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Mapping palliative and end of care research in Australia (2000–2018)

Published online by Cambridge University Press:  20 January 2020

H. Khalil Open the ORCID record for H. Khalil [Opens in a new window] ,
A. Downie  and
E. Ristevski
H. Khalil*
Affiliation:
School of Psychology and Public Health, Department of Public Health, La Trobe University, Collins Street, Melbourne, VIC3000, Australia
A. Downie
Affiliation:
Monash University, Monash Rural Health, Warragul, VIC3825, Australia
E. Ristevski
Affiliation:
Monash University, Monash Rural Health, Warragul, VIC3825, Australia
*
Author for correspondence: Hanan Khalil, Associate Professor, School of Psychology and Public Health, Department of Public Health, La Trobe University, Collins Street, Melbourne, VIC3000, Australia. E-mail: h.khalil@latrobe.edu.au
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Abstract

Objective

The objective of this study is to map the existent research undertaken in Australia into broad thematic areas and identify the characteristics of the studies and areas of future research in the literature.

Methods

A scoping review methodology was employed to map the current areas of research undertaken in Australia since January 2000 until the end of December 2018 according to years of publications, types of studies, populations studied, research themes, and areas of focus.

Results

Our review identified 1,405 Australian palliative care research publications between January 2000 and December 2018. Nearly 40% of the studies were quantitative (39%) and a third were qualitative studies (31%). The remainder of the studies were reviews, mixed methods, quality improvement projects, and others. One-third (30%) of the research was done with carers' participants followed by nurses (22%) and doctors and physicians (18%). The most frequently reported diagnosis in the studies was cancer with 42% of the publication total. The most frequently explored theme was physical symptoms (such as pain, breathlessness, nausea, delirium, and dyspnea) with a total of 16% of all articles followed by communication (15%). There was a large gap to the next most frequently explored theme with service delivery (9%) and coordination of care (8%). Assessment of patients (7%), end-of-life decision-making (6%), and rural/regional (6%) all produced a similar number of publications. Very few studies addressed topics such as quality of life, E-Health, after-hours care, spirituality, and health economics. Moreover, there were only 15 (1%) studies focused on the last days of life.

Significance of the results

The current review presented a comprehensive search of the literature across almost two decades in Australia in the palliative care setting. It has covered a breadth of research topics and highlighted urgent areas for further research.

Keywords

End of lifePalliative careScoping review
Type
Review Article
Information
Palliative & Supportive Care , Volume 18 , Issue 6 , December 2020 , pp. 713 - 721
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Copyright
Copyright © Cambridge University Press 2020

