title: Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure.
abstract: BACKGROUND
  Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care.
  
  
  METHODS
  Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework.
  
  
  RESULTS
  Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom.
  
  
  CONCLUSIONS
  Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms.
authors.affiliation: General Practice and Primary Care, Institute of Health and Wellbeing MVLS, University of Glasgow, Glasgow, United Kingdom.
authors.forename: Susan
authors.initials: S
authors.lastname: Browne
authors.affiliation: General Practice and Primary Care, Institute of Health and Wellbeing MVLS, University of Glasgow, Glasgow, United Kingdom.
authors.forename: Sara
authors.initials: S
authors.lastname: Macdonald
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, England, United Kingdom.
authors.forename: Carl R
authors.initials: CR
authors.lastname: May
authors.affiliation: Hull York Medical School, University of Hull, Hull, United Kingdom.
authors.forename: Una
authors.initials: U
authors.lastname: Macleod
authors.affiliation: General Practice and Primary Care, Institute of Health and Wellbeing MVLS, University of Glasgow, Glasgow, United Kingdom.
authors.forename: Frances S
authors.initials: FS
authors.lastname: Mair
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000458:organization & administration / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006333:Heart Failure / Q000523:psychology* / Q000628:therapy; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000191:economics / Q000458:organization & administration / Q000523:psychology*; D036301:Qualitative Research; D011787:Quality of Health Care / Q000191:economics / Q000458:organization & administration*; D006113:United Kingdom