How do Specialist Breast Nurses help breast cancer patients at follow-up?

Article Outline

• Summary
• Background
• Aims
• Methods
• Participants
• Audio recording of SBN consults
• Analysis
• Results
  • Themes from interviews
  • General themes
  • Disruption and reinvention
  • Instrumental support
    • Prevention and facilitating access to services
  • Instrumental support
    • Facilitating access to services
  • Appraisal support
    • Normalising
  • Emotional support
    • Promoting self-esteem
  • Emotional support
    • Encouraging a proactive approach
  • Appraisal support
    • Encouraging a proactive approach
  • Appraisal and information support
    • Prevention
• Discussion
• References
• Copyright

Summary 

Background

As the proportion of survivors from breast cancer increases it is possible that follow-up care could be delivered wholly by generalists to relieve over subscribed hospital clinics. However, guidelines seldom take into account the nature of interactions between patients and health care professionals involved in hospital-based follow-up.

Methods

Consultations between four Specialist Breast Nurses (SBNs) and 21 consecutive women attending a hospital-based breast cancer follow-up clinic in Western Australia were audio recorded and subjected to a thematic analysis. Recording of consultations ceased with saturation of themes. We analysed the data with reference to theoretical frameworks which postulate that social support is a powerful factor in determining positive health outcomes. We also drew on theories focusing on biographical disruption, biographical reinforcement and biographical reinvention.

Results

The majority of participants were Australian born, married women in their sixties. The mean duration of the consultations was 19min (SD=7.5, min=8, max=43.5). A core theme was the established relationship between the woman and her SBN. Overall, the SBNs played an important role in facilitating the transition of patients by supporting the woman in adjustment to a new self-image and bodily functioning. The SBN accompanies each woman through this phase in her life, while supporting a new narrative, promoting her ‘rebirth’ as someone with ideas, concerns and expectations that have altered significantly after the diagnosis of cancer. Five key themes emerged to demonstrate this supportive role: normalising; facilitating access to services; prevention; promoting self-esteem and promoting a proactive approach.

Conclusions

Many women with breast cancer claimed a new perspective on what was now possible, acceptable or desirable in a host of life domains. Our data suggest that the follow-up care of cancer patients is more than just dealing with a checklist of symptoms but requires an understanding of the biographical disruption occasioned by a diagnosis of breast cancer.

Keywords: Breast cancer, Breast Cancer Nurse, Follow-up, Biographical disruption

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Background 

The incidence of breast cancer is predicted to accelerate over the next 10 years and will mirror the growing number of women over the age of 45 years of age. Fortunately, more than 80% of women who are diagnosed with breast cancer will survive for 5 or more years after diagnosis and in most countries breast cancer patients are monitored over several years at their treatment centre (AIHW, 2007). As a result, the workload of cancer specialists consists of providing treatment but also coordinating follow-up care, in what has been called the ‘remission society’ (Frank, 1995). This places a growing burden on specialist services and a perceived need to increase capacity to service new cancer patients by reducing the number of patients who continue to attend clinics after active treatment has ceased.

While there is general consensus that ‘follow-up’ benefits patients, the arrangements for breast cancer ‘follow-up’ vary greatly with little evidence to support a particular model of ‘best practice’ (Beaver and Luker, 2005, Collins et al., 2004, iSource National Breast Cancer Centre, 2001). The overarching goals for follow-up services include early detection of local recurrence, screening for new primary breast cancer, monitoring for treatment-related toxicities and provision of ‘psychosocial’ support (Beaver and Luker, 2005, Dixon and Montgomery, 2008, Grunfield et al., 1999, Rojas et al., 2005). Previous research has concluded that despite these goals breast cancer patients may still have unmet needs and that locally tailored follow-up programs need to be established (Jiwa, Thompson, Coleman, & Reed, 2006).

