A Research Active Hospice Dr Mary Turner International Observatory on End of Life Care Lancaster University United Kingdom

Overview Background and context Two studies: Exploring the research education needs of hospices: a focus group study Mapping research activity in hospices A framework for research in hospices Paper: Payne S & Turner M (2012) Methods of building and improving the research capacity of hospices. European Journal of Palliative Care 19(1); 34-37.

Background and context International Observatory on End of Life Care established in 2003. Help the Hospices Chair in Hospice Studies – Professor Sheila Payne (from 2006). Cancer Experiences Collaborative (CECo) – collaboration between Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton (2006-2012) to develop palliative care research and build capacity through training and support of researchers.

Why do we need research in hospices? To provide an evidence base for clinical treatment and care. To ground ‘best practice’ in evidence rather than hearsay. To provide cost-effectiveness and best use of health service and charitable resources. Is it ethical to provide care that is not evidence-based?

Study 1: Exploring the research education needs of hospices Aim: to engage hospice educators in discussing the research education needs of hospice staff. Methods: 4 focus groups in Manchester (n=18) and London (n=14). Funded by Help the Hospices and CECo.

Focus group objectives To stimulate discussion around the opportunities and difficulties of conducting research in hospices. To provide a networking opportunity for staff from different hospices. To promote shared learning by encouraging staff to take part in a focus group and a master class. To raise awareness among the participants about research issues in relation to hospices.

Discussion topics What are the opportunities for research in hospices? What sort of research projects are currently ongoing? Who gets involved in research and who doesn’t? What obstacles exist to doing research in hospices? The role of multidisciplinary research – is there one? What educational input in relation to research would be helpful for hospice staff?

Key findings (1) Attitudes to research are mixed. There is still fear and uncertainty about research. Some hospices are engaged in research, though most studies originate from other organisations or are part of a staff member’s degree course. Some staff are expected to undertake research as part of their role. More research ‘champions’ are needed to encourage practitioners to develop research ideas. Strong links exist between some hospices and universities.

Key findings (2) Participants identified wide-ranging research training needs: ‘You get [research training] on a formal course, but people on the ground don’t get this – how do they proceed with research, what methods could they use?’ Barriers: lack of time and expectation that patient care must take precedence: ‘They think it’s more work, I’ll just keep my head down, I don’t want more work.’ Staff need to see clear links between doing research and resulting benefits to clinical practice : ‘We need to provide that evidence to sell ourselves and our service.’

Study 2: Mapping research activity in hospices Aims: To scope the current infrastructure that exists within hospices to support research; To scope the extent to which hospices are currently engaged in research activity; To identify gaps in research infrastructure and engagement and propose ways of overcoming these; and To identify areas for further research.

Methods Brief telephone interview – 11 questions about research engagement and infrastructure Sample: 179 independent hospices Responses from 96 adult and 19 children’s hospices representing 129 hospices (72% response rate)

Key findings Over half the hospices (59%) had been involved in some sort of research activity during the previous year

Collaboration and networks

Academic research

Initiating own research Only 29 hospices (25%) had initiated their own research during the last year

Resources and infrastructure

All hospices provided computers and internet access to staff Access to journals All hospices provided computers and internet access to staff

Policies

A framework for research in hospices Level 3 Leading and developing research Level 2 Engagement in research generated by others Level 1 Research awareness in all professional staff

Level 1 Objectives: Possible strategies: Critical consumers of research Evidence based care and services Strengthens negotiations with other stakeholders Possible strategies: Journal clubs Learning to ‘read’ and critique research reports

Level 2 Objectives: Possible strategies: Hospices collaborating with research studies / trials Increasing the number of patients and carers offered the opportunity to participate in research Possible strategies: Hospice research leader and ‘champion’ Hospice research policy, including ethical issues Helping staff to understand good recruitment practices for patients and family carers

Level 3 Objectives: Possible strategies: Hospice initiated research Capacity building in research for hospice staff Wide use of resources Possible strategies: Guidelines on research activities and investment in hospices Links with other research active hospices (research consortia or networks) Links with appropriate academic research centres to provide expertise, supervision, mentorship

Conclusions Need to improve research capacity of hospice professionals to ensure that care and services are based on evidence from high quality research, in order to secure funding and develop practice. Research should be part of practitioners’ roles – job descriptions should set out the need for research activity and professional development. More ‘research champions’ are needed to encourage practitioners to engage with research at all 3 levels.

Thank you for listening For further information please contact: j.m.turner@lancaster.ac.uk

Doctorate in Palliative Care Study for a PhD by distance e-learning With Lancaster University, UK The PhD will enable me to research effective methods of delivering pharmaceutical care to palliative care patients in remote and rural areas. About the PhD The international element of this PhD is really important as we absorb and build on best practice around the world. The aim of the course is to equip people working in palliative, hospice and end of life care to undertake advanced study within their chose field, including clinical work, education, research, management, policy and advocacy. It offers the opportunity to complete a PhD by distance e-learning course work, research and thesis. Who should apply? This course will appeal to a wide range of people working in hospice, palliative care and end of life care. It is not restricted to any one professional group or discipline and is intended to be international in focus - appealing to people working in a variety of settings. http://www.lancs.ac.uk/shm/study/doctoral_study/phd/palliative_care/