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Dimbleby Cancer Care Research Fund Summary of research projects in progress funded by Dimbleby Cancer Care 1. Dr Gunn Grande, School of Nursing, Midwifery & Social Work, University of Manchester Predictors of patients’ use of cancer support groups: a prospective study Cancer support groups generally benefit patients. However, only a small minority of cancer patients attend support groups. Older patients, men, low socioeconomic status (SES) patients, and black and ethnic minorities are underrepresented among participants. Research suggests that demographic differences in attendance may be explained by underlying psychosocial variables, in particular negative beliefs about support groups, lack of encouragement from others, internal and external barriers to use, and perceived lack of relevance of existing groups to own needs. The proposed project will establish the key psychosocial predictors of support group use and translate these into interventions for change where appropriate. 2. Dr Christopher Bailey, University of Southampton, School of Nursing and Midwifery Care at the end of life: experience and support needs of older family caregivers of people with advanced cancer This study will describe the experience and support needs of older family members caring for an older partner or relative with advanced cancer at home. It will also i) evaluate the role of current service provision in supporting family members providing end-of-life care, and ii) determine the feasibility of working with family caregivers to develop self-management and/or peer support strategies for end-of-life care. The study will provide a first detailed model of the experience and support needs of older primary caregivers and their relatives with cancer. 3. Dr Iris Fineberg Cohen, International Observatory on End of Life Care, Lancaster University Evaluation of Preferred Place of Care (PPC): Towards quality improvement (Preferred Place of Care (PPC) is an advance care planning tool recommended by the National Institute for Health and Clinical Excellence (NICE). Primary aim: The primary aim of this study is to evaluate how PPC is perceived, utilized and experienced by patients, family members and professional health care providers who have used the document. Secondary aims: to determine in what ways, if any, the use of PPC promotes and facilitates communication among patients, family members and care providers to identify advantages and shortcomings of specific content and format components of the PPC document to elicit users’ recommendations for implementation, content, and format of PPC 4. Professor Walker, Institute of Rehabilitation, University of Hull A feasibility study of relaxation therapy plus autohypnotherapy (HYPREL) for patients with thoracic cancer undergoing radiotherapy. As radical radiotherapy for lung cancer becomes more sophisticated, it is becoming increasingly important to: 1. to develop a programme of cue-controlled relaxation and auto hypnosis (RELHYP) in order to facilitate predictable, regular, gentle breathing during planning and radiotherapy, 2. to obtain preliminary evidence of feasibility and effectiveness, 3. to validate an automated system for quantifying movement during planning radiotherapy, and 4. to obtain information about the effect size of the intervention to inform the design of a definitive RCT. 5. Dr Andrew Wilcock, Nottingham University Hospitals NHS Trust Realising the benefits of exercise for people with incurable cancer: the how, where and when? Exercise therapy improves levels of physical activity, psychological well-being and quality of life in people who have received potentially curative treatment for their cancer. Preliminary work suggests that exercise therapy programmes can also help people with incurable cancer when they are adhered to through to completion. It is vital to explore this further because the majority of people with cancer have incurable disease. 6. Professor Julia Addington-Hall, University of Southampton A case study approach to explore patients', carers' and professionals' experience of cancer of unknown primary site (CUP). CUP is a diagnosis of exclusion and previous research has shown that patients have poor understanding of their condition, uncertainty about prognosis - and professionals find it a challenging diagnosis. The aim of the research is to improve care and support to sufferers and carers 7. Dr Faith Gibson, Great Ormond Street Hospital Exploration of parents' and professionals' roles in sharing illness and treatment information with children who have cancer. There is a dearth of research on giving this information, and the optimal timing in giving it. The outcome of the research aims to help the children feel more in control, and to participate more in decision making 8. Dr Gail Ewing, Universities of Manchester / Cambridge Development of a 'what matters to family carers' assessment tool for evaluation of care and support at end of life (Phase 2) There is little evidence that carers' needs are being assessed during end of life care. The aim is to design and evaluate a carer assessment tool. 9. Dr Sue Hall, King's College London Dignity therapy for people with advanced cancer: assessing feasibility, acceptance and potential effectiveness. Loss of dignity at the end of life has high levels of psychological, spiritual distress, and loss of will to live. Evaluations in Canada of non-hospitalised patients has shown positive outcomes for patients and their families/carers, and has also helped the bereaved. The research will look at adapting the Canadian model for UK suitability 10. Dr Barbara Hanratty, University of Liverpool Older adults with cancer living alone at end of life. Preferences, experiences and costs of care. This is a feasibility study to inform a large more robust study in the future. The hypothesis: older people with cancer living alone at end of life may be a disadvantaged group whose care merits attention. 