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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.
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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 

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