Background
Methods
Setting, design, and participants
Data collection
Statistical analysis
Results
General and clinical characteristics
Variables | Categories | No | (%) |
---|---|---|---|
Child’s age (in years) | < 1 | 5 | 6.8 |
1–5 | 41 | 55.4 | |
6–11 | 17 | 23.0 | |
12–18 | 11 | 14.9 | |
Child’s sex | Male | 53 | 71.6 |
Female | 21 | 28.4 | |
Area of residence | Seoul | 21 | 28.4 |
Incheon, Gyeonggi | 29 | 39.2 | |
Others | 24 | 32.4 | |
Child’s insurance type | National health insurance | 64 | 86.5 |
Medical aid program | 10 | 13.5 | |
Family’s financial status | High | 9 | 12.2 |
Middle | 27 | 36.5 | |
Low | 38 | 51.4 | |
Primary caregiver | Mother | 66 | 89.2 |
Father | 2 | 2.7 | |
Grandparent | 2 | 2.7 | |
Othersa | 4 | 5.4 | |
Caregivers’ educational level | High school level or lower | 19 | 25.7 |
Bachelor’s degree or higher | 55 | 74.3 | |
Family typesb | Two-parents | 67 | 90.5 |
Single-parent | 6 | 8.1 | |
Primary diagnosis | Cardiovascular | 4 | 5.4 |
Airway/respiratory disease | 21 | 28.4 | |
Neuromuscular disease | 15 | 20.3 | |
Neurologic disease | 19 | 25.7 | |
Others | 15 | 20.3 | |
Physical capacityc | Able to walk | 16 | 21.6 |
Able to stand briefly | 23 | 31.1 | |
Able to sit independently | 24 | 32.4 | |
Able to sit with help | 30 | 40.5 | |
Able to roll over | 36 | 48.6 | |
Able to lift head | 42 | 56.8 | |
None (N/A) | 32 | 43.2 | |
Duration of technology-dependency | < 1 year | 21 | 28.4 |
1–3 years | 22 | 29.7 | |
≥ 3 years | 31 | 41.9 |
Respiratory support | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|
Nutrition support | O2 onlya | Tracheostomy without ventilator | Non-Invasive Ventilator | Tracheostomy and ventilator | Total | |||||
Oral feeding, n (%) | 5 | (6.8) | 12 | (16.2) | 7 | (9.5) | 9 | (12.2) | 33 | (44.6) |
Enteral feeding, n (%) | 13 | (17.6) | 3 | (4.1) | 2 | (2.7) | 18 | (24.3) | 36 | (48.6) |
Parenteral feeding, n (%) | 5 | (6.8) | 0 | (0.0) | 0 | (0.0) | 0 | (0.0) | 5 | (6.8) |
Total, n (%) | 23 | (31.1) | 15 | (20.3) | 9 | (12.2) | 27 | (36.5) | 74 | (100.0) |
Patterns of medical care at home
Patterns of healthcare utilization
Variables | Responses | n (%) or mean ± SD |
---|---|---|
Healthcare use within recent 6 months (days) a | All hospital days combined | 41.3 ± 45.6 |
Number of days visiting OPD | 18.2 ± 30.0 | |
Length of stay in the general ward | 17.0 ± 30.3 | |
Length of stay in the intensive care unit | 5.1 ± 20.6 | |
Number of days visiting ED | 1.5 ± 1.5 | |
Transportationb | Private car or private ambulance | 57 (78.1) |
Public transport (bus, subway, train, etc.) | 14 (19.2) | |
Public transportation support | 10 (13.7) | |
Travel time (from home to hospital) | < 1 h | 18 (24.3) |
≥1 h, < 3 h | 36 (48.6) | |
≥3 h | 20 (27.0) | |
Outpatient waiting time in the hospital | < 30 min | 12 (16.2) |
≥30 min, < 1 h | 27 (36.5) | |
≥1 h, < 2 h | 23 (31.1) | |
≥2 h | 12 (16.2) | |
Outpatient consultation time in the hospital (physician encounter time) | < 5 min | 29 (39.2) |
≥ 5 min, < 10 min | 32 (43.2) | |
≥10 min, < 15 min | 10 (13.5) | |
≥15 min | 3 (4.1) | |
Rehabilitation (within recent 3 months) | Both (at hospital and home) | 22 (29.7) |
At hospital | 19 (25.7) | |
At home | 4 (5.4) | |
None | 29 (39.2) | |
How to get medical adviceb | Ask acquaintance or self-help group | 55 (76.4) |
Contact hospital or medical staff | 43 (59.7) | |
Search Internet | 36 (50.0) | |
Search professional books | 5 (6.9) | |
Ways to contact the hospitalb (when the caregiver needs medical advice at home, within the last year) | Wait until planned OPD visit or admission | 27 (36.5) |
Never have asked to any hospital related staff | 26 (35.1) | |
Call to the ward where child was previously hospitalized | 22 (29.7) | |
Call to a pediatric ED | 7 (9.5) | |
Call to a palliative care team (if applicable) | 6 (8.1) | |
Others c | 3 (4.1) |
Care burden and difficulties perceived by caregivers
Variables | Mean ± SD | nc | (%) |
---|---|---|---|
Perceived care burdena | |||
Physical burden | 5.5 ± 1.4 | 61 | (82.4) |
Psychosocial burden | 5.1 ± 1.5 | 51 | (68.9) |
Financial burden | 4.9 ± 1.5 | 43 | (58.1) |
Specific difficultiesb | |||
