Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-27T12:42:44.843Z Has data issue: false hasContentIssue false
  • English
  • Français

Perceptions of the care received from Australian palliative care services: A caregiver perspective

Published online by Cambridge University Press:  30 March 2017

Tanya M. Pidgeon ,
Claire E. Johnson ,
Leanne Lester ,
David Currow ,
Patsy Yates ,
Samuel F. Allingham ,
Sonia Bird  and
Kathy Eagar
Tanya M. Pidgeon*
Affiliation:
Cancer and Palliative Care Research and Evaluation Unit, School of Medicine, The University of Western Australia, Nedlands, Western Australia, Australia Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Claire E. Johnson
Affiliation:
Cancer and Palliative Care Research and Evaluation Unit, School of Medicine, The University of Western Australia, Nedlands, Western Australia, Australia Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Leanne Lester
Affiliation:
Health Promotion Evaluation Unit, School of Sports Science, Exercise, and Health, The University of Western Australia, Perth, Western Australia, Australia
David Currow
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia Discipline of Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia
Patsy Yates
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
Samuel F. Allingham
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Sonia Bird
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
Kathy Eagar
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
*
Address correspondence and reprint requests to: Tanya M. Pidgeon, Palliative Care Outcomes Collaboration, Cancer and Palliative Care Research and Evaluation Unit, School of Medicine, The University of Western Australia, Level 2, M Block, QE11 Medical Centre, Nedlands, Western Australia 6009. E-Mail: tanya.pidgeon@uwa.edu.au.
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.

Objective:

Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.

Method:

Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.

Results:

Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).

Significance of Results:

While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Keywords

CarerCaregiver satisfactionPalliative careFAMCARE–2Multisite study
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 2 , April 2018 , pp. 198 - 208
Copyright
Copyright © Cambridge University Press 2017 

