Patient and family caregiver characteristics
| Patient (n=30) | Caregiver (n=25) | |
| Characteristic | Number (%) | Number (%) |
| Age mean years (SD, range) | 58 (SD 16.2, 19–85) | 55 (SD 15.1, 24–80) |
| Gender | ||
| Woman | 12 (40.0) | 17 (68.0) |
| Man | 18 (60.0) | 8 (32.0) |
| Relationship to caregiver (Your caregiver is your…) | ||
| Spouse/Common-law partner | 14 (46.7) | N/A |
| Parent | 4 (13.3) | N/A |
| Sibling | 4 (13.3) | N/A |
| Adult child | 2 (6.7) | N/A |
| No caregiver | 5 (16.7) | N/A |
| More than one caregiver | 1 (3.3) | N/A |
| Relationship to patient (You are the patient’s…) | ||
| Spouse/Common-law partner | N/A | 11 (44.0) |
| Parent | N/A | 4 (16.0) |
| Sibling | N/A | 2 (8.0) |
| Adult child | N/A | 8 (32.0) |
| Marital status | ||
| Single | 8 (26.7) | 5 (20.0) |
| Married/Common-law/Living with partner | 15 (50.0) | 18 (72.0) |
| Divorced | 6 (20.0) | 2 (8.0) |
| Widowed | 1 (3.3) | 0 (0.0) |
| Living arrangement | ||
| Living alone | 7 (23.3) | 0 (0.0) |
| Living with patient/Support person | 21 (70.0) | 20 (80.0) |
| Other | 2 (6.7) | 5 (20.0) |
| Cultural background* | ||
| African | 0 | 1 |
| European | 18 | 11 |
| East Asian | 2 | 0 |
| South Asian | 4 | 6 |
| South East Asian | 1 | 3 |
| First Nations or Indigenous | 4 | 2 |
| Hispanic or Latinx | 0 | 1 |
| Other | 2 | 2 |
| Community size | ||
| Rural community with fewer than 1000 residents | 0 (0.0) | 1 (4.0) |
| Small town with between 1000 and 29 999 residents | 2 (6.7) | 0 (0.0) |
| Medium-sized city with 30 000 to 99 999 residents | 7 (23.3) | 8 (32.0) |
| Large city with 100 000 or more residents | 21 (70.0) | 16 (64.0) |
| Highest level of education completed | ||
| Some secondary/high school | 9 (30.0) | 1 (4.0) |
| Completed secondary/high school | 3 (10.0) | 5 (20.0) |
| Some college or university | 8 (26.7) | 2 (8.0) |
| Completed a graduate or professional degree | 8 (26.7) | 16 (64.0) |
| You do not have an option that suits me | 1 (3.3) | 1 (4.0) |
| No response provided | 1 (3.3) | 0 (0.0) |
| Employed before critical illness | ||
| Yes | 14 (46.7) | 18 (72.0) |
| No | 16 (53.3) | 7 (28.0) |
| Additional sources of income before critical illness | ||
| Employment insurance | 1 (3.3) | 3 (12.0) |
| Social assistance | 5 (16.7) | 1 (4.0) |
| Disability benefits | 8 (26.7) | 1 (4.0) |
| Pension (includes any type/source of pension) | 8 (26.7) | 6 (24.0) |
| Employed now | ||
| Yes | 4 (13.3) | 14 (56.0) |
| No | 26 (86.7) | 11 (44.0) |
| Additional sources of income now | ||
| Employment insurance | 1 (3.3) | 3 (12.0) |
| Social assistance | 5 (16.7) | 1 4.0) |
| Disability benefits | 9 (30.0) | 2 (8.0) |
| Pension (includes any type/source of pension) | 11 (36.7) | 8 (32.0) |
| Difficulty living on total household income before critical illness | ||
| Not at all difficult | 15 (50.0) | 16 (64.0) |
| Somewhat difficult | 8 (26.7) | 6 (24.0) |
| Difficult | 6 (20.0) | 3 (12.0) |
| No response provided | 1 (3.3) | 0 (0.0) |
| Difficulty living on total household income now | ||
| Not at all difficult | 10 (33.3) | 10 (40.) |
| Somewhat difficult | 8 (26.7) | 8 (32.0) |
| Difficult | 11 (36.7) | 6 (24.0) |
| No response provided | 1 (3.3) | 1 (4.0) |
| Level of activity now | ||
| Usual activity—no problem | 0 (0.0) | 20 (80.0) |
| Mild change—able to continue normal activity | 2 (6.7) | 2 (8.0) |
| Change in usual activity—bed rest <50% of waking hours | 9 (30.0) | 1 (4.0) |
| In bed/chair >50% waking hours | 11 (36.7) | 2 (8.0) |
| Bed/Chair ridden or unable to care for self | 7 (23.3) | 0 (0.0) |
| No response provided | 1 (3.3) | 0 (0.0) |
| Access to home care support now† | ||
| Respite | 5 | 2 |
| Home care registered nurse calls | 3 | 2 |
| Home care registered nurse visits | 4 | 3 |
| Support worker visits (eg, bathing) | 5 | 1 |
| Pharmacy delivers medications | 5 | 3 |
| Pharmacy bubble packs medications | 5 | 3 |
| Paid private home support | 0 | 2 |
| Equipment (eg, wheelchair, walker, bed or mattress) | 15 | 9 |
| Other | 3 | 0 |
*One patient participant and caregiver participant each identified two cultural background categories.
†Percentages do not apply as participants were asked to select ‘all that apply’.
N/A, not available.