Background: This study investigated influences and experiences of use of a UK Independent Cancer Support Services (ICSS), with a focus on how its use corresponds with the attempts of cancer patients and their families to manage the psychosocial impact of cancer. Method: A case study approach was used to investigate use of an ICSS providing counselling, complementary and creative therapies to cancer patients, families and carers. ICSS clients (17), non-clients (7) and therapists (6) took part in semi- structured interviews discussing influences on and experiences of use of the service. Interviews were analysed using thematic and narrative analytic approaches. Findings: Clients' experiences of the ICSS appeared to centre around a sense of sanctuary and emotional support, arising from a 'safe' opportunity to talk in a way that is under clients' control and through an ethos and atmosphere which conveys a sense of value and personal control over therapy. These experiences often did not reflect clients' initial reasons for coming to the service, which suggested more varied approaches, with many clients initially reporting problem-solving reasons for coming. Barriers to use of the service included concerns about legitimacy of use of the service, especially from family/carers, and discomfort with the emotional support-based ethos of the service. Discussion and Conclusion: Although the predominant experience of the ICSS was one of emotional support, many clients seemed initially reluctant I unable to identify a need for such support. I suggest that the ICSS provides an environment and relationships which enable clients to feel more comfortable with this kind of support. The use of an ICSS is a nuanced and dynamic process reflecting the shifting and multi-faceted nature of the psychosocial impact of cancer and the complex discourses regarding how to manage it.

Non-disclosure of a cancer diagnosis is a common practice in Asian cultures. However, little is known about the reasons for (non)disclosure among caregivers and the psychological experience of (non)disclosure on patients. This thesis reports four studies on cancer diagnosis (non)disclosure in India using the Common Sense Model of illness representations as a theoretical framework. Study 1 explored the experiences of, and reasons for, (non)disclosure among family caregivers of cancer patients using a qualitative methodology. Informing caregivers cited a range of reasons for informing including patient's suspicion, preparation, patient's personality, lack of control, patient's emotional well-being and self-belief. In contrast, non-informing caregivers cited patient's emotional well-being, patient's personality, jeopardizing patient's lifespan and family concerns as reasons for not informing. Study 2 examined differences between informing and non-informing caregivers on various demographic, medical and psychological variables. Reasons for, and for not, informing were the most important discriminating variables; informing caregivers more likely to agree with preparing the patient and patient's personality as reasons for informing, whereas noninforming caregivers more likely to agree with longevity and patient's personality as reasons for not informing. Study 3 explored the experiences of (non)disclosure in cancer patients using a qualitative methodology. Non-informed patients had an intense negative experience of the illness and used only passive coping strategies, whereas informed patients used a range of coping strategies. Study 4 investigated differences between informed and non-informed patients on various demographic, medical and psychological variables. Non-informed patients were less educated, were less likely to be involved in medical decision-making, were less likely to be having a combination of treatments, had weaker illness coherence, and were less likely to engage in a range of coping strategies. The thesis findings have important implications for both patient care and our understanding of the role of illness perceptions in caregivers and patients.

Title The initial phase of cancer care- an action research projectRationale for the study Anecdotal evidence suggested that patients receiving treatment within a Cancer Unit were not receiving equitable care. Some patients reported being told their diagnosis in an empathetic manner, whilstothers reported consultants being brutal and/or uninterested. In addition, it appeared that patients were given variable levels of support and information during their initial phase of cancer care. Aims of the study The purpose of the study was to explore whether the information and support offered to cancer patients in the initial phase of care was sufficient and appropriate to their needs. It was further hoped that the findings of the study could be utilised to change services in a patient centred way. Methodology A qualitative study divided into three stages. Firstly, eighteen non-participant observations of doctor/patient consultations were carried out at the time when patients were told they had a diagnosis of cancer and given information relating to their proposed treatment. The purpose of this was to ascertain what actually happened in practice. The data resulting from this stage of the study enabled an understanding of the problem in context and facilitated the development of an interview schedule, which formed the basis of the second stage of fieldwork. Stage two consisted of thirty-three semi structured, tape recorded patient interviews. These were carried out 3- 4 months following diagnosis. The third stage of the study consisted of interviews and focus groups with consultants, clinical nurse specialists and senior managers, the purpose of which was to explore their views regarding the results of the patient interviews and perceptions of theimplementation of change in clinical practice. The approach taken to structure the data collection was based on grounded theory (Glaser and Strauss, 1967). Findings Many of the issues raised in the patient interviews were consistentwith the literature i.e. patients experience a wide variety of emotions when told they have cancer. The vast majority of patients hear little after the word "cancer", it is therefore important to repeat information and ensure patients have access to ongoing support. Patients also value being told the truth, continuity of information and doctors showing that they care. They appear more satisfied with their care where an effective multidisciplinary team exists. However, patients inthe Cancer Unit where the study was conducted did not receive equitable care, particularly in relation to the amount and type of information and support offered to them in the initial phase of cancer care. The third stage of the study explored consultants', clinical nurse specialists' and senior managers' views relating to the findings from stages one and two of the study. The health care professionals did not exhibit surprise at any of the findings but were keen to explore them further. Views relating to the implementation of change within cancer care were also explored in this stage of the study and their comments were largely consistent with the literature on change management. Innovations in practice A number of changes have been made to clinical practice, including, improved multidisciplinary team working, developing multidisciplinary documentation and developing site specific cancer pathways which identify the patients journey from the point of referral through to follow up or palliation. These pathways help patients know what to expect at each stage of their disease journey and ensure patients receive equitable care, because the pathways act as guidelines for professionals outlining good practice at each stage of the journey. All of the developments initiated to date are aimed at improving the patient experience and staff satisfaction relating to the service they provide.