On the question of who offers follow-up advice the available data suggests that nurse-led follow-up, general practitioner follow-up and specialist follow-up are all acceptable to patients and have similar patient satisfaction and quality of life outcomes (Grunfeld et al., 2006). Koinberg, Fridlund, Engholm, and Holmberg (2004) reported a randomised controlled trial where follow-up by Specialist Breast Nurses (SBNs) was compared to follow-up by medical practitioners. Measures included the Hospital Anxiety and Depression Scale (HADs), and the Satisfaction and Accessibility (SaaC) scale, the number of contacts with the health care services, the number of diagnostic procedures, and time to recurrence or death. The ratings of HADs and SaaC did not show any statistically significant differences between the groups. The levels of anxiety and depression were generally low and levels of patient satisfaction high. There were no differences between the SBN and medical practitioner follow-up group concerning time to recurrence or death (Koinberg et al., 2004). Several authors have reported that nurses detect more psychological problems than specialists during routine follow-up and that SBNs can significantly reduce psychological morbidity post surgery (Baildam et al., 2004, McArdle et al., 1996). Beaver and Luker (2005) audio recorded consultations with patients undergoing breast cancer follow-up in the U.K. and reported that the mean consultation time was a mere 6.2min. They also concluded that SBNs consulted patients for longer than other practitioners and performed more thorough examinations (Beaver & Luker, 2005).

In the local context of Western Australia, hospital-based Specialist Breast Care nurse-led clinics were established to offer breast cancer patients an annual ‘follow-up’ appointment. These clinics presented an opportunity to study the interaction between patient and practitioner. The SBNs are trained in communication skills and involved with patients from first presentation and annually until they are discharged from the clinic at 3 and 5 years if no recurrence is detected as per the local protocols.

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Aims 

The aims of this study were to report a thematic analysis of the consultations between SBNs and patients.

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Methods 

Ethics approval was obtained from Curtin University of Technology (HR 76/2008) and Sir Charles Gairdner Hospital Human Ethics Committees (2008-084). The privacy of patients is protected by ensuring that individual patients or nurses cannot be identified in our reports. Secondly all recordings and transcripts were securely stored a locked cabinet or password protected computer.

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Participants 

Consenting participants were patients with early breast cancer who had completed treatment for breast cancer within the last 10 years and were scheduled for a follow-up appointment in the nurse-led clinic at the index hospital. The majority of patients were within 5 years of treatment completion; however, if recurrence occurred follow-up continued for up to 10 years post-treatment. Participants were recruited from a consecutive list of patients at the clinic.

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Audio recording of SBN consults 

Twenty-one consecutive nurse-led consultations with the patients were audio recorded. The recordings were transcribed verbatim. Recording of interviews ceased when it was deemed that saturation of themes had been achieved (Ritchie et al., 1994).

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Analysis 

The transcripts were independently reviewed by four researchers (MJ, GH, MO and KD). A framework approach was utilised in the analysis of data. Data from the interviews followed the prescribed steps, including: familiarisation, identifying a thematic framework, indexing, charting and mapping, and interpretation (Ritchie et al., 1994). The data were assessed to determine the variety of themes emerging as the interviews progressed. This analysis was conducted by sorting brief segments of transcript according to theme. The researchers noted the different categories of responses found. The data were then separated into groups of themes and subthemes. After becoming familiar with the data and the themes were grouped together and it was possible to reduce the number of categories. Finally, the researchers reviewed the analysis and agreed on the key themes and categories before presenting the analysis to the breast care nurse for their views on the analysis.

In identifying the themes we analysed the transcripts with reference to the concept of ‘social support’. We draw on literature in the social sciences which postulate that social support is a powerful factor in determining positive health outcomes (Berkman et al., 2000, Durkheim, 1951). There are four effective dimensions of social support which may be important within the context of SBN clinics. We reviewed the data seeking evidence for these four themes: instrumental support, such as practical help with problems; informational support, such as providing information or advice; appraisal support, such as helping to process the information and agreeing a course of action; and emotional support, such as providing a listening ear, often to non-‘health related’ issues.