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References

Australian Bureau of Statistics (2018) Australian Statistical Geography Standard (ASGS). Canberra, ACT, Australia: Australian Bureau of Statistics. Available at: http://www.abs.gov.au/websitedbs/D3310114.nsf/home/Australian±Statistical±Geography±Standard±(ASGS) (accessed 1 November 2019).Google Scholar
Australian Department of Health and Ageing and National Health and Medical Research Council (2006) Guidelines for a Palliative Approach in Residential Aged Care — Enhanced Version. Canberra, ACT: Commonwealth of Australia.Google Scholar
Australian Government Department of Health 2018 National Palliative Care Strategy (2018) Available at: https://www.health.gov.au/sites/default/files/national-palliative-care-strategy-2018.pdf7.Google Scholar
Australian Institute of Health and Welfare (AIHW) (2016) Australia's health: End-of-life care Australia's health series no.15. Cat. no. Australia 199, Canberra. Retrieved from: https://www.aihw.gov.au/getmedia/9844cefb-7745-4dd8-9ee2-f4d1c3d6a727/19787-AH16.pdf.aspx.Google Scholar
Australian Institute of Health and Welfare (2019) Deaths in Australia. Available at: https://www.aihw.gov.au/reports/lifeexpectancy-death/deaths-in-australia/contents/age-at-death.Google Scholar
Beardsley, C, Brown, K and Sandroussi, C (2018) Euthanasia and surgeons: An overview of the Victorian Voluntary Assisted Dying Act 2017 and its relevance to surgical practice in Australia. ANZ Journal of Surgery 88(10), 956–958.10.1111/ans.14513CrossRefGoogle ScholarPubMed
Brettell, R, Fisher, R, Hunt, H, et al. (2019) Out-of-hours primary care end of life prescribing: A data linkage study. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2019-001784Google ScholarPubMed
Cheong, WL, Mohan, D, Warren, N, et al. (2019) Accessing palliative care for multiple sclerosis: A qualitative study of a neglected neurological disease. Multiple Sclerosis and Related Disorders 35, 86–91.10.1016/j.msard.2019.07.009CrossRefGoogle ScholarPubMed
Clark, J, Gardiner, C and Barnes, A (2018) International palliative care research in the context of global development: A systematic mapping review. BMJ Supportive & Palliative Care 8(1), 7–18.10.1136/bmjspcare-2015-001008CrossRefGoogle ScholarPubMed
Currow, DC, Allingham, S, Yates, P, et al. (2015) Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Supportive Care in Cancer 23(2), 307–315.10.1007/s00520-014-2351-8CrossRefGoogle ScholarPubMed
DoH (Department of Health) (2018a) Palliative Care and Planning for End-of-Life Care. Canberra: Department of Health (viewed 25 November 2019).Google Scholar
DoH (2018b) National Palliative Care Strategy 2018. Canberra: Department of Health (viewed 25 November 2019).Google Scholar
Dong, ST, Butow, PN, Tong, A, et al. (2016) Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: A semi-structured interview study. Supportive Care in Cancer 24(3), 1373–1386.10.1007/s00520-015-2913-4CrossRefGoogle ScholarPubMed
Dredge, A, Oates, L, Gregory, H, et al. (2017) Effective change management within an Australian community palliative care service. British Journal of Community Nursing 22(11), 536–541.10.12968/bjcn.2017.22.11.536CrossRefGoogle ScholarPubMed
Duckett, S (2018) Aligning policy objectives and payment design in palliative care. BMC Palliative Care 17, 42.10.1186/s12904-018-0294-4CrossRefGoogle ScholarPubMed
Eagar, K, Cranny, C and Fildes, D (2004) Evaluation and palliative care: A guide to the evaluation of palliative care services and programs.Google Scholar
Eagar, K, Watters, P, Currow, DC, et al. (2010) The Australian Palliative Care Outcomes Collaboration (PCOC) — Measuring the quality and outcomes of palliative care on a routine basis. Australian Health Review 34(2), 186–192.CrossRefGoogle ScholarPubMed
Ewing, G, Rogers, M, Barclay, S, et al. (2004) Recruiting patients into a primary care based study of palliative care: Why is it so difficult? Palliative Medicine 18(5), 452–459.10.1191/0269216304pm905oaCrossRefGoogle ScholarPubMed
Finucane, AM, Carduff, E, Lugton, J, et al. (2018) Palliative and end-of-life care research in Scotland 2006–2015: A systematic scoping review. BMC Palliative Care 17(1), 19.CrossRefGoogle ScholarPubMed
Henoch, I, Carlander, I, Holm, M, et al. (2016) Palliative care research — A systematic review of foci, designs and methods of research conducted in Sweden between 2007 and 2012. Scandinavian Journal of Caring Sciences 30(1), 5–25.CrossRefGoogle ScholarPubMed
Johnston, B, Nimmo, S, Baughan, P, et al. (2006) A Scoping Review of Palliative Care in Scotland. Final Report. Cancer Care Research Centre. Available at: https://www.palliativecarescotland.org.uk/content/publications/1347299403_A-Scoping-Review-of-Palliative-Care.pdf.Google Scholar
Khalil, H and Ristevski, E (2018) The challenges of evidence-based palliative care research. International Journal of Evidence-Based Health Care 16(3), 136–137.10.1097/XEB.0000000000000153CrossRefGoogle ScholarPubMed
Khalil, H, Peters, M, Godfrey, CM, McInerney, P and Soares, CB (2016) An evidence-based approach to scoping reviews. Worldviews on Evidence-Based Nursing 13(2), 118–23.10.1111/wvn.12144CrossRefGoogle ScholarPubMed