Aim: To use published literature to obtain estimates of large, medium and small differences in quality of life (QOL) data for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Methods: An innovative method combining systematic review of published studies, expert opinions and meta-analysis was used to obtain estimates of large, medium and small differences for QLQ-C30 scores. Published mean data were identified from the literature. Differences between groups of patients and over time within patients were reviewed by 34 experts in QOL measurement and cancer treatment. The experts, blinded to QOL results, were asked to predict these differences. Differences were combined using meta-analytic techniques to obtain estimates of small, medium and large effects. Qualitative interviews with patients and experts were used to assess the new methodology. Results: 911 articles were identified, with 211 relevant articles (3444 contrasts) for the analysis. Our systematic reviewof the randomised controlled trials (RCTs) showed that the clinical relevance of QOL differences was rarely discussed. Our meta-analysis estimates varied depending on the subscale and on whether QOL was improving or deteriorating. Thus, the recommended minimum to detect medium differences between groups ranges from 7 (diarrhoea) to 19 points (role functioning). When interpreting differences over time a minimum of 7 points represents a medium difference but for most subscales a larger difference is required for a medium deterioration compared with a medium improvement. Conclusion: Guidelines for interpreting the size of effects are provided for the QLQ- C30 subscales. These guidelines can be used for sample size calculations for clinical trials and to interpret differences in QLQ-C30 scores. The novel methodology was shown to be robust in sensitivity analyses but benefitted from a thorough quality assessment and using only the best quality evidence to derive the guidelines.

No description available.

Recent literature has defined 'emerging adulthood' as a period of development ranging from late teens to mid twenties. It is thought to be distinct from adolescence and adulthood as it incorporates a number of unique developmental features. Little research has thus far examined the experience of having cancer during this developmental period.

No description available.

Playing the Cancer Card: Illness, Performance and Spectatorship investigates the experience of spectatorship in relation to illness, an area that has received comparatively little attention in Performance Studies. The thesis interrogates these concerns through original interviews, archival research, close textual readings of performances and performance documentation and draws on critical frameworks, primarily from performance, literary and cultural studies concerning spectatorship, illness, disability, documentation and narrative. The project analyses both my performances that exemplify being an object of spectatorship and my experiences as a spectator to the performance of illness. ! Playing the Cancer Card argues that performance, through the experiences of spectatorship that it invites, works to broker the chasm between embodied experience of illness and discourses of that experience. The Introduction reviews academic literature and examines relationships between illness and models of disability. In Chapter 1, readings of work by Sontag, Spence and Baker demonstrate how individuals may strategically reject public production of, and spectatorship to, their work. Chapter 2 analyses interviews with Baker and Marcalo, demonstrating how performance can generate tensions between artists and advocacy groups when modes of spectatorship — regarding propriety and community politics — are policed. In Chapter 3, an analysis of cancer blogs elucidates how they may redress limitations imposed by traditional narrative structures around illness, forging new relationships between the ill and their spectators. Here I also consider my performances that respond to the pervasiveness of traditional narratives. Chapter 4 examines Fun with Cancer Patients, my practice-based research project, and argues that by addressing constructions of cancer, one may create work that productively addresses spectators who both have and have not experienced cancer. In the Conclusion, I evaluate two of my projects that address illness tangentially, arguing that understanding ourselves as spectators and objects of spectatorship can expand discourses surrounding embodied experience, especially of illness.

