(3): 73–77 Specialist Breast Nurse Project Team 2000 Specialist breast nurses: an evidence-based model for Australian practice. National Breast Cancer Centre. Available from http:// www.nbcc.org.au/pages/info/resource/nbccpubs/ nbccpubs.htm Suominen T 1993 How do nurses assess the information received by breast cancer patients? Journal of Advanced Nursing 18: 64–68 Tait A 1994 Breast care nursing: summary report for cancer relief Macmillan Fund. Unpublished Report Tait A 1996 Psychological aspects of breast cancer. In: Denton S (ed.). Breast cancer nursing. Chapman & Hall, London Webb C, Koch T 1997 Women’s experiences of non-invasive breast cancer: literature review and study report. Journal of Advanced Nursing 25: 514–525 White K, Wilkes L 1999 The specialist breast care nurse: an evolving role. Collegian 6(4): 8–13 Woodward V, Webb C 2001 Women’s anxieties surrounding breast disorders: a systematic review of the literature. Journal of Advanced Nursing 33(1): 29–41
Keywords: breast care nurse specialist, evaluation
INTRODUCTION
Ros Carnwell BA, MA, PhD, RGN, RHV, CPT, Cert Ed (FE) (Professor of Health and Community Research) Sally-Ann Baker BSc (Researcher) Centre for Health and Community Research, North East Wales Institute, Plax Coch Campus, Wrexham WLL 2AW, UK Correspondence to: Ros Carnwell, E-mail: [email protected]
In the UK (United Kingdom) Breast Care Nurse Specialists (BCNSs) became prominent in caring from women with breast disease during the 1990s. Their role was endorsed by government targets set by Health Improvement Programmes (National Health Service Executive [NHSE] 1996) and by the Department of Health (DoH 2000a; 2000b). In Wales, standards set by the Cancer Service Co-ordinating Group (CSCG) require a specialist multi-disciplinary team to provide breast cancer care (National Assembly for Wales 1998, 2000). This must include two BCNSs within each NHS Trust, who have completed an accredited programme of education.
Clinical Effectiveness in Nursing (2003) 7, 171–179 c 2003 Elsevier Ltd. All rights reserved. doi:10.1016/j.cein.2003.09.002
Consequently, the three North Wales NHS trusts now employ BCNSs. No screening service is offered as this is provided by Breast Test Wales (BTW). In North Wales BTW comprises two mobile units, employs one BCNS and diagnoses approximately 150 new cases of breast cancer per year.
THE ROLE OF THE BREAST CARE NURSE BCNSs provide support and information to women with breast cancer and their family, within a multidisciplinary framework (Jary & Franklin 1996; Tait 1996; White & Wilkes 1999; Specialist Breast Nurse
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Project Team 2000). This includes complementing support given by carers and providing continuity and co-ordination of care (Tait 1994). This support has numerous benefits including: alleviating anxiety and depression and increasing knowledge (Burke & Kissane 1998), providing social and emotional support and counselling and identifying stress (Woodward & Webb 2001; Specialist Breast Nurse Project Team 2000), and reducing psychological morbidity (McArdle et al. 1996; Neil 1996). Provision of support also seems closely related to provision of information (Effective Health Care 1996), which in itself can alleviate anxiety (Bottomley & Jones 1997). However, despite BCNSs’ success in supporting women with breast cancer, they have been found deficient in providing information, psychological support and counselling (Garvican et al. 1998; Tait 1994; Webb & Koch 1997; Farmer 2000). Tait (1994), for example, reported a reluctance to explain treatment options, whilst Round et al. (1997) found that only 42% of patients (n ¼ 57) had been given a choice in treatments. This might be because nurses have difficulty accessing information, which affects the amount of information provided (Fitch et al. 1998) or because they are uncertain whether they or doctors should provide such information (Suominen 1993). Furthermore, some diseases do not merit choices in treatment or women may not be given a choice for other medical or psychological reasons. Equally, women have different needs for information depending on their age (Round et al. 1997), coping styles (Burton & Parker 1994) and stage of their illness (Rees & Bath 2000; Lindop & Cannon 2001), with most support needed and provided around the time of diagnosis (Luker et al. 2000). Responding to women’s information needs is therefore complex, requiring ‘team