Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-10T10:22:27.723Z Has data issue: false hasContentIssue false
  • English
  • Français

An examination of the research priorities for a hospice service in New Zealand: A Delphi study

Published online by Cambridge University Press:  16 June 2015

Kay de Vries ,
Jo Walton ,
Katherine Nelson  and
Rhondda Knox
Kay de Vries*
Affiliation:
The University of Brighton, Westlain House, Brighton, United Kingdom
Jo Walton
Affiliation:
Victoria University of Wellington, Wellington, New Zealand
Katherine Nelson
Affiliation:
Graduate School of Nursing Midwifery & Health, Victoria University of Wellington, Wellington, New Zealand
Rhondda Knox
Affiliation:
Independent Management Consultant-Health and Public Sector, Wellington, New Zealand
*
Address correspondence and reprint requests to: Kay De Vries, University of Brighton, School of Health Sciences, Westlain House, Falmer, Brighton, East Sussex, United Kingdom, BN1 9P. E-mail: l.k.devries@brighton.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives:

Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.

Methods:

A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.

Results:

At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.

Significance of results:

The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

Keywords

Research prioritiesPalliative careHospice staff and volunteersFamily membersDelphi technique
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 3 , June 2016 , pp. 232 - 240
Copyright
Copyright © Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Bennett, M.I., Davies, E.A. & Higginson, I.J. (2010). Delivering research in end-of-life care: Problems, pitfalls and future priorities. Palliative Medicine, 24, 456–461.Google Scholar
Berry, S.R. (2004). For purposes of research, palliative care patients should not be considered a vulnerable population. Clinical Oncology, 16, 223–224.Google Scholar
Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O. & Alberti, C. (2011). Using and reporting the Delphi Method for selecting healthcare quality indicators: A systematic review. PLoS ONE, 6, e20476.Google Scholar
Braithwaite, M., Philip, J., Finlayson, F., Tranberg, H., Gold, M., Kotsimbos, T. & Wilson, J. (2009) Adverse events arising from a palliative care survey. Palliative Medicine, 23, 665–669.Google Scholar
Currow, D.C., Agar, M.R. & Abernethy, A.P. (2011). Tackling the challenges of clinical trials in palliative care. Pharmaceutical Medicine, 25, 7–15.CrossRefGoogle Scholar
Daveson, B.A., Harding, R., Vanden Berghe, P., Edwards, S. & Higginson, IJ. on behalf of PRISMA. (2011). The PRISMA Symposium 4: How should Europe progress end-of-life and palliative clinical care research? Recommendations from the proceedings. Journal of Pain and Symptom Management, 42, 511–516.Google Scholar
de Raeve, L. (1994) Ethical issues in palliative care research. Palliative Medicine, 8, 298–305 Google Scholar
Duke, S. & Bennett, H. (2010). A narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance. Palliative Medicine, 24, 111–126.Google Scholar
Fenwick, J., Butt, J., Downie, J., Monterosso, L. & Wood, J. (2006). Priorities for midwifery research in Perth, Western Australia: A Delphi study. International Journal of Nursing Practice, 12, 78–93.Google Scholar
Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., Payne, S. & Todd, C. (2009). Supporting lay carers in end of life care: current gaps and future priorities. Palliative Medicine, 23, 339–344.CrossRefGoogle ScholarPubMed
Hagen, N.A., Addington-Hall, J., Sharpe, M., Richardson, A. & Cleeland, C.S. (2006). The Birmingham International Workshop on supportive, palliative and end-of-life care research. Cancer, 107, 874–881.Google Scholar
Henderson, M., Addington-Hall, J.M. & Hotopf, M. (2005). The willingness of palliative care patients to participate in research. Journal of Pain & Symptom Management, 29, 116–118.Google Scholar
Higginson, I.J. & Booth, S. (2011). The randomized fast-track trial in palliative care: Role, utility and ethics in the evaluation of interventions in palliative care? Palliative Medicine, 25, 741–747.Google Scholar
Hudson, P. & Payne, S. (2011). Family caregivers and palliative care: Current status and agenda for the future. Journal of Palliative Medicine, 14, 864–869.Google Scholar
