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Five key research projects looking at the needs of people who care for terminally ill patients at the end of life have received grants from the Dimbleby Marie Curie Research Fund. The news comes in advance of National Carers’ Week (18-24 June), which marks the contribution made by the UK’s six million unpaid carers to those they care for and their communities.
Applications were invited from research teams around two end of life carer-focused areas where there is little existing knowledge. These are the demographic characteristics and personal circumstances of unpaid carers; and educational interventions to help support carers gain the practical and nursing skills they need to care for loved ones at home.
More than £531,000 has been awarded to the five successful projects, subject to ethical approval.
Dimbleby Marie Curie Research Fund
| Grant Recipient | Project title and summary |
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Dr Kate Flemming
at the University of York
Duration of project: 18 months
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Family carers’ perceptions of their educational needs when providing end-of-life care: a systematic review of qualitative research
This study will draw together research exploring what family carers report finding helpful and supportive when they are taught to care for people at the end of life.
Doing this will help develop a more full and extensive understanding of carers’ views, enabling improvements to be made in the way education for carers is planned and taught in the future.
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Professor Jane Seymour
at the University of Nottingham
Duration of project: 24 months
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Cascading knowledge about end of life care at home: the development and piloting of a training programme for those who help carers and a carer resource pack
This study will develop and pilot a training programme for volunteers (who could be experienced or bereaved carers) as well as carer support workers.
Enabling them to share their experience and knowledge during provision of mentorship and support to carers looking after terminally ill family members at home. An associated resource pack for carers will also be developed.
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Professor Scott Murray
at the University of Edinburgh
Duration of project: 24 months
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A feasibility study of early identification, assessment and support for informal carers in primary care
We know that carers can be reluctant to identify themselves in this role and as a result don’t request or access the support they need.
This project will develop a model to help identify, assess and ultimately support informal carers, in particular those who care for people approaching the end of their life. This model will be piloted within GP practices.
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Professor Sue Latter
at the University of Southampton
Duration of project: 24 months
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A phase I-II feasibility trial of Cancer Carer Medicines Management (CCMM): an educational intervention for carer management of pain medication in cancer patients at end of life
Previous research has identified a need for carers to be trained in practical and basic nursing skills to better equip and support them to care for their dying relative.
This project will draw together evidence in this field and design and evaluate an education and support package on cancer pain medicines management for family and other home carers.
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Dr Elizabeth Sampson
at the University College London
Duration of project: 12 months
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A retrospective national cohort study of the demographic characteristics, health outcomes and health service use of cohabitees living with terminally ill patients with cancer, chronic obstructive pulmonary disease and dementia
Without adequate support, caring for a partner at home who is dying from progressive illness can be detrimental to the physical and mental health of the carer.
This project, using a large UK primary care database, will describe the physical and psychological wellbeing of cohabitees living in a two adult household with someone dying with cancer, dementia or lung disease. It will also compare the impact of caring for someone with these different illnesses.
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Dr Teresa Tate, Medical Adviser and research lead for Marie Curie, said: “We are pleased to make these awards jointly with Dimbleby Cancer Care to fund these excellent research projects. This is pioneering work looking at the needs of an often neglected group – people who care for patients at the end of life.
“All of us who care for terminally-ill people are aware of the essential role of so-called informal carers – usually a patient’s partner, children and other relatives. But there has been very little research into the pressures they face, or how they could best be supported. These projects will provide evidence about carers’ needs and how they can best be met. That’s urgently needed to design future services that will effectively support both patients and carers.”
Jonathan Dimbleby, Trustee of Dimbleby Cancer Care, commented: “Partners, relatives or friends can find themselves thrust into a major caring role for someone nearing the end of their life. The majority have no specific skills or experience to help them deal with the everyday medical and practical needs of the person they are caring for, and they cope in the best way they can. We really believe that the outcome of these first rate research projects will play a major part in improving support for these carers in the future."
The Dimbleby Marie Curie Research Fund was established in 2010. Both charities share the aim of improving research into end of life issues and joined forces by pooling some of their financial and administrative resources to address the serious knowledge gap in this area. In its first funding round, the Fund selected three major studies into the use of volunteers in end of life care.
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