title: Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.
abstract: BACKGROUND
  Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers.
  
  
  OBJECTIVE
  To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings.
  
  
  METHODS
  Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework.
  
  
  METHODS
  Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia.
  
  
  RESULTS
  Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired.
  
  
  CONCLUSIONS
  While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.
authors.affiliation: 1 Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia.|2 Department of Medicine, The University of Melbourne, Parkville, VIC, Australia.
authors.forename: Anna
authors.initials: A
authors.lastname: Collins
authors.affiliation: 2 Department of Medicine, The University of Melbourne, Parkville, VIC, Australia.|3 Medical Oncology, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia.
authors.forename: Sue-Anne
authors.initials: SA
authors.lastname: McLachlan
authors.affiliation: 1 Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia.|2 Department of Medicine, The University of Melbourne, Parkville, VIC, Australia.|4 Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Philip
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000379:methods* / Q000523:psychology*; D017060:Patient Satisfaction; D011446:Prospective Studies; D036301:Qualitative Research
keywords: Qualitative research; attitude; cancer; caregiver; palliative care; patient; perception