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Table 1 Characteristics of the deceased patients and respondents (bereaved carer) (unit: %, mean (s.d.))

From: Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

  London (N = 245) Ireland (N = 282) USA (N = 240) All (N = 767)
Bereaved carer
 Women (n = 749) 72.6% 67.9% 70.9% 70.4%
 Age (n = 738) 61.6(12.6) 59.2(13.7) 60.9(14.1) 60.5(13.5)
 Ethnicity (= 1 if white) (n = 725) 85.2% 100.0% 59.3% 82.5%
 Employment status (n = 730)
  Employed and paid 35.3% 43.6% 52.4% 43.7%
  Employed and unpaid 8.5% 13.6% 8.7% 10.4%
  Unemployed 8.9% 9.1% 6.5% 8.2%
  Retired 47.2% 33.7% 32.5% 37.7%
 Relationship (n = 742)
  Wife or female partner 22.1% 20.5% 27.4% 22.4%
  Husband or male partner 12.1% 11.9% 14.1% 12.3%
  Daughter 37.5% 38.4% 31.2% 34.7%
  Son 9.6% 16.0% 10.3% 11.7%
  Female other 8.8% 7.1% 8.6% 7.8%
  Male other 2.5% 4.5% 2.6% 3.1%
  Others 7.5% 1.5% 6.0% 4.7%
 Household income (n = 750)
  Living comfortably 31.0% 19.2% 45.4% 31.2%
  Doing alright 37.6% 44.3% 32.5% 38.5%
  Just about getting by 9.8% 16.3% 8.8% 11.9%
  Finding it quite difficult 9.4 10.6% 3.8% 8.1%
  Finding it very difficult 2.5% 0.7% 0.8% 1.3%
  Do not know 2.5% 2.5% 4.2% 3.0%
 Religious belief (= 1 if yes) (N = 729) 82.6% 92.6% 79.9% 85.5%
 ZARIT
  Burden1) (N = 734) 25.1(8.8) 23.6(9.4) 24.6(8.7) 24.4(9.0)
  Positive aspects of caregiving2) (N = 729) 29.2(6.9) 30.0(7.4) 30.7(6.7) 30.0(7.1)
 TRIG
  Past behaviour (N = 734) 20.5(8.9) 21.7(8.3) 20.1(7.4) 20.8(8.3)
  Subsequent feeling (N = 738) 3) 43.0(13.8) 44.7(13.1) 41.1(12.0) 43.0(13.1)
Patient
 Women 54.3% 51.4% 52.9% 52.8%
 Age (years) (n = 766) 79.7(8.3) 80.8(8.2) 78.5(9.1) 79.7(8.6)
  65–69 13.9% 12.8% 21.7% 15.9%
  70–79 36.3% 29.9% 32.9% 32.9%
  80–89 36.3% 41.6% 33.3% 37.3%
  90–102 13.5% 15.7% 12.1% 13.8%
 Diagnosis (n = 763)
  Lung and respiratory cancer 13.5% 11.4% 7.9% 11.0%
  Breast cancer 2.0% 3.9% 2.9% 3.0%
  Genitourinary cancer 12.7% 7.5% 5.8% 8.6%
  Lymphatic cancer 10.2% 5.7% 5.8% 7.2%
  Digestive cancer 12.2% 10.3% 12.1% 11.5%
  Ill-defined cancer 6.1% 3.9% 0% 3.4%
  Other cancer 2.9% 5.0% 4.2% 4.0%
  Non-cancer respiratory 7.4% 16.0% 9.2% 11.1%
  Non-cancer circulatory 14.7% 16.7% 26.3% 19.0%
  Non-cancer CNS4) 10.2% 7.1% 2.9% 6.8%
  Renal failure 1.2% 3.2% 6.7% 3.7%
  Other non-cancer4) 5.7% 9.2% 16.3% 10.3%
 Primary carer (= 1 if available) (n = 731) 87.6% 87.1% 92.2% 88.8%
 Living with (= 1 if yes) (n = 746) 61.4% 67.9% 75.2% 68.1%
 Religious belief (= 1 if religious) 88.1% 98.5% 84.6% 90.8%
 Number of carers (n = 731) 2.5(1.8) 3.0(2.0) 2.6(1.7) 2.7(1.9)
 Health and social care costs (USD) 15,756(15,036) 29,210(24,231) 37,327(37,234) 27,452(28,203)
  1. Twelve items had scales from 0 to 4 (0 never; 1 rarely; 2 sometimes; 3 quite frequently; 4 nearly always), and the range of total scores is 0 to 48. Higher score means more distressful burden
  2. Eight items had scales from 0 to 4 (0 never; 1 rarely; 2 sometimes; 3 quite frequently; 4 nearly always), and the range of total scores is 0 to 32. Higher score means more positive feeling about caregiving experience
  3. Revised Texas Revised Inventory of Grief. Past behaviour and subsequent grief sums 8 and 13 items respectively where each item was measured in Likert scale (1 completely true to 5 completely false). Higher scores are indicative of less psychological distress
  4. Non-cancer CNS included Alzheimer’s dementia, Parkinson’s related disorders, motor neurone disease, multiple sclerosis and other neurological diseases. Note that some people with dementia may have been coded as ‘other non-cancer’