Summary of research projects funded by Dimbleby Cancer Care – past and present
Dr Karen Roberts,University of Northumbria
Sexual recovery following cancer treatment is an important element of cancer survivorship care as difficulties in sexual functioning may lead to emotional problems and relationship breakdown. Brief cognitive behavioural therapy (CBT) is recommended for the treatment of anxiety disorders, therefore this intervention may be effective in alleviating sexual difficulties in this patient group, particularly those commonly precipitated and maintained by anxiety in the patient or couple.
The primary aim of this study is to determine the feasibility of a brief CBT intervention delivered by clinical nurse specialists (CNSs) for the treatment of mild /moderate sexual difficulties following gynaecological cancer treatment.
Professor Gunn Grande & Dr Gail Ewing,University of Manchester
Title: Factors associated with successful implementation of a Carer Support Needs Assessment Tool (CSNAT) in Hospice Home Care (HHC)
Family carers play a central role in enabling patients to be cared for at home at the end of life and to die there if that is their wish. However, care-giving brings considerable costs for carers. There is extensive evidence of negative impacts on carers’ physical health and emotional well-being. Carers experience social isolation, pressures on finances and employment, and increased mortality. Ensuring that carers are adequately supported can ameliorate these effects: it is therefore important that their support needs are assessed and addressed.
The researchers have already developed and trialled a Carer Support Needs Assessment Tool (CSNAT) to support carers looking after patients at home towards the end of life. The current phase is a study into factors required for successful translation and implementation of CSNAT into practice.
Dr Gail Ewing, University of Cambridge
Sharing bad news: development of an intervention to support patients with cancer share the news of their diagnosis with significant others.
Considerable research exists on how health professionals break bad news to patients and other family members, resulting in numerous guidelines/recommendations Communication skills training for health professionals is now routine. However, patients may have difficulty in relaying bad news and no empirical research exists on the process/experience of patients sharing bad news with adult significant others. Thus the experience of sharing bad news of a potentially incurable diagnosis of cancer with adult significant others, and the development of interventions to support this, has not been studied. The research aims to:
(1) identify key components of an intervention to prepare and support patients in sharing bad news with significant others
(2) (using Stage 1 data) develop a suitable, acceptable and feasible intervention enabling health professionals to prepare patients for, and support them with, sharing bad news with adult significant others.
Dr Jane Griffiths, University of Manchester
Improving psychological support by District Nurses (DNs) in palliative home care: a pilot study of a communication skills tool
We know that many cancer patients have unmet psychological needs and DNs find psychological support difficult and are often reluctant to ask about patients’ emotional needs and concerns because they lack confidence in dealing with them, and are apprehensive about time constraints. DNs are therefore not used to their full potential in providing psychological support for patients and often lack training in this respect
A communication skills tool has been developed – SAGE & THYME – which addresses health care professionals’ concerns about confidence and time constraints when managing the psychological needs of cancer patients.. It has been extensively piloted in hospital and educational settings and resulting increases in knowledge and confidence, and high motivation and have resulted. This project will pilot SAGE & THYME with DNs in the home care setting.
Dr Catherine Walshe, University of Manchester
Maintaining psychological well-being in advanced illness: What can we learn from patients’ and carers’ own coping strategies?
People with advanced cancer and their carers experience stress and uncertainty during their illness journey. This affects quality of life and physical and mental health. These health issues are a burden to patients and carers. Acceptable, patient and carer centred, cost-effective interventions to promote the maintenance of well-being are needed.
The research aims to understand how people with advanced cancer and their carers learn about and develop positive coping strategies to self-manage stress and uncertainty in their lives and thus recover or maintain psychological well being.
The researchers will work with patients and carers to develop and test a patient and carer centred intervention to enable sharing and using effective coping strategies.
Dr Gunn Grande, University of Manchester
Evaluating the impact of a Carer Support Needs Assessment Tool in Hospice at Home care: a feasibility trial
Caregiving towards the end-of-life entails considerable emotional, social, financial and physical cost for carers, even increased mortality. There is evidence that good support can improve carer psychological outcomes longer term and that specialist palliative care may reduce carer mortality.
While there are research-based questionnaires for measuring carer needs, their content and length generally make them unsuitable for use in everyday palliative care provision. Conversely, work by a Help the Hospices Carer Assessment Working Group shows that carer assessment undertaken by palliative home care services relies on ad hoc, non-validated tools that show little communality in content or format. To address this gap, an evidence-based, comprehensive Carer Support Needs Assessment Tool (CSNAT) suitable for use in all domains of palliative home care has been developed in collaboration with the National Forum for Hospice at Home.
CSNAT needs to undergo proper quantitative testing to assess whether it really does have an impact on quality of care and carer outcomes so this project will conduct feasibility trial work on the CSNAT to establish whether it shows sufficient impact on quality of care and carer outcomes to justify further implementation and testing in a multi-site future trial.
Dr Teresa Beynon, King’s Healthcare Partners, London
Developing a model of best practice for people with Cutaneous T cell lymphoma (CTCL) and their caregivers: an investigation of multidimensional supportive and palliative care needs.
Although a relatively rare condition, CTCL can be devastating in its impact on patients – and the impact on informal carers and health professionals of CTCL has not been explored.
The primary aim of the research is to identify the multidimensional palliative and supportive care needs of patients with CTCL, and those of their carergivers, both informal and professional.
No evidence-based models for palliative and supportive care exist. To offer an appropriate and comprehensive intervention for this challenging disease and optimize care, we need to better understand the experience across multiple domains for patients, families and health professionals and integrate this with our previous quantitative data, to redesign an appropriate service model for both patients and their carers.
Dr Daniel Munday, University of Warwick
Receiving end of life care at home: experiences of the bereaved carers of cancer patients cared for by health care assistants
Many terminally ill cancer patients and their families prefer for death to occur at home rather than in an institution; however as death approaches caring can become an increasing burden for the patient’s family and friends. The End of Life Care Strategy for England (DH, 2008) sets out a policy directive to enable patients to die at home if that is their choice. An important aspect of home care is provided by health care assistants (HCA) who will stay with the patient for a number of hours and provide support for the family in their caring role. Reviews of the HCA role indicates that they provide nursing, social and emotional support for the patients for whom they are caring. However, little research has focused in depth on the details of the care they deliver and very little research has explored the experience of bereaved family carers of patients who have received such services.
This project aims to explore the experiences of bereaved family carers who have received home care services in three different geographical areas providing different models of care. The results from the study will be used to inform service development so that effective models of care can be provided for patients dying with cancer.
Professor Emma Ream, King’s College London
Enhancing the role of carers in the outpatient chemotherapy setting: a participatory action research project
Research into needs of carers of people undergoing chemotherapy has been neglected. The limited evidence describes how carers find supporting someone through chemotherapy intensely anxiety-provoking and they lack confidence in managing patients’ side-effects (McIlfatrick et al., 2006). Insufficient knowledge of chemotherapy side-effects can result in life-threatening delay in seeking help when symptoms arise. The NCEPOD (2008) report investigated deaths within 30 days of chemotherapy and determined that a substantial number of people waited for more than 24 hours with symptoms of neutropenia before seeking assistance. This led the National Chemotherapy Advisory Group’s call for improvements in advice and support for carers (NCAG, 2009). However, research has yet to establish what support carers of people having chemotherapy require or how to provide this.
Dr Gunn Grande, 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.
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.
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.
- 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
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
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
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.
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
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.
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
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.
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.
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?
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
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.