title: Perceptions of the care received from Australian palliative care services: A caregiver perspective.
abstract: ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.
  
  
  
  Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.
  
  
  
  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.
  
  
  
  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).
  
  
  
  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.
authors.affiliation: Cancer and Palliative Care Research and Evaluation Unit,School of Medicine,The University of Western Australia,Nedlands,Western Australia,Australia.
authors.forename: Tanya M
authors.initials: TM
authors.lastname: Pidgeon
authors.affiliation: Cancer and Palliative Care Research and Evaluation Unit,School of Medicine,The University of Western Australia,Nedlands,Western Australia,Australia.
authors.forename: Claire E
authors.initials: CE
authors.lastname: Johnson
authors.affiliation: Health Promotion Evaluation Unit,School of Sports Science, Exercise, and Health,The University of Western Australia,Perth,Western Australia,Australia.
authors.forename: Leanne
authors.initials: L
authors.lastname: Lester
authors.affiliation: Palliative Care Outcomes Collaboration,Australian Health Services Research Institute, University of Wollongong,Wollongong,New South Wales,Australia.
authors.forename: David
authors.initials: D
authors.lastname: Currow
authors.affiliation: Palliative Care Outcomes Collaboration,Australian Health Services Research Institute, University of Wollongong,Wollongong,New South Wales,Australia.
authors.forename: Patsy
authors.initials: P
authors.lastname: Yates
authors.affiliation: Palliative Care Outcomes Collaboration,Australian Health Services Research Institute, University of Wollongong,Wollongong,New South Wales,Australia.
authors.forename: Samuel F
authors.initials: SF
authors.lastname: Allingham
authors.affiliation: Palliative Care Outcomes Collaboration,Australian Health Services Research Institute, University of Wollongong,Wollongong,New South Wales,Australia.
authors.forename: Sonia
authors.initials: S
authors.lastname: Bird
authors.affiliation: Palliative Care Outcomes Collaboration,Australian Health Services Research Institute, University of Wollongong,Wollongong,New South Wales,Australia.
authors.forename: Kathy
authors.initials: K
authors.lastname: Eagar
mesh_terms: D000368:Aged; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000379:methods / Q000523:psychology / Q000592:standards*; D010465:Perception; D010549:Personal Satisfaction; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
keywords: Caregiver satisfaction; Carer; FAMCARE–2; Multisite study; Palliative care