It is well recognised that physical illness is associated with an increased risk of experiencing psychological problems and disorder and that there is considerable variation in the nature and severity of psychological reaction. This variance is not explained by physical disease characteristics alone. The meaning that is ascribed by patients to physical illness experiences has been examined as a potential explanatory variable. However the term 'meaning' has been used inconsistently and has been subject to semantic confusion within the literature. The term has been used to refer to discrete interpretations, the process of making sense of the occurrence of traumatic personal events and the outcome of this process of 'search for meaning'. Meaning can also be distinguished in term of whether it is focused on cross- situational and global themes (e.g. 'The world is unjust, cruel and unfair') from a focus on interactions between an individual and situation specific events, so called situational meaning (e.g. 'I blame myself for having cancer'). Cancer is known to be associated with a number of specific psychological challenges many of which have informed research in psychosocial oncology. Global and situational meaning have been examined across a range of clinical populations. The existence of a range of valid and reliable assessment measures of global meaning has contributed to this literature. Although studies are beginning to examine global meaning in cancer, further development in understanding situational meaning in cancer has been hampered by the lack of any validated measure for this purpose.

Cancer is a major illness in the United Kingdom with differences in prevalence, morbidity and mortality, across the population. The focus of this study is two-fold: firstly, to explore African and African-Caribbean Londoners' experience of cancer services and secondly to use a narrative approach, focused on cancer, specifically related to African and African-Caribbean Londoners, an approach that has not been undertaken previously. Therefore, I also aim to explore whether such a research approach has value as a reseearch tool for these communities. Five research questions frame the focus of the study, namely: What factors affected their experiences of cancer services? How did culture, ethnicity and societal factors influence their experiences? How do those factors influence the stories they tell and the way they tell them? What were good and bad practices which affected their experiences? What is the value of the narrative approach in research related to cancer focused on African and African-Caribbeans? It is intended that this thesis will have a wider methodological relevance for BME health research, as well as relevance for BME cancer service research and provide suggestions on practical application of actions to address some challenges. The African and African-Caribbean communities together form the second largest minority ethnic group in the UK, but health research foucusing specifically on cancer related to these two communities is limited. The incidence of cancer is expected to increase amongst minority ethnic communities for a number of reasons: an aging minority ethnic population and changes in lifestyle and environment. It is therefore essential to gain a greater understanding of issues for African and African-Caribbean communities which either hinders or aids in providing an enhanced positive experience of cancer services in London. London was chosen because it is the most diverse, multicultural, multiracial city in the UK and hence the assumption that it has well-developed health structures and systems in relation to cancer, which meet the diversity of its population. Narrative research using dialogic analysis is the methodology used. In-depth interviews were conducted with twelve participants who were recruited through convenience and snowballing. The nine women and three men in the study originated from Nigeria, Ghana, Kenya, Trinidad and Jamaica. The findings demonstrate that ethnicity, religion and community play a significant part in impacting on their experience with cancer services. The narratives identify factors which reflect positive and negative experiences of the engagement of Africans and African-Caribbeans with cance services. Positive experiences of cancer services were articulated from the narratives, which included clinicians apologising for mistakes and clinicians creating an environment which encouraged a positive relationship between themselves and the patient. Some of the challenges patients articulated have been addressed in previous research. These include: cultural sensitivity, lack of access to information on cancer services, lack of respect, feelings of powerlessness and vulnerability. However, areas this research unearthed from the narratives that are not addressed elsewhere are: the power of church leaders, breast self-examination (BSE) and cultural issues associated with self-examination, acknowledgement of the heterogeneity of African and African-Caribbean communities and how that is played out in health seeking behaviour and beliefs surrounding cancer. Courage and resilience are concepts which are rarely explicitly mentioned or recognised in earlier UK research, including the role black men play as carers, a subject virtually non-existent in health research. As a qualitative research method, narrative research proved valuable in enablinig an understanding of issues that affect African and African-Caribbean communities in relation to cancer and receiving cancer services. Dialogic analysis provides a basis to reveal the depth of the participants lived experience and how those experiences shape their behaviour in relation to cancer care. This thesis illustrates that like all patients with cancer, the cancer experience is an individual phenomenon. However, narratives demonstrate that those experiences are bound up in historical, cultural, social, religious and spiritual perspectives.