Khalil, H, Poon, P, Byrne, A, et al. (2019) Challenges associated with anticipatory medications in rural and remote settings. Journal of Palliative Medicine 22(3), 297–301.10.1089/jpm.2018.0354CrossRefGoogle ScholarPubMed
Lee, S and Kristjanson, L (2003) Human research ethics committees: Issues in palliative care research. International Journal of Palliative Nursing 9(1), 13–8.CrossRefGoogle ScholarPubMed
Lewis, S, Tieman, J, Damarell, R, et al. (2018) Integrated care search: Fast and reliable access to integrated care research. International Journal of Integrated Care 18, s1.10.5334/ijic.s1095CrossRefGoogle Scholar
Masso, M, Dodds, S, Fildes, D, et al. (2004) Ethical Research in Palliative Care: A Guide Through the Human Research Ethics Committee Process. Sydney, NSW, Australia: Centre for Health Service Development, University of Wollongong.Google Scholar
McDermott, CL, Engelberg, RA, Woo, C, et al. (2019) Novel data linkages to characterize palliative and end-of-life care: Challenges and considerations. Journal of Pain and Symptom Management 58(5), 851–856.CrossRefGoogle ScholarPubMed
McIlfatrick, S and Murphy, T (2013) Palliative care research on the island of Ireland over the last decade: A systematic review and thematic analysis of peer reviewed publications. BMC Palliative Care 12(1), 33.10.1186/1472-684X-12-33CrossRefGoogle ScholarPubMed
McIlfatrick, S, Muldrew, DH, Hasson, F, et al. (2018) Examining palliative and end of life care research in Ireland within a global context: A systematic mapping review of the evidence. BMC Palliative Care 17(1), 109.10.1186/s12904-018-0364-7CrossRefGoogle Scholar
Mitchell, GK (2011) Palliative care in Australia. The Ochsner Journal 11(4), 334.Google ScholarPubMed
Moher, D, Liberati, A, Tetzlaff, J, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. Annals of Internal Medicine 151(4), 264–269.10.7326/0003-4819-151-4-200908180-00135CrossRefGoogle ScholarPubMed
Olson, RE (2014) Indefinite loss: The experiences of carers of a spouse with cancer. European Journal of Cancer Care 23(4), 553–561.10.1111/ecc.12175CrossRefGoogle ScholarPubMed
Palliative Care Outcome Collaboration (PCOC) (2018) Data Set and Data Collection. Australian Government Department of Health. Retrieved from: https://ahsri.uow.edu.au/pcoc/dataset/index.html.Google Scholar
Payne, SA and Turner, JM (2008) Research methodologies in palliative care: A bibliometric analysis. Palliative Medicine 22(4), 336–342.10.1177/0269216308090072CrossRefGoogle ScholarPubMed
PCA (Palliative Care Australia) (2018a) Palliative Care Service Development Guidelines. Canberra: Palliative Care Australia.Google Scholar
PCA (Palliative Care Australia) (2018b) Palliative Care 2030 – Working Towards the Future of Quality Palliative Care for All. Canberra: PCA.Google Scholar
Peters, MD, Godfrey, CM, Khalil, H, et al. (2015) Guidance for conducting systematic scoping reviews. International Journal of Evidence-Based Healthcare 13(3), 141–146.10.1097/XEB.0000000000000050CrossRefGoogle ScholarPubMed
Productivity Commission (2017) Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services, Draft Report. Canberra: Productivity Commission.Google Scholar
Rhee, JY, Garralda, E, Torrado, C, et al. (2017) Palliative care in Africa: A scoping review from 2005–16. The Lancet Oncology 18(9), e522–e531.10.1016/S1470-2045(17)30420-5CrossRefGoogle ScholarPubMed
Salins, NS and Jansen, W (2011) Clinical audit on documentation of anticipatory “not for resuscitation” orders in a tertiary Australian teaching hospital. Indian Journal of Palliative Care 17(1), 42.10.4103/0973-1075.78448CrossRefGoogle Scholar
Senate Community Affairs References Committee (2012) Palliative Care in Australia. Report to the Senate, Australian Government. Canberra: Senate Community Affairs References Committee.Google Scholar
Sladek, RM and Tieman, J (2008). CareSearch: Supporting Knowledge Translation in Palliative Care.Google Scholar
Swerissen, H and Duckett, S (2014) Dying Well. Canberra, Australia: Grattan Institute.Google Scholar
Tan, T and Cheang, F (2016) A single-center retrospective analysis of interventions provided to geriatric inpatients receiving end-of-life care. Progress in Palliative Care 24(6), 332–338.CrossRefGoogle Scholar
The Economist Intelligence Unit (2015). Quality of Death Index. Available at: http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015 (accessed 1 November 2019).Google Scholar
Waller, A, Dodd, N, Tattersall, MH, et al. (2017) Improving hospital-based end of life care processes and outcomes: A systematic review of research output, quality and effectiveness. BMC Palliative Care 16(1), 34.10.1186/s12904-017-0204-1CrossRefGoogle ScholarPubMed
WHA (2014) Strengthening of Palliative Care as a Component of Integrated Treatment Within the Continuum of Care. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf (accessed 1 November 2019).Google Scholar
WHO (World Health Organization) (2014) Global Atlas of Palliative Care at the End of Life. Geneva: WHO.Google Scholar
Wohleber, AM, McKitrick, DS and Davis, SE (2012) Designing research with hospice and palliative care populations. American Journal of Hospice and Palliative Medicine 29(5), 335–345.10.1177/1049909111427139CrossRefGoogle ScholarPubMed
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