A greater openness to research in hospices, achieved through a range of initiatives including a new research-orientated framework and partnerships, has been recommended by Lancaster University academics examining the future of hospice care in the UK.
The hard-hitting study, which identified 20 barriers to research associated with hospice care, said the hospice environment was not always conducive to research. Apathy and, in some cases, ‘overt hostility’ towards research created barriers for starting new projects at some UK hospices.
Led by Professor Sheila Payne, the Director of the International Observatory on End of Life Care at Lancaster University and President of the European Association for Palliative Care, the team were engaged by the Commission for the Future of Hospice Care to look in detail at Research in Hospice Care.
Professor Payne presented findings and recommendations at the Help the Hospices Conference in Bournemouth today (October 22).
The report also highlighted the majority of hospice organisations in the UK tended to work in isolation on specific initiatives rather than combining as a ‘community of effort’ and benefiting from research partnerships with the NHS or University sectors.
The study found some senior managers and hospice trustees knew very little about research or understood the implications of research or the need for research.
And a lack of research leadership and mentorship within the hospice sector, together with a lack of infrastructure, clarity, understanding, resources, funding, capacity, time, skills and expertise were also singled out as barriers.
The study found there was little engagement with service user involvement in research and the nature of undertaking research with patients with advanced conditions and their families was ‘challenging’.
Barriers identified also included a lack of:
Academic research centres, with sufficient critical mass and track record of research leadership, to offer mentorship in research and develop hospice programmesConcerted effort by medical charities to build research programmesNational organisations, representing hospices and palliative care, to provide high level leadership and lobbying of research funders
The report recommends a three-fold package of solutions directed at hospices, universities and national organisations supporting hospice care.
By working together, the study suggests, the groups involved could combine resources, provide leadership on ethical and governance processes, lobby at national level for funding and aspire to build the UK hospice research reputation in the international arena.
Key recommendations are:
- The adoption of a new Research Framework for Hospices to provide guidance for research in hospices
- Hospices taking part in the framework should be designated as ‘Research Active Hospices’ – a key quality marker of an environment of inquiry
- The establishment of regional Hospice Research Hubs in collaboration with university academic research centres
Other report recommendations, at hospice management and strategic level, include the development of a culture of inquiry in all aspects of hospice care with the recognition of the value of research as a priority together with the earmarking of budgets for research, investment in staff training, the development of networks with key academic research centres and the identification of research champions based in hospices.
The study suggests universities develop partnerships with hospices and identify a ‘hospice research champion’ to liaise with hospices about research, offers mentorship and establishes a ‘rising stars’ programme to develop and retain early career researchers in this field and develops posts with a specific hospice research remit.
National organisations supporting hospice care are challenged with the responsibility of adopting and incentivising the Research Active Hospices scheme and establishing the Hospice Research Hubs
“Hospices in the UK are widely regarded as clinically world-leading and now they must rise to the challenge of being global leaders in research too” said Professor Payne who wrote the report with Dr Nancy Preston, Dr Mary Turner and Dr Liz Rolls, all from the University’s Faculty of Health and Medicine. “No longer can hospices make assumptions that their services are ‘high quality’. They must proactively engage in undertaking the research to support their claims.”
National Clinical Lead at Help the Hospices Heather Richardson, added: “Robust research is critical for hospices to demonstrate their value in an increasingly competitive care environment, so we welcome this report’s candid assessment of the changes needed to achieve this. We recognise there is much more work to be done, particularly to foster a research-friendly culture in hospices and for more joint work between hospices and universities. We will be actively driving forward these recommendations with our member hospices.”
Help the Hospices (www.helpthehospices.org.uk), the UK’s leading charity for hospice care which supports and champions the work of more than 200 hospices, set up the Commission, chaired by Dame Claire Tickle, a year ago. The aim of the overall study was to examine the future of hospice care and identify major concerns on the future of research related to hospice care and provide recommendations to inform work of the Commission relating to research and research capacity building. All Lancaster University’s research recommendations have been included in the Commission document.