agreement about who should provide information about treatment, but also an understanding of what patients’ needs are, access to information by health care staff and ability to communicate information effectively’ (Carnwell & Baker 2003). BCNSs’ capacity to provide a comprehensive follow-up service is also limited by resources (Luker et al. 1996, 2000). Thus, although women prefer BCNSs to provide follow-up care (Pennery & Mallet 2000), general practitioners normally provide this care, despite their lack of specialist expertise (Round et al. 1997). This has obvious implications for continuity of care (Effective Health Care 1996; National Health Service Executive 1997). The literature suggests, therefore, that although BCNSs are the most appropriate professionals to provide support and information to women with breast cancer, this service is limited in several respects. First, there is uncertainty about whose responsibility it is to provide information. Second, there may be difficulty in accessing information. Third, women’s need for information differs according to their individual circumstances. Finally, a
lack of resources often results in support being provided around the time of diagnosis, with subsequent care provided by general practitioners.
THE STUDY A study was conducted to evaluate the Breast Care Nursing Service within North Wales from the perspectives of both staff and patients. The patient survey was divided into two stages (Carnwell & Baker 2003). This paper presents the findings of the second stage of this survey, the aim of which was to investigate patients’ experiences using a qualitative interview.
DESIGN AND METHODOLOGY The study utilised a semi-structured interview, the topic guide being developed from the findings of the patient questionnaire survey conducted during the previous stage of the study.
SAMPLE AND ACCESS Participants were recruited through the questionnaire survey. In response to a question inviting them to participate in an interview 91 (53%) participants offered their contact details. As resources only permitted a small number of interviews (n ¼ 13), the sample was selected randomly to ensure all participants had an equal chance of participation. Interviews were arranged at participants’ convenience. Ten were undertaken within participants’ homes and three were conducted at North East Wales Institute of Higher Education. All were taperecorded with the participant’s permission.
ETHICAL CONSIDERATIONS Ethical approval was granted by North Wales Local Research Ethics Committee. Participation in the study was voluntary, interviewees being free to withdraw at any time. Informed consent was provided, confidentiality was assured and participants’ identities were protected during transcription, analysis and reporting of findings. As participants were vulnerable, care was taken to ensure that interviews caused no distress and details of contacts were provided should they require help.
ANALYSIS The interviews generated 105 pages of typed transcript. These were returned to participants to check for accuracy, and so that they could add further detail if they wished. Some participants added information
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and/or corrected transcription errors. The transcripts were then read, re-read and analysed using content analysis. Where participants made similar comments they are clustered together. Data were verified by two researchers checking the emerging findings independently. The findings are organised under thematic headings of: participant characteristics; accessing the breast care service; experiences of the breast care nursing service at diagnosis; experiences of the breast care nursing service before surgery; experiences of the breast care services post-operatively; and perceived strengths and weaknesses of the breast care nursing service. Within some themes, categories also emerged (Table 2).
FINDINGS Participant characteristics Of the 13 participants, six were diagnosed by BTW screening programme and seven by symptomatic referral. Participants had a range of diagnoses and treatments. Eight had undergone a ‘lumpectomy’ (or wide local excision [WLE]) as the only treatment (Table 1). Two had had a WLE followed by mastectomy, and two had undergone a mastectomy without WLE. As expected, participants within the symptomatic group were more likely to have undergone chemotherapy and/or radiotherapy than screen-diagnosed participants.