We also drew on theories on embodiment from medical sociology (Turner, 1984). This included the concept of biographical disruption (Bury, 2000, Bury, 1991, Bury, 1982), biographical reinforcement (Carricaburu & Pierret, 2004) and biographical reinvention (Gabe, Bury, & Elston, 2004). The proponents of embodiment postulate that bodies both shape, and are shaped by, society (Turner, 1984). In other words, women's bodies may be re-shaped as a result of breast cancer and mastectomy but then, the resulting ‘new’ body may lead to changing relationships with partners and their own sense of self (Gifford, 2002). We also draw upon the idea of biographical disruption, which was developed within the context of chronic illness to reflect the major life changes in response to the onset of chronic illness. A breast cancer diagnosis is an extraordinary life event, which, in Bury's terms would bring about a shift in identity for women (Cornwell, 1984).

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Results 

Themes from interviews 

The mean duration of the consultations was 19min (SD=7.5, min=8, max=43.5).

Demographic characteristics of participants are shown in Table 1.

Table 1. Characteristics of participants.

General themes 

A central theme was the established relationship between the woman and her SBN:

Example 1: (Participant P002)

Disruption and reinvention 

An overarching theme was one of ‘transition’ with a profound impact of the cancer diagnosis on some of these patients, and evidence for new attitudes, aspirations and relationships. Within the framework of biographical disruption many women described making choices which were explicitly or implicitly consistent with a ‘rebirth’ following what was conceived as a reprieve from death. For many patients the cancer had prompted a new vista on opportunities and choices. Some participants cited a new perspective on what was possible, acceptable or desirable in a host of domains ranging from career aspirations to sexual partners as illustrated below.

Example 1: (Participant P021)

Example 2: (Participant P005)

Overall, the SBNs played an important role in facilitating the transition of patients by supporting the woman in adjustment to a new self-image and bodily functioning. The SBN accompanies each woman through this phase in her life, while supporting a new narrative, promoting her ‘rebirth’ as someone with ideas, concerns and expectations that altered significantly after the diagnosis of cancer. Five key themes are used to demonstrate this supportive role: normalising; facilitating access to services; prevention; promoting self-esteem and promoting a proactive approach. Each of the themes fall under the four effective dimensions of social support (instrumental support, information support, appraisal support and emotional support) as demonstrated below.

Instrumental support 

The SBNs encouraged the woman to express anxiety and/or sadness, but also where to access support to manage such feelings. They screened women for pathological levels of anxiety or depression including suicidal ideation.

Example 1: (Participant P021)

Instrumental support 

The SBNs reassured their patients, but also facilitated access to diagnostic and supportive services. In most cases these symptoms were unrelated to the cancer. The SBNs also adjusted expectations about the health care system on which patients were now dependent for support.

Example 1: (Participant P004)

Appraisal support 

The nurses reframed the women's reactions to the appearance of swellings or lumps as part of ageing or degeneration rather than as a sign of recurrent cancer. The nurse's opinion was bolstered by her skills as an expert in examining treated breast tissue.

Example 1: (Participant P013)

Example 2: (Participant P011)

Emotional support 

The SBN promoted self-esteem whilst encouraging a new found sense of control.

Example 1: (Participant P009)

Emotional support 

The SBNs provided emotional support and encouraged the women to be proactive in responding to challenges.

Example 1: (Participant P006)

Appraisal support 

Many SBN consultations included ‘teaching’ the woman to become familiar with the realities of her altered physical shape and the psychological challenges. Although women reported that they had new lumps or thickening and changes in the appearance of their nipple, in most cases these were clinically benign and unremarkable, but clearly a source of concern to the patient. In some cases the women had not noticed physical changes that were brought to their attention.

