title: 'No matter what the cost': A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context.
abstract: BACKGROUND
  There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life.
  
  
  OBJECTIVE
  To explore the nature and range of financial costs incurred by family caregiving within a palliative care context.
  
  
  METHODS
  In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels.
  
  
  METHODS
  Auckland, New Zealand.
  
  
  RESULTS
  Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited.
  
  
  CONCLUSIONS
  Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings.
authors: School of Nursing, The University of Auckland, Auckland, New Zealand m.gott@auckland.ac.nz.
authors: Merryn
authors: M
authors: Gott
authors: School of Nursing, The University of Auckland, Auckland, New Zealand.
authors: Ruth
authors: R
authors: Allen
authors: School of Nursing, The University of Auckland, Auckland, New Zealand.
authors: Tess
authors: T
authors: Moeke-Maxwell
authors: School of Nursing, The University of Auckland, Auckland, New Zealand.
authors: Clare
authors: C
authors: Gardiner
authors: School of Nursing, The University of Auckland, Auckland, New Zealand.
authors: Jackie
authors: J
authors: Robinson
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000191:economics*; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009520:New Zealand; D010166:Palliative Care / Q000191:economics*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000191:economics; D055815:Young Adult
keywords: Economic; cost; family; financial; indigenous; palliative