Accessing the breast care nursing service Although the time from initial outpatient or screening appointment to surgical admission was
rapid (between 1 and 5 weeks), two participants reported problems persuading their GP to refer them to a consultant in the first instance. Both believed that this delay had worsened their cancer and intensified their treatment. For all participants the first contact with the BCNS was at clinic. Nine participants recalled the BCNSs being present at diagnosis and remaining behind to explain the diagnosis. A BCNS telephoned all 13 participants within two days of diagnosis and 10 participants were visited at home at least once prior to admission. All participants were contacted by a BCNS following surgery. Twelve had at least one home visit, one being followed up by phone. All women knew how to contact the BCNS and that they could access the service at any time. Three participants were surprised by the openness of the service, whilst 11 commented on the support offered. One area of concern was the interface between BTW and trust-based services. Following surgery, half the screen-diagnosed women (n ¼ 3) were unsure which service to call if they required support. Two were unaware of the BCNSs within the NHS Trusts, whilst another commented that the two types of BCNSs did not appear to work together.
Experiences of the breast care nursing service around the cancer diagnosis Participants perceived the support offered at diagnosis as particularly beneficial in helping them cope with the diagnosis and treatment decisions. Five categories emerged from the data: expectations of a cancer diagnosis, involving the family, getting the bad news, information provision at diagnosis and making treatment decisions (Table 2).
Table 1 Interview participant characteristic by type of diagnosis
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Table 2 Themes and sub-themes emerging from the data Themes Participant characteristics Accessing the breast care service Experiences of the breast care nursing service at diagnosis Experiences of the breast care nursing service before surgery Experiences of the breast care services post-operatively Perceived strengths and weaknesses of the breast care nursing service
Sub-themes
Expectations of a cancer diagnosis Involving the family Getting the bad news Information provision at diagnosis Making treatment decisions Information Hormonal therapy supporting the patient
Expectations of a cancer diagnosis Although each woman’s experience of diagnosis was unique, differences emerged between screendiagnosed non-screen-diagnosed women, in relation to their expectation of a cancer diagnosis. The six women who had been screened did not expect to be recalled, three being particularly worried by the recall letter. One woman recounted how she was leaving for work when the letter arrived: “I just totally went to pieces because I thought ‘they have made a mistake, caravans don’t work’. If I had gone for a mammogram to the hospital . . . I just could not go to work” (participant 10). Conversely, two women who had experienced symptoms, suspected something was wrong and although the run up to diagnosis was stressful they had time to prepare for bad news. As one participant said ‘I felt OK [about the diagnosis] because I really was suspicious . . . I was expecting it to be bad news but when you are told for definite you have still got this disappointment’ (participant 12). This was not always the case, however. One participant recounted how she convinced herself that her symptoms were not serious. ‘It really is a massive shock to the system to be told you have cancer. I’d gone to [hospital] convinced that there was nothing wrong with me, so unfortunately there was no-one in more shock than I was’ (participant 13). Involving the family Although two participants stated that BCNSs should involve partners more in discussions, five were satisfied with this involvement. Their partner’s presence was valued, as they recalled information and asked questions that participants ‘had not thought of’. Participants’ own involvement of their families also varied. Although two avoided telling family members until after the diagnosis, eleven involved their families from the beginning. Five of these, however, edited information to alleviate anxiety. This was stressful as the following quote illustrates, ‘I found that I was putting a face on for my husband because I did not want him to think that I was worried . . . so it was nice to be able to talk to the breast care nurses and say what you really think.’ (participant 12).
