Of the 370 questionnaires administered, 363 questionnaires were returned (response rate 98.1%); 7 declined because they did not want to talk about their experiences. The mean age of the caregivers was 64.6 ± 11.5 years old. More than half of them were aged 61 years old and above. 35.5% of the caregivers received high school or higher education. Detailed socio-demographic information of the caregivers is described in Table 1.
Table 1 Characteristics of caregivers who completed the questionnaires (n=363)
Characteristics
|
n (%)
|
Characteristics
|
n (%)
|
Gender
|
|
Relationship with patient
|
|
Male
|
154(42.42)
|
Spouse
|
112(30.85)
|
Female
|
209(57.58)
|
Parent
|
151(41.60)
|
Age
|
|
Child
|
31(8.54)
|
≤50 years old
|
38(10.47)
|
Brother or sister
|
64(17.63)
|
51-60 years old
|
90(24.79)
|
Other Family relative
|
5(1.38)
|
61-70 years old
|
127(34.99)
|
Caring years
|
|
≥71 years old
|
108(29.75)
|
≤5 years
|
7(1.93)
|
Ethnic group
|
|
6-10 years
|
52(14.33)
|
Han
|
331(91.18)
|
>10 years
|
302(83.20)
|
Others
|
32(8.82)
|
Insurance
|
|
Education
|
|
Basic medical insurance for urban employee
|
221(60.88)
|
Primary school or below
|
36(9.92)
|
Residents’ basic medical insurance
|
104(28.65)
|
Middle school degree
|
121(33.33)
|
Others
|
38(10.47)
|
High school degree
|
129(35.54)
|
Number of chronic diseases
|
|
College degree
|
51(14.05)
|
No
|
4(1.10)
|
Bachelor degree
|
22(6.06)
|
One
|
242(66.67)
|
Master degree or above
|
4(1.10)
|
Two
|
69(19.01)
|
Religious or not
|
|
Three and above
|
48(13.22)
|
No
|
328(90.36)
|
Hours for caring patients per day
|
|
Yes
|
35(9.64)
|
<6 hours
|
173(47.66)
|
Marital status
|
|
6-12 hours
|
140(38.57)
|
Unmarried
|
11(3.03)
|
> 12 hours
|
50(13.77)
|
Married
|
299(82.37)
|
|
|
Divorced
|
17(4.68)
|
|
|
Widowed
|
33(9.09)
|
|
|
Others
|
3(0.83)
|
|
|
Employment status
|
|
|
|
Employed
|
123(33.88)
|
|
|
Retired
|
213(58.68)
|
|
|
Unemployed
|
26(7.16)
|
|
|
Others
|
1(0.28)
|
|
|
Twelve informal caregivers of schizophrenia patients from 6 CHSCs in urban districts were selected for interview. Only 10 caregivers were interviewed; and the other 2 declined with no reason. Most caregivers were either spouses (6/10, n=6) or children (3/10, n=3) of the patients. The average age of the caregivers was 65.43 ± 11.39 years old, while the average age of the schizophrenia patients was 47.07 ± 10.45 years old. The demographics of the patients and the caregivers are described in Table 2.
Table 2 Characteristics of interviewed caregivers and care recipients
Items
|
Caregivers (n=10)
|
Care recipient (n=10)
|
Mean age
|
65.43 ± 11.39 years old
|
47.07 ± 10.45 years old
|
Sex
Female
Male
|
7
3
|
2
8
|
Self-reported general health
Excellent/very good
Good
Fair
Poor
|
0
1
3
6
|
N/A
N/A
N/A
N/A
|
Relationship
Spouse
Child
Other family relative
|
6
3
1
|
N/A
N/A
N/A
|
Marital status
Married
Widowed
|
8
2
|
8
2
|
Education
Elementary school
Secondary school
Higher education
Disease status
Stable phase
Relatively stable phase
Unstable phase
|
1
5
4
N/A
N/A
N/A
|
3
3
4
6
2
2
|
Scale scores
The mean score of the scale was 27.33±6.45. The distributions of total scores and subscale scores are shown in Table 3.
Table 3 Distribution of SSRS scores (total scores and subscale scores) of caregivers
Scale
|
Mean ± SD
|
Minimum
|
Maximum
|
SSRS
|
27.33±6.45
|
12
|
46
|
Objective support
|
6.70±2.14
|
1
|
16
|
Subjective support
|
14.56±4.15
|
7
|
27
|
Support usage
|
6.07±1.92
|
3
|
11
|
Correlation analysis
There was no significant difference in the score by whether the caregiver was religious or not (P> 0.05). There were four factors positively correlated with the total SSRS score, i.e. age, education, marital status, and hours for caring patients per day (P<0.05). Correlation analysis between SSRS scores (total scores and subscale scores) and general characteristics of caregivers are shown in Table 4. An additional file shows this in more detail [see Additional file 1].