11. Dr Richard Harding, King's College London Development and pilot testing of the 'Questionnaire Prompt List' intervention to meet information needs of advanced cancer patients and their carers. The outcome of the research aims to help overcome the difficulties that patients and carers have in formulating and posing sensitive questions to clinicians - and guiding clinicians on how much information to provide. Pilot studies in Australia have had very good results 12. Professor Sara Faithfull / Jane Cockle-Hearne, University of Surrey Self-management of urinary symptoms after treatment for prostate cancer: a phase III randomised control trial The research targets the late effects experienced by men after treatment for prostate cancer. A literature review has identified that that self-management interventions which incorporate both emotional support and physical instruction give rise to the greatest benefits for men in respect of symptom improvement and quality of life. The project is developing the learning from an earlier pilot study and will provide valuable input in developing initiatives to address the needs of men after treatment for prostate cancer. 13. Dr Clare Harley / Professor Galina Velikova, Institute of Oncology, Leeds Evaluating the needs of patients living with chronic cancer: interviews and survey techniques Many advanced cancers are now managed as long-term or chronic diseases. Patients with active, non-curable cancer are having their lives extended by using one therapy until its effectiveness diminishes, then moving to the next available option. There is an increasing number of treatments available to patients. They are not without cost to the patient and are typically associated with side effects that impair quality of life. In addition, patients with incurable cancer have to live with uncertainty. Currently, little is known about the everyday challenges faced by patients with incurable cancer, nor about the support services they require. The research among patients and research professionals aims to: to improve understanding of chronic cancer from the perspective of both the patient and the health professionals Highlight good professional practice and identify areas for improved service provision and care management develop and validate a patient survey and a health professional survey to examine the broader picture of chronic cancer across the UK Raise awareness of chronic cancer and to identify new directions for future research and service development. 14. Dr Nikki Jarrett, University of Southampton Communication pathways surrounding people with advanced cancer: who is involved, how do they communicate, and how do patients understand and manage this? People living with advanced cancer often undergo a variety of treatments and care monitoring in different locations with various health and social care professionals. Communication, coordination and continuity of care can therefore be a source of difficulty. In order to inform the development of evidence-based interventions to improve communication, the aim of the research is to fully describe the communication pathways surrounding and involving people with advanced cancer, and the strategies they use to understand and manage this communication. The research is needed to answer the following questions: who is involved in people with advanced cancer’s care, and what are their formal, informal, routine and unusual pathways of communication? How do patients and families engage in and help to manage this complex situation? What factors enhance and inhibit the effective operation of communication pathways in advanced cancer? 15. Dr Geraldine Leydon, University of Southampton Mapping and understanding specialist cancer helplines in the UK There are over 1500 UK helplines in operation, yet scant knowledge about the role of cancer focused helplines, types of call and callers, and the perspectives of those delivering and seeking cancer-related telephone help. In order to determine factors which may contribute to or hinder the effectiveness of cancer-focused telephone helplines, the study will: conduct a survey of UK based telephone helplines specialising in support and advice to those affected by cancer in order to map UK services and provide an understanding of their varying scope and roles. Conduct a qualitative interview study to elicit key perspectives / experiences of helpline callers and call-takers 16. Dr Catherine Walshe / Professor Karen Luker, University of Manchester Patient and family carers’ construction of quality in supportive and palliative district nursing care District nurses are seen in practice and policy terms as central to the provision of supportive and palliative care at home. This research project aims to: to understand patients’ perceptions and definitions, and those of co-resident family carers, of what constitutes quality district nursing supported and palliative care provision and outcomes to explore variations in such perceptions and definitions in different patient groups, and between patients and carers.