Getting the bad news When women recalled their diagnosis, nine reported a BCNS staying behind to talk with them and their partners. Twelve participants had difficulty recalling events, portraying the situation as ‘unreal’, or a ‘blur’. As one recounted, ‘I was sort of in limbo, everything was going on around me and they were saying things to me but I was not really taking them in’ (participant 3). Another walked out of the clinic because she was so nervous. Two participants received the news more calmly. As one reported, “I went in and I was the one out of the five who had the cancer. It did not shock me . . . I just said ‘fine, what are you going to do?”’ (participant 4). Almost all (12) participants expressed gratitude for the BCNS’s reassurance, support, information and opportunity to ask questions. Moreover, BCNSs were perceived as someone who had time for them. ‘We were not left on our own to look at each other and say well what next . . . They were there to help us and talk about it . . . It felt very supportive and I was looking forward to them coming to the house’ (participant 12). Participants also valued the home visit in helping them cope with the diagnosis, consider treatment options and prepare for hospital admission. As one said, ‘. . . she asked . . . how much information I had taken in . . . I knew what was going on, but she was ready to explain the whole lot of it again if necessary’ (participant 11).
Information provision at diagnosis Despite the support provided, seven participants expressed dissatisfaction with information provided at diagnosis. Due to lack of knowledge of cancer they did not ‘know what questions to ask’. Thus, when the BCNS asked them ‘what they wanted to know’ they felt unable to respond. One participant suggested that BCNSs should ask ‘how much would you like to know?’ before giving specific information about cancer and its treatment. Sometimes women felt unable to raise sensitive issues, such as survival rates. As one said, “I had found this set of statistics that I showed my
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daughter to say ‘look . . . I am still going to be here in 10 years time . . .’ But then you can turn the statistics round and the truth is that I have got a 60% chance of survival . . . I would have liked her [the BCNS] to bring this up so that I had a chance to talk to somebody about . . .” (participant 7). Other participants needed information about outcomes of surgery and treatment at an earlier stage. This would have avoided unnecessary worry, as they would have known what to expect postoperatively.
Making treatment decisions As indicated above, information at diagnosis and home visits, helped participants to understand the diagnosis and decide about treatment. As three participants indicated, consultants emphasised that decisions were theirs and not the consultant’s. Facilitation of decision-making was also viewed as an area in which BCNSs excelled. As one woman said ‘you are given a lot of options and have to make decisions fairly quickly’ (participant 12). Four said that their initial reaction was to rid themselves of the cancer immediately. Indeed, one woman (who had a WLE) wanted ‘to have both breasts off’ (participant 10) and would have done so had the BCNS not explained possible treatment options. Two women decided to have a mastectomy and felt supported in this as the following quote illustrates: ‘I could have had that [a WLE], but again that was a decision that we came to by discussing it with the breast care nurse. Because I had had lumps I always would have been worried if I had not a mastectomy’ (participant 12).
Experiences of the breast care nursing service before surgery Although BCNSs supported women during the initial home visit, following hospital admission five women did not see a BCNS pre-operatively. This was not considered problematic as ward staff were supportive, caring and friendly. Although eleven participants felt well prepared for surgery, two felt they could have been better prepared. One was unaware that she would wake up with drains in situ, whilst another was distressed by an unexpected change of surgeon ‘. . . I did not know who he was and I went down to theatre crying. He was very good, but it was a shock at the time’ (participant 7).
Experiences of the breast care nursing services post-operatively Within the theme of post-operative experiences, three categories emerged from the data: information, hormonal therapy and supporting the patient (Table 2).