Table 4 Correlation analysis between SSRS scores (total scores and subscale scores) and potentially related factors
Factors
|
Total SSRS score
|
Objective support
|
Subjective support
|
Support usage
|
Gender
|
|
|
|
|
Male
|
27.05±6.27
|
6.77±2.16
|
14.47±4.03
|
5.81±1.78
|
Female
|
27.53±6.59
|
6.65±2.12
|
14.63±4.25
|
6.26±2.00
|
t
|
-0.708
|
0.559
|
-0.360
|
-2.237
|
P
|
0.479
|
0.577
|
0.719
|
0.026
|
Age
|
|
|
|
|
≤50 years old
|
29.08±6.11
|
7.08±2.19
|
15.68±4.38
|
6.32±1.69
|
51-60 years old
|
29.54±6.71
|
7.13±2.20
|
15.90±4.40
|
6.51±1.96
|
61-70 years old
|
26.33±6.41
|
6.36±2.15
|
14.31±3.97
|
5.65±1.97
|
≥71 years old
|
26.03±5.84
|
6.60±1.99
|
13.33±3.69
|
6.09±1.81
|
F
|
7.304
|
2.812
|
7.742
|
3.884
|
P
|
0.000
|
0.039
|
0.000
|
0.009
|
Education
|
|
|
|
|
Primary school or below
|
26.17±5.45
|
6.61±2.22
|
13.47±3.08
|
6.08±2.18
|
Middle school degree
|
26.09±6.17
|
6.29±2.05
|
14.18±4.05
|
5.62±1.81
|
High school degree
|
27.95±6.92
|
6.93±2.21
|
14.80±4.42
|
6.22±1.94
|
College degree
|
28.08±6.13
|
6.82±1.94
|
14.80±4.08
|
6.45±1.82
|
Bachelor degree
|
30.73±6.43
|
7.64±2.28
|
16.23±4.54
|
6.86±1.83
|
Master degree or above
|
26.50±3.11
|
5.75±1.26
|
15.75±4.03
|
5.00±0.82
|
F
|
2.804
|
2.287
|
1.601
|
2.984
|
P
|
0.017
|
0.046
|
0.159
|
0.012
|
Marital status
|
|
|
|
|
Unmarried
|
27.91±5.05
|
6.73±1.74
|
14.45±3.14
|
6.73±1.95
|
Married
|
27.94±6.41
|
6.84±2.08
|
15.04±4.16
|
6.07±1.91
|
Divorced
|
23.53±8.32
|
5.53±3.17
|
12.24±4.55
|
5.76±2.33
|
Widowed
|
23.52±4.30
|
5.97±1.85
|
11.45±2.43
|
6.09±1.79
|
Others
|
27.33±4.04
|
7.67±2.08
|
14.67±2.08
|
5.00±1.73
|
F
|
5.283
|
2.753
|
7.417
|
0.662
|
P
|
0.000
|
0.028
|
0.000
|
0.619
|
Relationship with patient
|
|
|
|
|
Spouse
|
27.58±5.54
|
6.78±2.06
|
14.90±4.33
|
5.90±1.91
|
Parent
|
26.66±6.06
|
6.50±1.95
|
13.95±3.83
|
6.20±2.04
|
Child
|
26.48±6.54
|
6.84±2.31
|
13.87±4.05
|
5.77±1.56
|
Brother or sister
|
28.55±6.72
|
6.92±2.57
|
15.48±4.27
|
6.14±1.70
|
Other Family relative
|
31.40±10.24
|
7.20±2.28
|
17.60±5.90
|
6.60±3.05
|
F
|
1.665
|
0.628
|
2.718
|
0.684
|
P
|
0.158
|
0.643
|
0.030
|
0.604
|
Insurance
|
|
|
|
|
Basic medical insurance for employees
|
27.86±6.79
|
6.86±2.15
|
15.00±4.30
|
6.00±1.98
|
Residents’ basic medical insurance
|
26.88±5.67
|
6.72±2.08
|
14.04±3.82
|
6.12±1.67
|
Others
|
25.47±6.17
|
5.74±2.00
|
13.45±3.87
|
6.29±2.18
|
F
|
2.584
|
4.543
|
3.441
|
0.404
|
P
|
0.077
|
0.011
|
0.033
|
0.668
|
Number of chronic diseases
|
|
|
|
|
No
|
27.50±11.56
|
6.75±1.89
|
14.75±7.89
|
6.00±2.94
|
One
|
27.80±6.41
|
6.81±2.19
|
14.83±4.11
|
6.15±1.92
|
Two
|
27.20±6.23
|
6.68±1.94
|
14.67±4.12
|
5.86±1.94
|
Three and above
|
25.10±6.27
|
6.15±2.13
|
13.00±3.88
|
5.96±1.85
|
F
|
2.362
|
1.314
|
2.662
|
0.478
|
P
|
0.071
|
0.270
|
0.048
|
0.698
|
Hours for caring patients per day
|
|
|
|
|
<6 hours
|
28.03±6.73
|
6.65±2.30
|
15.15±4.33
|
6.23±2.00
|
6-12 hours
|
27.31±6.04
|
6.89±1.80
|
14.42±3.99
|
6.00±1.68
|
> 12 hours
|
24.94±6.15
|
6.36±2.39
|
12.90±3.55
|
5.68±2.22
|
F
|
4.529
|
1.217
|
5.974
|
1.743
|
P
|
0.011
|
0.297
|
0.003
|
0.176
|
Ordinal regression analysis
We put gender, age, education, marital status, relationship with patient, main medical payment way, number of chronic diseases, and hours for caring patients per day into the regression models. The total SSRS score and the three subscale scores were dependent variables, respectively. The results revealed that insurance was a predictor of the SSRS scores. More details are shown in Additional file 1 (see Table 5).
