Research Update Newsletter of the Northern Ireland Hospice & University of Ulster Research Committee Newsletter 2014 Volume 6, Issue 1 Committee Members Prof George Kernohan (Ulster) Joint Chair Prof Max Watson (Hospice/Ulster) Joint Chair Welcome to the 10th edition of Research Update! “It's an incredible environment!" Quote from "Getting Home", an evaluation of the outcomes of stepdown care within Northern Ireland Children's hospice. Prof Kevin Brazil (QUB) Ms Karen Carr (Hospice) Mrs Susan Foster (Hospice/Ulster) Mrs Loretta Gribben (Hospice) Dr Felicity Hasson (Ulster) Rev Caroline McAfee (Hospice) Dr Noleen McCorry (Marie Curie) Dr Sonja McIlfatrick (Ulster/AIIHPC) Dr Dorry McLaughlin (QUB) Ms Tracey McTernaghan (Hospice) Dr May Stinson (Ulster) Mrs Mary Waldron (Ulster) Ms Barbara Watson (Hospice) We were pleased to receive the final report of a research project carried out by Sharon McCloskey, Northern Ireland Children’s Hospice. Sharon completed her study of new arrangements to help children with life-limiting illness in the transition from acute care to home and her findings are inspiring. We agree, hospice is an incredible environment and we share the enthusiasm for research and evaluation of hospice and palliative care within the many physical environments that we plan to work with throughout 2014. Without doubt, we look forward to change and development through the year - in particular we say "hello" to Loretta Gribben, Director of Nursing and Patient Services, Northern Ireland Hospice, and at the same time "goodbye" to Brendan McCormack, Director of the Institute of Nursing and Health Research at University of Ulster. Brendan has been very supportive of our academic colleagues who help with the development of small, medium and large scale research to inform palliative care at NI Hospice. We welcomed Kevin Brazil, Queens University Belfast to the committee last year, and we are delighted with the increasing linkages being made with both Ulster and Queens. You will find examples of current project developments elsewhere, and don't forget to use the committee to help develop your own ideas for research and practice development (see page 4). Dr Clare White (Hospice) Best wishes to all for the year ahead. www.nihospice.org [email protected] 1 Research Studies Current Projects Evaluation of the Carers’ Support Programme at Northern Ireland Hospice (Prof George Kernohan and Barbara Watson) Palliative Day Care Interventions Offered at Northern Ireland Hospice: A Retrospective Chart Review (Prof George Kernohan and Barbara Watson) “Getting Home” – an evaluation of the outcomes of step down care within a children’s hospice setting for children with complex physical healthcare needs experiencing prolonged discharge from hospital to home. (Sharon McCloskey) Valuing Volunteers: A review of volunteering in the adult services at NIH (Prof George Kernohan) Evaluation of the Regional Palliative and End of Life Care Learning & Development Programme for Nursing Homes in Northern Ireland Dr Dorry McLaughlin, Principal Investigator, QUB The Regional Palliative and End of Life Care Learning & Development Programme for Nursing Homes in Northern Ireland ran from August 2012 to June 2013. In total 266 nursing homes were invited to participate in the 3-day programme, which explored the five key learning domains identified within the strategic palliative care driver “Living Matters: Dying Matters” (DHSSPS, 2010). The domains comprised, overarching values and knowledge, communication skills, assessment and care planning, symptom management and advance care planning (ACP). At the end of the programme participants identified their own learning, and how this could be transferred to practice through developing an action plan for their care setting. Findings: A dramatic growth in knowledge and skills appears to have been achieved by nursing home staff participants with 95.3% (n=590) completing the pre and post palliative care competency tool. They reported feeling more confident, knowledgeable and prepared to provide palliative care in the nursing home. An analysis of all action plans to transfer learning to practice noted that for 112 nursing homes the most commonly occurring focus was ACP , 70.5% (n=79). Second occurrence was initiating bereavement follow up leaflets, 50% (n=56) and third, self care for staff in coping with death and dying, 27.6% (n=31). Recommendations: Further training for the nursing home sector in palliative and end of life care, a training programme for care assistants; inter-disciplinary training models for staff and GPs should be explored to promote good communication, teamwork and understanding roles. A full copy of the Executive Summary can be obtained by contacting the Education & Research department of Northern Ireland Hospice. Launch of the Regional Palliative and End of Life Care Learning & Development Programme for Nursing Homes in Northern Ireland On Friday 29 November 2013 at Mossley Mill, Newtownabbey, Dr Dorry McLaughlin, Queens University and Mrs Susan Foster, Northern Ireland Hospice was invited to present the findings of the report at the launch of the Guidelines for Palliative and End of Life Care in Nursing Homes and Residential Care Homes. “We welcome the opportunity to share this vital information with such a key audience”, Mrs Foster stated, furthermore. “This learning and development progamme has provided knowledge and skills to staff that we hope can be built upon” . 