Information Whilst nine participants considered information about the post-operative period to be adequate, four would have liked more information at an earlier stage. None of these women had had a mastectomy. Three were anxious about a recurrence due to post-operative symptoms, such as pain, numbness and wound problems. Two suffered psychological distress and two suffered unexpected breast changes. For one woman, it would have been helpful to know ‘why was I cross one day, why did I feel miserable? . . . You cannot talk to anybody else because they are too close, too involved, you need somebody who is independent’ (participant 10). These participants discovered later that their experiences were normal and felt they should have been better prepared. One discovered that her postsurgery symptoms were common by reading Miriam Stoppard’s The Breast Book (1996) 6 months post-operation. Furthermore, two participants were not informed about breast changes following radiotherapy and were surprised that their breasts had increased rather than diminished in size. A further two participants would have liked early information on lymphoedema management. Although women who accessed a lymphoedema service praised the treatment they received, two only discovered the service by chance. One now realised the impact that removal of lymph nodes would have and ‘thought that was going to be something that I would have to put up with. Now because I have had some treatment I realise it is not. I have discovered how to control it’ (participant 7). Two participants valued the video that was available, one suggesting it should be offered to all who need lymph glands removed. Hormonal therapy For the four women undergoing hormonal therapy (e.g., tamoxifen) side effects, such as sweating, were distressing. Two, however, had unexpectedly discovered that different brands had different side effects. One had found an information leaflet, which she was studying in order to alleviate side effects. Supporting the patient Support needs of participants also varied. Nine felt well supported post-operatively, having regular contact with the BCNS. Whilst two women’s wishes for less support were respected, four needed more support. One, for example, said the BCNS visited shortly after she went home and ‘was with me all the way through . . . I do not know what I would have done without her’ (participant 3). Moreover, BCNSs accompanied some patients for radiotherapy consultations and other appointments. For four women who had a WLE more support was needed following cessation of treatment. For
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two of these, lymphoedema treatment helped alleviate their fears, as they could share their concerns. Leaflets were not enough, as one participant said, ‘Reassurance, what do I do now, because these bras do not fit me anymore? Am I going to put on weight with the tamoxifen? . . . Am I going to be off the tamoxifen? . . . You have got the answers to, but because you are not functioning 100% you just need to be asking the questions’. Although BCNSs assured patients that they could contact them at any time, women did not always do so. One woman felt lonely and depressed following cessation of treatment and reported how ‘It was difficult to talk to my family about how I was feeling, because they so much wanted me to be better’ (participant 13). However, because she felt so low she felt unable to contact the BCNS. Another woman felt that, by maintaining an appearance of coping, her needs went unrecognised. In these cases follow up contact would have helped. Generally, BCNSs responded quickly to requests for help, although one participant felt dissatisfied. ‘I had to wait [four months] for my radiation therapy. . . . I did ring up and leave a message on the answer machine saying that I would like to talk about the radiation therapy and I got no reply . . .’ (participant 7).
Perceived strengths of the breast care nursing service When participants were asked about strengths of the BCNS service, they were very positive. Whilst many advantages are discussed above, additional categorises emerged as follows: ‘knowing they are there’, ‘information’, ‘patient centred’, ‘support’ and ‘trust’.
Knowing they are there Eight participants commented on the importance of knowing BCNSs were available, ‘they were very reassuring in the fact that they would be there for me . . . Dealing with appointments, treatments, news, anything that was coming, they were there’ (participant 12). Another described her relationship with the BCNS as like a friend ‘Perhaps because they have been there from the beginning and they are like a friend . . . I personally got so much confidence in them to get me through’ (participant 12). The relationship was not restricted to the time of diagnosis and treatment. As one participant reported, ‘there have been months gone by when I have not been in contact with them but you know they are there . . . that is the comforting thing’ (participant 1). Indeed one participant said the BCNS invited her to phone even three years later. Information ‘Knowing they are there’ also seems to be related to the need for information and support/reassurance. Explanations about forthcoming hospitalisation
were particularly appreciated. One participant was anxious about visiting a hospice for Lyphoedema treatment, as she believed ‘people went there to die . . . E sat me down before going to see G . . . and explained . . . what will happen . . . By the time I got home I knew, and when you got to the hospice it did do exactly what they said’ (participant 11). Such explanations prepared women for what was ahead. As one participant said, ‘I had a clear picture of what was coming and how to deal with it . . .’ (participant 12).
