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One in nine women in the UK will develop breast cancer in her lifetime. When a diagnosis of breast cancer is made, the focus of health care professionals becomes the centrality of the 'body and disease' leading to an immediate rapid-response in terms of treatment. Indeed the current directive from the Department of Health sets a target standard within the National Health Service of 31 days between the time a woman receives her diagnosis to the commencement of her treatment. Breast cancer treatment is often radical, involving extensive surgery (mastectomy) and may include radio, hormonal and chemo therapies. Altematively, treatment can involve less radical surgery, conserving breast tissue whilst including radiotherapy, and may also include hormonal and/or chemotherapy. Much is known about the incidence of breast cancer and the most effective ways of managing the disease process and about the effects of treatment, particularly in terms of the burdens and suffering that arise as a consequence of treatments. However, what is not as readily available is detailed information on what a woman actually feels, deeply and personally, in response to the imposed changes that a life threatening disease brings. In other words, how she encounters her diagnosis, her treatment and subsequently comes to terms with her life at the end of treatment and the imposed changes to her future. For this study of women with early, primary breast cancer, the main foci were the participants' responses to their diagnosis, the effectiveness of information in preparing them for extemal radiotherapy and the impact of a temporary, surgically implanted source of radiotherapy (brachytherapy), as part of their breast conservation treatment. Nineteen women partiCipated in this prospective qualitative study, which used a grounded theory approach. Grounded theory was chosen for this study, with its emphaSis on exploring and describing, not only the physical experiences of breast cancer and its treatment, but also the prominent issues which emerged, such as the life changing experiences and the subsequent effect on the psycho-emotional dimensions of each participant. Attention is given in the analysis of the data to those experiences described and emphasised by the participants as having the most important bearing on their life. For the majority of the participants, the impact of a breast cancer diagnosis created an immediate and penetrating fear of premature death, with its associated suffering. To this was added an unswerving sensitivity to the knowledge that while treatment may avert immediate death, there would always be an unrelenting dread, antiCipation even, that cancer would one day recur. The entire study is based on the contents of four in-depth semi-structured interviews, in an inquiry that was conducted over four distinct phases. The first interview was conducted following the diagnosis of breast cancer, the second at the commencement of extemal radiotherapy, the third following the radiotherapy implant and the fourth in the post treatment and rehabilitation period. The study illustrates how each participant successfully navigated her way through her treatments, but the overall effect of a cancer diagnosis was to profoundly challenge each partiCipants' belief about their life and its meaning, a life that they came to view as for ever changed, life that was ravaged and threatened, life that would never to be the same again. The study illustrates the importance of personal resources at the time of severe threat to life. Assessing the individual's psychological and emotional needs is a crucial part of care for the woman with breast cancer. The risk of under assessed psychological distress cannot be over emphasised since distress can affect the long-term outcome of not only psychological adjustment but might also influence survival.

Diverging from the pathological focus of 1950's psychology, positive psychologists have concentrated on the potential for people to grow and enhance their quality of life following adversity, a phenomenon coined as "posttraumatic growth" (PTG) (Tedeschi & Calhoun, 1996). Although there has been significant advancement in PTG research, there are limitations in the current models, theories and methods of assessment. Therefore, the aim of this thesis was to attain an in-depth insight into the nature of PTG following breast cancer diagnosis using interpretative phenomenological analysis. The participants were ten female breast cancer survivors who were self selected as having experienced posttraumatic growth, as well as participated in an exercise programme during their cancer treatment (Mutrie et al., 2007). They participated in one open-ended interview at their one year follow-up, the primary focus being to understand their experience of PTG. The analyses yielded seven main themes: the body, exercise class, existential re-evaluation, self-identity, philosophy change, society and narrative from giowth-to-growth. Four of these have been extensively reported within the literature, thereby justifying the decision to further analyse the themes of 'narrative from growth-to-growth', 'exercise class' and 'the body' as they contributed the most to the expansion of PTG theory. The results suggest a reconfiguration of the Transformational Model of growth (Tedeschi & Calhoun, 2006) in terms of its proposed temporal sequences of initiation of growth and exclusivity upon rumination. Additionally, two other themes suggest that the facilitation of growth, and certain PTG outcomes, were the result of both the women's participation in an exercise class and a reconnection to their own body; previously these two elements have not been linked. Overall, the thesis provides in-depth and novel additions to the PTG research within illness related trauma. Future research could extend the findings to develop more definitive, links between thought processes, physical activity interventions and the body in the experience of PTG.