Example 1: (Participant P005)

Appraisal and information support 

The SBNs encouraged the women to develop strategies for preventing a recurrence of the cancer as well as managing the side effects of treatment. They emphasised the importance of maintaining a regular exercise regime, healthy diet and a positive frame of mind.

Example 1: (Participant P004)

Example 2: (Participant P011)

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Discussion 

Our data suggest that the follow-up care of cancer patients involves more than attending to a checklist of symptoms. It requires appreciation of the biographical disruption occasioned by a diagnosis of breast cancer. The SBNs deliver the necessary support within the context of an established relationship. The SBN is also a health professional who has the confidence of the patient as someone with the necessary expertise. These data offer new insight into the impact of cancer on the patients in the years following treatment. They suggest that SBNs play a significant role on the road to recovery from cancer. The study illustrates how the SBN offers psychological and emotional support, but also facilitates access to other services and is a trusted point of reference for new and worrying problems that may or may not be related to cancer. Much of the discussion in the follow-up clinic might be viewed as pastoral, one that underscores the process of physical, social and psychological readjustment following treatment. The interactions between health care professional and patient in this context is not necessarily amenable to a ‘protocol’ and ‘tick test’ approach, but is grounded in an established relationship between practitioner and patient on a shared journey with a life threatening condition. Many of the experiences and reactions need to be framed within the context of the patient's personality and social background. Women continue to experience troublesome problems throughout the so-called ‘follow-up’ period. In a proportion of cases it is apparent that the women are ready to move away from a specialist follow-up regimen. In other cases the patient is still undergoing profound readjustment and it is unclear what impact removing access to the SBN would have, as might happen if the follow-up was devolved entirely to primary care. On the one hand not all consequences of the diagnosis were viewed as a negative experience and the follow-up appointments were opportunities to validate this impression. On the other hand some women experienced a profound rebirth and were moved to make significant changes in many aspects of their lives. Much of this self-exploration was relayed to the SBNs who provided social support as illustrated in the quotes above.

Many participants in this study required on-going support to recalibrate their responses to physical and psychological changes associated with the diagnosis of breast cancer. In terms of the support offered the SBNs also monitored the women for signs of clinical depression, illustrating Dixon and Montgomery's (2008) view that nurses can screen for psychological problems in follow-up clinics. Some women reported that they had a new or persistent pain somewhere in their body. These issues were also managed by the SBNs with the conclusion, sometimes with reference to a medical practitioner, that the aetiology was benign. Our data suggest that if the approach to patients in the period following active treatment was limited to discussing physical symptoms and possible side effects of adjuvant therapies then there will be a lost opportunity to help patients to adjust to the experience of breast cancer. From our data one can only speculate whether this would lead to psychological, social or physical problems or whether patients would find other sources of help. However, the importance of the involvement of a practitioner who has the experience and resources to support the woman throughout the process of readjustment but also with expertise on the significance of clinical changes is a critical element of any follow-up protocol. The SBN led follow-up model, as described as a back drop to this study, has the potential to improve the breast cancer ‘follow-up journey’ for patients and reduce already stretched clinical workloads in both tertiary and primary health care settings. Future research could focus on a review of consultations in other settings as alternative venues for follow-up care. These data may help to further define the role of health practitioners in the Australian context and how they might contribute to the care of people who have been treated for cancer in this country.