Table 5 Ordinal regression analysis of social supports for caregivers
Independent variable
|
B
|
Wald
|
P
|
95% CI
|
Gender
|
|
|
|
|
Male
|
0.379
|
1.055
|
0.304
|
-0.344~1.101
|
Female
|
0a
|
|
|
|
Age
|
|
|
|
|
≤50 years old
|
0.971
|
1.780
|
0.182
|
-0.455~2.397
|
51-60 years old
|
0.993
|
2.867
|
0.090
|
-0.156~2.143
|
61-70 years old
|
-0.257
|
0.278
|
0.598
|
-1.210~0.697
|
≥71 years old
|
0a
|
|
|
|
Education
|
|
|
|
|
Primary school or below
|
1.402
|
0.528
|
0.468
|
-2.381~5.185
|
Middle school degree
|
0.220
|
0.014
|
0.906
|
-3.418~3.858
|
High school degree
|
1.066
|
0.333
|
0.564
|
-2.558~4.690
|
College degree
|
0.891
|
0.223
|
0.637
|
-2.810~4.592
|
Bachelor degree
|
2.478
|
1.638
|
0.201
|
-1.317~6.272
|
Master degree or above
|
0a
|
|
|
|
Marital status
|
|
|
|
|
Married
|
-1.526
|
0.481
|
0.488
|
-5.837~2.785
|
Divorced
|
-0.103
|
0.003
|
0.959
|
-3.986~3.781
|
Widowed
|
-1.843
|
0.775
|
0.379
|
-5.945~2.260
|
Others
|
-0.676
|
0.110
|
0.741
|
-4.682~3.329
|
Unmarried
|
0a
|
|
|
|
Relationship with patient
|
|
|
|
|
Spouse
|
-1.812
|
2.138
|
0.144
|
-4.242~0.617
|
Parent
|
-1.999
|
2.545
|
0.111
|
-4.456~0.457
|
Child
|
-2.395
|
3.104
|
0.078
|
-5.059~0.269
|
Brother or sister
|
-0.955
|
0.610
|
0.435
|
-3.351~1.442
|
Other Family relative
|
0a
|
|
|
|
Insurance
|
|
|
|
|
Basic medical insurance for employees
|
1.310
|
5.803
|
0.016
|
0.244~2.375
|
Residents’ basic medical insurance
|
1.228
|
4.388
|
0.036
|
0.079~2.377
|
Others
|
0a
|
|
|
|
Number of chronic diseases
|
|
|
|
|
No
|
-0.080
|
0.002
|
0.964
|
-3.548~3.570
|
One
|
0.523
|
1.081
|
0.298
|
-0.463~1.547
|
Two
|
0.383
|
.434
|
0.510
|
-0.757~1.524
|
Three and above
|
0a
|
|
|
|
Hours for caring patients per day
|
|
|
|
|
<6 hours
|
0.196
|
0.146
|
0.703
|
-0.811~1.203
|
6-12 hours
|
0.261
|
0.253
|
0.615
|
-0.757~1.280
|
>12 hours
|
0a
|
|
|
|
CI: confidence interval
The caregivers’ awareness and utilization of social supports
The top three items of social support awareness were “patients could apply for disability certificate” (96.14%),“patients could obtain free psychotropic medications” (93.66%), and “patients could obtain regular medical examination once a year in the CHSCs (or stations) ” (90.08%). The top three items of utilization were “patients could apply for disability certificate” (90.08%), “patients could obtain free psychotropic medications” (83.75%), and “patients could use the public transport and visit scenic spots for free” (76.58%). More details are shown in Table 6.