Patient-centred The service was perceived as patient-centred by seven participants, who felt valued, respected and cared for. The BCNS responded quickly to requests for information, reassurance or practical help and had time for them. Two women, for example, recounted how the BCNS drained their seroma in their own home on the day they made contact. Another reported how the BCNS phoned her following her second scan to ask if she was sore and to reassure her that she could ring if she wanted a chat. Support The support offered by BCNSs was characterised by the lack of barrier between them and their patients, and the time they gave them. This was partly because nurses, unlike doctors, were perceived as on the same level as the patients. As one participant said, ‘You don’t feel there is a barrier between you and the breast care nurses. They are so friendly on your level’ (participant 12). Participants clearly felt able to phone the BCNS, without having their problems trivialised. One participant commented that, Even the littlest thing you could phone up and not feel stupid (participant 1). Trust The lack of barrier also engendered a sense of trust, which for one participant reduced her worry. ‘If it was a choice between asking the doctor in the unit something I was worried about or just keeping quiet and just worrying, I keep quiet and just worry because I was scared to trust, but . . . the breast care nurse . . . you can talk to them’. Other participants referred to the ‘caring’ characteristics of the nurses, including a feeling that ‘it was not just a job’, ‘kindness’ ‘easy to talk to’, ‘like family’ and ‘sensitive to needs’, all of which enabled participants to express their concerns.
Perceived weaknesses of the breast care nursing service Participants were asked if there was anything that the BCNSs could improve. The main weaknesses concerned information needs of patients and their
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families, comfort and homeliness, follow up services, and resources.
Information needs Participants emphasised the need for early information, such as leaflets and booklets to explain treatment and hospital routines. One participant needed information about lymphoedema massage, whilst another commented that all women should be offered the lymphoedema video. Another believed information should be simple, and should include the whereabouts of telephones, smoking rooms and shops. Information about support groups was also necessary. Comfort and homeliness One participant commented on the importance of retaining a sense of normality whilst in hospital by wearing day clothes. This is the type of information that could be included in an information leaflet. Follow up Some participants reported feeling isolated once treatment had finished, as they had no one to talk to and felt it was no longer appropriate to phone the BCNS. Some would, therefore, have welcomed a phone call from the BCNS to offer support.
Resources Several participants experienced difficulties travelling up to two hours daily, sometimes for removal of tubes, which it was considered district nurses should be able to perform.
DISCUSSION Overall, participants were extremely satisfied with the BCNS service and particularly valued the support and information provided during diagnosis and during pre and post-operative home visits. The service was considered to be patient-centred and the BCNSs were accessible. Although contact with the BCNS service does not commence until the point of diagnosis, the problem of delayed referral by GPs does have implications for BCNSs as it raises the issue of training of community nurses to enable them to recognise early signs of breast disease during their consultation with women. In North Wales, BCNSs have initiated a Diploma in Breast Care Nursing, with the aim of disseminating information to practice and community nurses. Once referral had taken place, participants had varied experiences of diagnosis. Those diagnosed by BTW through routine screening seemed less prepared for the diagnosis than those diagnosed symptomatically, who, although still shocked had
anticipated bad news. Given that up to one-fifth of patients are diagnosed via routine screening programmes (CHI and Audit Commission 2001) this is an important finding. Whilst most participants agreed that BCNSs involved their family in discussions, a minority said this could be improved. Participants’ own involvement of their families also varied, a minority avoiding telling their families until after diagnosis. These women particularly valued the opportunity to talk to the BCNS. Once the diagnosis had been made, follow up by the BCNS was rapid, with pre and post-operative home visits being usual. Although participants expressed gratitude for the openness and supportive nature of the service, some were confused by the interface between BTW and trust-based services. It is important to point out that BTW is only funded for the period of diagnosis and one post-operative visit. Women with breast cancer are then transferred to various teams within local NHS trusts. The interface between BTW and the trust will therefore depend on the ability of trusts to provide a symptomatic service to which to refer. The interviews revealed some contradictions, which reflect variations in experiences. Most women were reassured by BCNSs and appreciated the preadmission information