2 Research Studies Current Projects Establishing the Prevalence and Incidence of Deep Venous Thrombosis of the Leg in Patients Admitted to a Specialist Palliative Care Unit. Supporting the Role of the Clinical Nurse Specialist in Palliative Care within one Hospice Setting in Northern Ireland MSC Advanced Nursing, Evelyn Whittaker Evelyn completed her MSc in Advanced Nursing and graduated in December 2013 from the University of Ulster. Her research project focused on the role of the Clinical Nurse Specialist (CNS) as a core member of the specialist palliative care team, and the hypothesis that the role consists of four specific components: clinical practice, education, research and leadership/ management. The development and evaluation of a psychoeducational intervention for patients with advanced cancer who have cachexia and their lay carers. The aim of the research was to explore the learning and development needs of Palliative Care CNS’s at Northern Ireland Hospice in order to fulfil all components of the role. Three themes emerged from data analysis: “influence of organisational culture”; “influence of the individual” and “learning and development solutions”. The findings outlined the desire for creative solutions which identify and facilitate individual learning and development needs within the constraints of limited resources and overall expectations of the role. One approach may be a partnership where knowledge and expertise within the organisation is valued, utilised and shared across directorates. As individuals learn in different ways, various formats may include face to face, self directed, online and blended approaches. (Dr Joanne Reid and Prof Sam Porter) Update from All Ireland Institute of Hospice and Palliative Care (Dr Clare White and Prof Max Watson) An Exploration of the Decision Process between the Primary Care Team and Patients and Families Receiving Palliative Care. The All Ireland Institute of Hospice and Palliative Care (AIIHPC) and the Irish Cancer Society have announced a Post Doctoral Fellowship in Palliative Care worth up to €200,000 (£169,000) for a period of two years. The successful research project should have a clearly demonstrated impact on care for patients with life limiting illnesses and their families. The fellowship is open to untenured postdoctoral researchers and researchers working in life, health or social sciences. The closing date for applications is Friday 28 February 2014; and further information, guidelines and application form are available via www.aiihpc.org/research. (Paula Brogan) Chaplaincy and Spirituality in Hospices (Rev. Caroline McAfee and Prof. George Kernohan) Have Your Say – help shape the future of palliative and end of life care research. The palliative and end of life care Priority Setting Partnership, initiated by Marie Curie, brings together a large number of organisations, including AIIHPC, interested in palliative and end of life care research. Its aim is to bring patients, carers and health care professionals together to identify and prioritise research questions in order to influence the prioritisation of future research. All you need to do is complete a short on-line survey at www.palliativecarePSP.org.uk, which should take no longer than 10 minutes to complete. If you have any queries regarding this please do not hesitate to contact Dr Tara Murphy, Programme Manager for research AIIHPC at [email protected]. 3 Other News and Events Have you any research ideas? Would you like to become involved in research? Northern Ireland Hospice Courses 2014 If you have a research idea arising from your work, we can provide you with advice, support and assistance with securing funding. For a Research Ideas form please go to the Education & Research section at www.nihospice.org Future Events th Focused Abdominal Sonography in Palliative Care (FASP) 10 Palliative Care Congress Harrogate International Centre, England, 12-14 March 2014 www.pccongress.org.uk Saturday 1 & Sunday 2 March £400 Marie Curie Cancer Care Annual Research Conference (with the Palliative Care Section of the Royal Society of Medicine) London, 28 March 2014. www.mariecurie.org.uk/en-GB/research/marie-curie-annual-researchconference/ European Certificate in Essential Palliative Care 9 th National Conference Current Issues in Palliative Care London, 8-9 May 2014 www.mahealthcareevents.co.uk/palliative2014 8-Week Distance Learning Programme Commencing Monday 14 April £450 Managing Bereavement in Schools Friday 13 June £70 th St Francis Hospice 13 Annual Kaleidoscope International Palliative Care Conference Dublin Castle, Dublin, 28-19 May 2014 www.sfh.ie/kaleidoscope 8 th World Research Congress of the EAPC Lleida, Spain, 5-7 June 2014 http://www.eapcnet.eu/research2014/ th 20 International Congress on Palliative Care Montreal, Canada, 9-12 September 2014 www.palliativecare.ca/ Recent Publications Ward, S and Watson, M (2013). Essential features of e-prescribing in hospices: the views of end-users. European Journal of Palliative Care, 2013 20 (6) pg 283 – 285. Newsletter complied by Tracey McTernaghan 4