Table 6 The awareness and utilization status of social supports for caregivers
Items
|
Awareness rate (n%)
|
Utilization rate (n%)
|
Social security
|
|
|
Patients could apply for disability certificate.
|
349(96.14)
|
327(90.08)
|
Patients could use public transport and visit scenic spots for free.
|
295(81.27)
|
278(76.58)
|
For Beijing residents, patients could apply for basic medical insurance.
|
189(52.07)
|
126(34.71)
|
For Beijing residents, patients could apply for pension subsidy.
|
147(40.50)
|
95(26.17)
|
Day care centers.
|
176(48.48)
|
49(13.50)
|
Single-child disabled family could apply for special support policies in Beijing.
|
54(14.88)
|
21(5.79)
|
Patients could apply for social insurance subsidy for disabled persons in urban areas.
|
46(12.67)
|
21(5.79)
|
Patients could participate in rehabilitation programs.
|
97(26.72)
|
21(5.79)
|
Patients could obtain financial assistance in rehabilitation programs.
|
54(14.88)
|
11(3.03)
|
Patients can participate in vocational training for disabilities.
|
68(18.73)
|
16(4.41)
|
Patients could obtain corresponding subsidies during vocational training.
|
47(12.95)
|
8(2.20)
|
Patients could be admitted to stay in a rehabilitation institution organized by the district.
|
58(15.98)
|
15(4.13)
|
Patients could obtain corresponding subsidies during their stay in a rehabilitation institution organized by the district.
|
29(7.99)
|
11(3.03)
|
Patients could apply for the reduction of individual income tax.
|
41(11.29)
|
11(3.03)
|
Patients could obtain tax incentives for Beijing disabled.
|
43(11.85)
|
9(2.48)
|
Patients could be admitted to stay in Beijing social welfare institutions for the disabled.
|
44(12.12)
|
10(2.75)
|
Patients could obtain corresponding subsidies in Beijing social welfare institutions for the disabled.
|
29(7.99)
|
12(3.31)
|
Patients could get employment support in Beijing.
|
58(15.98)
|
3(0.83)
|
Patients could get support when they starting a business in Beijing.
|
47(12.95)
|
4(1.10)
|
Financial support
|
|
|
Patients could obtain disability living allowance in Beijing (100 RMB / month).
|
288(79.34)
|
262(72.18)
|
Patients could obtain Beijing residents' home disability service (100 RMB / month).
|
219(60.33)
|
158(43.53)
|
Patients could obtain minimum living allowances for Beijing residents.
|
283(77.96)
|
123(33.88)
|
Patients could apply for basic living allowance for severely disabled families.
|
108(29.75)
|
54(14.88)
|
Patients who lived in dire poverty could get support.
|
112(30.85)
|
49(13.50)
|
Medical support
|
|
|
Patients could obtain free psychotropic medications.
|
340(93.66)
|
304(83.75)
|
Patients could obtain regular medical examination once a year in the community health service center (or station).
|
327(90.08)
|
230(63.36)
|
Patients could obtain support to reduce the burden of medical expenses.
|
199(54.82)
|
151(41.60)
|
Severe patients in poverty could get psychiatric diagnosis and treatment subsidy.
|
109(30.03)
|
76(20.94)
|
Education support
|
|
|
Patient’s children could obtain subsidies when be educated.
|
46(12.67)
|
20(5.51)
|
Living conditions support
|
|
|
Patients or their families are supported by welfare guarantees to improve living conditions.
|
115(31.68)
|
30(8.26)
|
Qualitative findings
Two dominant themes emerged from the insights of the caregivers: the support obtained, and further needs for social supports.
The support obtained
Three subcategories of support obtained were identified, including medical, financial, and information support. The interviewees expressed that external financial resources like medical insurance and free medication helped to alleviate family economic pressure; information support and mutual support groups organized by community helped to alleviate psychological pressure of the caregivers. However, these types of supports were sometimes unavailable for caregivers.
My father received 710RMB basic living allowance and 100RMB subsidy for disabled per month. A half of our house rent is paid by the government. The medications and health examinations are free for him. These have eased our financial burden to a large extent. (Caregiver 1)
The community health service center provides health education for the caregivers, focusing on the symptoms and medications of mental patients. (Caregiver 8)
I have no time to participate the mutual support group. Besides taking care of the patient, I have to work. (Caregiver 10)
Further needs for social supports
Three subcategories of further needs for social supports were identified, including more financial support, being respected, and affordable rehabilitation institutions. The interviewees expressed that more types of free medications should be provided by the government and coverage of healthcare insurance for patients should be broadened; a non-discriminatory environment around schizophrenia patients should be created; and rehabilitation institutions should be affordable for schizophrenia patients.
The treatment fee for patient is too expensive. We want to get more free medical service for patients. (Caregiver 5)
Someone called my son idiot. This made me so sad. He should be treated fairly. (Caregiver 4)
The patients’ daily life was taken care of by doctors and nurses in rehabilitation institutions. It is good, but we can’t afford it. (Caregiver 10)