they provided. Other strengths included: respect for them as individuals and responsiveness to need; the lack of barrier between the BCNS and patients; and the feeling of trust that this engendered. Despite these strengths, however, women felt that BCNSs could improve information provided, both around diagnosis and pre and post-discharge. This finding is supported by other studies (e.g. Grey et al. 1998; Suominen 1993; Fitch et al. 1998; Luker et al. 2000), which recommend more information on follow up policy and treatments, clarification of who should provide such information and to ensure that staff are able to access such information. The study reported here supports Rees & Bath’s (2000 p.839) view that ‘women have distinct needs for information throughout their breast cancer journey’. At diagnosis, for example, women need information on outcomes of surgery and different treatments. Furthermore, as women do not know what questions to ask, ‘how much would you like to know?’, was felt to be a better question that ‘what would you like to know?’. Provision of information around sensitive issues, such as prognosis and survival rates, would also have given some women the opportunity to discuss this. Others needed simple information leaflets explaining treatments and hospital routines. Unlike the findings of Tait (1994) the women in this study remarked that BCNSs excelled in helping them to choose between different treatment options. Evidence suggests that, although specialist nurses at the time of diagnosis of cancer, are in short supply (CHI and Audit Commission 2001) this can reduce anxiety and depression and hence lead to improved outcomes for patients (Effective Health Care 1996).
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For women requiring surgery, information needs differed pre and post-operation. Pre-operatively, women needed to know the surgeon’s name and that drains would be inserted during surgery. Post-operatively, women needed to know the types of emotional and physiological symptoms to expect following surgery; how the breasts change following radiotherapy; management of lymphoedema, possibly by viewing a video; and different types of hormonal therapy and their side effects. Participants’ experience of the BCNS service pre and post-operatively was extremely positive although some improvements could also be made. A small minority of women did not see a BCNS before surgery and some felt that they could have been better prepared. Following discharge from hospital, some participants would have valued more long-term follow-up from the BCNS. Although this was more available for women who had had a mastectomy, some women who had had a WLE also suffered problems post-operatively and would have appreciated more follow up. Although they knew that they could contact the BCNS if necessary, they often felt unable to do so and would have welcomed a phone call from the BCNS to offer support. This is an important finding as the National Assembly for Wales (2000) ‘treatment’ standard includes access to psychosocial support as part of palliative care services. This finding did not emerge from the questionnaire study (Carnwell & Baker 2003) since, because of the potential vulnerability of participants, they were not questioned about their specific treatment. Lack of long-term follow up care has also been reported in the literature and has been linked to a lack of resources (Luker et al. 1996, 2000; Effective Health Care 1996; National Health Service Executive 1997). Information and support for families, although not a strong finding of this study, is an important area of support that needs to be addressed (Fridfinnsdottir 1997).
CONCLUSION The study is limited by its small sample size. However, as a qualitative study the intention is not to generalise the findings, but to illuminate women’s experience of the BCNS service in more depth than was possible in the earlier questionnaire survey. Being the third phase of a three-stage study, the findings lent completeness to earlier findings and elicited qualitative data regarding women’s perceptions of the BCNS service. The service is highly valued by women with breast cancer and the strengths of the service far outweigh the weaknesses. The few areas for improvement can be divided into three main stages of the disease trajectory – initial referral, diagnosis and treatment, and follow-up care. Initial referral could be improved by training practice nurses and district
nurses in recognising early signs of breast cancer. BCNSs could provide support and supervision in this role. At the stage of diagnosis and treatment, improvements include being proactive in providing information and support to women with different breast conditions and their families. Further research is needed in order to determine how patients would like this need to be assessed. Finally, improvements in follow up care require either additional resources in the form of BCNSs, or more involvement of community nurses in performing certain procedures and offering long-term support.
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 for facilitating access to participants, and the women who were willing to share their experiences with us. We would also like to thank Sue Brady, breast care specialist nurse for Breast Test Wales, for critically reading the final article.
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