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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.