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 disease
|
|
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 (see Table 1 for additional characteristics). 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
0
3
7
|
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
|
9
1
|
8
2
|
Education
Elementary school
Secondary school
Higher education
Disease status
Stable phase
Relatively stable phase
Unstable phase
|
0
6
4
N/A
N/A
N/A
|
2
3
5
5
3
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
|
Ethnic group
|
|
|
|
|
Han
|
27.35±6.46
|
6.74±2.18
|
14.53±4.12
|
6.08±1.89
|
Others
|
27.03±6.53
|
6.31±1.60
|
14.84±4.52
|
5.88±2.24
|
t
|
0.269
|
1.075
|
-0.405
|
0.590
|
P
|
0.788
|
0.283
|
0.686
|
0.556
|
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
|
Religious or not
|
|
|
|
|
No
|
27.34±6.30
|
6.76±2.12
|
14.57±4.07
|
6.01±1.87
|
Yes
|
27.20±7.88
|
6.17±2.26
|
14.46±4.93
|
6.57±2.29
|
t
|
0.120
|
1.543
|
0.153
|
-1.395
|
P
|
0.904
|
0.124
|
0.879
|
0.171
|
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
|
Employment status
|
|
|
|
|
Employed
|
28.45±6.64
|
6.98±2.12
|
15.21±4.48
|
6.25±1.81
|
Retired
|
26.85±6.41
|
6.60±2.12
|
14.28±3.97
|
5.97±2.00
|
Unemployed
|
25.69±5.20
|
6.08±2.17
|
13.65±3.83
|
5.96±1.78
|
Others
|
34.00
|
10.00
|
17.00
|
7.00
|
F
|
2.576
|
2.455
|
1.867
|
0.677
|
P
|
0.054
|
0.063
|
0.135
|
0.567
|
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
|
Caring years
|
|
|
|
|
≤5 years
|
27.14±7.38
|
7.14±2.34
|
13.71±4.57
|
6.29±1.50
|
6-10 years
|
26.44±6.55
|
6.13±2.35
|
13.96±4.03
|
6.35±2.02
|
>10 years
|
27.50±6.45
|
6.78±2.09
|
14.69±4.18
|
6.02±1.91
|
F
|
0.591
|
2.217
|
0.824
|
0.672
|
P
|
0.554
|
0.110
|
0.439
|
0.512
|
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
|
|
|
|
|
None
|
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 disease
|
|
|
|
|
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 supports 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 the 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)
|
Warm home.
|
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 labor programs.
|
97(26.72)
|
21(5.79)
|
Patients could obtain financial assistance during participating in in rehabilitation labor 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 they 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 during staying 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 bucks / month).
|
288(79.34)
|
262(72.18)
|
Patients could obtain Beijing residents' home disability service (100 bucks / 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)
|
Poverty severe patients 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 financial support, medical support, and information and education support. The caregivers expressed that external financial resources including medical insurance and free medication were provided to alleviate family economic pressure to a certain extent; medical resources from society alleviated the caregiver’s burdens; health education and mutual support groups organized by community created opportunities for the caregivers to communicate with others, and mutual support groups help to alleviate psychological pressure of the caregivers. However, these types of support were sometimes unavailable for some caregivers.
We received 2200RMB subsidies per month from the government. The medications and the health examinations for him are free. (Caregiver 1)
If the patient has a sudden relapse, the general practitioners, and our neighbors would help me to prevent his violent behavior and take him to the hospital. (Caregiver 6)
The mutual support group is good, but I have no time to attend. I have to look after the patient... (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. Every interviewee hoped that the government could provide more types of free medications and expand health insurance coverage for patients; they indicated that families with schizophrenia patients are more vulnerable to discrimination in China, and hoped to create a non-discriminatory environment around them; and they agreed that more affordable rehabilitation institutions should be opened for schizophrenia patients.
My son does not have a job. We depend on my husband’s retirement pension… the treatment fees for patient are too expensive. We hope to get more free medical service for patients. (Caregiver 5)
Sometime they call my son idiot and even beat him. I hope schizophrenia patients should be fairly treated. (Caregiver 4)
I heard of Daxing Farming Therapy Base. Patients could do agriculture work or take exercise there. The patients’ daily life was taken care of by doctors and nurses. We would like to take the patient there, but we can’t afford it. (Caregiver 10)