Home care needs assessment among caregivers of children and adolescents with osteogenesis imperfecta: a cross-sectional study

Table 1 Demographic characteristics (N = 142)

Variable	n	%
Patients
Sex
Male	77	54.2
Female	65	45.8
Age, y
3–6	53	37.3
7–12	51	35.9
13–17	38	26.8
Place of residence
Urban/suburban	62	43.7
Rural	80	56.3
Self-care ability*
Limited self-care ^a	70	49.3
Complete/basic self-care ^b	72	50.7
Fractures in the past year
≤ 1	74	52.1
> 1	68	47.9
Family history
Yes	44	31.0
No	98	69.0
Illness duration, y
≤ 2	15	10.6
2–4	34	23.9
≥ 4	93	65.5
Schooling status
At school	77	54.2
At home	65	45.8
Health insurance
Medical insurance for urban employees	9	6.3
Medical insurance for urban and rural residents	110	77.5
Self-pay	23	16.2
Subsistence allowances
Yes	40	28.2
No	102	71.8
Disability subsidies
Yes	51	35.9
No	91	64.1
Caregiver
Identity
Father	46	32.4
Mother	87	61.3
Sibling/missing data	9	6.3
Marital status
Unmarried/divorced/widowed	23	16.2
Married	119	83.8
Education level
Below middle school	33	23.2
Middle school	71	50.0
Above middle school	38	26.8
Monthly household income, RMB
low income (≤ 2000)	47	33.1
middle income (2001–5000)	57	40.1
higher income (5001–10,000)	18	12.7
high income (> 10,000)	20	14.1

*Self-care is defined as essential tasks of taking care of oneself such as eating, dressing, grooming, and management of oral and toilet hygiene. ^a Limited self-care: completely unable to care for oneself/need uninterrupted assistance from another person; ^b Complete/basic self-care: completely able to care for oneself/able to care for oneself but it is laborious and time-consuming/need occasional assistance from another person

ISSN: 2731-4553