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References 

1. Australian Institute of Health and Welfare (AIHW) . ACIM (Australian Cancer Incidence and Mortality) books. Canberra: AIHW; 2007;
   • View In Article
2. Baildam AD, Keeling F, Thompson L, Bundred N, Hopwood P. Nurse-led surgical follow up clinics for women treated for breast cancer – a randomised controlled trial. Breast Cancer Research and Treatment. 2004;88:S136–S137
   • View In Article
3. Beaver K, Luker KA. Follow-up in breast cancer clinics: Reassuring for patients rather than detecting recurrence. Psycho-Oncology. 2005;14:94–101
   • View In Article
   • MEDLINE
   • CrossRef
4. Berkman LF, Glass T, Brissette I, Seeman TE. From social integration to health: Durkheim in the new millennium. Social Science & Medicine. 2000;51(6):843–857
   • View In Article
5. Bury M. Chronic illness as biographical disruption. Sociology of Health and Illness. 1982;4:167–182
   • View In Article
6. Bury M. The sociology of chronic illness: A review of research and prospects. Sociology of Health & Illness. 1991;13:451–468
   • View In Article
   • CrossRef
7. Bury M. Health and illness in a changing society. London: Routledge; 2000;
   • View In Article
8. Carricaburu D, Pierret J. From biographical disruption to biographical reinforcement: The case of HIV-positive men. In:  Reader A,  Bury M,  Gabe J editor. The sociology of health and illness. London: Routledge; 2004;
   • View In Article
9. Collins RF, Bekker HL, Dodwell DJ. Follow-up care of patients treated for breast cancer: A structured review. Cancer Treatment Reviews. 2004;30:19–35
   • View In Article
   • Abstract
   • Full Text
   • Full-Text PDF (417 KB)
   • CrossRef
10. Cornwell J. Hard-earned lives: Accounts of health and illness from East London. London: Tavistock; 1984;
    • View In Article
11. Dixon J, Montgomery D. Follow-up after breast cancer. British Medical Journal. 2008;336:107–108
    • View In Article
12. Durkheim E. Suicide: A study in sociology. Glencoe: Free Press; 1951;
    • View In Article
13. Frank A. The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press; 1995;
    • View In Article
14. Gabe J, Bury M, Elston MA. Key concepts in medical sociology. London: Sage; 2004;
    • View In Article
15. Gifford S. The meaning of lumps: A case study of the ambiguities of risk. In:  Nettleton S,  Gustafsson U editor. The sociology of health and illness reader. Cambridge: Polity; 2002;
    • View In Article
16. Grunfeld E, Levine MN, Julian JA, Coyle D, Szechtman B, Mirsky D, et al. Randomized trial of long-term follow-up for early-stage breast cancer: A comparison of family physician versus specialist care. Journal of Clinical Oncology. 2006;24:848–854
    • View In Article
17. Grunfeld E, Fitzpatrick R, Mant D, Yudkin P, Adewuyi-Dalton R, Stewart J, et al. Comparison of breast cancer patient satisfaction with follow-up care in primary care versus specialist care: Results from a randomized controlled trial. British Journal of General Practice. 1999;49:705–710
    • View In Article
18. iSource National Breast Cancer Centre . Clinical practice guidelines: Management of early breast cancer. Canberra: NHMRC; 2001;
    • View In Article
19. Jiwa M, Thompson J, Coleman R, Reed M. Breast cancer follow-up: Could primary care be the right venue?. Current Medical Research and Opinion. 2006;22(4):631–639
    • View In Article
    • MEDLINE
    • CrossRef
20. Koinberg IL, Fridlund B, Engholm GB, Holmberg L. Nurse-led follow-up on demo and or by a physician after breast cancer surgery: A randomised study. European Oncology Nursing Society. 2004;8:109–117
    • View In Article
21. McArdle J, George WD, McArdle CS, Smith DC, Moodie AR, Hughson AV, et al. Psychological support for patients undergoing breast cancer surgery: A randomised study. British Medical Journal. 1996;312:813–816
    • View In Article
22. Ritchie J, et al. Analysing qualitative data. London: Routledge; 1994;
    • View In Article
23. Rojas MP, Telaro E, Russo A, Moschetti I, Coe L, Fossati R, et al. Follow-up strategies for women treated for early breast cancer. Cochrane Database of Systematic Reviews. 2005;25:CD001768
    • View In Article
24. Turner B. The body and society. Oxford: Blackwell; 1984;
    • View In Article