Part of my role at Hospice UK is to support research activity in hospices, building on the work carried out as part of the Commission into the Future of Hospice Care, which led to the publication of ‘Research in palliative care: can hospices afford not to be involved?’ in 2013.
This report, written by Professor Sheila Payne and others from the International Observatory on End of Life Care at Lancaster University, outlines a framework for hospices on how they can become more ‘research active’.
As we take forward our thoughts about hospices being research active, through consultation and stakeholder meetings, I have been interested in the experiences of others in their own hospice research activity.
A chance encounter on Twitter connected me up with Colleen Dempers (@colleendempers), research and development lead at Cranford Hospice in Hawkes Bay, New Zealand, who said that their hospice had followed the framework set out in the Commission’s publication “pretty much to the ‘t’”. So I asked Colleen about her thoughts and experiences.
Tell me how Cranford Hospice started being research active?
The R word! Like many of my hospice colleagues I have always been interested in research but slightly afraid of it – happy to critically read the work of others, but never quite sure of my own contribution.
However, I could not get away from the fact that there is so much in the world of palliative care is not captured, simply because it is not written up. There are multiple reasons for this, but money and skills come top of the list. However, these challenges don’t negate our responsibility towards research.
Enter Help the Hospices (as it was then). In 2013, the Commission into the Future of Hospice Care produced a report entitled: ‘Research in palliative care: can hospices afford not to be involved?’ This report put forward a framework that hospices might employ in order to become more research active. It is a simple but useful tool with suggestions for staged implementation. I took the plunge and recommended we embark on this journey at our hospice.
Cranford Hospice is a medium sized hospice serving both urban and rural areas in Hawkes Bay, New Zealand. We have on average 180 people on our books and an inpatient unit with eight beds. Like most other hospices we provide a range of support for those with palliative needs in our communities.
Looking at the suggested levels of research activity, what level are you at?
Level two is where we are at now – which we call being “research supporters”.
We have a dedicated research post, responsible for encouraging collaborative work and establishing links with tertiary institutions. We also have a yearly work plan with some set priorities and goals for the year.
The ground work done at level one was really important in terms of establishing a good foundation for research activity.
At level one the focus was on being “research aware”. To do this we formed a group of keen staff, who met regularly over a year to learn about the basics of research – ethics, methods, literature searching and more. A number in the group had already completed their own theses and one had a doctorate, so they were our mentors. During this year we also learnt from other research active hospices.
What are your thoughts now about your hospice research activity?
We have made some encouraging progress. We have an active online journal club, a Masters support group, good links with local tertiary institutions, a couple of manuscripts submitted (hopefully soon to be published) and some collaborative projects in the pipeline.
It’s early days yet, and we still have a lot to learn, but we are moving forward and that’s what matters.
What advice would you give to other hospices about being research active?
One thing we decided early on was that this was going to be a group effort rather than a one-man band. This was important because we wanted to grow a culture of research within our team.
All research activity is led by our research group, who continue to meet regularly to learn, discuss and action items. Anyone can join the group at any time provided they are willing to contribute.
We have also had tremendous support from our leadership who have seen our enthusiasm and backed it with some meaningful resources.
This is all encouraging news, because if our hospice can become research active, then really any hospice can.
We see the importance, and indeed the responsibility, of contributing towards the body of knowledge about palliative care and hospice issues both locally and internationally. Our research priorities are:
- palliative care in rural settings
- palliative care for people with cognitive difficulties (eg dementia)
- palliative care in aged-care
- palliative care in the community (eg people’s homes)
- palliative care after-hours.
You can download the Commission report ‘Research in palliative care: can hospices afford not to be involved?’ from the Hospice UK website, and contact Sarah for further information about her work in this area via Twitter (@learnhospice @researchospice) or by email at firstname.lastname@example.org