This thesis aims to identify and critically evaluate the ideological underpinnings of breast cancer 'risk' within a chronological timeline which examines debates and contemporary literatures that have critiqued biomedical discourses from the end of the nineteenth century to the present day; it does not intend to document the 'history' of breast cancer 'risk as such, but rather seeks to arrange the respective chapters around theoretical themes relating to social construction of the concept. Within this context, the thesis is an exercise in sociological rather than historical scholarship, and adopts a social constructionist approach that contrasts sharply with attempts to view development of the disease from a biomedical approach primarily concerned with aetiology and subsequent treatment regimens. A Foucauldian perspective has had the greatest impact on my thinking in this thesis, particularly in relation to how the concept of 'risk' may construct norms of behaviour that encourage individuals to control, regulate and discipline their own bodies by engaging voluntarily in techniques of ethical self- formation and internal self-regulation. Foucauldian theory encouraged me to situate the concept of breast cancer 'risk' within the context of changing social and cultural attitudes and medical beliefs, and thus illuminate the way in which existing practices coexisted with, reinforced, transformed and displaced one another, becoming subject to continuous reinterpretation and emerging as 'new' practices at critical junctures. This thesis contributes new and detailed knowledge about discourses of 'surveillance' and 'responsibility' surrounding women 'at risk' of developing breast cancer and thus attempts to further our understanding of these elements of the disease. Taking my lead from postmodern and poststructuralist feminist theoretical perspectives, I shall argue that a gendered notion of personal responsibility for monitoring (and thereby preventing) breast cancer through internal vigilance and self-surveillance has remained constant throughout this period, albeit in various guises. The stereotypical gendered identity of an individual woman as the 'caretaker' of the family often resulted in a social obligation on her to carefully monitor and protect her own health status so that she also remained able to preserve and maintain the health and well-being of other family members. By defining them predominantly in terms of gendered obligation, healthy women deemed to be 'at risk' of developing breast cancer may have felt pressured to conform to biomedical commands all morally relevant things considered, subjecting themselves to a delineated set of prophylactic biomedical interventions even before breast cancer was diagnosed - if it ever was to be.

Introduction. There are many cancer specific health-related quality oflife (HRQOL) instruments available but their utility in clinical practice has not been systematically evaluated. The aim was to develop a HRQOL questionnaire package for breast cancer patients for use in routine practice. It is anticipated that the questionnaire would improve patient care and experiences by improving communication, symptom monitoring and referrals. Methods and results. A comprehensive development strategy was employed to create QuEST-Br. The strategy included exploring issues discussed in oncology consultations of 52 breast cancer patients (208 consultations), a literature search, interviews with 10 patients and 10 healthcare professionals, validation of the questionnaire in a sample of 145 patients and validation in over 400 patients as part of a larger study. A 53 item questionnaire (QuEST-Br) was created. An additional concerns checklist was developed for use in conjunction with QuEST-Br to allow patients to focus consultation discussions. The checklist was developed through literature searches, interviews with patients and healthcare professionals and validation alongside QuEST-Br. Eleven women were interviewed about their experiences of breast cancer and sexual problems. Results confirmed previous findings that sexual issues were rarely discussed and healthcare professionals were unsure what support was available. A systematic review identified the most effective type of intervention for breast cancer patients experiencing sexual problems would include sexual counselling and would target the patient and partner. Conclusion. I developed and evaluated an effective model for screening and identifying patient needs. Sexuality was identified as an unmet need. I explored ways in which these needs may be better addressed in routine clinical practice.

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The study was conducted following a systematic review of 38 articles (Collins et al 2004), which failed to find strong evidence for the optimum duration and frequency of follow-up, or the personnel best placed to provide it. Against this background of lack of evidence for ongoing follow-up, on the grounds of limited resources and an ever increasing population of breast cancer survivors; the level and nature of service provision for the patients attending a regional breast unit was changed. What was unknown was the impact this may have on the quality of the care and support and future health and well-being. Primary aim: To investigate the experience of being discharged from follow-up breast care services and evaluate the impact of the proposed changes from the patient’s perspective. This thesis reports on interviews with 20 women from the time they were discharged from the service to 2 years post discharge. In addition, 4 participants who developed recurrent disease gave interviews to discuss their experiences. 3 major themes emerged: 1. “Close shave” or “marked woman”? describes the approaches adopted by the women towards their disease, treatment and risk of recurrent disease; 2. A “blessing” or a “curse”? encompasses views of the value of follow-up care; 3. “freedom” or “isolation”? is the account of the impact of discharge from the service on future health, care and well-being. Creating a network of services and working collaboratively with other sectors may well provide the scope and quality of care that women in long-term recovery from breast cancer want and need from the survivorship care of the future.