Hudson, P., Zordan, R. & Trauer, T. (2011). Research priorities associated with family caregivers in palliative care: International perspectives. Journal of Palliative Medicine, 14, 1–5.Google Scholar
Hudson, P.L., Remedios, C. & Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9, 17.Google Scholar
Kaasa, S. & De Conno, F. (2001). Palliative care research. European Journal of Cancer, 37, 153–159.CrossRefGoogle ScholarPubMed
Kaasa, S., Hjermstad, M.J. & Loge, J.H. (2006). Methodological and structural challenges in palliative care research: How have we fared in the last decades? Palliative Medicine, 20, 727–734.Google Scholar
Kaasa, S. & Radbruch, L. (2008). Palliative care research – Priorities and the way forward. European Journal of Cancer, 44, 1175–1179.Google Scholar
Kramer, B.J., Bern- Klug, M. & Francoeur, R.B. (2005). A national agenda for social work research in palliative and end-of-life care. Journal of Palliative Medicine, 8, 418–431.CrossRefGoogle ScholarPubMed
Malcolm, C., Forbat, L., Knighting, K. & Kearney, N. (2008). Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care. Palliative Medicine, 22, 921–928.Google Scholar
Malcolm, C., Forbat, L., Knighting, K. & Kearney, N. (2009). Prioritisation of future research topics for children's hospice care by its key stakeholders: A Delphi study. Palliative Medicine, 23, 398–405.CrossRefGoogle ScholarPubMed
Pautex, S., Herrmann, F.R. & Zulian, G.B. (2005). Is research really problematic in palliative care? A pilot study. Journal of Pain and Symptom Management, 30, 109–111.CrossRefGoogle ScholarPubMed
Perkins, P., Barclay, S. & Booth, S. (2007). What are patients’ priorities for palliative care research? Palliative Medicine, 21, 219–225.Google Scholar
Perkins, P., Booth, S., Vowler, S.L. & Barclay, S. (2008). What are patients' priorities for palliative care research? A questionnaire study. Palliative Medicine, 22, 7–12.Google Scholar
Ross, C. & Cornbleet, M. (2003). Attitudes of patients and staff to research in a specialist palliative care unit. Palliative Medicine, 17, 491–497.CrossRefGoogle Scholar
Rudolph, S., Hiscock, H., Price, A., Efron, D., Sewell, J., South, M. & Wake, M. (2009). What research questions matter to Australian paediatricians? National Delphi Study. Journal of Paediatrics and Child Health, 45, 704–710.Google Scholar
Sigurdardottir, K.R., Haugen, D.F., van der Rijt, C.C.D., Sjøgren, P., Harding, R., Higginson, I.J. & Kaasa, S. on behalf of project PRISMA. (2010). Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe: Report from a workshop. European Journal of Cancer, 46, 1815–1822.Google Scholar
Steele, R., Bosma, H., Johnston, M.F., Cadell, S., Davies, B., Siden, U.H. & Straatman, L. (2008). Research priorities in pediatric palliative care: A Delphi study. Journal of Palliative Care, 24, 229–287.Google Scholar
Terry, W., Olson, L.G., Ravenscroft, P., Wilss, L. & Boulton-Lewis, G. (2006). Hospice patients’ views on research in palliative care. Internal Medicine Journal, 36, 406–413.Google Scholar
Tieman, J.J., Sladek, R.M. & Currow, D.C. (2009). Department multiple sources: Mapping the literature of palliative care. Palliative Medicine, 23, 425–431.Google Scholar
Tolley, D.C. & Payne, R. (2008). Hospice partnerships with academic entities: Philosophical and historical background and assessment of future needs. Palliative Medicine, 22, 921–928.Google Scholar
White, C., Gilshenan, K. & Hardy, J. (2008). A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care. Supportive Care in Cancer, 16, 1397–1405.Google Scholar
White, C. & Hardy, J. (2010). What do palliative care patients and their relatives think about research in palliative care? A systematic review. Supportive Care in Cancer, 18, 905–911.Google Scholar
Whiting, L.S. & Vicker, P.S. (2010). Conducting qualitative research with palliative care patients: Applying Hammick's research ethics wheel. International Journal of Palliative Nursing, 16, 58–68.CrossRefGoogle Scholar
Wilson, S., Ramelet, A. & Zuiderduyn, S. (2010). Research priorities for nursing care of infants, children and adolescents: A West Australian Delphi study. Journal of Clinical Nursing, 19, 1919–1928.Google Scholar