A call for applied health research studies to increase the evidence base to support health and care services to help people at the end of their lives to live as well as possible and to die with dignity, compassion and comfort. The scope for research includes the impact on patients, families, carers, workforce, as well as an evaluation of the burden on and uncertainties within the health and social care system. We welcome research proposals for end of life care in any disease, service or setting, including hospitals, specialist centres and services, community services and care homes.
For the purposes of this call ‘end of life care’ involves identifying and caring for “people who are likely to die within 12 months”, including those with advanced, progressive, incurable conditions and people with life-threatening acute conditions that are expected to result in early death. It covers care provided in any health and social care setting, for both adults and infants, children and young people. It also embraces support for families and carers.
Given the scope of this call, we would welcome applications that span the remit of one or more of the participating research programmes (EME, HTA, HS&DR and PHR) and which comprise of co-ordinated teams of investigators spanning different specialties/disciplines and geographical centres.
Deadline for proposals:
There will be two deadlines for stage 1 applications, 6 November 2018 and 19 March 2019. Applicants can choose the call deadline which allows them to fully build their team and develop their research proposal.
A webinar to support applicants will be held on 4 July 2018, 10 am to 11 am. To register for the webinar please email your name and email address to firstname.lastname@example.org by Friday 29 June 2018. We will send attendees a webinar invitation with details of how to log on to the webinar on Monday 2 July.
For support developing applications, applicants are also encouraged to contact their local NIHR Research Design Service (RDS) or equivalent in the first instance.
Specific areas of interest for research
For the purpose of this call, some broad categories, informed by Marie Curie’s grant mapping analysis on palliative and end of life care research, have been described below with examples of particular areas of interest for research. However, these are examples and do not represent an exhaustive list.
1. Workforce and skills issues in end of life care Workforce issues including both home/community and hospital care. Future proofing of the health and social care workforce remains an important issue e.g. the pipeline of trainee staff, role changes and developing universal end of life care skills across health and social care, and the pool of available staff due to other external forces.
2. Referral / transition across health and social care services, particularly continuity of care, this includes transition within any care services. Patients in end of life care are likely to transition multiple times. The quality of handover will have a significant impact on both the patient and their carer/family. This is challenging during out of hours transition, particularly in relation to ensuring document sharing is managed well, ensuring patient safety and meeting expressed patient needs. Enabling the most compassionate care is an area of interest. This also includes the effectiveness and cost-effectiveness of different service models for addressing unscheduled urgent needs for people in their last year of life – including rapid response services, 24 hour helpline, hospice at home, etc.
3. Managing symptoms and care needs in end of life care Fluid retention, managing patient agitation and delirium, anticipatory prescribing / repurposing of drugs; and care after death. The use of technology to support the management of symptoms and pain levels.
4. End of life care for infants, children and young people with life-limiting conditions, this includes end of life care planning, choice or preferred place of death, impact of timely perinatal palliative care, emotional and psychological support needs, managing breakthrough pain, and recognising that a child or young person may be dying.
5. Time and place of access to services this includes identifying the key components of personalised care and support planning that link most closely to improved outcomes and experience as well as how these can be best delivered to improve person centred outcomes and service effectiveness. This area may include the use of technology for remote patient monitoring.
6. Bereavement support - Including impacts on wellbeing for patients, families and carers and care after death service delivery.
7. Reducing health inequalities in end of life care - This includes provision of services, particularly for specific vulnerable groups for example people with learning difficulties, mental health conditions and provision for homeless people in need of end of life care. The opportunity for developing compassionate communities and enabling /developing programmes or service models for self-care are also of interest.