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

Abernethy, A.P., Currow, D.C., Fazekas, B.S., et al. (2008). Specialized palliative care services are associated with improved short- and long-term caregiver outcomes. Supportive Care in Cancer, 16(6), 585–597. Epub ahead of print Oct 25, 2007. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413096/.CrossRefGoogle Scholar
Adams, M. (2005). Patient and carer satisfaction with palliative care services: A review of the literature. Journal for Community Nurses, 10(2), 11–14.Google Scholar
Aoun, S., Bird, S., Kristjanson, L.J., et al. (2010). Reliability testing of the FAMCARE–2 scale: Measuring family carer satisfaction with palliative care. Palliative Medicine, 24(7), 674–681. Epub ahead of print Jul 9.CrossRefGoogle ScholarPubMed
Australian Commission on Safety and Quality in Healthcare (2012). Review of Patient Experience and Satisfaction Surveys Conducted Within Public and Private Hospitals in Australia. Canberra: ACSQHC. Available from http://www.safetyandquality.gov.au/wp-content/uploads/2012/03/Review-of-Hospital-Patient-Experience-Surveys-conducted-by-Australian-Hospitals-30-March-2012-FINAL.pdf.Google Scholar
Australian Government, Australian Bureau of Statistics (2011). 4102.0: Australian Social Trends: Health Outside Major Cities. Canberra: Australian Bureau of Statistics. Available from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features30Mar+2011.Google Scholar
Australian Health Ethics Committee (2003). When Does Quality Assurance in Health Care Require Independent Ethical Review? Advice to Institutions, Human Research Ethics Committees and Health Care Professionals. Canberra: National Health & Medical Research Council. Available from https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e46.pdf.Google Scholar
Australian Institute of Health and Welfare (AIHW) (2014). Palliative Care Services in Australia 2014. Canberra: Australian Institute of Health and Welfare. Available from http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129548892.Google Scholar
Brazil, K., Kaasalainen, S., Williams, A., et al. (2014). A comparison of support needs between rural and urban family caregivers providing palliative care. The American Journal of Hospice & Palliative Care, 31(1), 13–19. Epub ahead of print Jan 22, 2013.CrossRefGoogle Scholar
Carter, G.L., Lewin, T.J., Gianacas, L., et al. (2011). Caregiver satisfaction with outpatient oncology services: Utility of the FAMCARE instrument and development of the FAMCARE–6. Supportive Care in Cancer, 19(4), 565–572. Epub ahead of print Mar 28, 2010.CrossRefGoogle ScholarPubMed
Centre for Health Service Development (2014). Screening and Assessment Tools. Wollongong: University of Wollongong Press. Available from http://ahsri.uow.edu.au/screening.html.Google Scholar
Choi, J.Y., Chang, Y.J., Song, H.Y., et al. (2013). Factors that affect quality of dying and death in terminal cancer patients on inpatient palliative care units: Perspectives of bereaved family caregivers. Journal of Pain and Symptom Management, 45(4), 735–745. Epub ahead of print Oct 25, 2012. Available from http://www.jpsmjournal.com/article/S0885-3924(12)00400-9/pdf.CrossRefGoogle ScholarPubMed
Currow, D.C. (2015). Caregivers' three-cornered hats: Their tricornes. Palliative Medicine, 29(6), 485–486. Available from http://journals.sagepub.com/doi/pdf/10.1177/0269216315584243.CrossRefGoogle ScholarPubMed
Dy, S.M., Shugarman, L.R., Lorenz, K.A., et al. (2008). A systematic review of satisfaction with care at the end of life. Journal of the American Geriatrics Society, 56(1), 124–129. Epub ahead of print Nov 20, 2007.CrossRefGoogle ScholarPubMed
Eagar, K. & Owen, A. (2002).Ongoing Needs Identification in NSW Primary Health and Community Care: How and Why. Wollongong: University of Wollongong, Centre for Health Service Development. Available from https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow082281.pdf.Google Scholar
Girgis, A., Lambert, S., Johnson, C., et al. (2013). Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. Journal of Oncology Practice, 9(4), 197–202. Epub ahead of print Dec 4, 2012. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710169/.CrossRefGoogle ScholarPubMed
Grunfeld, E., Folkes, A. & Urquhart, R. (2008). Do available questionnaires measure the communication factors that patients and families consider important at end of life? Journal of Clinical Oncology, 26(23), 3874–3878. Available from http://ascopubs.org/doi/10.1200/JCO.2007.15.8006.CrossRefGoogle ScholarPubMed
Hudson, P.L., Zordan, R. & Trauer, T. (2011). Research priorities associated with family caregivers in palliative care: International perspectives. Journal of Palliative Medicine, 14(4), 397–401. Epub ahead of print Mar 4.CrossRefGoogle ScholarPubMed
International Palliative Care Family Carer Research Collaboration (2016). About the International Palliative Care Family Carer Research Collaboration: Background. Fitzroy, Victoria: International Palliative Care Family Carer Research Collaboration. Available from http://www.eapcnet.eu/LinkClick.aspx?fileticket=WXHeRpC63dU%3D&tabid=386&mid=1198.Google Scholar
Kristjanson, L.J. (1993). Validity and reliability testing of the FAMCARE Scale: Measuring family satisfaction with advanced cancer care. Social Science & Medicine, 36(5), 693–701.CrossRefGoogle ScholarPubMed
Kristjanson, L.J. & Aoun, S. (2004). Palliative care for families: Remembering the hidden patients. The Canadian Journal of Psychiatry, 49(6), 359–365.CrossRefGoogle ScholarPubMed
McIlfatrick, S. (2007). Assessing palliative care needs: Views of patients, informal carers and healthcare professionals. Journal of Advanced Nursing, 57(1), 77–86.CrossRefGoogle ScholarPubMed
Medigovich, K., Porock, D., Janson, L.J., et al. (1999). Predictors of family satisfaction with an Australian palliative home care service: A test of discrepancy theory. Journal of Palliative Care, 15(4), 48–56.CrossRefGoogle ScholarPubMed
Navaie-Waliser, M., Feldman, P.H., Gould, D.A., et al. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447090/.CrossRefGoogle ScholarPubMed
Nicholas, E. (2003). An outcomes focus in carer assessment and review: Value and challenge. The British Journal of Social Work, 33(1), 31–47.CrossRefGoogle Scholar
Palliative Care Outcomes Collaboration (PCOC) (2015) About the Palliative Care Outcomes Collaboration. Wollongong: University of Wollongong, Palliative Care Outcomes Collaboration. Available from http://ahsri.uow.edu.au/pcoc/about/index.html.Google Scholar
Pidgeon, T., Johnson, C.E., Currow, D., et al. (2015). A survey of patients' experience of pain and other symptoms while receiving care from palliative care services. BMJ Supportive & Palliative Care, 6(3), 315–322. Epub ahead of print Mar 5.CrossRefGoogle ScholarPubMed
Rabow, M.W., Hauser, J.M. & Adams, J. (2004). Supporting family caregivers at the end of life: They don't know what they don't know. The Journal of the American Medical Association, 291(4), 483–491. Available from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.562.3268&rep=rep1&type=pdf.CrossRefGoogle ScholarPubMed
Ray, R.A., Fried, O. & Lindsay, D. (2014). Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations. BMC Health Services Research, 14, 272. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4085715/pdf/1472-6963-14-272.pdf.CrossRefGoogle ScholarPubMed
Ringdal, G.I., Jordhøy, M.S. & Kaasa, S. (2002). Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. Journal of Pain and Symptom Management, 24(1), 53–63.CrossRefGoogle Scholar
Ringdal, G.I., Jordhøy, M.S. & Kaasa, S. (2003). Measuring quality of palliative care: Psychometric properties of the FAMCARE Scale. Quality of Life Research, 12(2), 167–176.CrossRefGoogle ScholarPubMed
Roza, K.A., Lee, E.J., Meier, D.E., et al. (2015). A survey of bereaved family members to assess quality of care on a palliative care unit. Journal of Palliative Medicine, 18(4), 358–365.CrossRefGoogle ScholarPubMed
Swerissen, H. & Duckett, S. (2014). Dying Well. Canberra: Grattan Institute.Google Scholar
Teno, J.M. (2002). Palliative care teams. Self-reflection: Past, present, and future. Journal of Pain and Symptom Management, 23(2), 94–95. Available from http://www.jpsmjournal.com/article/S0885-3924(01)00394-3/pdf.CrossRefGoogle ScholarPubMed
Wilkes, L., White, K. & O'Riordan, L. (2000). Empowerment through information: Supporting rural families of oncology patients in palliative care. The Australian Journal of Rural Health, 8(1), 41–46.CrossRefGoogle ScholarPubMed