Table 1 Demographic characteristics of caregivers and CMC (Phases 1, 2, and 3)
From: Co-creation and evaluation of online care maps for children with medical complexity
Caregivers | Phase 1: Design and Development | Phase 2: Usability Testing | Phase 3: Feasibility Testing |
|---|---|---|---|
(n = 16) | (n = 10) | (n = 37) | |
n (%) | n (%) | n (%) | |
Role | Â | Â | Â |
Mother | 12 (75) | 6 (60) | 30 (81) |
Father | 4 (25) | 4 (40) | 7 (19) |
Age | Â | Â | Â |
20–40 | 10 (62) | 7 (70) | 19 (51) |
> 40 | 6 (38) | 3 (30) | 16 (43) |
Did not answer | 0 | 0 | 2 (5) |
Primary language | Â | Â | Â |
English | 13 (82) | 7 (70) | 34 (91) |
French | 1 (6) | 1 (10) | 0 |
Mandarin | 0 | 0 | 1 (3) |
Turkish | 0 | 1 (10) | 0 |
Urdu | 1 (6) | 1 (10) | 1 (3) |
Did not answer | 1 (6) | 0 | 1 (3) |
Ethnic background | Â | Â | Â |
Caribbean | 1 (6) | 1 (10) | 3 (8) |
Central Asian/Middle Eastern | 0 | 1 (10) | 0 |
East/South Asian | 1 (6) | 1 (10) | 3 (8) |
European | 10 (63) | 6 (60) | 25 (67) |
Latin/Central/South American | 0 | 0 | 1 (3) |
Other | 4 (25) | 1 (10) | 2 (5) |
Prefer not to answer | 0 | 0 | 3 (8) |
Marital status | Â | Â | Â |
Single or divorced | 1 (6) | 2 (20) | 4 (11) |
Married or common law | 15 (94) | 8 (80) | 30 (81) |
Prefer not to answer | 0 | 0 | 3 (8) |
Education | Â | Â | Â |
Some/completed high school | 1 (6) | 0 | 2 (5) |
Some/completed postsecondary | 8 (50) | 9 (90) | 21 (57) |
Professional/graduate degree | 7 (44) | 1 (10) | 13 (35) |
Prefer not to answer | 0 | 0 | 1 (3) |
Employment status | Â | Â | Â |
Employed full-time/part-time | 9 (56) | 6 (60) | 19 (51) |
Primary caregiver/unemployed | 5 (31) | 4 (40) | 15 (41) |
Other | 2 (13) | 0 | 2 (5) |
Prefer not to answer | 0 | 0 | 1 (3) |
Annual household income | Â | Â | Â |
$0 - $59,999 | 3 (19) | 2 (20) | 9 (24) |
$60,000 - $89,999 | 2 (12) | 4 (40) | 6 (16) |
> $90,000 | 10 (63) | 3 (30) | 18 (49) |
Prefer not to answer | 1 (6) | 1 (10) | 4 (11) |
CMC Population | (n = 16) | (n = 8) | (n = 37) |
| Â | n (%) | n (%) | n (%) |
Sex | Â | Â | Â |
Male | 8 (50) | 5 (62) | 23 (62) |
Number of diagnoses | Â | Â | Â |
1–5 | 2 (12) | 1 (13) | 2 (5) |
6–10 | 4 (25) | 4 (50) | 19 (51) |
11–15 | 10 (63) | 2 (25) | 15 (41) |
> 15 | 0 | 1 (13) | 1 (3) |
Number of medications | Â | Â | Â |
1–10 | 8 (50) | 3 (38) | 15 (41) |
11–20 | 6 (38) | 3 (38) | 19 (51) |
21–30 | 2 (12) | 2 (25) | 3 (8) |
Number of technologies | Â | Â | Â |
< 5 | 7 (44) | 1 (13) | 11 (30) |
5–10 | 9 (56) | 6 (75) | 19 (51) |
11–15 | 0 | 1 (13) | 7 (19) |
Number of CMC with technology | Â | Â | Â |
Feeding technology1 | 13 (81) | 8 (100) | 31 (84) |
Respiratory technology2 | 9 (56) | 5 (63) | 22 (59) |
Vascular access3 | 4 (25) | 2 (25) | 4 (11) |
Mobility device4 | 7 (44) | 6 (75) | 30 (81) |
Communication device5 | 3 (19) | 1 (13) | 5 (14) |
Other invasive technology6 | 0 | 0 | 1 (3) |
Number of sub-specialists | Â | Â | Â |
< 5 | 1 (6) | 1 (13) | 1 (2) |
5–10 | 12 (75) | 3 (37) | 18 (49) |
11–15 | 3 (19) | 4 (50) | 18 (49) |