title: Uncovering an invisible network of direct caregivers at the end of life: a population study.
abstract: BACKGROUND
  Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.
  
  
  OBJECTIVE
  This population study aims to define the people who actually provide care at the end of life.
  
  
  METHODS
  A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and 'expected' death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.
  
  
  RESULTS
  People of all ages indicated they provided 'hands on' care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.
  
  
  CONCLUSIONS
  This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on 'next-of-kin' status in research will not identify them.
authors.affiliation: School of Humanities and Social Sciences, University of Newcastle, Newcastle upon Tyne, UK. Catherine.Burns@flinders.edu.au
authors.forename: Catherine M
authors.initials: CM
authors.lastname: Burns
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
authors.forename: Eleanora
authors.initials: E
authors.lastname: Dal Grande
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D017028:Caregivers / Q000706:statistics & numerical data*; D019058:Community Networks / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000706:statistics & numerical data*; D055815:Young Adult
keywords: Palliative care; caregivers; community networks