Aim: This study explored the nature of supported self-care for women who had lymphoedema associated with breast cancer treatment, and the work of lymphoedema practitioners. Background: Health policy indicated a need to examine the potentially evolving roles of individuals with long term conditions who undertake self-care, and health professionals who provide support. Lymphoedema affects around one in five women who undergo treatment for breast cancer. A woman with lymphoedema can experience long term swelling, most commonly of her arm, affecting her life in various ways. Methods: Three small group discussions were undertaken with women who had lived with lymphoedema for more than two years (n=7). Field observation (n=16) of clinic appointments with women who had lymphoedema, were undertaken alongside interviews (n=15) with eight lymphoedema practitioners. Women who had newly developed lymphoedema (n=10) were interviewed three times over a period of six months. The study was underpinned by social constructionist perspectives, and informed by feminism and relational autonomy theory. Findings: Various structures of power influenced the capacity for supported self-care in women and practitioners. Lymphoedema influenced women's self-identity, and women experienced substantial distress and frustration relating to the initial development of lymphoedema, the chronic nature of the condition, and in adapting to self-care. Lymphoedema practitioners provided support for women from within a mainly bio-medical framework of care, often based within acute clinical settings. Accessing local, trusted information and advice relating to lymphoedema self-care was challenging for some women. Conclusion: An anticipatory approach to supported self-care was identified. The development of reflexivity and self-discovery was considered equally relevant to women with lymphoedema and lymphoedema practitioners. Professional approaches to support should recognise this anticipatory perspective and enable timely access for women to individualised and appropriate support at key points in their lymphoedema trajectory.

An individual’s personal experience may lead them to start to think about their own family history, to wonder if they might have inherited a genetic risk of breast cancer and start to consider the scientific genetic information. The focus for this research is how individuals make sense of genetic information and has been undertaken with members of the general population before they come into contact with specialist services. There are clear limitations in the literature addressing the focus of this research, including the population sampled - individuals before they come into contact with services, and the health context - specifically hereditary breast cancer. The literature review demonstrates the limited empirical evidence regarding what is known about how people make sense of genetic information when considered alongside their personal experiences. This qualitative study recruited ten individuals for whom the research question was significant. Interviews were undertaken and the transcripts analysed utilising Interpretative Phenomenological Analysis [IPA] (Smith et al. 2009). Utilising the IPA approach provided an in-depth and idiographic exploration of this research focus. Three higher order concepts: me and my family, processing information and knowledge, and dealing with it, and eight underpinning super-ordinate themes, were yielded from the data. The findings illustrate the challenges faced by these participants in trying to make sense of genetic information alongside their personal experiences when they try to bring sources of information together, identify what significance genetic information has for them and identify actions that could be put in place. The study offers insight into sense-making processes in one specific health context, and goes towards advancing the knowledge about how people process complex information such as genetic information. The implications of this study have been considered in terms of informing policy development, increasing public awareness and enhancing the genetic literacy of the general population.

This study addresses the effectiveness of communication between the team (doctors, sisters and social workers) and patients at the Breast Cancer Clinic of the Johannesburg Hospital. Tue needs of patients were highlighted, as well as the role of care-giver, both as a group and in their separate disciplines, in attempting to meet these needs. Tue empirical survey was carried out through the use of questionnaires as well as interview schedules. Patients, doctors, nurses and social workers were used as respondents. Results indicated that the majority of patients' needs for information and support were met by the team in general; however, a need for further social work intervention seemed to be apparent. In addition, several barriers were found to inhibit both team-patient and inter-team communication. Tue researcher used the information gathered in this study to make recommendations that will facilitate improved communication in the clinic, with specific reference to the role of the social worker. / Social Work / M.A.(Social Science: Mental Health)