No manpower to care for the child while the caregiver is resting | 6.0 ± 1.4 | 63 | (87.5) |
Need someone’s help to take care of the sick child | 6.0 ± 1.4 | 62 | (86.1) |
Lack of energy and time to do household chores | 6.9 ± 1.4 | 62 | (86.1) |
Always tired | 5.9 ± 1.4 | 61 | (84.7) |
Lack of energy and time to care for another child or family | 5.6 ± 1.8 | 57 | (79.2) |
Lack of support when travelling to hospital | 5.3 ± 2.0 | 56 | (77.8) |
Substantial amount of medical expenses | 5.5 ± 1.8 | 50 | (69.4) |
Lack of knowledge on how to take care of the sick child | 4.9 ± 1.8 | 44 | (61.1) |
Need help with some medical procedures at home | 4.6 ± 2.3 | 44 | (61.1) |
Hard to coordinate hospital appointments | 4.6 ± 2.2 | 42 | (58.3) |
Had to forgo some medical care due to financial reasons | 3.9 ± 2.4 | 31 | (43.1) |
Need help from healthcare professionals for care at home | 3.7 ± 2.2 | 28 | (38.9) |
Lack of knowledge on how to manage medical devices | 3.6 ± 2.0 | 26 | (36.1) |
Factors affecting the level of perceived care burden
Variables | Physical burden | Psychosocial burden | Financial burden | |||
---|---|---|---|---|---|---|
OR (95% CI) | p value | OR (95% CI) | p value | OR (95% CI) | p value | |
Child’s age (years) | ||||||
< 1 | Reference | Reference | Reference | |||
1–5 | 1.031 (0.101–10.53) | 0.979 | 1.818 (0.267–12.376) | 0.541 | 0.238 (0.024–2.317) | 0.216 |
6–11 | 1.167 (0.094–14.518) | 0.905 | 0.952 (0.125–7.275) | 0.962 | 0.458 (0.041–5.085) | 0.525 |
12–18 | 2.5 (0.124–50.444) | 0.550 | 1.778 (0.192–16.492) | 0.613 | 0.667 (0.051–8.639) | 0.756 |
Child’s sex | ||||||
Male | Reference | Reference | Reference | |||
Female | 0.569 (0.162–1.995) | 0.378 | 0.641 (0.221–1.86) | 0.414 | 0.722 (0.261–1.998) | 0.53 |
Area of residence | ||||||
Seoul (capital city) | Reference | Reference | Reference | |||
Incheon, Gyeonggi | 1.042 (0.207–5.237) | 0.960 | 1.969 (0.6–6.455) | 0.264 | 1.8 (0.577–5.619) | 0.312 |
Others | 0.5 (0.108–2.314) | 0.375 | 2.25 (0.635–7.973) | 0.209 | 1.833 (0.558–6.027) | 0.318 |
Insurance type | ||||||
National Health Insurance | Reference | Reference | Reference | |||
Medical aid | 2.077 (0.240–17.995) | 0.507 | 1.953 (0.381–10.02) | 0.422 | 3.314 (0.652–16.844) | 0.149 |
Financial status | ||||||
High | Reference | Reference | Reference | |||
Medium | 0.816 (0.136–4.898) | 0.824 | 1.9 (0.402–8.976) | 0.418 | 3.25 (0.569–18.579) | 0.185 |
Low | 2.429 (0.370–15.951) | 0.356 | 1.964 (0.443–8.713) | 0.375 | 9.8 (1.738–55.246) | 0.010 c |
Level of education, caregiver | ||||||
High school level or lower | Reference | Reference | Reference | |||
Bachelor’s degree or higher | 0.844 (0.206–3.458) | 0.813 | 1.032 (0.335–3.174) | 0.957 | 0.277 (0.081–0.940) | 0.039 |
Family types | ||||||
Two-parents | Reference | Reference | Reference | |||
Single-parent | 0.982 (0.104–9.246) | 0.987 | 0.851 (0.144–5.028) | 0.859 | 3.816 (0.422–34.463) | 0.233 |
Primary diagnosis | ||||||
Cardiovascular | Reference | Reference | Reference | |||
Airway/respiratory disease | 2.00 (0.153–26.187) | 0.597 | 0.833 (0.072–9.688) | 0.884 | 1.1 (0.13–9.339) | 0.930 |
Neuromuscular disease | 4.667 (0.223–97.497) | 0.321 | 2.167 (0.144–32.528) | 0.576 | 4.0 (0.388–41.228) | 0.244 |
Neurologic disease | 1.25 (0.101–15.499) | 0.862 | 0.370 (0.032–4.231) | 0.424 | 1.111 (0.129–9.605) | 0.924 |
Others | 0.917 (0.173–11.577) | 0.946 | 0.667 (0.054–8.161) | 0.751 | 1.143 (0.126–10.386) | 0.906 |
Physical capacity | ||||||
Gooda | Reference | Reference | Reference | |||
Poor | 3.02 (0.886–10.286) | 0.077 | 1.543 (0.55–4.328) | 0.410 | 1.632 (0.610–4.360) | 0.329 |
Level of technology-dependency | ||||||
Low dependency | Reference | Reference | Reference | |||
High dependencyb | 1.288 (0.316–5.256) | 0.724 | 0.577 (0.197–1.69) | 0.316 | 0.481 (0.17–1.361) | 0.168 |
Duration of technology-dependency | ||||||
Less than 1 year | Reference | Reference | Reference | |||
1–3 years | 1.406 (0.321–6.160) | 0.651 | 1.641 (0.453–5.943) | 0.451 | 1.32 (0.398–4.378) | 0.65 |
3 years or more | 2.109 (0.493–9.019) | 0.314 | 1.504 (0.465–4.864) | 0.495 | 2.31 (0.739–7.226) | 0.15 |